A Newbie to this site

[Hope]

Hello,Everyone!
I just found this site - and I'm looking forward to getting to know you, share stories, get advice! My husband of 37 years was diagnosed about 5 years ago. Disease has taken almost everything from him - as he's totally dependent on me for just about everything.
He feels this illness has taken his life. I try to let him know that this illness is one part of his life - but there is still a lot more. I'm sympathetic and empathetic to what he's dealing with (I'm dealing with it too!) but I want him to know that life is NOT over.
So, I'm here and I'll visit as frequently as I can. Take care-
Hope

[topfrog56]

Welcome, Hope!
I am a Parkinson's patient of 5 yrs myself (diagnosed 3 yrs ago) and I have found this site to be very encouraging. There are so many wonderful people posting here, patients and caregivers alike. Perhaps your husband would be encouraged by reading posts by folks with PD and hearing about all the great stuff they do. As you said, PD is a facet of our lives, not the whole picture. Yes, life has changed, but it is a wonderful life still - just a different reality. I am so thankful for all that I can do - sewing, gardening, writing, playing with the critters, doing my wife and mother "thing", etc. I am just slower than I used to be. Kudos to you as a caregiver - you are a blessing to your husband and a hero for your loving attitude. Visit this forum often - there are some well-experienced caregivers here who will encourage and bolster you - they are great folks!

Glad to "meet" you, Elizabeth

[heather]

Hi
http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcome15hope.gif

please can you tell where you live, as this helps if you need advice, as things differer from country to country, and as you will notice we are a mixed bunch on hear ;):D, so there is always some one around to help, so look forward to you posting/chatting on hear, we are a crazy bunch, but also take life etc seriously
I'm Heather, a carer for Jim who has a illness that mimics PD
for over 12 years
The last 5 years he has become fully dependent on me like your husband {we are celebrating our 40 years married this August}

I have quickly learned over the years, there is no point in feeling sorry for us, as time flies by, and we would have lost the good time we have had and still having
The hardest thing about Jim illness is that he doesn't speak
so i always get the last word
http://i10.photobucket.com/albums/a126/maesisaf/mixedhaahaaATT000384449.gif

I also like you believe that they don't understand you/we are going through it as well, and for us it is much harder, to stay strong, and some days even posative, I find our family and friends are very good at play ostrich :eek::eek:

http://i10.photobucket.com/albums/a126/maesisaf/hugs0ee.gif

[Hope]

Wow, Heather!
Thanks for your post. Is that a picture of you??? Are you a model???
I love the monkey! Put a big smile on my face!
I'm excited to get to know you and the others.
You asked where I live; we are in Ohio.
This is a good place to be - I'm glad I found you and the others!!!
We had a good day today; that's not always the case. But today was. I was able to get out of the house by myself and get a haircut. My daughter was here - caring for her Dad so I could step out. What a difference it made in my life today! I was as happy as a lark. Then, I came home and took over. I took him to the YMCA - where he exercised for over an hour and a half. While I mowed grass, I gave him a glass of wine and his puzzle book and he sat outside and enjoyed the fresh air.
I wish every day could go as smoothly as this one! Guess I should be grateful for the ones we get.
Take care. I hope all is well with you and Everyone Else today! Hope

[Hope]

Hi! It's good to meet you, too, Elizabeth! Your advice about having my husband read posts of people dealing with PD is a good one. He has trouble reading - but I know I could read to him. We tried this a while ago - not this forum, another one. It wasn't so good. Hardly anyone wrote. How is this site for people sharing with others with PD??? Or, if you know of another site you really like, please send it my way.
You sound really active. I'm so glad you have so many interests. That's one of the problems I'm having with my husband. Other than doing Sudoku puzzles and another kind of puzzle book - he isn't really interested in things anymore. He used to do all sorts of things with his hands - made a grandfather clock, wooden picture frames, wire-art, a Tiffany lamp, etc. He was great at these! But he has lost most of his fine motor - so all of these things are out. The only thing I can think of is painting and he says he's not interested. Reading is hard for him. Speech is pretty much gone. Balance is really bad. He doesn't stand without me at his side. Same for walking (unless he's using a walker).
Any ideas??? Anyone?? He'll soon retire - and I'd like to be able to find a couple of things for him to do - creative things. I've checked out all of the craft stores, told the salespeople our dilemma - and no one has offered any ideas.
Take care! It is so good getting to know you! Hope

[topfrog56]

Hello again!

Hope, you are aptly named! It must be so hard to stay cheerful in the face of all the changes in your life. I'm glad you got to get out and about today - I hope it was a beautiful spring day with flowers everywhere.

I've been thinking about your request for hobby/pastime ideas for your husband. I can still use my hands well (sometimes painfully, though) and while my balance is not terrific, I manage by myself. I have tried to come up with ideas for myself, for when my abilities deteriorate, and I find it very challenging, so I can begin to understand your frustration. My best guess for myself is to increase the scale of what I do now - larger-sized projects for bigger, less accurate motions? I think I may do some large-size paper mache things - I love the gooey feel of the starchy newspaper!! (can you tell I worked with preschool children for a million years?). What about a little container gardening? All my tomatoes, etc. are in pots, so I don't have to bend - I could sit in a chair, actually. I don't need to do much with the plants, but I enjoy watering and just checking out their progress every morning - it is very peaceful.

One other thing... have you considered getting a Wii? I am fairly dreadful at it, but my lack of coordination makes for some pretty funny matches with my husband! The one game I am a pro at is bowling!! All I have to do is move one arm.
Your husband might be frustrated by the Wii if he is a very competitive person, but if he is more laid-back, you two might have great fun together. It might be a great diversion for you, too.

I hope you don't find these ideas too off the wall - I am kind of a quirky sort.... maybe the southern California sun has gotten to me!

Wishing you another wonderful day and a Happy Mother's Day, too!

Elizabeth

[Hope]

Elizabeth,
You sound absolutely terrific. What a kind, warm person you are! Such great ideas. So, you worked with preschoolers? I love it! I work with second graders - and I love them to death! I've worked with K-6th graders and have enjoyed each grade as much as the next. These little ones are SO cute! They keep a smile on my face.
All the things you do - amazing. I think he'd have trouble with the gardening. Even putting a spoon into a bowl to take out something is hard. I don't see him using any small gardening tools - and I think if he put his hand in soil, the soil would be all over the floor. Paper mache - although it sounds fun - would be such a disaster with him, I can't tell you!!!! I DO like the idea of a Wii. Aren't they terribly expensive? I'll have to find out more about it. (He did try it in PT, but he was too slow. She had him try boxing, tennis, baseball. He missed everything. But I hear there is an exercise program that might be good for him!)
I also want something he can do WITHOUT me. When he's retired, he'll be home alone (we think) for about 2 hours in the a.m. and 2 in the p.m. I'll hire a caregiver for 4 hours a day - to get him up, moving, give lunch, and do something exciting/interesting (what it is - I don't yet know) and run him through exercises. For an hour of a.m. , I know he'll watch TV - but then I want him engaged in something else. Where his mind is working - he's using his hands. NO TV!
I found some large piece puzzles (60 pieces) but for adults, not kiddie ones. At first - he couldn't place the pieces at all. Now he's better. I bought several, thinking, "Oh, good! This is it!!!) But he doesn't seem to enjoy doing them - so we'll stop.
I may look into special equipment on a computer for people with difficulties. Maybe a voice activated something? Have no clue yet - but will keep looking.
I have some money to use for these things - not a ton. AND I have to find a chair he can get in and out of himself. So far, this has been disasterous. We've only gone to 5 furniture stores. Doctor/PT has advised against the lift chairs.
That's where we are. To all, if you have children, Happy Mother's Day. If not - I hope this Sunday will be a really good one for you and your loved one! Take care- Hope

[heather]

Wow, Heather!
Thanks for your post. Is that a picture of you??? Are you a model???
I love the monkey! Put a big smile on my face!
I'm excited to get to know you and the others.
You asked where I live; we are in Ohio.
This is a good place to be - I'm glad I found you and the others!!!
We had a good day today; that's not always the case. But today was. I was able to get out of the house by myself and get a haircut. My daughter was here - caring for her Dad so I could step out. What a difference it made in my life today! I was as happy as a lark. Then, I came home and took over. I took him to the YMCA - where he exercised for over an hour and a half. While I mowed grass, I gave him a glass of wine and his puzzle book and he sat outside and enjoyed the fresh air.
I wish every day could go as smoothly as this one! Guess I should be grateful for the ones we get.
Take care. I hope all is well with you and Everyone Else today! Hope
http://i10.photobucket.com/albums/a126/maesisaf/Good%20day%20evening%20etc/hello030.gif Hope
so glad you had a good day, and you got some time for you

sounds like you have a great daughter , and lovely hubby


In my dreams I'm a model, then i wake up but don't look in the mirror :eek:;):D

In my profile, in members is a picture of Jim and me, on his 65 th birthday, that will show you I'm no model :eek::eek:

you seem to be a very active/ positive thinking lady, your hubby is so lucky
when Jim was active I bought him a chair with remote, that he could raise and sit himself down, by himself, this kept him independent for a long time, then as his balance etc decreased , i still insisted he did it himself, but only when i was with him, I bought cutlery with large handles, and a anti slip mat to go under his plate, worked a treat, and wound string round and round the small garden tools handles, and this worked , he made the holes in the pot's and i guided the plants with him, and a kiddies watering can, meant he could help with watering, i once gave him the hose pipe, and guess who he soaked, so i confer skated it
Jim has no speech so i have laminated lot's of every day pictures and filed them in subjects, and he nods when i show him the one he wants, which might work if he startes to get fustrated
There are a lot on hear who do lot's of hobbies, so someone will have more Ideas to offer soon

you take care and keep happy
I think it's still Sunday in the U.S.A

so our new friend

http://i10.photobucket.com/albums/a126/maesisaf/Good%20day%20evening%20etc/happysunday006.gif

[topfrog56]

Good Morning Hope!

I thought I'd drop you a line while I'm waiting around for the kids to arrive/get up. My two daughters are 26 and 24 and my son (still at school and at home) is 21.

I bought my Wii used and saved a ton of money. Do you have craigslist.com in your area? It is sort of an online garage sale! I have found so many things through it - I am a real believer in used stuff vs. new. Additionally, if something doesn't work out, I have invested very little in it.

I pray that your search for meaningful activities for your husband will find results soon. If my husband and I reversed roles, I'd be at a loss - he has no hobbies and no interest in little projects, etc. As the caregiver, he has it made in that department - there isn't anything I won't try! The special computer idea sounds good - not too pricey, I hope.

It is a lovely day here. I am going to go water the "garden" and then settle in with the crossword until the festivities begin. Have a delightful day, Hope. I (and all the other wonderful people on this forum) are here for you on both your good days and not-do-peachy days.

Blessings! -Elizabeth

[Hope]

Hi, Everyone!
Elizabeth, your idea about Craig's List is terrific! Yes, I'll look into that. Thanks for the idea!
Heather, you have posted so many good ideas. We aren't to that point yet -but I see it coming. The idea of pictures that he can nod or point to is brilliant. I'll definitely keep that one in mind!
To all, I hope your night will be a peaceful one. Take care! Hope

[Hope]

Hi, Everyone!
It's SO good hearing from you. Sometimes it gets a little lonely here (as you all know!). He doesn't speak much and often has that mask-like face. It's really hard to see - when I remember how he used to be.
Yesterday, Mother's Day, was a real bummer. One of our worst. Our daughter had to go to work at 10:00 - and didn't come home until after we were upstairs. She's a waitress - and everyone (apparently) takes their mothers out on Mother's Day. She knew it would be a long shift. Guess it was - we were in bed before she got home.
He was having a bad day. Same as last year. Last year, I told him the only gift I wanted was for him to stand up straight and take long steps. He said something really nasty to me (he's frustrated, too) and I remember crying. This year I didn't cry - but there was a lot of anger. He was bent over, knees bent, shuffling. When I asked him to take a big step - he did. But then it was back to shuffling. I took him on a walk and he did great. I took him to get his hair cut (what little there is left!). We got home, and he went back to the shuffling, knees bent, torso bent forward about 45 degrees. My whole day was telling him to stand up, pick up his feet, etc. He got really sick of me and let me know it. I was angry with him. Not our best day...
But today is a new day. He goes to work. I go to work. That will be a blessing.
Tonight I take him to Tai Chi. He was trouble standing - so for part of the night we sit and he does the exercises. When he stands, I have the gait belt on him and I simply hold onto him and keep him upright. So far - after a year of this, he has only fallen once. Had some close calls - but I only lost him once - and the fall was broken because I was holding onto the gait belt as strong as I could.
Take care, Everyone! I enjoy hearing from you and writing TO you! Hope

[heather]

Hi, Everyone!
Elizabeth, your idea about Craig's List is terrific! Yes, I'll look into that. Thanks for the idea!
Heather, you have posted so many good ideas. We aren't to that point yet -but I see it coming. The idea of pictures that he can nod or point to is brilliant. I'll definitely keep that one in mind!
To all, I hope your night will be a peaceful one. Take care! Hope

Hi Hope
Do like i do, read it think about it, and then put it on the top shelf and let the dust collect.
What i always say, the things i post is what works for Jim and me, and not may not for others, it's things i have had to work out, as not many realy want to no, if they haven't read it in a book

http://i10.photobucket.com/albums/a126/maesisaf/goodday28123.gif

[Hope]

Hi,Everyone!
I had an interesting afternoon. I had to leave work to go to court! We were evicting a family for nonpayment of rent (going on 3 months!) - and they moved out just before court time! She returned the keys before going to court. So, there is no eviction on her record. The place was a disaster, though. The 3 year carpet has to be entirely replaced, the walls were covered with food or some sort of gook, the sinks were black and stopped up (never told us about this), a pipe was broken under the sink (again - she didn't tell us - just put a pot under the sink, but the water kept overflowing and rotted out the entire cabinet. I've spent about $3000 so far fixing it up - and still have to recarpet the entire house. I did all the painting myself so as not to pour more money out of my pocket.
Well, today was the day for the damages hearing. I had all my paperwork. They didn't show up. While I sat waiting for the judge, I looked at my daughter on one side of me, my husband on the other...I was comfortable and it was good having the afternoon "off"! I commented with a smile on my face, "Oh! This is fun!!!!!!!" My grown up daughter looked at me, shaking her head and smiling, said, "My Mom - thinks going to court is fun!"
I don't get out much. Can you tell??? Wherever I go, I take him - so I'm ALWAYS watching him, preparing for whatever may happen, quick trips to the bathrooms, etc. Sitting there, all comfy, knowing I had nothing to worry about on the case - well, I just felt great!
We were awarded a good sum of money. But we won't collect a penny. The lawyer says this is how it is. She'll say she has no job, no assets. You don't collect.
So I may not get any money - but I had a really nice afternoon!!! Take care! Hope

[heather]

ohhhhhhh Hope what a nightmare
but at least you had a day out
I never get out other than to work 3 mornings a week
and to day on my day off, i went over the road to the hairdressers for a trim, it took 15 min all together, but it was nice just talking to someone

hi girl we could make a good pair of book ends ;);):D:D

[Juanita Mullin]

Hi Hope,
I can sympathize with you on your rental being trashed. My husband and I used to manage an apartment complex. We had some really awful messes -- in all fairness we had the majority who were good renters. One of the worst apartment messes almost made me vomit because of the gross mess in the sink. I felt my stomach lurching.
Good that you had the afternoon 'off'! Hope you get some more time to relax.
Juanita :):)

[Hope]

Hi, Juanita!
So, you know the blessings of rentals, too! We got in way over our head - and the realtor who got us started was a crook. He's a multi-millionaire who owns properties all over the place.
He told us he's a good Christian, likes to help younger people get started, and often goes to visit his mother in the hills of Kentucky. We believed him - and ended up buying a few homes that were nothing but trash. We spent SO much money getting these buildings up to par. We took out a home equity loan that took years and years to pay off! Just to get the new roofs, the new windows, the electric work done, the pipework done, the new floors, new doors - you name it! I bet that guy laughed all the way to the bank with the big loan check we gave him.
But - maybe there is a reason for us to go through this experience! I'm not sure what - but there had better be a reason somewhere out there!
I'm not having the best day with my husband. He's not in a good mood - and I'm in a worse one! Well, only 3 hours until I get him in bed!
Take care. Let's keep in touch!
Hi to Everyone! Hope
Anyway, we're survivors! So here we are!

[Hope]

OK, Everyone,
Today was a really crappy day! I was so excited - I was taking him to Costco. It would be a terrific place to walk and get lots of exercise. Plus, there might be some great tasters. (For those who don't know - this is a large store that sells things in quantity but at great prices! They often have a lot of tasters for free. They sell everything - food, books, things for the house, office supplies - everything! A fun place - usually!) I knew we needed some things and I had gone to the bank first and gotten the needed cash. I pictured him walking up and down - using big steps, getting such exercise. 40 minutes or so of walking would be perfect.
But it was lousy. He took every step - about an inch or two. He didn't lift up his left food - but slid it on the floor. I did my usual, "Pick up your foot, Honey. OK, heel down first. Yes. Oh dear, pick up your foot, Honey. Let's see the heel go down first...." I never looked up from his feet - couldn't even begin to look for the items we needed. He finally got mad at me and wanted me to just be quiet.
The "exercise" was a disaster. I was so upset, I went up ahead of him in the aisle and just started tearing up. I didn't want to cry as I walked in the store. How dumb is that! But this was my big night out - and he was going to get real good exercise, too. It all blew up in my face. So, I shut up, just watched him shuffle, and felt so lousy, I can't tell you.
Not what I hoped for. I hoped for some fun. It just wasn't meant to be - again....
Tomorrow I go to the dentist. 6 months ago, I remember thinking that was so much fun. Maybe I'll have fun tomorrow!
Just feeling sorry for myself. Knew you'd understand! Take care and be well- Hope

[topfrog56]

Hi Hope! I'm sorry you had such a disappointing experience at Costco. It must be so hard to get a good feeling about an outing and then have it fizzle or worse. While I have never had your same experience, I remember getting so excited about a gift or day out with the kids and how betrayed I felt when it went to pieces and I somehow became the bad guy. We all have our Eeyore-ish days but yours sounds much harder on the heart than that. Thankfully, tomorrow will dawn with sunshine and new chances for sweet moments. I wish you great happiness and a string of successes starting when your feet hit the floor tomorrow!

Wishing you and your husband peace and joy, Elizabeth

[Hope]

Hi, Elizabeth!
Thanks for your sweet note. I really felt lousy last night. I got him up today, walked him into the bathroom. I asked him the usual - "Do your 3 point check." (1: point toes forward, he tends to point his legs outward, 2: straighten your legs, 3: pull in your butt so your back is straight - as he will stand at a 45 degree angle with his head down if I don't say anything).
He did #1 and 2. Said he can't do #3. So, I said "fine" and left. Great. Terrific! Well, at least I came to the computer and found your sweet note.
By the way - when I went up to check on him - he WAS standing straight.
I'd love to stay totally away from him. I can't leave the house of course - but I am so tired of this.And it's not even 8 in the morning! ARG!!! (That's my angry yell, my pirate yell, my yell that I do silently but it's filled with emotion!)
Oh, well. We just keep going on, don't we!!! I'll find something to get my spirits back up.
Today I get to take him to the YMCA for an hour of exercises. Then, we get to look for a chair that maybe he can get in and out of himself. Then, housework. Boy - I'm really NOT in a good mood, am I!!!
I'd better go check on him and dress him when he's ready.
Take care. Thanks for letting me vent. I'll try to get my act together so all posts won't be this bad!!!!! Take care. Hope

[topfrog56]

Dear Hope -

Don't worry about getting your act together. The purpose of this forum is to let you express yourself to those who will understand you and not judge or want you to change. The wonderful people who are caregivers here have all had times like yours and they're such a loving compassionate bunch. By sharing your frustrations, worries, anger, sadness etc., you lighten your own burden and encourage others to share their successes and failures with you. I am praying for better days for you and your husband. Does his insurance cover any caregiver support/relief?

Well, I'm off to water my little patio garden and talk to the baby tomatoes! Maybe my new puppy and the cats will have reached an agreement today and I can be outside without cats meowing on the roof and a puppy madly running around the yard trying to find a way to get up there to "play" with them!!!

Thinking of you! -Elizabeth

[heather]

Hello Hope
http://i10.photobucket.com/albums/a126/maesisaf/Borrowing-A-Hug.gif

like Elizabeth said we are all hear, to help each other, be it just to help you with your frustration's, not only as carer's do we get frustrated PD people get frustrated not been able to do the things they could do, and it affects people in different ways

what i post now please read it as a suggestion, and not a criticism, as only you now your dear husband , and this is what helps with Jim and me, but I'm afraid doesn't cure it
Reading your post reminds me so much of me and Jim a few years ago, I would say do this do that, and he would say stop nagging, I would reply you have to do it etc etc etc

Then one day I was so tired physically and mentally , and thought why do i bother, and stooped nagging, just started ignoring not so important things , after a time i noticed, he started to do things i had been nagging at him for not doing , like telling him how to hold a spoon to eat, and this was before he even picked the spoon up, pick up his feet, before he had a chance to pick them up, and the stand straight was worse, i found i would physically pull on his clothing to do it,
I didn't realize, i was letting his illness take over my life, more than his life

I also noticed, if we made plans and got excited it never worked out, it was if he didn't want me to be happy/ excited, we still continue to made plans for going out together or doing something special together , but i never showed how much i am looking forward to it, if everything go well, then when we get home,i say thank you for a lovely day, and he will smile

This was not Jim at all, he always went out of his way to please me, when i discussed this with his doctor, he said it was his illness, this is often noticed all neurological illness , a change of personality,

though Jim doesn't walk etc, he still gets days where he thinks "I'm not going to do what she says today" I have learned to say "fine or nothing " and walk away just making sure he is safe, this he hates,

hope this at least lets you no you are not alone my dear friend

http://i10.photobucket.com/albums/a126/maesisaf/friendhang-in-there-cat-cc-1.gif our dear friend, things will get better, it's just working out, whats best for you both

[Hope]

Thanks, Elizabeth!
It's so good hearing from you. You have a new puppy??? Oh! How wonderful! I know they are a lot of work - but to me, a dog is one of the best things ever put on this earth! I loved mine. She meant the world to me - and was my best friend when other things came crashing down on me. She sat by me, put her head on my knee, and was always there for me. I carry her memory with me always.
Today is a better day. I got to go to the dentist for a cleaning - and had a little time away from him! He seems way off from his usual - but he is actually doing a bit better. When I tell him to look down, and step on the line (or mat or whatever) - he does. So, I AM getting some regular steps out of him!
Last night and this morning, I wanted to throw in the towel and say "to heck with all of this! I'm done!!!" But however PD enters our lives - we can't be done with it. I realize it. It's just such a pain sometimes!!!!
Things are better now. Hopefully - it will continue. And if not, I'll go through the lousy feelings of this morning - and pick myself up once more.
I hope your cats and your puppy give you a lot of smiles today! Be well- Hope

[Hope]

Hi, Heather!
Thanks for your wonderful reply! I have seen with my husband that if I don't say things such as "take big steps", "lift your feet" - he actually doesn't! It's not like he'll start if I shut up! I think he just doesn't think about it. It's easier not to have to think and let things just go naturally. It's harder to have to think about sitting up, not leaning left or right, picking up one's feet, putting down one's heels first when walking, etc. He has to think all of the time. And I know he's tired of all of this thinking.
But the doctors, the PT, the OT, the trainer - all say I need to remind him of these important things. If he stays bent over, the brain will perceive this as normal - and standing up will be so much harder to correct.
When I know he's not going to try (if we're at home) - I do leave. If he's in the bathroom, I step out and come back when he's done. That way - I'm just not nagging him. But if we're out on a walk and he's taking those little itsy bitsy steps - his upper torso comes forward - and he loses his balance and goes down. So, I don't let up if we're out. I try to keep upbeat - but it doesn't always work.
Sometimes - he listens and actually does fairly well. But it's as though he doesn't do these things unless I'm suggesting and cheering him on.
Today, as I was telling Elizabeth, he did take longer steps. He did put his heel down first - instead of his toes. But it takes me going through my routine, then saying, "Oh! Good! You are walking so well!"
I try to be the caregiver he needs. Usually I succeed. Sometimes - as yesterday - I fail miserably!
What do you and Jim do together for enjoyment? With my husband not speaking and with walking a bit of a challenge - I'm at a loss of places I can take him and things we can do together. He doesn't read anymore. We used to go to a museum - and he'd read everything in sight! No more. Even if I got a wheelchair - he wouldn't be able to read all of the explanations.
Going to a restaurant is ok. It's so much easier eating at home. And I don't have to be in a men's bathroom - if we eat at home! Going to the movies is a hassle - if he needs to use the bathroom. Other places, too.
I'm trying to find some hobbies he can do. So far, with his difficulties - I haven't had any luck. I'm still looking, though!
Take care. He's finishing a nap - so I'm back on duty!!!!!
Hope

[heather]

Hi Hope
so glad your on a better day, and hubby is on a good day
Jim doesn't talk, and hoisted, I have to feed wash dress him etc ,
he has a feeding tube to help keep him hydrated he drinks supplement's to help his diet, as he eats very very little
I bought him a van converted for a wheelchair, so i get him out as much as possible, and had French doors on the back, so i can get him in the garden, and he tries to shake his head yes or no when i ask him what to do, or what plants we need
He likes cowboys and Last of the summer wine on the TV
I bought him a little dog [papillon] last year, who goes out with us in the van, [ has his own special seat] he loves it when we go out for walks,and sits on his knee when he is watching TV
the night's and winter are long, so i try to keep busy, with house work in between seeing to him, and coming on hear

[Hope]

Heather,
You sound remarkable to me. Jim has so many limitations - isn't it almost too hard for you to do everything? Do you have help? Bathing him? Dressing him? My mouth is hanging open in awe of you.
I bet he loves the little dog. What a magnificent thing to do. It brings so much joy to Jim, I know.
You must have the patience of a saint! I know you share advice with others on this site. But do you ever get really down on all of this? Do you ever wish you could just get in the car and go somewhere - without worrying about Jim's needs?
Did you go out much before his illness struck??
I took my husband outside in the evening, got a few lawn chairs out, and a couple glasses of wine. We sat quietly - just looking around. It was perfect.
I did ask him what was the hardest thing about this illness for him. He managed to say "walking". For someone who was a marathon runner - this is so hard on him, I know.
We did take a little walk - and he did pretty well. So all in all, it was a good evening.
Take care. I hope you and everyone has a pleasant day (if you're overseas) and a pleasant rest (if you are here in the States!)
Be well- Hope

[bli355]

Hi! It's good to meet you, too, Elizabeth! Your advice about having my husband read posts of people dealing with PD is a good one. He has trouble reading - but I know I could read to him. We tried this a while ago - not this forum, another one. It wasn't so good. Hardly anyone wrote. How is this site for people sharing with others with PD??? Or, if you know of another site you really like, please send it my way.
You sound really active. I'm so glad you have so many interests. That's one of the problems I'm having with my husband. Other than doing Sudoku puzzles and another kind of puzzle book - he isn't really interested in things anymore. He used to do all sorts of things with his hands - made a grandfather clock, wooden picture frames, wire-art, a Tiffany lamp, etc. He was great at these! But he has lost most of his fine motor - so all of these things are out. The only thing I can think of is painting and he says he's not interested. Reading is hard for him. Speech is pretty much gone. Balance is really bad. He doesn't stand without me at his side. Same for walking (unless he's using a walker).
Any ideas??? Anyone?? He'll soon retire - and I'd like to be able to find a couple of things for him to do - creative things. I've checked out all of the craft stores, told the salespeople our dilemma - and no one has offered any ideas.
Take care! It is so good getting to know you! Hope

Hello Hope,
What an appropriate name!! Thats what we all need to remember, where there's life, there is...you guessed it..Hope!!

I love to write and so I started blogging. It gives one a chance to work off frustrations from the politicians to the
media. You can express how you feel about everything (within reason)

Go to Google and look for Blogger Help Center. It is relatively easy to do and he may enjoy it. I even had some things published on Google. Look for seniiorblog.blogspot.com

Hopefully (Sorry about that) we'll come up with some other ideas that will keep him thinking positive!!!

Welcome,
Robert Maxwell

[Hope]

Hi, Robert!
Thanks for the info. I'll look into both places you suggested! He stopped reading years ago, unfortunately. He says it's too hard. (His vision is fine - so it must be other things. He does like watching videos (YouTube) and Fancast but he can't seem to navigate these places himself. There is even an icon on the desktop for him! If I continue having him do it - maybe at some point he'll say, "Oh! I can do this myself." Now it's just "You do it"! He likes those words and often gets really angry if I say, "No, you try it."
He loves space - so I'm going to get him on the NASA site today. They talked about the astronauts fixing part of the Hubble yesterday and there are videos, I think. He likes the videos. Now, if I could just get him to use the computer without me - a whole world would open up to him!!!
Again, thanks. Keep sending ideas, Everyone! I need all the help I can get! (And, Robert - yes, I AM HOPEful! Ha. Ha!!)
Hope

[heather]

Hi, Robert!
Thanks for the info. I'll look into both places you suggested! He stopped reading years ago, unfortunately. He says it's too hard. (His vision is fine - so it must be other things. He does like watching videos (YouTube) and Fancast but he can't seem to navigate these places himself. There is even an icon on the desktop for him! If I continue having him do it - maybe at some point he'll say, "Oh! I can do this myself." Now it's just "You do it"! He likes those words and often gets really angry if I say, "No, you try it."
He loves space - so I'm going to get him on the NASA site today. They talked about the astronauts fixing part of the Hubble yesterday and there are videos, I think. He likes the videos. Now, if I could just get him to use the computer without me - a whole world would open up to him!!!
Again, thanks. Keep sending ideas, Everyone! I need all the help I can get! (And, Robert - yes, I AM HOPEful! Ha. Ha!!)
Hope

Hope
Just a little something i picke up reading this, sounds a lot like Jim was a about 8years ago, "NO you do it" some times he couldn't do it, but sometimes it was just easier for me to do, so on those occasions like you I said no, he would have stooped doing a lot of things years ago, if i had listened to him,
If any professional person came and made a suggestion , he would weigh it up and think thats easier, and then refuse to do the things i knew he could do, so i gave him a choice, to go into care and they would do it for him, or stay hear and do it my way, well needless to say he is still hear :D, it sounds harsh, but i have had to be cruel to be kind, or he would have lost all his skills years ago, you will no what he is capable of doing, and he will forget and needs a gentle push , not so much will not do

http://i10.photobucket.com/albums/a126/maesisaf/gooddayf17f.jpg

[heather]

Heather,
You sound remarkable to me. Jim has so many limitations - isn't it almost too hard for you to do everything? Do you have help? Bathing him? Dressing him? My mouth is hanging open in awe of you.
I bet he loves the little dog. What a magnificent thing to do. It brings so much joy to Jim, I know.
You must have the patience of a saint! I know you share advice with others on this site. But do you ever get really down on all of this? Do you ever wish you could just get in the car and go somewhere - without worrying about Jim's needs?
Did you go out much before his illness struck??
I took my husband outside in the evening, got a few lawn chairs out, and a couple glasses of wine. We sat quietly - just looking around. It was perfect.
I did ask him what was the hardest thing about this illness for him. He managed to say "walking". For someone who was a marathon runner - this is so hard on him, I know.
We did take a little walk - and he did pretty well. So all in all, it was a good evening.
Take care. I hope you and everyone has a pleasant day (if you're overseas) and a pleasant rest (if you are here in the States!)
Be well- Hope

Hello hope

No i don't have help, this is my choice , in the UK they come at a given time each day, could be about 8 am or before , and at night any time after 6pm, so i said no, as i felt his illness would once more be dictating to me, as when I'm not going to work, i like to get up when i want to,
I don't always have patient's but have learned to walk away from a situation and calm down, it works for us, and I have plenty of time over the years to learn this is the only way, no matter what the situation is, have even left him for about 1/2 hour before now.

"But do you ever get really down on all of this? Do you ever wish you could just get in the car and go somewhere - without worrying about Jim's needs? "Ohhh yes, after all i believe i am only human, my worst time is getting up in the morning, and thinking "hear we go again"
then i think of the good times, and it's not him I'm angry with it's his illness, so i curse it and get up, even cursed god for giving it to him :eek:
we went every where together , night's out, food clothing shopping, we where always together, now i never go out much, especially to Town
I think with Jim it was his speech, as we would just sit and make plans, we never did anything, with out talking it over,
and if we wanted to do something and the other didn't really agree, we just said OK, if thats what you want, we called it give and take
we even miss the arguments:D:D

But we do count our blessing, we are both together, in our own home, and i can look after him, that is everything to us

[Hope]

Heather,
I'm so glad you are in my life! I love reading your ideas, your thoughts. You are an inspiration to me. It's good to know that you are human! For a while, I thought maybe you never lost your patience with Jim or never felt you were missing a part of life (pre PD life!)
Yes, I do know what he can/can't do. And I'd never push him to do something that's beyond his ability. He has just gotten very lazy - wants to sit and do very little. Wants everything done for him.
When his family visited, his sister called me over (she never speaks to me - but did this time) and told me I should feed him. I was so mad at her. That's all I need to do. If I start - he'll never eat on his own. He'll just sit there with his mouth open as a little baby bird might do.
I give him foods he can pick up with fingers. I still give him food for which he needs a fork or spoon - as he's not ready to give up these yet. He still can navigate towards his mouth - but it's hard. He keeps his mouth open for a long time as his hand slowly, SO slowly moves up towards his mouth. And a lot of food falls on the floor. No problem. I've learned to keep a washable mat under his chair and he wears an apron to protect his clothes. The aprons are always a mess - but that's ok. I just wash them and they're good as new! The mats are all washable as well.
I just mowed while he was on the exercise bike. Now he's on the treadmill. I have to stay close - so I can run to him if his steps don't sound normal.
My entire life is revolved around his needs - as I'm sure yours is. Other than going to work - my life is taking care of him. Physically. Mentally. Emotionally.
I like the line you wrote that you once told Jim he could do it your way or go into the care system. Ha! I just did that with Amar. He told me I make him work too much. I calmly said that he doesn't have to do anything. He can go into the nursing home. They'll take him out of bed in the morning and put him in a wheelchair. They'll wheel him to breakfast, lunch, and dinner, and the rest of the time - he can sit in his room and watch television. At night, they'll lift him out of the wheelchair - and put him in bed. I asked him if that's what he wanted. He said, "no."
Now - at some point - if I can't take care of him, if I have NO other options - he may have to go into a home. But if I have an ounce of life in me, I'll be there - doing a lot of what I do here - as long as he's able. We'll do puzzles, look at favorite movies, maybe use a computer. (I'll press the buttons.)
But for him to stay at home - I need him to be willing to move, to think, to try to talk when he can - things like that.
Heather, I hope you are having a good day (night???). I don't know what the time change is.
Again - I'm so glad this site has brought us together - and so many other wonderful people.
To all - you make my life and world a bit brighter. Thanks you!!! Hope

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/Ahope.gif

hope your day is a good one
I try not to lose my patient's hence walk away, as i find the stress, does none of us any good

You are doing so well my friend, and hubby is very lucky to have you,
I found out Jim became "lazy" early on in his illness, but i don't think he meant to be, I think that everything was becoming a big effort, but it was also becoming a bigger effort/ extra work for me , what i do keep telling him is that if he doesn't do it he will lose it
Don't mention in-laws to be :mad:
he has 2 sisters [married] 2 brothers [married] and live between 3 -5 miles from us, one sister he hasn't seen or heard from since the day of his mothers funeral, 7 years ago last December .
His one brother and wife about 4 years ago, who came with his other sister and husband [who he last saw over 12 months ago] and tried to tell me how to look after him , so i suggested they came back the next day at 6-15 am till i go to bed about midnight if i was lucky, and show me how to do it, and that was the last i saw of them , his other brother and sister -in- law was last summer. but what i say is, i don't have to say "thank you" for anything.
I wonder how your hubby sister would like to sit, and feed her husband, whilst all the other things on your to do list just for today got bigger, and you once more ate a cold meal or did with out food. they have no idea
Another saying i have :eek: "come and live in my world dearest" or if it's a professional , "you need to spend some time in the real world"

I to have to go to work 3 mornings a week, for my sanity, and just to hold a conversation with a adult, as i have my 5 year old grandson, 5 days a week after school, and the other 2 some weeks 2 or 3 days, depending what shift my son-in-law works

That is what i told Jim would happen to him, but i also asked him, what he thought would happen to him, if anything happened to me, and he said "a home", I still do have to keep reminding him, when he gets stubborn, but that is not as often

Before the time or if it does come i can't look after him properly, i will get agencies in to help me care for him, but till then, we are fine, and mainly work as a team
life my not be a bowel of cherries, but it sure is a bowl of love, we have had to make a lot of adjustment's, but this has been over 13 years,

This site is my life line, i like you was lonely, though i new others where going through it as well, it is nice to be able to share skill's thought's and knowledge as friends
I have/am a community nurse for almost 30 years, so seen and learned a lot from other carers in the real world, not out of a book

http://i10.photobucket.com/albums/a126/maesisaf/friends3f47.jpg

[Hope]

Hi, Heather! Hi, Everyone!
I really love hearing from you! There's a world out there - and I can still connect to it through all of you!
Heather, thanks for your letter. (I sent one off to you yesterday - but it has disappeared. It's not on the forum - so it must be flying around in space somewhere!)
Things are going along ok. Yesterday was an ok day. I took him for a walk in the evening and he did well. I had to hold onto his arm - and keep one hand behind his back as he was leaning to the left. I don't know what this leaning thing is - but it's not consisitent; sometimes right, sometimes back, sometimes left. If I didn't support him, he'd be on the floor in seconds.
But his steps were pretty good and I only reminded him minally to take longer strides and put his heel down first. It was probably our best walk in months (a year or more???). I was so happy.
When we got home, he needed to the use the bathroom. No problem. I walked him to the stairs, got in front of him as I always do (in case he starts to fall on the stairs - I can grab him - as I watch every step/movement!) Well, he started to go down. I had been holding him and thought I could prevent the fall. I just couldn't - but I lessened the fall, as I was holding onto him as he went down. Fortunately, no injury. But his confidence went down to the toilet! I could see it in his face. He had been feeling pretty good - but now, he had a really bad look on his face. Plus, he blamed me (of course) for his fall. He said "You got in front of me." I explained, "Yes, I did. I ALWAYS get in front of you when you go down steps. And I stay behind you when you go up steps. We've done this for years.
But still - it was a good day. My daughter got him to start "dancing" in his chair. He puts him arms up and wiggles side to side. It's so cute! We laugh. He does, too. She said he could wiggle in his seat - and get the whole dance but he hasn't quite figured out how to do that.
Still - it gives us another reason to laugh - and we need all the reasons we can get!!
Take care, Everyone. I'm off to work soon. Be well- Hope

[suzie Q]

Hi Hope my name is sue and i have had p.d 6 years i am 54

i have spent a lot of time in a pd clinic with a lot of elderley people with p.d .(.there is never anyone my age there) .for excercise they got all the older people and they sat around in chairs and rocked to music moved their arms just jigged in their seats .also they got a ball and threw it to each other and they caught it .....they rolled a ball along the floor and picked it up with their feet.... you can do a lot while sittying in a chair when i came home i got my elderley father on to it because he was a bit confined to his chair not withy pd just elderley ..he did it as well he enjoyed it ...hope things areimproving for you must be hard seeing someone you love like this


All the best

Sue.

[heather]

Hi Sue
hope all is good with you my friend

That sounds good for dad. I think i will try throwing a ball of wool at Jim and see if he can try to catch it, better not use a ball, as i might hit him in the face :eek::D;)
It will be good for both you and dad, don't forget to move breakables, as you may break something :D;)

[heather]

Hi, Heather! Hi, Everyone!
I really love hearing from you! There's a world out there - and I can still connect to it through all of you!
Heather, thanks for your letter. (I sent one off to you yesterday - but it has disappeared. It's not on the forum - so it must be flying around in space somewhere!)
Things are going along OK. Yesterday was an ok day. I took him for a walk in the evening and he did well. I had to hold onto his arm - and keep one hand behind his back as he was leaning to the left. I don't know what this leaning thing is - but it's not consisitent; sometimes right, sometimes back, sometimes left. If I didn't support him, he'd be on the floor in seconds.
But his steps were pretty good and I only reminded him minally to take longer strides and put his heel down first. It was probably our best walk in months (a year or more???). I was so happy.
When we got home, he needed to the use the bathroom. No problem. I walked him to the stairs, got in front of him as I always do (in case he starts to fall on the stairs - I can grab him - as I watch every step/movement!) Well, he started to go down. I had been holding him and thought I could prevent the fall. I just couldn't - but I lessened the fall, as I was holding onto him as he went down. Fortunately, no injury. But his confidence went down to the toilet! I could see it in his face. He had been feeling pretty good - but now, he had a really bad look on his face. Plus, he blamed me (of course) for his fall. He said "You got in front of me." I explained, "Yes, I did. I ALWAYS get in front of you when you go down steps. And I stay behind you when you go up steps. We've done this for years.
But still - it was a good day. My daughter got him to start "dancing" in his chair. He puts him arms up and wiggles side to side. It's so cute! We laugh. He does, too. She said he could wiggle in his seat - and get the whole dance but he hasn't quite figured out how to do that.
Still - it gives us another reason to laugh - and we need all the reasons we can get!!
Take care, Everyone. I'm off to work soon. Be well- Hope
Hi Hope
sounds like most 0f your day went well, so thats got to be good.
Just ask him to think, what would have happened if you had been behind him, he may have fallen on top of you, and really injured you :eek::eek:, then where would he have been
hope you made him get up and go to the Lou , as soon as he got over it

http://i10.photobucket.com/albums/a126/maesisaf/00826cf6.jpg

[Hope]

Hi, Suzie! Hi, Heather! Hi, Everyone! (I don't know if anyone else is reading this - but if you are - HI!)
Suzie, it's nice "meeting" you. You mentioned you have PD. How has it affected you? You can see things from a different perspective than many of us. I am caring for someone with PD. You are living it.
The exercises you mentioned sound so much like the ones we do on the DVD. Actually - it's not bad - and for times when he's really weak on his feet, this seems to work and get him moving a bit.
I do take him to exercise a gym. He is able to do the treadmill, the exercise bike, and some of the other machines. In fact, he does really well. I stay with him and walk him from machine to machine. I get the weights for him and sometimes, if he's safe and will be on for a few minutes, I get on a machine next to him and do 10 reps of something. It's not much - but I figure that since I've completely stopped all exercises (when he got ill) - a little something is better than nothing!
My dream is to go for a walk! I love to walk in the park near our house. It's a bit hilly - even though they've paved the path. It's just too much for him and too hard for him now.
I used to go out every day in the summer - before it got hot - and walk. I loved it. I think now how nice it would be just to go out and go for a walk!
Heather, you seem like such an amazing person! I can see you as a nurse - caring, loving, giving. I'm glad you can get out and work. What does your husband do while you're working? Can he stay alone? Does someone come in and stay with him?
My husband's family has this philosophy...they should be able to stop in and visit anyone without calling. Family is family, they think. The door should always be open.
Well, a nephew spoke to my daughter and asked, "How about we surprise you parents and show up at their house this week-end? Think they'd like it?" (Actually - I'm surprised they called!) She told them we HATE surprises, that we have a very tight schedule based on her Dad's needs, and if they come, they need to let us know!
I came home from work today, expecting a good day with him. Then he told me his nephew, wife, and daughter are coming this week-end. He didn't know when, or for how long they'd be staying. (That's usual.) I sort of lost it. I had wanted to get some papers filed. I wanted to catch up on laundry, get the lawn mowed, pack some books away, etc. Tons of stuff - that never gets done. But I have high hopes.
Well, with them coming - everything changes. At least these people speak English. Most of his family does not. When they get together, they speak their native language - and I don't! I can count to ten and say "I love you" in their language - but that's about it!
OK, enough of the complaining. We're having company this week-end. Yahoo. Yahoo. (Is that the right attitude??!)
Oops - time got away from me. Time to get him showered and into bed by 10.
Take care. Be well- Hope

[suzie Q]

Hi Hope

Nice to chat to you .P.D has certainly changed my life,at the moment i am having trouble with medication,i am off to see my doctor in June.The woorst part about p.d is not knowing from day to day and sometimes from hour to hour how i am going to feel .It affects my fine motor skills and i am stiff,slow,internal tremors all the usual symptoms.At the moment i am having more trouble with medication than the actual p.d as most people do at one stage or another.When i was diagnosed i decided i was not going to stop me doing anything i would have done without p.d.i have learned how to play the piano and can play ok .i also still work and love it,sometimes it gets to me and i worry about my future but usually i get over this and get on with it .i have made so many friends on this forum and also have had one friend from the U.S.A. that i have chatted to on msn and the forum come to visit and spend time with myself and my family just this month .We had the best time and i have made a special friend for life


.I guess i just decided i only have one life and make the most of it .I have a supportive family and ia m sure they will all be there for me if and when i need them .i could have been diagnosed with something terminal.This is not going to kill me i may die with it but i won't die of it.

Hope things are bettter for you and your husband soon.

All the best

Sue

[Hope]

Thanks so much for your letter, Sue. It sounds like you are dealing with your PD. I think many people don't - and they let the illness run their lives. You seem to know your body and how it works/feels - and continue to do things you can do and you like to do. That's an inspiration to so many of us!!!
I think it's wonderful you found such a friend on msn. This person came to visit? How amazingly perfect! I love it!!
Tell me, if you will, what sort of problems are you having with your medication? You mentioned this happens to many people - it hasn't happened to us yet. What's this like? What do I look for?
My husband's movements are ever so slow. And he can't do two things at the same time. If we're walking, he can't answer a question or his steps go haywire. If he's putting toothpaste on his brush, he doesn't stand straight - but bends his knees and his upper body comes forward.
He has a great deal of trouble standing upright when he's not walking. When he's just standing - as in the a.m. and p.m. when he's taking pills, brushing his teeth, drinking water - he's bent over and the knees are bent. Have you heard? Is that usual? I think what I've learned so far from this illness is NOTHING is usual! Everyone's PD is unique.
My husband doesn't have the tremors yet. But speech is totally effected, his saliva just flows from the corners of his mouth, his gait, his posture, his fine motor - all are terribly affected.
But we go on - as do you and so many. I'm fortunate enough to have support in my family too. From some things I read - this is unusual.
What type of work do you do?
I hope your day is going well. Take care. Hope

[suzie Q]

HI Hope .i was a Family Day Carer caring for children in my own home,Licensed with the local Council.I did this for 20 years and loved it .I cared for 5 children under the age of 5 and 2 over the age of 5 for that time .I left that because of P.D 2 1/2 years ago .Now i work 3 days a week in the office administration of a Family Day Care Scheme,Checking that carers are complying with the State Standards for child care.Visiting the carers amd also supporting them.I love that as well.

Sometimes after being on the medication for a few years it can cause dyskenesia which is extra movement,that is what is happening to me at the moment.This may not happen to your husband as you know we are all different.I know people who have been on it for longer than me and dont have that problem.

They say people with P.D.cannot multitask.i can to a certain degree but know of others who can't.Once again we are all different.Hope Things improve for u both.

Sue

[Mary]

Hope and Heather
After reading your threads I think you are both marvellous at coping with all the problems - no wonder you need to let off steam occasionally. Your husband's are so lucky to have you both as carers.Thank goodness I am the one with Parkinsons as my poor husband would probably have a terrible time if he was the PD patient.Give yourselves a big round of applause.
Yes Hope a lot of people will be reading your thread even if they are not writing in
Sorry I have written sooner computer packed up
Regards and best wishes for continued strength and patience
Mary

[Hope]

Hi, Mary. Hello, Everyone!
Thanks for writing, Mary - and welcome! I don't think you've written before on this thread. It's good to hear from you.
I know you say we should applaud ourselves for doing what we do. But, I don't. I don't know about Heather. It seems like there is always so much to do! Take care of the house, the yard, work, and most important - all that he needs. He pretty much does nothing without me. He'd sit all day in front of the TV - watching nothing, feeling nothing. I can't let that happen. So, I take him to Tai Chi, to the trainer at the gym (twice a week) to acupuncture (twice a week) - was taking him to occupational therapy twice a week - but didn't feel the therapist was doing anything for him - so we quit. I'm now looking into physical therapy for him. When we're home, I make sure he gets up and moves every couple of hours. We bought a stationary bike for him - and he's safe on that. We have an old treadmill - but I won't let him stay on that unless I'm right here.
I also have him to some mental puzzles - he likes Sudoku and another puzzle book. He has very little fine motor - so he's limited in what he can do.
With all we do - it doesn't seem enough at times. Or, it seems enough - but there isn't time for anything else!
How are you dealing with your PD? Do you have similar symptons? How is your husband dealing with everything? Is he ok or not?
If you feel I'm being nosey, I apologize. I truly learn and enjoy talking to people who deal with this illness - in all aspects, whether caregiver, or the one who faces this illness day in and day out.
Again, thanks for writing. I hope to hear from you (and everyone!) soon.
If you are in the US - I hope you have a good Memorial Day week-end. If you are not - just have a good week-end!!!!! Hope

[Diane]

Hi, Hope. I am carer for my husband who was diagnosed 10 years ago. It sounds as though your husband is about the same as mine --- but my husband gets much better for a couple of hours after each dose of medication. Does your husband get any relief right after taking his meds? Has the neurologist tried higher doses of his meds? My husband will begin to shuffle his feet and stoop from the waist when his meds start to wear off. My husband is on Stalevo and Mirapex. He takes both when he wakes up, and again about 4-5 hours later and again about 4-5 hours later and again at bedtime. When his meds are wearing off, he [U]can[U] stand up straighter, but it is very hard for him.

I have read your posts with interest. I have had so many hard times dealing with this disease. My husband's cognitive abilities have been failing rapidly over the past 5 years, and it is so hard to stay positive. I have often been very angry with him about the delusions. He is paranoid and suspicious of me, and my real feeling is: "Here I am doing the best job I can do, and taking care of you and our home and everything else without much help; and I think you should be grateful and happy that I do as well as I do; and instead you suspect me of being unfaithful, of taking 'your' money, of hiding your keys, of losing your mail, of conspiring against you." He even believes that I have arranged for him to lose his driving privileges (our insurance company canceled any coverage for him because of his many accidents and incidents).

One time, when he thought I was taking money out of a joint bank account, he got the housekeeper to take him to the bank to move the money into an account that only he controls. The housekeeper told me what he was going to do, so I went to the bank. When he arrived at the bank, I met him at the door, and said, "I can't believe you are doing this." He responded that he did not trust me with "his" money. I said, "Do whatever you want to do with that money. It is not your money, it is our money, but do whatever you want to do with it. And good luck trying to replace me with that money." I went to stay with my mother for about a month. He pleaded with me to come back. He said, "I would hope you would just accept that this is the disease, and forgive me." I finally decided that I had to do just that: chalk it up to the disease and get on with our lives. I have no intention of abandoning him, and I know he will need me more and more as time goes on, but sometimes it seems just too much to take. The doctors have given him prescriptions for depression and for sleep and for the hallucinations and psychosis. All have helped to varying degrees, but nothing can make his mind and body whole and healthy again. The losses are tragic.

Hope, I am sure that many people have given you this advice, but it is very important: You must take care of yourself, too. I have read that caregivers suffer premature death at many times the rate suffered by the "patient" they care for. Surely you can get him up and stabilized and leave him to watch television while you go on the walks you miss so much! It hurts so much when he cannot do those things with you anymore, but I had to finally tell my husband: "I am so sorry that you have Parkinsons disease; but I need to continue to have some of the life I have had before. I cannot stop doing all the things I love to do, because you cannot do them anymore." It was heartbreaking to see his disappointment last year when I told him he could not make the planned family trip to Alaska, but that I would be going. I know many other caregivers would not have chosen to go without him, but for many reasons I decided to go ahead with the trip. It was not easy to face the sadness of leaving him behind in the care of his sister, but I felt I really needed the trip and the time to myself and with my family. It made a tremendous difference. I came home renewed after seeing my family, and better able to cope with his tragedy.

After 10 years, our lives have changed too much to be believed. We just take each loss as it comes and deal with it and continue to live our lives with the new restrictions. I am very fortunate to have my husband's sister, who helps as much as she can and is my 'respite' caregiver whenever I have to get away.

I hope you can find ways to give yourself a break, at least once a day. A little walk, a bath, a magazine, a phone call to a friend, a drive, even a trip to the grocery alone, anything that makes you feel good and refreshes you. Try to tell your husband he will have to stay where he is for thirty minutes to an hour while you take care of Hope for a little while.

I had to learn that I cannot take this disease upon myself, and I cannot give him back the life he had before PD. What I can do for him is keep my own life together and keep him in it as much as possible. I can help him with tasks he can't do; I can make sure he gets his meds on time; I can maintain a home which is modified to fit his changing needs; I can shop for 'stuff' to help with his physical difficulties. But all this takes a lot of energy --- physical and emotional! And I cannot do it 24 hours a day. I know I sound as though I am rationalizing, but these are observations and conclusions drawn from 10 years of dealing with PD and the past 5 years of intense suffering by both of us.

Wow! What a monologue! Sometimes I guess I just need to 'talk' to someone who knows what I am going through. I hope I have not put anyone to sleep, or made anyone late for an appointment!

Diane

[Mary]

Hi Diana Hope and Heather
After reading what you three carers have to live with on a daily basis I offer a silent prayer that my PD after ten years still allows me to function normally even if extremley slowly.I am one of the very lucky ones I know.I have been advised by my Specialist that my meds could be increased but the risk of hallucination etc would be very much increased and after reading threads I am glad I decided to stay where I am.
Hope I have been a member for some time but computer problems meant I could not contribute I am now going on holiday to Cornwall for 2 weeks so will be silent again.
May all of you have continued strength and patience for all you need to carry on
Mary

[suzie Q]

Diane .Hope and Heather

I too hope that i stay as i am.it is scary reading what you all have to do .i am a bit like mary not too kee3n to increase the meds i have been on the same dose for 4 years.i am going to my doctor 1 june .Lately i have not been as good as i was,meds not working etc.hopefullyu this will not mean i have to increase.At the moment i have been back on my herbal,i find this better for me than the meds from my neuroligist,with them i get lots dyskenesia i seem to be able to control this with the herbal.

Also sometimes i really have to push myself to do things like my hobbies,sewing ,stained glass,scrapbooking etc .i think it is a part of p.d that you loose interest in things like that.i make sure that i have something on the go to keep me busy i can understand how your husbands loose interest ,sometimes it is easier to sit in the chair and watch tv.When i do this i feel guilty,but Ken says to me you work 3 days you neeed to have a rest but i worry when i get like this i want to keep my mind busy .anyway enough hope you are all well will chat again soon

Sue

[topfrog56]

Hi Sue!

You mentioned herbal treatment - what is that? I, too, am loathe to increase the doses of my medications. I fear the side effects deeply. I know I am due for an increase and I trust my neurologist, but I am afraid I won't be able to do the things that I do to stay active and feeling productive - volunteer at a child care center, sew, walk the dog, attend to my little container garden and make greeting cards with my photos.

Any advice? Are your herbal mixtures available anywhere?

Thanks, Elizabeth

[suzie Q]

Elizabeth

Look in medications i will post it there

Sue

[Hope]

Hi, Everyone!
I haven't been on for a couple of days. It is SO good hearing from all of you. We've had a rough couple of days - and I didn't sleep last night. I'm going on about 3 hours of sleep - and have to soon get him up and get to work. I have a sister and a daughter who are staying with him today - so I know he's in good hands.
Diane, we sound like we are in similar situations. But you have it much harder. My husband doesn't hallucinate - or accuse me of things such as your husband. (Though he DOES say to me I'm not taking care of him. Yeah - sure. Right!)
I know it's the illness, it's the medications - but this all really stinks, doesn't it. He's not the same person he was. I know that. And I know it's not his fault. But it doesn't make it a lot easier.
Yesterday he fell. I was right there. He was going down the 5 steps to the bathroom. I made sure his hand was on the handrail. He usually just puts his other hand on the other handrail - and I walk down the steps backwards, watching him, in case he has a problem - I can see it. But last night, he fell backwards - hit his head on the brick wall. He blamed me and tried to "yell" at me. But all that came out was jibberish - as he can barely talk at all. So, I got a "yelling" of
"BBBB...MMMMM..SH. SH. SH.MMMMM.BBBBB." I kept my mouth shut - what could I say?
I worried about him. He has a bump on his head - but I kept him up for a while, he had a snack and seems ok. He wanted an Advil - but I couldn't give it to him because of other medications. I offered him Tylenol - he declined.
I've watched him through the night. I got up with him to take him to the bathroom at 2 a.m. and have been up ever since. Oh dear - this is going to be a good day at work!
I know what you say about taking care of myself. I really don't want to leave him alone - even just to take a walk. I need to be within 10 min. of him - just in case he calls. But I read at night - and I get up early to write my friends at this site in the a.m. before I get him up.
Let's keep in touch!
Mary and Sue - I know you read my posts - and they might worry you. You worry about how this illness will affect you. I understand that. But please know - the ONE thing I've learned from all of this (other than the fact that I have to have patience beyond belief!) is that this illness is different for every person. You may never experience what my husband deals with. Every single sympton seems to be different.
I only had to deal with the outcomes of his illness. You are dealing with the actual illness. You are reading, keeping active - even when it's easier NOT to, you are doing everything you can to keep yourself in a good way. I respect you. I honor you. You are the people I look up to.
Elizabeth - you wanted to know about herbal wraps. I can't respond to that - but my husband feels acupuncture has been a real positive activity for him. He feels SO much better. Says the needles don't hurt at all - but make him feel really good.
To all - we keep going forward. When life is good - great. When it isn't - at least we can look to each other. We can be each other's 'rocks"! Each other's strength.
I have to get him up - have to leave. But I'll be thinking of you. Please take care. Hope

[heather]

Hello everyone
sorry not been on for a few days, but my parrot chucked his water in my modem,[ i forgot to move it :(] and couldn't get to town till yesterday to get another, as i started to decorate the living room last weekend, it's 25 feet long, and so i could only do it in section's in case it got on Jim chest, and also painted the radiators [gone rusty in parts] changed the curtains, then just for something to do :rolleyes: built a new stand for the TV as the other was so big, and loved the dust
so we are ready for the summer
I have read all the above, and it so helps to to realize that Jim and I are not alone, it's so lovely to share our ideas, but it also makes me realize, that we are all lucky one way or a other, at least we have our loved ones,
Dear Diane
I no how you feel , that you do everything inside and out side the house, look after hubby , sort the finances out etc etc etc,
but the good days out weigh the not so good.
I find the hallucinations are bad, especially when he could talk, and say he wanted to go home to "Heather" I have started to give him 2 Mg of diazepam when he gets upset, as this is usually when it starts,and it works well, his doctor was wondering if it was mild dementia, but what ever we couldn't do anything about it, so what the point of wondering

Sue, Elizabeth and Mary
you are the one's that need a gold medal, you are so positive, and encourage us all in your positive attitude, and as you keep saying, no 2 PD are the same, thank you

Like i have posted before ,I no who shoes i want to be in, I would rather stay in mine thank you.

Hope, Jim has fallen so many times, always back wards, once he broke the coffee table, it was a solid one, and all he got was a lump on his head, he laugh, because he never like the table, he never seemed to hurt himself badly , as he was never quick enough to try stopping him self fall

http://i10.photobucket.com/albums/a126/maesisaf/gooddayf17f.jpg

[Hope]

Heather,
WHAT????? You are doing all of that??? Incredible! I'm exhausted just THINKING about what you're doing. How in the world do you get all of this done? I'm amazed, impressed, and in total awe of you!
You actually do all the painting? You know how to build a TV stand? I have no idea - and if I tried, I'm sure the TV would be on the floor in a million pieces when the TV stand broke!
Did I tell you I once wall papered a bathroom to surprise my husband? (I may have written this - not sure if it was this site or not.) I wanted to surprise him - so when he went to work, so did I! (Years and years ago - before PD!)
Problem was - I didn't know I had to prime the wall. So I spent hours matching up the pattern - had it all beautiful. I was so proud! When he came home, I led him into the bathroom. What I saw put me in shock! All of the paper had slithered off the wall and was in a pile on the floor - all pasted together. What a mess. (What an expense! We had to buy new wallpaper!)
So, I wouldn't even begin to try to build something.
I hope you are taking a well-deserved rest now, my friend! Take care- Hope

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/blinkie4.gif Hope
I had a week off work, no computer, so i had to be good
I said i was doing it last month, but never got round to it, I could never wall paper, I did help Jim but he always did it when i was in work, he said it was easier with out me,:eek:
I had a big TV unit before, which was fine till Jim bed came down stairs, and took the place of the sofa, which meant moving everything around, so I thought in for a penny in for a pound, I was surprise how easy it was, it took me almost a day, and yesterday, my daughter, came and help me move the TV on it, I remembered to label the leads, from the TV, Sky, and DVD:eek:, and this morning when i got up, i was :eek:to see it still standing

I have recycled the old unit into the garage, and used it for storage,
Today it's been gardening, and later, need to catch up on the ironing, as going to bingo Sunday, come sun, rain, snow, :D

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[Hope]

Hi, Heather! Hi, Everyone!
You have been a busy woman, Heather! How impressive with all you do. You are smart to label the cords. I do that at work - so when they move the computer and take it apart - and no one comes back to rehook everything up, I look at my little masking tape notes, (I even color code the ends of the cords to the back of the machine!) - and I can get it together. Without my "cheat sheet" - I'd be a mess!
I'm glad your daughter came over to help. Is she able to spend some time with Jim and give you some time off? Any other kids around???
My daughter is away for a week, my sister came in to visit/ help. It is GREAT! I took him for his physical trainer appointment but then my sister stayed with him so that I could run out and pay bills. It felt SO good - just to be able to run out and pay bills. I've been in the best mood! Now I'll get some housework done and she'll sit with him.
I have to paint the trim at the windows at the rental and do a final cleaning - AND I'M DONE!!! Hopefully someone will be moving in on Monday - so I'm finishing just in time. I've spent countless hours over there doing the priming, painting, staining, and cleaning. Now that THAT project is about done - I'll be able to concentrate on getting more done at our house!
Hope all is well. Good luck at Bingo, Heather! Hope

[heather]

Hello Hope
and you say I'm busy :eek: O.M.G. you have been sorting out 2 homes,hubby, and a visitor :eek:

my Daughter works in school dinners 9.30am to 11.30 am
then 4pm till 8pm in the local hospital, my son-in-law works shifts, so both busy, when he works afternoons, i have my 2 grandson's from 3.30 till 8.30 pm
my Son is a manager, and works 9 am till 5pm sometimes later, and my Daughter -in-law [ from Iceland] works 2 pm till 10 pm both Monday to Friday, so i have my youngest Grandson 5 days a week, they are my life line, and keep my young, they are so good and help me look after Jim
with working 3 days a week 9am to 1pm, and bingo when my friend can go, gives me enough break away from Jim

[ltd-addition]

Hope look on the medication and treatments for Conductive Education

Im unsure which country you live in but it may be benificial to read what I've wrote.

Keep smiling

ltd

[Hope]

Hi, Everyone!
I haven't been online for a while. It seems like nearly every moment has been taken up with his care, his needs, working, doing "normal" things such as banking, paying bills, buying groceries, etc.! I just LOVE those normal things!! While my sister was here, I could just get in the car and go to the bank. Not hold onto him, not try to open a door with my leg and behind while I hold both hands and get him in before the door closes (when no one else is around to help open the door!), where I could walk around the grocery at my own pace, look at whatever I wanted to look at, not have to watch his every step and take him to the men's room (!)...It was like a vacation!
But now we're back to normal. It's he and I. So, I'm with him a lot and taking him with me wherever I go. (You know how that goes!!!)
They say bad things happen in three. Well, I changed that saying. We're up to 4 - but at least the things are replacable. He is ok (thought we've had some bad days and a really bad fall - but nothing broken.)
When I was working at a rental, doing the final cleaning, I apparently picked up a couple of loose nails I didn't see - and they broke my vacuum. I ordered a part for the fridge at the rental, have been calling for a month for the part, and yesterday was told that the part may not come at all - they may have stopped making that model. I had better buy a new fridge, he told me. Great. (Just got word that the family moving in actually HAS a fridge - so I don't need to buy one now. YEAH!)
My washing machine broke - water all over the floor. I'm now doing laundry at a neighbor's. We'll need to get a washer today.
ALSO, his walker broke! No brakes. We have a second one, which he doesn't care for - but will have to use it.
I'm not complaining - it's all very expensive. BUT except for the fall - NOTHING HAS HAPPENED TO HIM. I have to keep that in mind.
If I can just keep things in perspective, I'm ok! By the way, I just thought of something - now I only have 3 bad things (!). Since I don't have to buy that fridge. Hmmm- I guess it really IS true!
I hope none of you have even one bad thing happen to you today! I hope it's a day (or evening) of quiet, peace, and maybe a smile. Please take care, my friends. Hope

[Hope]

Hi, Diane,
I was just reading posts I hadn't read or had missed. (Sometimes I start reading and he calls me away. And that's that for the computer and my touching base with others!)
Yes, in many ways, we share the same experiences. It's really hard. Life was so different for us before. We had a pretty normal marriage. He took care of the outside of the house, I took care of the inside. We both played with the kids. We went out - did things.
Now, it's just he and I. (I don't know HOW people do this with children still in the house, too.)
He does NOTHING without me doing something with him. He'll sit and stare at the TV if I let him. He'll watch the news over and over. When I ask him what's going on in the news (if it's a time he CAN speak) - he usually says he doesn't kow.
His mental capacity is much lower now. I bought him a word search (for children). He does an easy Sudoku puzzle book - but is constantly looking at the answers. That's ok - if he even gets a few on his own - I feel he's accomplished something. He does no exercises on his own - except the stationary bike. I work through other exercises with him. If he sits more than a couple of hours, he's stiff. So, I get him up and we exercise, go for a walk, get in the car and go to the grocery or a store - mainly to walk. My life is his needs. That's pretty much it. (Except for writing to all of you!!! - That I do for ME!)
But your husband is accusing you of horrible things. I think that would be the most difficult thing. Sure - it's hard to physically care for our husbands - but to have him not trust you and accuse you. That's so bad. I'm guessing it's his meds. (I've heard that from others.) Does the neurologist know about this??? Possibly another med or an added med to calm his accusing thoughts?
My husband is on Stalevo and Cymbalta (depression). The neurologist saw how much my husband has gone down but didn't want to up his dosage yet. He says there are side effects and it's better for my husband to be on the lowest dosage possible.
He's NEVER good on this dosage. But without it - or at times and I don't know why - he just freezes up. Can't move. He says his legs are like lead.
I got a book - something about 200 things you can do to make your life easier with PD. One of the ideas suggested moving side to side when you freeze. That works for him. Don't have a clue why - but who am I to question!!! I'm just glad it works!
Guess who is calling me! Time to take him to the gym to have a session with his trainer. (I stay with him to make sure he doesn't fall over!)
Take care. Please keep in touch. Hope

[heather]

Hi Hope
this i found good reading, but very long and a little heavy

www.neurology.org/cgi/content/abstract/56/12/1712

go down to the bottom of the page
to the 2 nd artical on physical Therapy
by M.E.Morris , again heavy and long, but good , click on full text,
If your not on for a few days i will come and look for you :D:D:D;)

for all my other friends
thought this might keep you thinking positive

"A proportion of individuals with PD live well into very old age, and it is not unusual for a person diagnosed with PD at the age of 60 years to be coping with the interactions between long-term disease progression and aging when he or she is 85 or 90 years of age. "

http://i10.photobucket.com/albums/a126/maesisaf/hugs49705.jpg

[Margie2]

Hi Hope
this i found good reading, but very long and a little heavy

www.neurology.org/cgi/content/abstract/56/12/1712 (http://www.neurology.org/cgi/content/abstract/56/12/1712)

go down to the bottom of the page
to the 2 nd artical on physical Therapy
by M.E.Morris , again heavy and long, but good , click on full text,
If your not on for a few days i will come and look for you :D:D:D;)

for all my other friends
thought this might keep you thinking positive

"A proportion of individuals with PD live well into very old age, and it is not unusual for a person diagnosed with PD at the age of 60 years to be coping with the interactions between long-term disease progression and aging when he or she is 85 or 90 years of age. "

http://i10.photobucket.com/albums/a126/maesisaf/hugs49705.jpg

Hi Heather,

It's me. Margie. Gee, you are sending Cyber Hugs...and I just sent a quote into Cyber Space. I finished writing to you and wanted to get fancy and add some pictures, and off went my quote...???

I haven't been on our Forum in a long time. It isn't because I didn't want to be here. I'm sad to say that Tony is doing very bad. He is also giving up. His neurologist put him on Stalevo two and a half weeks ago. We are hoping that this new medication will spark some life into my hubby. He won't try to do anything much on his own. All he says is, I can't I can't I can't...you don't understand, etc. He sits and stares at the tv and when I talk with him and ask him what he just saw...he says i don't know...just like Hope said her husband does.
I am not complaining just stating a fact that I am exhausted. There are times lately that I don't get out of the house for two or three days straight. I can't leave Tony by himself...he won't and neither will our son...agree to getting help.
Our son is helping his aunt out who just is starting radiation treatment. So when he is out of the house, it is just Tony and me.
I don't know what to do anymore. THe doctors are trying very hard...the neurologist said that if the Stalevo agrees with Tony and helps him, he will increase it a little at a time and then see what kind of physical theraphy would be good for Tony. It's not just his legs that are like lead...his entire body is turning into what looks like stone. He won't do any movements or exercise. He just sits and stares at the tv.
I've got to stop right now, dear Heather. I can't write anymore about this.
Please say hello to Jim from us...and let me give you a big hug and God Bless you for always being there for not only me but for all of us.
With love,
Margie

[suzie Q]

Margie

I hope by the time you read this The new drugs have started working for Tony. Maybe he will resppnd to physio therapy we all know if you dont use it you loose it .Myu thoughts are with you all the best

Sue

[heather]

Hi Heather,

It's me. Margie. Gee, you are sending Cyber Hugs...and I just sent a quote into Cyber Space. I finished writing to you and wanted to get fancy and add some pictures, and off went my quote...???

I haven't been on our Forum in a long time. It isn't because I didn't want to be here. I'm sad to say that Tony is doing very bad. He is also giving up. His neurologist put him on Stalevo two and a half weeks ago. We are hoping that this new medication will spark some life into my hubby. He won't try to do anything much on his own. All he says is, I can't I can't I can't...you don't understand, etc. He sits and stares at the tv and when I talk with him and ask him what he just saw...he says i don't know...just like Hope said her husband does.
I am not complaining just stating a fact that I am exhausted. There are times lately that I don't get out of the house for two or three days straight. I can't leave Tony by himself...he won't and neither will our son...agree to getting help.
Our son is helping his aunt out who just is starting radiation treatment. So when he is out of the house, it is just Tony and me.
I don't know what to do anymore. THe doctors are trying very hard...the neurologist said that if the Stalevo agrees with Tony and helps him, he will increase it a little at a time and then see what kind of physical theraphy would be good for Tony. It's not just his legs that are like lead...his entire body is turning into what looks like stone. He won't do any movements or exercise. He just sits and stares at the tv.
I've got to stop right now, dear Heather. I can't write anymore about this.
Please say hello to Jim from us...and let me give you a big hug and God Bless you for always being there for not only me but for all of us.
With love,
Margie

Hello my dear dear friend
I read the above with a ache in my heart for you
remember what i post is my opinion, and what has gone on in our lives

My dear friend, stand back and ask the question, has Tony given up, or is it just another stage of his illness
5 Years ago Jim had so many infections, one after the other, just like Tony, and it seemed to have left his body, but not mind tired, he also refused to let us have hands on help, and only that i go to work 3 mornings a week, i would never get out, it's funny but them 3 days when i come home, he is no different than when I'm not in work, I think he relaxes more, as I'm not around fussing, and making him do things.
What I'm say my friend, i think it's time not to look back, accept and build on today, or you will wear yourself out, worrying about something may be you can't change.

I am finishing work in August, for my reason's not Jim illness
I am 61 in August, and feel we need to start living our time more as a couple, I would love to do things in the green house, have the time to learn bobbin lace as a hobby
get up when I'm ready, not spend my days off doing all the jobs i rush on a weekend, on a sunny day just saying, we are going out today, not we can't because I'm off to work,

so it's not Jim's illness, it's something i would be doing if he was well, I call it closing another chapter in my book of life, and starting another

what I'm trying to say my dear friend, may be this is another chapter, that you need to think about, and readjust , please forgive me if i am wrong, and out of order, i only mean well

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[Hope]

Hi, Margie,
Our husbands sound alike in many ways. I know I must expect things to get worse. I try to do many things just to maintain him - and when I see him nonresponsive, my heart breaks, my eyes tear up, and I'm either unbearably sad or miserably angry at him for not fighting more.
But I know that he's just tired of fighting. It's too hard. For him to stand straight is as difficult for him as climbing a mountain would be for me.
My husband is also on Stalevo. I think it works better than other things that have been tried.
He also takes Cymbalta for depression. Is your husband on any depression meds? If not, perhaps it's time to discuss this with his doctor? If he IS on something, maybe another medication may help a bit more.
Can Tony be left alone for a half hour or so? When I need to mow or clean gutters (lots of trees clog them up so I'm constantly getting on a ladder and taking out junk!) - he's ok. I make sure he uses the bathroom, doesn't need meds or eye drops, has a snack if he wants one - then I put on something such as a basketball game - and I know he's ok. I can get out (even if it's just to the yard) - and that actually makes me feel better. The worst for me is sitting at home day after day after day.
Today I ran out do the laundramat (our washing machine broke) and I ran out for 20 min. a little later. I asked my husband if he'd like to go out - he replied, "I have no where to go." Not good. But it's Sunday night and there is really nothing going on that I can take him to. We'll go out for a walk and then sit outside in the yard. Maybe I'll give him a little glass of wine (!) if he wants. He doesn't speak - so conversation is out of the picture.
He does like listening to a good book on tape/CD. We're in the middle of one - so I think I'll take the tape recorder out and we can listen to it while we sip our wine!
Please know we are all with you and understand what you are feeling. You have an extended family - and we all care about you. Please let us know how Tony is doing - and you, too!
Heather, thanks for the site info. I'll check it out as soon as I can.
Be well, my friends. Hope

[heather]

you are welcome hope
it is a little long :D maybe read it if you can't sleep ;);)

[Hope]

Hi, Margie, Heather, and All!
Margie, I've been thinking about you. I just wanted to know how things were going. How's Tony? The same? Worse? Any better???
We aren't doing real well. Yesterday was a rough day. He was walking (holding onto a handrail or me) - putting one foot in almost directly in front of the other, as though he were walking a tightrope. I kept saying, "You need to separate your feet - you have no base of support. Please, move a foot to the side. Good. Now, big steps." But he shuffled, putting his toes down first. He had one fall. I left him alone, holding onto the door frame as I went and got my purse. (We always do this. He holds with one hand, I scoot behind him to get my keys/purse and while I'm a few steps away, he holds on with two hands. I don't know what happened, but I heard a crash. I pulled him up after making sure he was ok.
Later in the day - same steps. He nearly went over, but I was right behind him with my hands around his torso so I was able to keep him from going down. Problem is - he couldn't get his balance and straighten. I kept saying, "Bring your torso up - you're not going to fall. I've got you." And I did. It took forever for him to finally get up straight. So - he didn't fall, but today my back is really sore. This is NOT good! If he falls today, I won't be able to pick him up.
I'm sure his mood today will not be good. He'll take small steps - thinking that will keep him from falling. He didn't say anything this morning when I got him up. Usually I can get a "yes" or "no" out of him. He answered a few times - but only after I asked him a couple of times. The other times - no. I'm about to ask him if he'd like eggs or oatmeal for breakfast. Let's see how long this takes for me to get an answer.
Isn't this fun........ (not!).
Please take care, Everyone. Hope

[heather]

Hello Hope
sorry to hear things are still not very good , with hubby

http://i10.photobucket.com/albums/a126/maesisaf/30mess.gif

[Hope]

Hi,Everyone!
Actually today (so far) has not been a bad day. He seemed pretty good this a.m. No falls or near falls. I took him to work and had a few hours to myself. This really rejuvinated me. I went back to his work early - with books and magazines. I just sat and read until he was ready to leave.
Then it was home for dinner and off to his exercise session with the trainer. She asked me if I ever exercise - and I said, "no". She asked when he's doing something, could I just get on the treadmill. I responded that if he's sitting for a while, I'm cleaning a bathroom, making dinner, doing laundry, and if he's sitting for 40 min. or so - I'm mowing the grass! If I took this time to exercise (even though I KNOW it's good for me) - when would the sheets get changed, the kitchen cleaned, the gutters cleaned, etc. When he sits - I go to work!
But he's having a fudge pop now, he's exercised so he feels good, and soon I'll take him up and get him ready for bed.
What sometimes gets me is that there is NO down time. NO time to do just nothing. Every moment of my life has been taken up with his care, his needs, and keeping the house and lawn going. Strangely, many times, I don't mind at all. Other times, I just want to cry.
But today and tonight have been good. I treated myself to a new book today - something I rarely do. I hope it's good! When he's in bed - it's MY time. And I'll stay close to him but will begin a new adventure in my book.
Take care. Suzy, Mary, Margie, we haven't heard from you for a bit. Please let us know how you are doing! Hope

[Juanita Mullin]

Hope,
I am really sorry that you have such a difficult time. If we lived close by maybe we could help a bit. I hope this forum is helpful and cheering to you.
Juanita

[suzie Q]

Hi Hope

Enjoy your book i spent last weekend being lazy and read 2 books.i left the housework my hudsband was on night shift and i had to be quiet anyway.......thats my excuse and i am sticking to it lol...bye for now

Sue

[Hope]

Hi, All!
Thanks, Juanita, for your kind words. You are really sweet!
Suzie, good for you! You took some time off! You are my hero!!!!! I need to follow in your footsteps, my friende!
Today - he is working at home so I stay close. He's ok for a couple of hours, so I'll run to my workplace and get some things done. Later it's off to his acupuncture session. I know it has helped his eyelid (used to be shut - we were told the muscles surrounding the eye don't work and surgery would be the only way to open the lid. Ha! Since acupuncture, the eyelid is wide open and I can see his eyes again!) I don't know if it helps the PD. Sometimes "yes" - sometimes I can't see a difference. But he loves going and rests right though it. That's nice - he gets to take a $90 nap! I don't want to stop anything that he enjoys, though - since there is not much he enjoys anymore.
I have a saying I found recently. I saw it when I was in one of my dark times. It's beautiful. And I read it whenever I pass by it. (It's on my computer screen, at my work, will soon be in my kitchen, and is the last thing I see before turning off the light at night. Here it is: (no author given)
Life isn't about waiting for the storm to pass,
but learning how to dance in the rain.

Let's dance, my friends... Be well. Hope

[Hope]

Hi, Everyone!
I haven't been able to get on for a few days. Sick computer. And when I got it back tonight - it wouldn't open this site. Hmmm.
Today was a bit of a sad day. This is my husband's and my anniversary - not of the day we married, but of the day we met.
We used to talk about this day. But in the last few years - so much has changed. Today, like most days, we hardly spoke at all. I usually try to have some sort of talk going. He finds it too hard to speak. But today - I just kept thinking back to when I met him. How handsome. How strong. That great smile. And today, I saw him, and so much has changed. I used to draw strength knowing that he is the same inside. But that has changed as well. He sees me as critical of him (with my "stand up straight, take big steps" routine). He told a co-worker today that I'm mean.
Oh, that hurt. I try to help him - but I know he's sick of me saying the same thing. So, today, I decided not to correct him. If he bent over - he stayed bent over. If he walked with inch steps - that was fine. I'm told by everyone to keep him upright, to keep him moving, to keep him walking correctly. But if he thinks I'm just a big meanie - what's the point? We are in the autumn/winter of our lives. Do I want it to end with anger and disappointment?
So, today, I just shut up. I didn't say "take big steps...Good." I just didn't say anything. It was a lousy day for me. Maybe it was a good day for him? I don't know. I didn't even ask.
I met this handsome young man 39 years ago. This person who overcame so many difficulties. Who came to this country with only $7 and barely knowing the language. Who put himself through college and paid off all of his loans and still sent money back to his family, a man who I loved with all my heart - and was willing to give up my family to be with him.
Now, I have someone who is angry with me. Who thinks I'm a nag. Who can't talk. Who just sits here feeling alone and worthless.
I don't know what has happened...or why. It just all makes me so sad.
Happy anniversary, Love. You are asleep - so you won't even get this message. I'll whisper it to you - but you won't hear it.
Maybe tomorrow will be a better day than today was.
Take care, my friends. Hope

[heather]

Hi Hope
sorry to read you had such a sad day.:(
http://i10.photobucket.com/albums/a126/maesisaf/hugs46011.jpg

I keep meaning to ask where your husband works?, and what hours ?,
how do they cope with him? i work , does he walk for them?, does he talk with them then, to say you are mean:eek:

sorry so many questions, but it sounds he will do anything for anyone but you,

this is a problem i have with Jim, My opinion is that Jim feels after knowing him for over 43 years, and been married for 40 in August, that he doesn't need to make a effort/impression for me, I think Jim does things in front of other people, [smile nod head point etc ] so they take notice of him, and so people think I'm making up things, lucky his children no better


Because Jim can't talk ,walk, feed himself or any personal ,hygiene He has changed so much over the last 5 years, from a man of 16 stone + to some one who is under 10 stone , he must feel some resentment, but i don't let him take it out on me, i remind him I'm a human being, and lovingly give up my life to care for him

how was hubby when you stopped telling him what to do, how did you feel

you say you are in the Autumn/winter of life do you mean this in age or illness
please don't think I'm being hard etc my friend, as i no what you are feeling, it is a chapter in out lives we have been through, and as you can see come out OK, It may not be what we would have chosen, but we are still hear, OK some days feels like a salmon swimming up river , but then who said life was going to be fairy tale

I think maybe it's time you both sat down and discussed what both your needs are, what hubby wants, but let him no what you want and expect of him, tell him it was equal partnership you both agreed to so many years ago and still is

"Now, I have someone who is angry with me." Is he angery with you? or himself/PD he must realize how things have changed, his body image, his speech not walking NOT BEEN IN CONTROL etc etc, it must be hard, I no all these things /stages have made Jim a different person too the man I meet and married many years ago, to try and make sense of it I look at the bright side, we are still together, no matter what , we have put the past on the top shelf to collect dust, no point in bothering, about things we can't do anything about, we just work out what is for the best on a day to day bases , plan for the future, like we would have if he was well, and if it doesn't work out so what, who says it would have if he was well

I just keep remembering he is still the man i fell in love with all those years ago, the man i married, and had 2 lovely children with, but most of all will always be my best friend,
http://i10.photobucket.com/albums/a126/maesisaf/FriendQ6.gif
no one or thing can take all this away, life goes on, and everyone has to adjust make changes, only thing ours comes with a squatter / uninvited guest

http://i10.photobucket.com/albums/a126/maesisaf/friend3831.gif

http://i10.photobucket.com/albums/a126/maesisaf/Friendship6.jpg

[Hope]

Hi, Heather. Hi, Everyone,
Thank you so much for your letter, Heather. I was feeling a bit down the day I last wrote. (Can you tell????) I'll try to answer some of your questions.
He works 3 days in an office. I take him in, start his computer, take him to the bathroom, then make sure no deliveries came in that we need to deliver. (He orders for his office. If a box comes in, he can't open it - so I do. Then I ask him where it goes and we deliver it.)
He does not talk to anyone unless someone comes and talks to him. This hardly ever happens. He does not eat with the guys. They go to a lunchroom. That's too hard for him. I used to pack him lunches he could reheat in the office microwave. That became too hard for him over a year ago. So, he sits at his computer and works. He goes to the bathroom with his walker (has fallen several times in there and has laid there until someone came in, found him, and picked him up. Only happened 3 times - but that's 3 times too much.)
I pack his lunch in a small cooler that I leave at his desk.
Because he sits all day (except for the bathroom) - when he comes home, he's stiff and I need to exercise him or take him to the gym for an hour and a half.
Two days a week - he works here at home. I bring his computer home every Wed. and his papers - and he works here on Thursdays and Fridays.
He'll retire at the end of July. I'm now working on his retirement party.
You also asked about my comment of being in the autumn/ winter of our lives. He's 65, I'm a few years behind him. So, I guess (hope) that it's the autumn. Maybe the winter of our lives starts at 80?????
You also mentioned about having a talk. We don't have talks. If I'm talking - he'll listen. But he can't say more than a few words - and often those are too difficult for me to understand.
You wrote that he is your best friend. This sounds terrible - but I think I've lost my best friend. I have someone I love and always will. We've shared a life together. We've raised two amazing children. We have a history.
We laugh at times. I ask him questions - he answers with a yes or no. We do things together (his exercises). But as far as having a warm, loving relationship - I think that is gone.
I am here for him and will always be.
But he's no longer here for me. He just exists - and we try to make things as good as possible.
You also asked about the day I didn't make any suggestions. For his part - he spent the day all stooped over - in his chair, with his walker. He took terribly small steps - maybe an inch. He walked with his toes first. I was scared out of my witts that he'd go down. I held onto his walker - with one hand near him - to catch him in case he went down.
We said nothing - we walked in silence. I hated every minute of that walk. I was so afraid he'd fall.
There, my friend. Did I cover everything you asked?
Yesterday was a much better day. I was different. If I can keep my attitude upbeat and positive, I know it makes a big difference. Obviously. But at times - it's just too hard to do.
My own health is being affected by all of this. I had a doctor appointment (he was at work - so I could go!). If I don't relax at times and get some exercise - I could be compromising my own body. I can't afford to let that happen. What would happen to him???
The sun is shining - and I'm hoping to give him a good day today.
Take care. It is SO good talking to you. Be wel. Hope

[heather]

Hi Hope
Hope today is a good day for both of you

It's good he can still get to work 3 days a week, it's just a shame, that the others don't sit and have their lunch with him, even though he can't speak, I'm sure he would love to listen, and laugh with them, even though Jim can't speak, when any one comes hear and talks to him, his facial expression will change, other times he has the blank mask , this makes me feel good, as i now he hasent lost everything, and even though he shows it mainly with visitors I no deep down, my old Jim /friend is still hear, I have learned to look past his illness, and found his eyes say every thing, smile, :eek: annoyed, even yes and no etc etc, [hope that makes sense]

We gave Jim a family retirement when he was 65years it was 12 months last November [picture in my profile] he loved every moment, and said beer, we where so surprised, i made him a weak shandy, but had to Aspirate his stomach and flush him with water, but it was worth it as he loved it :D

Sounds like we are in the same season as you, I was 60 last August, and he was 66 last November

Jim can't talk but i tell him everything i have done today, and if i want to no anything, i try to ask a yes or no question, when he tries to talk, it is a stutter, which annoys him and makes it worse, he will shout a word clearly in temper :eek:

I don't think you awful at all my friend, I see you, as i Hope others see me, as a human being, with the same hopes needs and wishes as anyone, I'm sure he is still there with you, this is how i no Jim is still hear in body and mind, maybe not speech, but a expression /gesture says everything to me
Jim has had to have his bed downstairs [ against a wall ]for quiet a few years now, and I find it very lonely when i go to bed, But i make time each night , when i have finished seeing to his needs, to climb over and spend about 1 hour just laing with him, talking and I give him cuddles, as his arms/elbows are fixed across his chest, have even known to fall asleep, and waking up stiff, and difficult climbing back over him, if any one looked through the window, they would have a :D

Please don't take this wrong, and i don't think you did anything, wrong I would have done exactly the same, but i think in his way, he was having a good old row with you, and that was his way of doing it, "We said nothing - we walked in silence." the opposite to speech after all he is a human as you, and for want of a better word, I would have been pleased, but wouldn't tell him i was , as he was showing he still had some control

well I think between us we have wrote a best seller
and put the world to right
just hope it makes sense
hate writing

http://i10.photobucket.com/albums/a126/maesisaf/hahaolli51.gif

Please share this little friend with hubby
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[Mary]

Heather and Hope
I am so glad you two have each other to chat to.I read your threads and wish I could help but I am not in your situation and cannot offer any advice.
One thing for sure it makes me appreciate my life and how easy it is for me and my husband to cope even though we are older than both of you (me 65 husband 71)
Both of you take care of yourselves and give yourselves any relaxation that you can get
Mary:)

[Hope]

Thanks, Mary,
We sure are trying!!! What's your situation with your husband? You don't need to offer advice. I'd just love hearing from you! Take care- Hope

[Diane]

Dear Heather and Hope, kind friends, thank you so much for sharing your stories. Somehow it really does help to know that others are dealing with the same things we deal with --- not that I would wish this on anyone, but you are both an inspiration to those of us who read all you write on this site. Heather, I was sorry to see your afterthought, that you "hate writing". You are so good at putting difficult things in words.

We have had a hard week -- went to the neurologist on Monday. He told the dr. that the meds are working fine, and he no longer has the hallucinations or delusions. I disputed that and told the dr. that he is still very paranoid and suspicious, mostly of me. The dr. said, "That is the Parkinsons causing that." He increased the Zoloft and wants to hear in 2 weeks whether that is helping. I really hope it does. It is very hard to feel loving toward him when he says and does the things that are so hurtful. Later, my husband said, "Do you think we should get a divorce? You don't love me anymore."

I know it is the PD that has changed him, but he is no longer the man I fell in love with. I have tried to tell him that I do love him, but not in the way I did when we met. As Hope said, that warm, loving relationship is gone. It is sad and I know it is more of a loss to him than it is to me. His brother told me, "He is losing everything, bit at a time, and he has focused on his fear of losing you."

Heather, it is good to know that you and Jim have come through all these things together, and stronger than ever. I hope I will be able to say the same sometime in the future.

Anyway, I just wanted to say thank you to both of you and to all the other caregivers who share their stories. It makes me feel empowered to know that people do get through this, and I can do it, too.

Diane

[heather]

Hi Mary
I think this is why this forum works so well

the mixture of advice givers, on PD and carers ,and the support we have for each other
I can't give advice on Medication, as Jim's illness only mimics PD and medication doesn't work, but because we where told out of the blue 13 years + ago, that he had 7 years at the most , we decided no way so we then I have had to work things out as a team, it was a matter of sink or swim, and i wanted to learn to swim[ i can't swim :eek:]and together we have done OK

I love reading old posts , and read how people have been able to start opening up, and the support is becoming stronger and stronger each day

Mary this may sound strange, but i think i can say it because we have gone through most stages
but we also appreciate our lives, and now we have adjusted, i don't think i would change it, I no what is happening and with god's help and good friends
we are in control, I think of the people/ children who are told to late to adjust and live a life, hope that makes sense

[heather]

Dear Heather and Hope, kind friends, thank you so much for sharing your stories. Somehow it really does help to know that others are dealing with the same things we deal with --- not that I would wish this on anyone, but you are both an inspiration to those of us who read all you write on this site. Heather, I was sorry to see your afterthought, that you "hate writing". You are so good at putting difficult things in words.


We have had a hard week -- went to the neurologist on Monday. He told the dr. that the meds are working fine, and he no longer has the hallucinations or delusions. I disputed that and told the dr. that he is still very paranoid and suspicious, mostly of me. The dr. said, "That is the Parkinsons causing that." He increased the Zoloft and wants to hear in 2 weeks whether that is helping. I really hope it does. It is very hard to feel loving toward him when he says and does the things that are so hurtful. Later, my husband said, "Do you think we should get a divorce? You don't love me anymore."

I know it is the PD that has changed him, but he is no longer the man I fell in love with. I have tried to tell him that I do love him, but not in the way I did when we met. As Hope said, that warm, loving relationship is gone. It is sad and I know it is more of a loss to him than it is to me. His brother told me, "He is losing everything, bit at a time, and he has focused on his fear of losing you."

Heather, it is good to know that you and Jim have come through all these things together, and stronger than ever. I hope I will be able to say the same sometime in the future.

Anyway, I just wanted to say thank you to both of you and to all the other caregivers who share their stories. It makes me feel empowered to know that people do get through this, and I can do it, too.

Diane

Hello my dear friend
I have never been any good with spelling and big words, i type as i speak, but thank you
http://i10.photobucket.com/albums/a126/maesisaf/welcomeoie_glitters.gif
When Jim is on a bad day, or I'm feeling tired I to like you look and think this is not my husband, so i get my favorite picture of us taken just before he was diagnosed, and then say yes it is,
When he is nasty, I just say
" so today looks like it's going to be the day I love you but don't like you"
and when i I have been nasty, I say to him
"has today been the day you still love me but don't like me"
If you think back over all the years you have been married, have you ever in a argument said I DON'T LIKE YOU I no we have

Diane This says it all
His brother told me, "He is losing everything, bit at a time, and he has focused on his fear of losing you."
My dear friends, please don't take this wrong, i may be wrong, as i only no about you what i read on hear, and apologies if I'm wrong

Just step back take a deep breathe, are you trying to protect yourself could the above statement say YOU are losing everything......... and you have the fear of losing him, nothing is black and white, but if you look deep you will find the answerers

Love is the emblem of eternity;
it confounds all notions of time;
effaces all memory of beginning,
all fear of an end.

- Madame de Stael -

"and stronger than ever. I hope I will be able to say the same sometime in the future."
we all have a future, and now is the time to start building the foundations, not just because of illness, but because of the aging process

Love is a decision not an emotion or feeling,
that if made from the heart will outlast anything...
- Raul and Samantha Juarez -

This is one I have on my bedroom wall

Love is so very special
Yet can make you feel so lost
It can arrive just like the springtime
And melt away like morning frost

You must find ways to nurture
Always grow your love with care
Never ever take for granted
The love that you both share

Mistakes are bound to happen
You may hurt each other's heart
Yet don't give up to easily
It will tear your love apart

Love resembles a bright flame
That lights a dark starry night
Never ever let this flame burn down
Rekindle with all your might

Take a moment every day
Look deep into each other's eyes
Never hesitate to show affection
Small gestures will keep a love alive

Talk openly about your feelings
Take time to show that you care
Treasure each and every moment
Because to find true love is rare

- Connie Thomas Lugo -

http://i10.photobucket.com/albums/a126/maesisaf/hugsmilesapartCHRISaf5e6.jpg

[heather]

Heather and Hope
I am so glad you two have each other to chat to.I read your threads and wish I could help but I am not in your situation and cannot offer any advice.
One thing for sure it makes me appreciate my life and how easy it is for me and my husband to cope even though we are older than both of you (me 65 husband 71)
Both of you take care of yourselves and give yourselves any relaxation that you can get
Mary:)


Hi mary
I'm glad you are not, and with gods love, your strength , and our prayers never will be
I believe in talking openly, and if I'm right Hope as well
for people who come on hear and just look and that's fine, and the ones that do post will see /read something that will help them, be it know or later, and maybe give them the strength/ courage to post, and release some of their fears or questions

[Mary]

Hope
My husband suffers from ankolysing spondylitis a fusing of discs and joints but between us we can manage most things and we have three wonderful daughters who visit constantly.
That is why i count my blessings when i read threads from you Heather Diane and Margie 2
Heather
I do Know what you mean and I would rather read something straight to the point and without flowery and obscure language.
I think that the verse is so true about life and love .
I know you are preparing to retire and hope that you build in some time just for you
Take care of yourselves as you are all needed so much

Regards
Mary:):)

[heather]

Hi Mary
I'm dreading giving up work
I have been a community nurse in the same area for over 29 years,and will miss the company, but have to finish as Jim needs less time on his own, and this week with the grand children made me realize this more
I have started sorting out Jim's green house, i have plans to get heater and light etc, and do winter plants as well, as the winters are longer than the summer time, my brother is going to put out side electric.
we bought it him when he retired, and i like fiddling around, will never be as good as he was, he could grow anything,
Well thats the plan, fingers crossed

[Hope]

Hello, my friends,
Heather, I read your posts and think, "This woman must be an angel amongst angels." You give so much to Jim. You see so much goodness in all of what is going on. You make time to lay by his side and rub his arms. I think you must be up there high - on a pedastal.
I know giving up work will be horrible for you. For me, it would cause me a great deal of pain. When I'm working, I'm away from all of this. I have a chance to work with children - whom I love. I have a small sense of freedom. Here, I gear everything towards him and his needs - so I don't take care of myself at all until he's asleep.
Diane, when you wrote that your husband asked if it was time for a divorce, my heart broke. I just stopped reading and said, "Oh, no." Your poor husband - and you, too. I think you and I are much alike.
Of course we wouldn't think of divorce - but seeing and remembering the good of our relationship and what we once had - gets harder and harder. I'd love to be more like Heather. Maybe I can grow into that type of person - but for now, I'm not.
I'm loving, giving, caring. I do many things for him. I try to get him to laugh, to vary activities - but I don't feel a connection to him. It's more of nurse-patient. I want him comfortable and happy. I don't feel any of the love we once shared. I know it's there - it's just not showing up.
I sit on the couch and take his hand. He just sits there watching TV. I rub him for a few minutes at night. Again - he just lays there, falling asleep.
He rarely looks at me. He has this blank stare - off somewhere.
I take him to acupuncture, to see his trainer twice a week, to see his physcial therapist. I take him to the grocery - mainly to walk around with me. I ask him to pick out things, to buy what he wants. Often he gets things that I feel are too expensive or things we really don't need. But I keep my mouth shut and say thanks.
We will continue this journey together. It's the path we were given so I'll continue to do the best I can for him.
I think my own health may be starting to suffer. My doctor is giving me 6 months to start doing something for myself - or I may have to start on some medication for myself. I don't want to do that.
I'll hold you all in my thoughts. Please take care, Everyone. I'll keep in touch! Hope

[heather]

Hello good day to you all
Hope I'm no angel, I'm human, if i was a angel i would have flown away long long time ago
First remember we have had 13 years, so have had time to adjust, and the last 5 years I/we realized this is it, it was make or brake time, and i thought no way was it going to break us, that is the only reason I'm person I am, I still have days when i wonder what it is all about.
you both one day will look back and see what loving caring people i read in your post's ,I did a diploma 5 years ago in palliative care, and care of the dying, i think this also helped me to look at things differently, one of the things i learned, was i was going through the grieving proses for the man i once had, and nothing could change today, but i could change our future, , I realized i was fighting for me not Jim [[hope that makes sense ]
For approx 18 years we respite children with learning disabilities, all highly dependent, Andrew the last young man we had for 8 years, he died 4 years ago, [age 14 ] and when i think the fight Andrew had, made me realize we have a lot to be grateful for , we have had a good life and still do but on a different level
Mine is a lot easier than yours now, I no longer have to keep him walking etc etc ,

hope you said
You see so much goodness in all of what is going on.
If i didn't i would only have hatred, that i could not cope with, and would have wasted so much time and energy, good can out rule hatred.

I may be wrong, but Diane and Hope i thing, but posting on hear so openly will be starting to help you , I no it has helped me, I think you are starting to realize you are not alone, i now no I'm not, we are human, we have the right to be angry, hurt and this is normal in anyones life, as my old saying goes, we are only human
I still don't have a lot of time for me, my computer and green house are my release valves, I find it hurts now when i hear people say they are going on holiday, so i get the holiday snaps out, and together we just remember all the lovely times we had, I also ask is it because we can't go, would i go away if i could, who knows

I'm loving, giving, caring. I do many things for him. I try to get him to laugh, to vary activities - but I don't feel a connection to him. It's more of nurse-patient. I want him comfortable and happy. I don't feel any of the love we once shared. I know it's there - it's just not showing up.
I sit on the couch and take his hand. He just sits there watching TV. I rub him for a few minutes at night. Again - he just lays there, falling asleep.
He rarely looks at me. He has this blank stare - off somewhere.

I have become the opisite I'm not a nurse at home, i break all the rules, and do what works for us/me, I try hard not to let it all take over our lives , and if i don't have time to do somethings i just do them when i do

Stop trying so hard my love, he is comfortable and though you don't believe it well loved, may be not physically so what
have you thought he just falls asleep because he is contented ;)
well it's almost 3 Pm and must get ready to pick up Grandson number 1, before 2 and 3 come, tea, there goes our piece and quiet :p:D, catch up this evening

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[Diane]

I think Heather is right about feeling better after writing so frankly on this forum. It is therapeutic, thinking and considering while writing.

Even though my husband asked about divorce, we are really not considering it, and never will. He is my soulmate and I would not leave him (at least I think that now).

Once, about three years ago, I did move into our guesthouse (we don't have one now; we moved) and stayed for a couple of months. I would come down to the main house early in the morning and help him with everything he needed throughout the day and evening (we both still worked then). I fixed dinner and gave him his meds and watched tv with him until bedtime. Then I would kiss him goodnight and go up the hill to the guesthouse. When I decided to move back into the house with him, I told him, "I am not going to leave you, because I know it is the PD that is causing you to do and say those things. I will be here to help you." Later I told my best friend about it and she said (and this is the point of my telling this story): "That is when you stopped being his partner and started being his caregiver."

I have not been able to stop thinking of this statement. I believe she was right, sad though it is to say so. I feel I no longer have a partner, but a ward. There is no doubt that I still love him, but in a different way -- as a guardian can love her ward. He can no longer be the life partner I relied on for his sound judgment and clear-sighted advice. He believes he has seen and heard things which did not happen, and he does not remember important things which did happen. I now have to be the decision maker in almost all things. It makes him very angry on the occasions when he realizes it, but it cannot be helped. His memory and judgment are shot.

We will stay on this path, trying to learn to "dance in the rain".

Diane

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/helloelliphant.gif my Friend
I no in my heart of heart's you will be in it together through thick and thin, all you need to do is find the way that works for you two, that is why i always say this works for Jim and me
but matbe no one else

I think if you had not moved into the guest house maybe you would not have been together today, then we would never of become friends
I understand how you feel

I feel I no longer have a partner, but a ward. that is what i felt like, but it's funny now i don't, i think it has a lot to do with the grand children, as they see/ treat Jim no diffrent, and ask him things, and will say nain[grandmother]
is taid[granddad] telling us yes or no, and decide on the answere they want, then he :D
I discuse things with him, and tell him about bills to be paid, and what we have in the bank etc, but he knows i have to have the last word, but more often that that he can still node yes or no, and we come to a compramise, it does take a long time, and in the mornings/afternoon, as by evening time, he can't concentrate

Diane sorry i have forgot how old you are
but they do say their are 5 stages of love in our lives

5 Stages Of Love

by Ruth D. Kerce
What are the stages of love? Love develops between two partners in several different levels.

For love to endure, each level is important.

Let's break it down into five stages: (1) attraction, (2) romance, (3) passion, (4) intimacy, & (5) commitment.

Stage 1. ATTRACTION - a positive response to a person beyond friendship. This can further be broken down into two areas: (a) physical attraction & (b) emotional attraction.

a. Physical Attraction - happens when your body reacts to another person. Heart rate increases; temperature rises, palms get sweaty; stomach flutters; throat tightens; etc. This is the most superficial of "loves" on one level, but one of the most powerful on another. It represents the first contact.

b. Emotional Attraction - develops next if the circumstances are right. After being drawn to a person physically, you then begin to converse. If you find you have things in common -- hobbies, ideologies, career, education, or some other common ground -- then an emotional attraction starts to form.

An emotional attraction can also occur even when a physical attraction does not. And in this case, the bond may even be stronger between the two who connect, since no preconceived notions based on physical appearance has occurred.

Stage 2. ROMANCE - essentially an act of trying to influence or gain favor of another by lavishing attention or gifts upon them. There are two type of romance: (a) selfish romance & (b) selfless romance.

(a) Selfish Romance - occurs when you do romantic acts solely for the purpose of gaining something for yourself -- like to get gifts, to impress someone else, or even simply for sexual favors whether your partner is interested or not.

(b) Selfless Romance - occurs when you do romantic acts for the enjoyment and pleasure of your partner. You receive your enjoyment and pleasure through their happiness.

Selfish romance (& love) will quickly die out. Selfless romance (& love) will endure. Because romance is an "act," many couples who have been together a long time take it for granted. With a conscious effort, it can be rekindled.

Stage 3. PASSION - a desire for another person, which has grown to an intensity that can't be ignored. This is often where an emotional relationship turns into a physical relationship. The passion stage is very important. It's a plateau.

From here, the relationship will fork into two roads, and the couple must decide which path to take. The relationship will either burn itself out or will move onto the next stage.Stage 4. INTIMACY - a close association with another person of the deepest nature. You share you thoughts, your feelings, your dreams. In true intimacy, there is nothing that you cannot tell this person (though we often hesitate because of our own unfounded fears).

Intimacy is not total in one swoop. It is a developing process, which never ends. If you can't establish intimacy with your partner, your relationship may work for a while, but is unlikely to endure throughout the years.

Stage 5. COMMITMENT - a pledge to remain true to your mate throughout good and bad times. Commitment is easy when times are good. Commitment can be extremely difficult when times are bad. Learn to ride out the bad times.
If you've made it this far, why give up? Listen to each other, be willing to compromise, and remember why you got together in the first place.

Love is worth the effort ...Our's is stage 5

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[Hope]

Dear Diane, Heather, and all my friends,
Diane, I hear you loud and clear. I have so many of the same thoughts as you. Who knew that PD would make such a phenomenal change in our lives? My Dad had it - and it hardly ever showed. Just gave him his meds - and he was ok. It was the Alzheimers that caused the biggest stir.
But this PD is really the pitts!
Today I had a new experience (just goes to show you - we're always experiencing new things!). I took him to an exercise plance called the YMCA (Young Men's Chritian Association). It is all over the US and has tons of activites/programs for the young and old. He sees a trainer twice a week - who runs exercises with him, sees what he needs, and adjusts accordingly. Today, she had him practice getting up from a fall. He worked on machines for 40 min. Twenty minutes was devoted to standing up from a fall. She put down matts, had him get down, and worked through the steps of getting up. (Usually, I just take his hands and pull him up. Where I get the strength - I do not know but it's there! 155 pounds of dead weight - and I pull him up as though he's a feather. Hmmm- a super hero in disguise????)
After the hour was up, he went downstairs - but was having problems moving. We got to the bottom of the steps, I thanked her. She left to see her next client - and that's when the trouble started. His legs buckled. He said he couldn't straighten them. He was leaning backwards (as though on some sort of backboard). I told him to his bend his torso forward. He did. I asked him to straighten his legs. He said he couldn't. Then he went backwards again. I was holding him up, trying sweetly but firmly telling him to stand up and straighten his legs. He was taking miniscule steps and leaning backwards. I decided to keep us moving, try to get him out of the YMCA and to our car. But by the time we stepped out of the doors, he couldn't go on. He was slipping downwards. I was trying to hold him, so he wouldn't just fall in the parking lot where the cars were coming and going. Someone came up to me and asked if I needed help. Since I was holding up 155 pounds of dead weight, I emphatically said YES! She tried to help - but he was too heavy. Someone came and asked if I needed 911 (emergency services) and I said, "NO. I just need to get him to the car." Others came running to help as I was still holding him up and he couldn't walk and his knees were still buckling. It was horrible. One lady was a physical therapist, came running, and asked if I wanted him to sit down. We were in a traffic pattern - so I told her I need to get him to the car and away from traffic. She organized the people who came running. Two held him up under his underarms. Two held his legs and they all carried him to the car. Then it was the problem of getting him in. A staff person came running out - asking if I needed an ambulance. I didn't think so. If I just could get him home and in his chair!!!....
They got him in the car for me. Someone asked if I was ok. NO! I Wasn't! I was scared to death! But I had no one to turn to - and had to carry on myself. I thanked everyone. As the door closed, I saw the police coming. Someone must have called them. I drove for a while so he could relax. (I'd have to get him in the house and was dreading this!) I stopped, got him some lunch to take home, and we got home. He was better able to walk - but still with bent knees. But I got him in the house, into his chair, gave him his lunch, and now he's on the computer.
I should have spent the last hour or so cleaning, doing laundry, dusting, etc. BUT I'VE HAD IT!!! I'll start soon - but just wanted to write you and let you know how my day is going!
He may have stressed his muscles today. Or, the doctor upped his prescription yesterday. Maybe the meds aren't agreeing with him. He has been sitting for over 2 hours. I'll see how he is doing. We'll do some stretches and some sitting exercises until I know he can stand.
Such fun! Such joy! YUCK!!!!!!!!!!!!!!!!!!!!!!!
Anyway, I just wanted to say hi. I hope all of you are well and have a stress-free day. Hope

[Juanita Mullin]

Hope, I am so sorry. I don't know what I'd do in a situation like that--only here I'm the one with the PD. I'm glad there were people who could help you. I pray that things will go well for the two of you.
Juanita

[heather]

oh what a day for both of you Hope


http://i10.photobucket.com/albums/a126/maesisaf/hugs49705.jpg

[Hope]

Hi, Everyone!
I just want to check in and see if everyone is doing ok or not. What's happening with you and your loved ones?
I'm planning a birthday BBQ for my husband. My daughter is doing most of the cooking - I'm just left with shopping, setting up, and cleaning. When I get him in bed soon, I'll go down and get some more things done.
Things are doing better than they were last Saturday. But he still doesn't stand up straight, his legs bend as soon as he straightens them. The neurologist just upped his Stalevo. I don't know if that is having an effect on him (too much?) or if he's just having more problems.
Please keep in touch. I miss all of you and would love to hear from you. Tell me what's happening in your world!!
Be well and take care. Hope

[suzie Q]

Hi Hope

it is great that things have improved for you.Birthdays always cheer you up.i am at work waiting for 4.30 to come,it has been a quiet day .The weather here is terrible,it has not stopped raining for 2 days.We do need the rain but not all at once.Hppe that your party goes well,look forward to hearing about it.bye for now

Sue

[Hope]

Hi, Sue!
Thanks for writing! We've been working like crazy getting everything ready for tonight. Everything is done. Everything is ready - except for one teeny tiny problem. I have NOTHING to wear!!! I didn't have time to do laundry - the weather is so hot, I only have 2 light pair of slacks - and they aren't wearable right now. So, I'm sitting here - with 20 minutes before guests come - looking in my closet thinking, "Uh, oh. I have a problem!"
Forget anything fancy. I JUST NEED SOMETHING TO PUT ON THIS BODY! Yikes!!!
I'd better rummage through the closet again. The doorbell will soon ring - and the last thing anyone wants to see is what I'm wearing right now!!!
I'd better go....take care. I'll let you know how things went (and if I had any clothes on my bod!!!!!) hope

[Juanita Mullin]

Hi Hope,

You did find that you had something to wear? And your party went well? I hope it made your husband feel so good that it will affect his feelings for several days--and you too!
Juanita :D:D

[Hope]

Hi, Everyone,
Well, his party is over - and I think I shouldn't make any more of these. It didn't go as expected.
Yes, I did find something to put on my bod...a jeans and Tshirt (how exciting is THAT!).
Our plan was to barbeque chicken using his special sauce. But our grill wasn't working. We asked a neighbor to borrow his grill - thought for sure he's say, "Of course...I'll wheel it right over" - but he didn't. All we had was this very little grill. So we decided to bake the chicken in the oven and the lasts 15 min. - put it on the grill with the BBQ sauce. Guess who's stove decided to quit! After 45 min. of baking chicken - it was raw. HELP! People thought they'd be eating - and all I had was 10 pounds of raw chicken to give them.
OK - we can handle difficulties (as caregivers, we do this all of the time, right??). We decided to start cooking the chicken on the stove and took out all our big pots. Then, we'd transfer the chicken the last few minutes to our little "baby" grill - to get that BBQ flavor. But I couldn't be 2 places at the same time - and had to ask that neighbor if he'd be in charge of the chicken as I brought it out.
Needless to say, we ate an hour late. Two guests had to leave - and didn't get dinner. One said she came with an upset stomach and thought she should leave. Most people came in to eat - a few stayed out in the horrendous heat (don't know why). Then, she and her son felt so hot and uncomfortable, they left.
After the meal (for those who were left) - we showed a video we took in 1977 from my husband's village in India. Being there was like being in a time machine. Our guests were fascinated - as they watched how dishes are scrubbed with ashes from a fire, how the turban is wrapped, how the water is gotten on pulleys from the community well, how the oxen are attached to the wooden harnesses before going to the fields, etc. Following that- we had the ice cream pies my daughter made from scratch and sang Happy Birthday. This part was fun. (I had bought all sorts of strawberries and cherries to put out for people who didn't want fattening desserts - but forgot to put them out. Now - he and I will be eating like crazy to finish all of them before they go bad!
I thought we'd play cards, thought we'd sit outside when it got dark and enjoy some wine and the beautiful breezes. The citronella torches were lit and the area looked so beautiful - but no one saw it. After the desserts, it was 10:00 p.m. and they left. (If dinner hadn't been over an hour late - we would have had time to sit outside and visit.) So, I felt badly that they missed that.
But it's over. And it wore me out! I still have the yard to clean up - and will do that in a few minutes. My daughter, thankfully, took care of the clean-up inside.
I hope the guests enjoyed themselves. I didn't.
I wanted to toast my husband and planned on making a speech to him. But with all of the running with the chicken (!) - I didn't even think about it. After they all left, and we sat outside with the wine - I remembered I had a really nice speech planned. Oh well, maybe next year???
Now I move onto to other experiences...don't know what they are yet. But I hope they will be good ones.
How are all of you doing? What's going on in your lives? Please keep in touch. I love hearing from you! Hope

[Diane]

Hi, everyone. I hope everyone is doing well. We are suffering through a really hot period, with temps in the 100's (F) everyday. Not much cooler at night. Thank goodness for air conditioning and breezes.

Hey, Hope, don't let the chicken get you down! :) I am sure everyone enjoyed the party except you. Your husband had a chance to visit with everyone while you were running around with your hair on fire! I hope you at least found something comfortable to wear for your marathon dash from neighbor to kitchen to barbeque grill, carrying your chicken. In fact, I have just created an image in my mind of you, running amok with a tray of chicken, and your hair on fire! :D

We have been working on a single project for a couple of months now -- trying to buy a modest lake house about an hour from our home. We have run into title problems, and we are not sure when they will be cleared up. The previous owners, husband and wife, attempted to transfer the property to their son and daughter. The Dad died, and his will was not probated or filed. The Mom has Alzheimers and went into a nursing home -- but the deed she was supposed to sign was signed instead by the son and daughter. The title company has been dragging its feet; our first closer quit or was fired, and noone told me, so I was emailing into a black hole for one entire week. Then, the second closer told me the title work "should be finished this afternoon" -- and then left on vacation, again without any notice to me. Now (today) a third closer has finally described the title problems to me. They have no idea when the sale can close. :mad: The closing date was originally scheduled for June 27. We made the mistake of buying two storage buildings to move onto the property and they must be moved off their current location by July 8!!! Now I am getting really anxious :eek:

This all reminds me of something I read a long time ago about a stress management exercise that was tried on a group. They were all asked to try drawing a cartoon about any funny aspect of any stressful situation. They were to do this at home and at work, for a full week. The researchers found that the stress was de-fused by trying to do this, even in people who can't draw, and who didn't really find much funny in the situation. Just trying to see something funny was helpful! I wish I could remember to do that, in the heat of the moment.

Diane

[Hope]

Hi, Diane! Hi, Everyone!
I haven't been online for a while. Partly due to just feeling lousy about how things are going and partly due to my computer being sick and me not being able to touch base with all of you. I missed that! Maybe I could have gotten out of this funk if I could have just said hi to my cyberspace family!!!
Did I already tell you that a week ago the neurologist upped his meds by 100 mg a day? He said to try it for a week. My husband said he felt better - but he was having new problems. He couldn't stand straight - his knees were in a constant bend and he said he couldn't straighten them. He was walking in inch-two inch steps with toes first - ALL OF THE TIME. One day, when leaving the exercise gym that we go to 3-4 times a week - he simply couldn't stand. He had to be carried out to the car by 4 people.
On the fifth day of this - (just after picking up and paying for a prescription for this as the samples were out) - we decided to try and leave off the extra 100 mgs and see if there was a difference. He is doing SO much better - but for those 5 days, I thought my world was crashing. He was doing so badly - and it all happened so quickly.
He is doing so much better now. When his knees go down, at least now he can straighten them. His walk the last couple of days was much better. He still stands with his legs bent, his toes out, his torso bent over. But when I say, "Go through your 3 point check" - he knows to move his toes forward, straighten his knees, and straighten his torso. In the morning and at night, he goes right back into the former stance. I try to remind him 3-4 times - but if he's still going down after that, I just leave the room. When he's done taking his pills and brushing his teeth, he let's me know and I come back and take him to bed.
I'm in a MUCH better mood now. I tried to listen to positive music and read positive sayings - but nothing was helping. I was just so low and didn't even know if I'd get back up or not. But I did. And today was a really good day! (No birthday party - no raw chicken - no sitting on the bed thinking, "They'll be here in 4 minutes and I have nothing to put on my bod!" No, today was a really good day!
Diane, the next time I get down, I may try your idea of drawing something funny about the situation. It sounds like a good idea - if something funny can be made. I could have made a picture of the party - but it might have been x-rated and the platters of raw chicken and the running that went on would have looked really dumb. I guess that's the idea, right?
Take care, my friends. I hope you are doing well and your loved ones, too. Be well- Hope

[Hope]

Hi, Everyone!
I haven't heard from or read any posts from anyone lately. Are you OK??? Heather, I know you used to write all of the time - but have you been writing lately? I can't seem to get on the site anymore - don't know why. So, I just rely on seeing the messages in my email. Maybe everyone is ok and is writing - and I'm just not getting it.
I just wanted to say hi - and ask if you are all right. Please take care.
If I can figure out why I can't get on the site, that might solve my problems and easy my mind!!!! I'll keep trying.
Hope

[Diane]

Hi, Hope. We are ok. Looks like Heather has not posted anything in a couple of weeks. Heather, we need to hear from you. After you post so often, it is dangerous to the mental health of all the rest of us if you suddenly stop! :D We all enjoy your posts so much, even when we are not responding.

We are still trying to buy the place at the lake. We spent a few days out there over the 4th of July with lots of family and friends and fireworks and barbeque. It was a lot of fun, but my husband got overwrought about something (don't know what) and became very suspicious and paranoid. He called his sister and told her that our son and I were conspiring against him, and that I was about to leave him at the lake with no way to get back home! The changes in his meds were supposed to help stop these episodes, but I guess we don't have the dose right, yet. Now, he doesn't want to go anywhere without me and doesn't want me to go anywhere without him. He even wants to sit on my easy chair with me! (Now, you can think of a funny image, considering that the two of us overfill the easy chair, and cannot budge once he wedges us in!)

Still, it is better to smile!

I hope eveyone is on holiday and will come back on and tell us all about their adventures!

Diane

[Hope]

Hi, Diane,
Thanks so much for your note. I'm glad you had a good Fourth. Sorry that hubby is acting this way. It sounds like you know it's his meds - but does it still bother you? Or are you able to shrug it off?
Sometimes - when my husband does something, I can remind myself it's the illness. I can take it without a hassle. Other times, I'm not so patient.
What medication is causing your husband to feel badly? Is it for the PD? or depression? or something else. My husband is on Stavelo and Cymbalta.
You are right....HEATHER! WRITE US! Tell us if you are ok, please! We need to hear from you!!!
If anyone is in contact with Heather, please just post a note letting us know if she and her husband are ok or not. We need to know!
Take care, Doris - and everyone! Be well. Hope

[Diane]

I had an email from Heather. I am very happy to report that she will be back on the forum soon. She and Jim are doing ok, but she is having trouble at work, getting ready to retire. Her employer is giving her some hassle.

Her Mom has been having some health problems, too. Heather sends her love and appreciates everyone thinking of them when she can't come onto the forum.

Diane

[Hope]

Hey, Heather!
Thanks for letting me know Heather is ok. I worry about everyone when no one is writing. I wonder if something bad has happened, if someone is depressed, what's going on in each person's life.
It is SOOOOO good hearing from you! Tell me, what's going on with you? Are you doing all right??? Please talk to me - let me know how you are!
Keep in touch! I look forward to hearing from you. Hope

[Diane]

Hi, everyone. I haven't posted much lately, but I have been reading all your posts. I guess we all know that people are reading and keeping in touch, even when not posting. Let us hear from you, whenever you can.

Things have been pretty good for us in recent weeks. My husband was prescribed a higher dosage of Zoloft a few weeks ago, and I believe it is helping with the anxiety and paranoia. Our lives have been much more calm without all the suspicions and accusations.

We still have not closed on the purchase of the house at the lake, but we have been using it as though we own it. The seller can't get good title, yet, but we wanted to have the house for the summer months. We finally agreed with the seller that we would just go ahead and use it, pending closing.

It is a lot of fun and there are many projects for my husband to putter with. He is not good at "sitting around doing nothing" at the lake. I, on the other hand, am very good at that. On Saturday, the air conditioning was not working, so I took a book onto the deck and sat under a ceiling fan and read for hours. I cooked chicken on the charcoal grill (plenty of charcoal, Hope, in order to get the chicken really done :) ). Later, I fished while my husband sat in a lawn chair to watch. Unfortunately, there was little to see. I did not catch even one fish. I drowned many worms.

Our youngest son, Jack, graduated from high school in June and is enrolled in a university about 1.5 hours drive from home. He will live in a dorm. We will be empty nesters. I will miss him terribly, but it is wonderful seeing him growing into a fine young man and making good decisions (mostly).

Heather, I hope you and Jim are doing well, and that you will be back on the forum after your July 30 retirement. Is anyone planning a party? Do you have "work friends" you will stay in touch with? I hope it is a happy occasion and that the recent problem will dampen the high spirits. I know you will be looking forward to your gardening and hobbies.

Hope, where are you? Is everything OK?

Margie, same questions . . . is Tony doing any better? I hope you and he and your son are enjoying a peaceful time, as we are right now.

Everyone else, what are you up to? We want to hear from you.

Diane

[Diane]

I just re-read this message and saw my terrible typo. Heather, of course I meant "I hope it is a happy occasion and that the recent problem will NOT dampen the high spirits." Maybe everyone could see beyond what I typed, to what I meant.

Diane

[Diane]

Hope, where are you? Please let us hear.

Diane

[heather]

Hi Diane
just found this, you have been very busy
so glad you can get away to your little haven, can you use the computer there
when does your son start his new chapter in his life?
I remember when David left, but he was a 4 hour one way trip, so we never got to see him very often, mum always did the round trip,::( as Jim never liked driving
The girl's in work made a lunch, with a big cake, and lots of chocolate, [as i can't get out at night]
they made a collection, and i had a lovely pair of earing's , and a leather bag

[patsywilliamb]

Hi everyone i did register in jan this year as patsybryan but as i forgot the password i have had to reregister we live in the north of england uk my husband has advanced parkinson also a brain bleed five years ago has left him in a wheelchair we are both 70 plus I look after bryan with the help of carers he visits a day centre twice in a week he has just had a med review in hospital where the doctors decided the neupro patch was doing more harm than good he takes so many tablets i feel the side effects are worse than his condition we have been married for 50 years and i find it so hard to watch him struggle i have been through every emotion anger dispair depression why us! in the begining i was sure he would overcome this disease a form of denial i suppose he is now very ill and i feel so helpless and very lonely i have 3 lovely children 2 daughters and a wonderful son and 4 grandchildren they all make me feel that they are there for us both but how can you say that you feel like a widow but with out any freedom another emotion is guilt because you feel this way
patsy

[heather]

Hi Patsy
http://i10.photobucket.com/albums/a126/maesisaf/hellowelcomeback1.gif
Sorry to contradict you on your returning post
but please stop thinking the way you are
" another emotion is guilt because you feel this way "
you are a normal Human being, bet like me you often wonder, do other people remember this, because we cope, or look as if we are coping, they sometimes think we are superhuman
Just remember my friend, this forum is for us all, not just on good days [which we love and Cherish] but also the not so good days

I think we have all gone, or even still going through the denial stage, this is very normal, and can take a long time to get to the acceptance stage. I think you like me is starting on the grieving stage, grieving for what was, and no longer can be/have, what I do is Cherish what we have, and work on keeping it for as long as we have it
hope that makes sense
and please forgive me for being so blunt, but it is the only way I believe in calling things as they are, and getting on with it, if i can't change it
Take care and please come back again
once more I'm sorry if i was blunt, and please tell me so
http://i10.photobucket.com/albums/a126/maesisaf/hugs46011.jpg

[patsywilliamb]

Hi Heather Thank you so much for your reply the
photographs made me smile they are so friendly i am a bit of a novice on my laptop working out the website is taking some time i notice you are from north wales are you welch like me i was born in north wales you seem to be coping well i find that talking about pd and learning about the drugs from the internet helps and also as you said we are all only human bryan has trouble opening his eyes his sight is ok but he keeps shutting them have you heard of this i know some eyelids can remain open but have not heard of the reverse.
Patsy.

[Diane]

Hi, Patsy. Welcome.

Heather, I took my son to his new college campus and dorm yesterday. He actually starts classes tomorrow. He was so excited and so cute. Clueless. It was really fun to go with him and get all his "stuff" into the dorm room. He is about 1.5 hours away, and promises to visit often. He has a car and a parking permit.

That is my last little check out of the nest. I know the house will feel really empty this year.

Seems like such a short time ago that he was a toddler. I can still "feel" his little arms around me and "see" his pretty curls.

Diane

[Butterfly]

Hi everybody,
I have just joined the forum, so it is all new to me.

[Juanita Mullin]

Hi Butterfly,
A big welcome to you from all of us on the forum. You will find this is a really special place. We have some very special people, caring people. You will make new friends and feel right at home. Why not introduce yourself to us? Where are you from? Tell us some things about yourself.
Juanita :):):)

[Diane]

Hi, Butterfly. Welcome. Are you a parkie or a caregiver? I am caregiver for my 69-year-old husband, who was diagnosed ten years ago. He is still quite mobile, but he has the dementia that develops in a minority of PD sufferers. Everyone is different and every situation is different. Good luck on navigating the site.

Diane

[suzie Q]

hI BUTTERFLY


WELCOME TO THE FORUM HOPE TO HEAR MORE FROM YOU SOON

SUE

[Margie2]

http://i248.photobucket.com/albums/gg173/Shltie/BUTTERFLIES/xButterfly1a2-1.gif WELCOME
BUTTERFLY...


You will soon find out what wonderful people there are on here. They will try to help you whenever you need it. Give you a chuckle or two on any given day. Give excellent advice when you have a question and they have the answer. All in all I think you will soon be a permanent member visiting whenever time allows.

I am a caregiver along with my son to my husband who has PD. He was diagnosed 5 years ago but now we realize that he had PD a few years before he was diagnosed.

Hope to see you on here again. If you have difficulties with using the site you can try using the Help Page that is in the upper left hand corner in white lettering. Just click on this and see what it has to offer for your needs. If that doesn't help you much, just ask and someone will guide you through.

Again, http://i977.photobucket.com/albums/ae258/deina37/Welcome/Welcome-64.gif. Glad to have you aboard!

Lately I can't be on here as often as I used to be, or as wish I could. So I'll be here intermittently.

Margie2

[Margie2]

Hi, Butterfly. Welcome. Are you a parkie or a caregiver? I am caregiver for my 69-year-old husband, who was diagnosed ten years ago. He is still quite mobile, but he has the dementia that develops in a minority of PD sufferers. Everyone is different and every situation is different. Good luck on navigating the site.

Diane

Hi Diane, I've been thinking about you. I read your meaningful note to me a few days back but didn't answer to it. Please forgive me. i didn't do it on purpose.

It's so good just to be able to say hello.

Have you seen anything about the party that I think Pauline started? I must be looking in the wrong place. But I will catch up to everyone.

Save me some pizza http://i840.photobucket.com/albums/zz327/ncd1999/Supreme.jpg and a cold glass http://i867.photobucket.com/albums/ab235/crisb133/cold-beer.jpg of good beer ;). But you and the rest of our friends have to join us. OKAY? Have a pleasant day.
Margie2

[Margie2]

hI BUTTERFLY


WELCOME TO THE FORUM HOPE TO HEAR MORE FROM YOU SOON

SUE


Sue, I'm just here for a few minutes and I wanted to send you a special hello. I hope everything is going well for you. How have you been feeling? I've missed so many posts and threads I can't possibly catch up so from time to time I will have to ask different friends on here what they are feeling and what's new?

I have to sign out right now. Tony needs something.

http://i475.photobucket.com/albums/rr118/catspjamas_/Flowers/cat15-1.gifBefore I go I'm sending you these flowers and the little kitten just to make you smile.

Margie2

[Diane]

Margie, we miss you. I Hope everything is going well for you and Tony. I haven't seen any posts from Heather or Hope in recent weeks, either. If you can, please leave just a "Hello" note here, even if you don't have time to write a lot.

Diane

[Hope]

Hi, Everyone!
I didn't think this site was active anymore. I never received notices of people writing - so I stopped visiting. Bad idea!
I see some "old" names and lots of new ones. I'll come back. I'd love to know how everyone is doing.
I have so little time to get on the computer these days. I'm back at work; I have a caregiver for 4 hours a day. I leave for work late and leave work early to get back to my husband. When the caregiver leaves, he sits in his chair, takes a nap, then watches TV til I come home.
I'd love to keep in touch with all of you. Take care. I hope to read your writings and write back to you as well. Hope

[Juanita Mullin]

Welcome back, Hope! Its been a long time since we have seen you. It has been pretty slow on the forum for several months. Hopefully our friends will all be back on soon.
Hope to see you again soon, Hope.
Juanita :):)

[suzie Q]

Hi Hope and everyone else.i have also not been on as much as usual,mainly because there has not been much happening on here .hello to everyone even if you just come to look we should say hello i will in the future we dont want to loose the forum it is us who must keep it alive ...all the best to every one untill next time.


sue

[Diane]

Hello, everyone. I just wanted to say Hi. Not much going on here. I took a trip to California for a niece's wedding and my husband stayed home. He had help from his sister, our housekeeper/caregiver, our 18-year-old son, and a "night sitter". Everyone is saying, "I don't know how Diane does it!" Helping him is a full-time job best shared among lots of loving family and friends.:)

Diane

[Juanita Mullin]

Hi Diane,

Did you get your jacket finished? It was good that you could be away for a bit. Good that you have people to help out when you need them. How can we keep this forum alive until our people get back on again? It's hard to think of anything that may be of interest. I just read some crazy jokes so will put one of them on.

Our granddaughter who lives in New Zealand called to see if she and her family could spend two nights with us in the middle of November! But, OF COURSE!!! It will be great to have them visit. She has a two year old and a baby.

Hi and good night to anyone else who may be on.
Juanita :):)

[heather]

Hi Heather Thank you so much for your reply the
photographs made me smile they are so friendly i am a bit of a novice on my laptop working out the website is taking some time i notice you are from north wales are you welch like me i was born in north wales you seem to be coping well i find that talking about pd and learning about the drugs from the internet helps and also as you said we are all only human bryan has trouble opening his eyes his sight is ok but he keeps shutting them have you heard of this i know some eyelids can remain open but have not heard of the reverse.
Patsy.

Hi Patsy
sorry been so long getting back to you
Jim always sits with his eyes closed most of the time if it's just him and me, or if nothing much is going on, if i put a cowboy on the TV he watches it all the way through, or my brother visits and talks about when they worked together, i think it's a sign of boredom or lack of interest with Jim

[Mary]

Hi Juantia
Your babies will soon be seeing great grandmother I bet you are running around getting ready - enjoy their visit
Mary

[heather]

Juantia

Have a lovely time with your family