caregiving

[maple tree]

hi, i've been a care giver for about 15 yrs, have picked up lots of tips but still learning, so if anyone wants or can give ideas, hey fire away, looking forwaard to hearing from care givers every where.

Maple Tree

[carolyn]

Hi! I guess I'm not used to that term, caregiver, but I understand that's what I am as the wife of a man with pd. He has been diagnosed only about 2 years and is a program at Johns Hopkins. I would love to hear what to expect, tips, etc. So far, he works hard and has little trouble. His one hand does "freeze up" once in a while and he gets tired when driving. Some mornings he has a lot of muscle pain. Usually a massage helps a lot. We don't talk about it much....I guess I think the more normal life we can live, the better.

Thanks!

[Pete]

Hi Maple Tree,

what are two or three of the important tips you could share that help the most for caregivers?

Thanks so much!

Pete

[daughter who cares]

Hi Pete
my dad has had PD since age 55 or so. He is 75 now. My mom and I now have assumed alot of his care. One thing I have found is you have to let people help you. Home Health has been a great thing the last few years to help daddy after hospitalizations or illness. They work on speech, swallowing, and general exercise for balance & strength.
Keeping up with meds can be crutial,especially if you end up in hospital. They do not get PD at all. Also we have found that someone had to be there all the time because he could not always push the button for help.
Books and other info is helpful to stay on top of new info.
Hang in there and God bless.

[Bonnie]

Hello,

I am new to being a caregiver to my husband. He had a problem with his hip and needed it to be replaced - which happened a year ago. We thought that was why he had mobility issues but after that healed, his real problems began.

Looking back I realize that the muscle pains and balance problems were not the hip but Parkinson's. Since he has no tremors I didn't realize the situation. After a family member mentioned his facial features and symptoms looked like Parkinson's to her I did some research. Now I realize that this disease has many faces. Also, he had a cousin who also had P.

My husband was sort of dx from his primary care with Parkinson's and told to go see a specialist - which he refuses to do. Then when he had some PT they also said he had it but so far no "official" dx.

We now do chair excercises but basically he just sits all day as his legs hurt him so much he cannot walk or stand. As I said, he refuses to go to a doctor or pursue any type of therapy. I live with it and accept his decision.

It is nice to have a place to write these things and talk.

Thanks for listening! Bonnie

[JoAnn]

hi. my husband was diagnosed with pd about 5 years ago. he is still pretty mobile with some tremors, but the meds seem to help that a lot. his real problem is with his "mind". his comprehension is just not there and things that he use to be able to do with little or no thought now are almost impossible for him. he relies on me for everything regarding how to do things and when he does try he can't "see" the things he is trying to do. we have been to eye physicians for the past year and they keep trying to improve his vision, but the neuor. says it is not his eyes it is that his brain isn't processing what the eyes are seeing. does anyone have any tricks to try and help him with this. airicept doesn't seem to help.

thanks.

joAnn

[grldnklly]

Hi,
I am my father's carer. He has had PD for 7 years. He is on madapor and amantadine. The neurologist has tried him on lots of other medication, but he has reacted against them in one way or another. I also find that he can't seem to manage every day tasks. His mind is very clear (it's not dementia), but he can't seem to plan a task from beginning to end. He was never like this. He was always a very capable man. It's as if he has lost all his self-confidence. We never had to hire a trades person to do any of the work in our house, my father was always able to do it himself. Before taking PD he carried out the maintenance in our house and in my two brother's houses.

[Jackie Heideman]

Hi to All
I guess I never thought of myself as a "caregiver" though I am finding that my husband, who has PD for about 5 years, is relying more and more on me for many things. My parents are actually the ones who noticed that he walked with one arm that didn't move. Then he was tired most of the time. His handwritting got so small you could hardly read it. My daughter has a friend who's father was diagnosed with PD and with further discussion with her family, we found many similarities. My husband was very reluctant to seek neurological help as his primary physician didn't believe it was PD because he was so mobile. Turns out it was and we have been trying to live as normal a life as possible. To complicate matters, he had a back surgery that went wrong and he now has realy problems with walking and balance. Any advice on leg pain and stifness would be so appreciated. I am thankful for this forum, will be a regular participant.

[Jackie Heideman]

To, "daughter who cares"
Could your mom give me some ideas about how her life goes on from day to day with the responsibity of care giving to your dad? My husband too was 55ish and it has only been 5 years. I would really like to hear some personal information.......I have trouble with no expression in my wonderful husband's face. :(

[grldnklly]

I am sorry but my father was diagnosed with Parkinsons on the day my mother died. In one way I am glad she is not here to have to deal with it, but on the other hand I think my father would probably cope better if he had her here with him. I can't speak as a wife or a partner, but I know what you meant about the lack of expression. I can say that as a daughter I miss having a father. He has changed so much. He (who was once a strong and independent man) now relies fully on me to make his every day decisions. I never thought I would see this day. On the other hand, I now have a relationship with my father that I wouldn't have had if he didn't have Parkinsons. Give your husband a bit of time to get used to the idea and yourself the opportunity to adjust, God is good. Things can never be the same, but there's a lot of good things. You are still the same people

[djselah]

Hi all and Thanks Lianne for starting this forum. You are special!
My husband was just diagnosed a few weeks ago. We noticed huge changes for the past year and he was being treated for depression, but when he started falling more and more along with shuffled gait, cognitive issues, and unexpressive face, we knew there had to be more. They think he also had several mini strokes. We are dealing with the news, but he was a fuel tanker driver for 40 years, and had to leave his job due to the symptoms. Tried another local driving job for a few weeks, but they had to let him go to due to safety issues. Now we are working on disability with SS. Its scary not knowing how devastating this will be financially. We were only a few years from retirement, so it is discouraging. I am only able to work 30 hrs. a week since I have CFIDS. We have been married for almost 5 years.
The only thing that gives me hope is knowing God will be there with us on this path. Talking to others who know what we are experiencing will help immensely, I am sure. I know I have to find the fineline between caregiver and taking care of myself. God Bless,
Donna

[Bonnie]

Hello JoAnn,

My husband also has complained about his eyes and not being able to see. He had them checked and they are fine but your comment that while they can see they just do not comprehend. That is very helpful for me. I am sorry I am of no help in resolving this problem but will look forward to someone else to guide us.

I also relate to Jackie as she mentions her husbands face and the lack of expression. We began to notice this in photos some years ago and wondered about why it was that way. Now we know.

This forum should be a benefit for us all.

Bonnie:)

[Anne]

Does anyone know how to determine what to expect in the progression of the disease; meaning, do some people become very disabled within a few years and others have relatively few symptoms for many years? Does the age at diagnosis factor into how quickly the disease progresses? How does one go about planning for the future ( travel, health care needs, etc.) if one doesn't know when certain symptoms will manifest themselves? Is it a waiting game?
Anne

[grldnklly]

Hi Anne,
I am no expert, but speaking from my own experiences I don't think they can really determine what will or will not happen with Parkinsons. My father has had Parkinsons for 7 years and his state changes from week to week. After saying that, there can be good surprises as well as bad. Because someone cannot do something today, does not always mean that they won't be able to do it tomorrow. I took my father home from hospital the Christmas before last expecting that he would have to use a zimmer to get around the house and that he would require a wheelchair for outside use. He needs neither! Although he hasn't the confidence to leave the house on his own, him and I walk a mile every morning!
When he was diagnosed at 68 years of age I was told that it would progress very slowly and that it wouldn't effect him at all. Well, this definitely has not been the case. He can no longer drive and has a host of problems, but as I said earlier it changes from week to week. If someone gets the right medication it can make such a change. Never give up! I have a friend who was diagnosed in his late 30's. He is now 80 and living in a nursing home. Up until 6 years ago he was able to stay in his own home. One day I would see this friend and he would hardly be able to walk, the next day I would see him he would be out cutting hedges. In my experience getting the right meds seems to mean a lot. The other thing I have noticed with my father is that stress can cause a big deterioration in his condition. There just seems to be so many factors. My advice would be never give up and never accept were you are at - there's always something that can be done to improve it. As a carer, you are the one that has to stay positive and I know that can be hard! God bless

[suebell]

Hi, my name is Sue and my husband (age 67) was diagnosed almost 3 years ago. So far the tremors are very mild, mostly when he is holding something. But like JoAnn, I am having a really hard time with his memory/concentration. Many times I have to repeat things 3-4 times. I try to keep my composure, but some days it's really hard. He really has a lot of drooling and his speech gets hard to understand. He sleeps most of the day and wanders around the house most of the night. Sleeping with him is impossible, he thrashes around and gets up so many times. If I send him to the store for more than one thing, I have to write it down or he will forget. He still drives himself around, but whenever we go anyplace together, I do all the driving.....he makes me too nervous. He has accepted this. But some days he accuses me of thinking "he is dumb, or something". I worry about what things will be like 5 years down the road.

This forum is just great, having a place to share thoughts or just to vent after a difficult day.

Sue

[gertrud7]

Hi Ann - my husband was diagnosed with PSP. He cannot walk for any distance but we still travel - trying to keep a "normal" lifestyle. The airlines are very helpful - starting at checkin - ask for bulkhead seats - more room to maneuvre around and also pre-arrange wheelchair assitance - this works also outside the US.

[MargieB]

Hi to All
I guess I never thought of myself as a "caregiver" though I am finding that my husband, who has PD for about 5 years, is relying more and more on me for many things. My parents are actually the ones who noticed that he walked with one arm that didn't move. Then he was tired most of the time. His handwritting got so small you could hardly read it. My daughter has a friend who's father was diagnosed with PD and with further discussion with her family, we found many similarities. My husband was very reluctant to seek neurological help as his primary physician didn't believe it was PD because he was so mobile. Turns out it was and we have been trying to live as normal a life as possible. To complicate matters, he had a back surgery that went wrong and he now has realy problems with walking and balance. Any advice on leg pain and stifness would be so appreciated. I am thankful for this forum, will be a regular participant.

Hi Jackie,
My name is Margie. My husband was diagnosed with PD approximately 3 years ago. He also has leg pain and stiffness. Just on his last doctor's visit the doctor told him about a product called Stopain Extra Strength. It is a pain relief spray sold over the counter in most drugs stores. We got ours at a store called Rite Aid. The few times my husband has used it, he has gotten some relief from his leg pain. Enough to make him more comfortable. This product also comes in a Roll-on and cream. The company that makes it has a web sit www.stopain.com. They say that the formulas "pentrate deep, provide long-lasting relief and work fast". So far, so good. It is the first product that has given my husband some relief. I hope that if you get this product it provides your husband with some relief too.

Keep up the team work. We can't and won't give up. Who knows - a cure might be in the making right now.

I will keep you, your husband and family in my prayers.

Margie:)

[janine chrispin]

Hi am caring for my mother who was diagnosed around 3 years ago. We had an extension built on the lower floor of our to accommodate her so she doesn't have to use the stairs. She is coping pretty well although her ankles seem to get really stiff and she has trouble walking. She also has really itchy skin on her legs (any advice regarding these would be greatly appreciated).

As well as my mum, I have a husband, 2 children, 4 dogs (one elderly) and I am self employed! So life is hectic here!

Janine

[ellenjane]

Dear Sue,
Regarding the drooling: Ask your doctor about Botox injections. My Dad's neurologist (who specializes in movement disorders) gives my Dad Botox injections into his salivary glands. The Botox helps tremendously! It has made a huge difference for him.
My Dad has advanced PD. (He was diagnosed 20 years ago at age 55. When he first started taking Sinemet, he took two a day. Now he takes 15.) Dad needs a wheelchair full time now, but fortunately he is still able to transfer on his own. Everyone at his assisted living residence is amazed at his determination and independence. Don't give up!
ellenjane

[MargieB]

Hi am caring for my mother who was diagnosed around 3 years ago. We had an extension built on the lower floor of our to accommodate her so she doesn't have to use the stairs. She is coping pretty well although her ankles seem to get really stiff and she has trouble walking. She also has really itchy skin on her legs (any advice regarding these would be greatly appreciated).

As well as my mum, I have a husband, 2 children, 4 dogs (one elderly) and I am self employed! So life is hectic here!

Janine

Hi Janine,

My name is Margie. My husband has PD. We have three children. Two are married. One is single and home with us. We used to have two dogs and three cats for over 20 years. Now I have a pet guinea pig named Dickens for 2 years. He is a good companion believe it or not. He is like a mini, mini puppy.

Regarding the itchiness that your Mother has on her legs - there is an older medication by the name of Atarax. It is a prescription drug. It helps greatly for rashes, hives, itching in all areas of the body. I would like to suggest you mention/talk this over with your doctor to see if your Mother can take it along with her PD medications and if it is something that would be good for her condition on her legs. Good luck. I hope your Mother feels better with the itchiness. very soon.

I always have some on hand because I have flare ups of extreme itchiness and rashes that can drive me up a wall. I do not take the Atarax on a regular basis, but when the rash, itchiness comes the Atarax relieves me within 15 to 20 minutes.

God Bless.
Margie

[Sharron]

Hi, my name is Sharron and my husband (aged 67) was diagnosed with PD nearly 20 years ago. I guess the progression of his illness has been relatively slow but for the last couple of years life has been getting more difficult. It is really nice to read comments from other carers and know that we are not alone. It is only quite recently that I started thinking of myself less as a partner and more as a carer, and that has been difficult for us both to deal with.

Thanks for this forum Lianna. Keep up the good work.

[heather]

Hi! I guess I'm not used to that term, caregiver, but I understand that's what I am as the wife of a man with pd. He has been diagnosed only about 2 years and is a program at Johns Hopkins. I would love to hear what to expect, tips, etc. So far, he works hard and has little trouble. His one hand does "freeze up" once in a while and he gets tired when driving. Some mornings he has a lot of muscle pain. Usually a massage helps a lot. We don't talk about it much....I guess I think the more normal life we can live, the better.

Thanks!
Hi carolyn
i have cared for my husband for 12 years the last 5 he has become full dependent on me, i work 9-1 3 days a week,other wise i would walk the walls
he was was diagnosed with Olivopontocerebellar degeniration, it imitates PD but no treatment available,as no one seems to no much about it,so i have been caring for him like PD
He was 53yrs when diagnosed but MRI scan showed he had it for many years before
The most important thing we have done,is to talk about it
12years ago they gave him 7 years to live, so we joke he is well passed his sell buy date, if we had not been open from the start ,there would have been lot's of time, when i needed help i would not have been able to ask ,or done it all on the QT, by doing this, we have been able to discuss everything, and up to today he is still in control of his own care,
Just remember it's you two that have to deal with this, so you two must stay in control

[heather]

Hi, my name is Sue and my husband (age 67) was diagnosed almost 3 years ago. So far the tremors are very mild, mostly when he is holding something. But like JoAnn, I am having a really hard time with his memory/concentration. Many times I have to repeat things 3-4 times. I try to keep my composure, but some days it's really hard. He really has a lot of drooling and his speech gets hard to understand. He sleeps most of the day and wanders around the house most of the night. Sleeping with him is impossible, he thrashes around and gets up so many times. If I send him to the store for more than one thing, I have to write it down or he will forget. He still drives himself around, but whenever we go anyplace together, I do all the driving.....he makes me too nervous. He has accepted this. But some days he accuses me of thinking "he is dumb, or something". I worry about what things will be like 5 years down the road.

This forum is just great, having a place to share thoughts or just to vent after a difficult day.

Sue

Hi Sue
I'm not going to say that in 5 years things will be better, but what i can promise,that if you both work together, be honest and open, you will cope more, listen to each other, and if any Professionals,say do this do that, and you don't feel it will work tell them , you will both work it
what i noticed was , that the slower i told Jim any thing important, he retained it
The drooling was horrid, and so embarrassing, my Gp put him on Scopoderm TTS [hyoscine] patch 1.5MG, it say put it behind the ear but i kept forgetting and washing it off:),it worked with in 48 hour's and i no immediately if i have forgotten to change it every 3 days
[

[heather]

Hi am caring for my mother who was diagnosed around 3 years ago. We had an extension built on the lower floor of our to accommodate her so she doesn't have to use the stairs. She is coping pretty well although her ankles seem to get really stiff and she has trouble walking. She also has really itchy skin on her legs (any advice regarding these would be greatly appreciated).

As well as my mum, I have a husband, 2 children, 4 dogs (one elderly) and I am self employed! So life is hectic here!

Janine
Hi Janine
If it's caused by dry skin
i use Body Butter from The Body Shop
it is expensive, but you only need a little
he has dry flaky skin mainly on his face neck and behind his ears, all the creams off the GP did nothing, when i put it on, his face looks read, a few minutes it's gone and the itching stops
hope that helps

[JoAnn]

Hello Sue...It sounds like our husbands have very similar symptons. My husband also drools alot. We were told to have him suck on something so he has to swallow, and to try and remember to swallow before speaking. His voice also sometimes gets very hard to hear. We have a Parkinsons Institute in St Paul that we were referred to and they worked with him on making his voice louder and certain exercises to keep up with his walking and other things that have been helpful. He forgets so I have to remind him but he is willing to go along with "the program." He sleeps really well at night, but he does thrash sometimes and on occassion will literally throw himself off the bed. He sometimes has quite a bit of ambition and will do little chores but takes him a long time to finish. But that's ok. At least he is keeping busy. He does still golf but has good friends that help him. He also has trouble remembering things if I send him to the store so I too write things down. But it is good to know that he is not the only one with these symptoms. And it helps me to be able to talk to someone who is going through very similarl things.

God Bless and I will be watching for how your husband is doing down the road.

JoAnn

[suebell]

JoAnn, Our hubbies sound so very similar. We live in a very small town in the Upper Peninsula of Michigan. We have to drive 90 miles to see his neurologist.....and she is very busy so appointments are few and far between.

Sometimes hubby will do a little yard work, and I encourage that. But then he complains that I never help him. He still golfs, too in a friendly "old-timers" league. Our son is the manager of the golf club, so he sort of keeps an eye on him for me. Have you noticed mood swings with your hubby? Some days mine can get irritated over nothing, and other days he can't thank me enough for everything I do for him. I have found that I have to monitor his meds everyday or he gets them mixed up and then tells me there "aren't any pills for tomorrow".......which usually means he took them twice today. This has caused some serious side effects. Hallucinations! He had problems last fall when he was at hunting camp and started seeing guys sitting on the couch and down at his deer blind......I know that I had his meds all sorted by date & time when he went to camp, but he must have doubled up a few times....thus the problems. His doctor said too many pills too often can cause this side effect. Sometimes I feel so trapped....like I shouldn't leave him for any length of time. One of our kids lives here in town and the other one is about an hour away.....they don't spend enough time with him to know about all his problems.

It's nice to be able to "talk" to others that share similar problems. Thanks for listening.
Sue

[heather]

JoAnn, Our hubbies sound so very similar. We live in a very small town in the Upper Peninsula of Michigan. We have to drive 90 miles to see his neurologist.....and she is very busy so appointments are few and far between.

Sometimes hubby will do a little yard work, and I encourage that. But then he complains that I never help him. He still golfs, too in a friendly "old-timers" league. Our son is the manager of the golf club, so he sort of keeps an eye on him for me. Have you noticed mood swings with your hubby? Some days mine can get irritated over nothing, and other days he can't thank me enough for everything I do for him. I have found that I have to monitor his meds everyday or he gets them mixed up and then tells me there "aren't any pills for tomorrow".......which usually means he took them twice today. This has caused some serious side effects. Hallucinations! He had problems last fall when he was at hunting camp and started seeing guys sitting on the couch and down at his deer blind......I know that I had his meds all sorted by date & time when he went to camp, but he must have doubled up a few times....thus the problems. His doctor said too many pills too often can cause this side effect. Sometimes I feel so trapped....like I shouldn't leave him for any length of time. One of our kids lives here in town and the other one is about an hour away.....they don't spend enough time with him to know about all his problems.

It's nice to be able to "talk" to others that share similar problems. Thanks for listening.
Sue

Hi Sue
hope you are on a good day,and hubby is well
I had the same problem with my hubby with mood swings,I put this down to him trying to get his head around it at well, they where worse when he got frustrated.
It's lovely hubby is still golfing and doing things, hope you get sometime to spoil yourself on theses days
The medication was a problem with him, he became obsessed,over them, and they started to take over our lives
I bought a daily/weekly tray,and I put them out for the week on a Sunday, and then just put one days out for him, and hide the rest,it worked a treat
my children both live locally,with our grandchildren
my Grand children have all except taide [granddad] is not well, but my children [girl 38 Son 35] still at times play Ostrage [spelling ugh ] and have no idea, they no i have a lot to do, but never seen what, but are always their
when i need them
for want of a better word,i am lucky, my husband is not mobile, so i don't have to worry what he is up to when i go out

take care Sue

[Diane]

Sue (and all who posted about this topic), thank you so much. My husband was diagnosed about 10 years ago, and I have not been able to tell what is a "normal" PD problem and what might be something else. My husband still teaches, but he cannot remember our phone number. He loses everything, over and over again. He is a dangerous driver, but refuses to give up the keys. He cannot keep track of his meds, so he is always trying to order meds we already have. I know this is all so hard for him, and I try to stay calm, but sometimes I hear myself getting shrill and saying "WHAT ARE YOU DOING?" I need to decide when to take some decisions away from him. How do you know when to take the car away? How do you do it, if he won't cooperate?

This forum is a Godsend!
Diane

[heather]

Hi Sue
have you thought of see your GP,he should be able to advise you
i would see him on my own first, as you will be aware, what you discuses with Your GP is confidential ,but he should be able to help you .
I have found the neurologist is always to busy to talk,and it would mean your husband would be with you.
The shouting is normal, don't forget you are normal/ human , and are under as much stress as hubby,
take care

[suebell]

Sometimes the different symptoms my hubby shows remind me of his mother when she had Alzheimers. He accused me the other night of "leaving things all around on the living room floor." There wasn't anything there, but apparently he had stumbled over his own two feet. After dark, he absoluetly cannot see anything in the house. He carries a flashlight all the time. He has flashlights in the living room, the bedroom, the kitchen......No furniture has changed places in our home, but he can't seem to find his way in dim light. (I can get up during the night and go to the bathroom with my eyes closed, because the way hasn't changed in 30 years.....)

He has trouble with buttons and zippers and is really slow tying his shoes. I'm learning to get him started 10-15 minutes ahead of schedule so we can both be ready to go at the same time.

I don't know when the proper time will be for he & I to discuss his changing condition as far as driving, running the chain saw, watching the grandkids, etc. etc. We both have Durable Powers of Attorney drawn up...so when the time comes, I will be able to make decisions for him....but will he be at the point that he will accept this????? I wonder.

He seems to listen to his neurologist and will usually do anything she suggests. Only problem is, I never get a chance to talk to her without him being there. I hardly get a chance to talk to anyone without him being "right there." My freedom is the computer because he doesn't know how to use it. I can easily zap what I'm doing before he sees it. He thinks I just play games most of the time (which I do way too much!)

It's sure nice to be able to "talk" to all of you who are experiencing much of the same things that I am. God Bless each and every one of you.
Sue

[daughter who cares]

Jackie, my mom is 75 yrs old, but runs all the time to care for my dad. I am fortunate to live close and am not working currently. I help alot because Daddy can not stay by himself because he falls alot. Sometimes my mom looses her patients because he does what he wants and doesn't listen about help or he wants constant attention. It can be very hard because of cource you then feel guilty for losing patience.
The best advise is to find someone you can be brutily honest with about your feelings. I am a counselor by trade so this helps some. It is very hard as you know to see someone go down hill in such a terrible way.
Someone mentioned problems with completing thoughts and tasks. My dad lost a great amount of his hearing at about 14 and then more in his 40s so this just adds to the complications of communicating. some days are better than others. One thing we see is that he has become more determined about whatever is on his mind then ever before. I believe this has to do with the medicine magnifing complusions. (ie the warning about gambling ect.) I don't know this makes sense.
My Mom stays on top of the medicine and can vary it alittle occording to the doctors instructions and how daddy is on a particulare day.
I will ask my mom what she would reccommend and let you know.
God Bless.

[heather]

Sometimes the different symptoms my hubby shows remind me of his mother when she had Alzheimers. He accused me the other night of "leaving things all around on the living room floor." There wasn't anything there, but apparently he had stumbled over his own two feet. After dark, he absoluetly cannot see anything in the house. He carries a flashlight all the time. He has flashlights in the living room, the bedroom, the kitchen......No furniture has changed places in our home, but he can't seem to find his way in dim light. (I can get up during the night and go to the bathroom with my eyes closed, because the way hasn't changed in 30 years.....)

He has trouble with buttons and zippers and is really slow tying his shoes. I'm learning to get him started 10-15 minutes ahead of schedule so we can both be ready to go at the same time.

I don't know when the proper time will be for he & I to discuss his changing condition as far as driving, running the chain saw, watching the grandkids, etc. etc. We both have Durable Powers of Attorney drawn up...so when the time comes, I will be able to make decisions for him....but will he be at the point that he will accept this????? I wonder.

He seems to listen to his neurologist and will usually do anything she suggests. Only problem is, I never get a chance to talk to her without him being there. I hardly get a chance to talk to anyone without him being "right there." My freedom is the computer because he doesn't know how to use it. I can easily zap what I'm doing before he sees it. He thinks I just play games most of the time (which I do way too much!)

It's sure nice to be able to "talk" to all of you who are experiencing much of the same things that I am. God Bless each and every one of you.
Sue

Hi Sue
sorry you are having a real rough time.
is there anywhere you would go with out your hubby, maybe you could tell him that's where you are going, and make a appointment to see your doctor,or even one with his neurologist ,if she is local, a white fib is acceptable,in your case, for his and others safety,i believe in always telling Jim the truth,but we have a very different situation in your case.
I have full power of attorney , which i think gave us both peace of mind for day to day things, and when he was rushed in to hospital very poorly, as i was aware of his wishes
take care of yourself
God Bless

[majapa]

Hi there Sue and greetings from another Sue whose husband is a Parkinson's patient (actually a Parkinsons's Plus patient according to his neurologist).
You and I share some of the same concerns re being able to talk to the neurologist without your husband sitting right there. I recently had to hire some parttime caregiver help so that I could occasionally get out on my own - I intend to use some of this "free time" to make an app't with his dr. without Tom being with me. This might work for you as well-if you don't need to hire a pt caregiver, perhaps a relative or friend could fill your need by doing something with your husband while you are at the dr. appt. Just a suggestion. Good luck to you-this is a rough road for all of us but I try to keep my spirits up and my sanity by taking time for myself. Just meeting a friend for lunch or a movie or both really recharges my batteries!!!

[heather]

Jackie, my mom is 75 yrs old, but runs all the time to care for my dad. I am fortunate to live close and am not working currently. I help alot because Daddy can not stay by himself because he falls alot. Sometimes my mom looses her patients because he does what he wants and doesn't listen about help or he wants constant attention. It can be very hard because of cource you then feel guilty for losing patience.
The best advise is to find someone you can be brutily honest with about your feelings. I am a counselor by trade so this helps some. It is very hard as you know to see someone go down hill in such a terrible way.
Someone mentioned problems with completing thoughts and tasks. My dad lost a great amount of his hearing at about 14 and then more in his 40s so this just adds to the complications of communicating. some days are better than others. One thing we see is that he has become more determined about whatever is on his mind then ever before. I believe this has to do with the medicine magnifing complusions. (ie the warning about gambling ect.) I don't know this makes sense.
My Mom stays on top of the medicine and can vary it alittle occording to the doctors instructions and how daddy is on a particulare day.
I will ask my mom what she would reccommend and let you know.
God Bless.

Hi D.W.C.
The hard thing how quickly a mood swing happens
we where on a great day and have been for days
then tea time everything changed, just because i told him he had to eat
I have learnt over the years, that by leaving him alone, telling him what's what and how i feel about the situation is all,I can do, and just wait for him to get over his tantrum, after all he has the right to his opinion, I tell myself it's his illness visiting and let him get on with it
This may sound soft,but it works for us, by tomorrow, we will be back on track, and it will be as if nothing happened, the longer I go on at him the more stressed he gets .

[grldnklly]

Hi Heather,
It was lovely reading your comments. I am carer for my father and have to say that at times I find it hard not to enforce my opinion on my father. There are times when I want to make the decisions for him and have to restrain myself. He can be so contrary at times, for example, before I left for work this morning the issue was about whether or not he should take a laxative (my father has terrible problems with his bowels. I haven't heard anyone else mention this yet. We were told it is related to parkinsons. Has anyone else found a solution to this problem?). I know and my father knows that he really should take the laxative, but because I set it out with the rest of his medication for the day he just decided he wasn't going to take it. In the past I would have argued with him, but now I just say it's his medication and his body so he can make the choices. I know that when I go home today he will have taken it. He just has to have a wee show of power now and again! As I keep telling him (in between his awkward times), it's just as well I love him as there's no way I would care for him out of duty. I just thank God that I am the carer and not the one relying on someone to care for me. God bless

[heather]

Hi Heather,
It was lovely reading your comments. I am carer for my father and have to say that at times I find it hard not to enforce my opinion on my father. There are times when I want to make the decisions for him and have to restrain myself. He can be so contrary at times, for example, before I left for work this morning the issue was about whether or not he should take a laxative (my father has terrible problems with his bowels. I haven't heard anyone else mention this yet. We were told it is related to parkinsons. Has anyone else found a solution to this problem?). I know and my father knows that he really should take the laxative, but because I set it out with the rest of his medication for the day he just decided he wasn't going to take it. In the past I would have argued with him, but now I just say it's his medication and his body so he can make the choices. I know that when I go home today he will have taken it. He just has to have a wee show of power now and again! As I keep telling him (in between his awkward times), it's just as well I love him as there's no way I would care for him out of duty. I just thank God that I am the carer and not the one relying on someone to care for me. God bless

Hi grldnklly
Hope all is well with you and dad
it is difficult not to be tempted to enforce your opinion on someone,when you no it is their best interest, i just make sure Jim is fully aware of the consequent [?spelling] and let him decide.
It is much easier for me as it's my husband not father,the respect and love is always their , but so different, [hope that makes seance] I can say things to Jim that i could have never said to my Father

I think all men [i'm ducking under the table quickly] like to think they have power;),and dad must find it hard been told what to do, by some one who he once told what to do
but like you i just say it's your choice and leave it in his hands to what he wants to do , all jokes aside,i think this applies to male and female
when Jim is on a " i'm not going to do what you, want/tell me to do days , i just give him food for thought and leave the room and act as if nothings happens ,some times it works ,sometimes it doesn't,but that's normal i any relationship anyway

My saying is "I will always love you, but today i don't like you today "
The dreaded bowels :eek:
i'm just learning off hear about all the meds for PD ,so can't comment on them, pain killers or anything chalk based, are murder on the bowel and cause terrible constipation
have you tried Movicol sachets 13.8mgm ,it is a bowel softener not a bowel opener Jim has 1 daily and you can up or down it depending on his bowel movement
well must go and make some tea ,
take care

[JoAnn]

Hi Sue...Sounds like your hubby is having more problems then mine, however, very similar. Mine does seem to have his mood swings, but not too bad. He frustrates me more because of him not being able to "see" what he is looking at, and I sometimes say "What Are You Looking For" and he tells me and it is right there in front of him. In fact he is almost touching it but still doesns't realize what he is looking at. He says I get so sharp when I talk to him. I try to keep it under control, but by the end of the day my nerves are pretty raw. He still does his own pills. We have three separte containers. One for the AM and one for the PM and then he has a timer where he puts his PD meds and he sets it for six hours and then he knows when he is to take that pill. He sometimes forget if he has taken it or to press the start button so when he isn't looking, I double check. I have told him about some of the people I have read about here on this site and he is very interested in their symptoms and meds etc. He keeps asking me how come there are more men that seem to have PD than women, but I don't think that's true. I told him I just think maybe the women feel the need to share more so than the men.
It sure is nice to be able to share with others who are going through the same trials and tribulations with pd. Having to drive 90 miles to see a neuro must really be hard. I don't know if I could do that. Especially in the winter. I hate driving in snow and ice.

Well you take care...

JoAnn

[Mike's Mate]

To those who are having a problem with drooling. Mike has the same problem and it was noticed by our Nurse Practitioner. She said a shot of Botox would help so we did that today. The doctor injected it into his neck area. I watched and it didn't look painful. He said it was nothing compared to the pain he usually has to put up with. So far his drooling has stopped. It is supposed to last about 3 months. Botox is also useful if you have the problem with your toes curling. He had that done on one foot and now wants it in the other it worked so well. The doctor injects that in the leg. Only the first day though so will report back how it is in the long run.

[heather]

Hi Mikes mate
Jim had the drools bad, and his GP put him on Scopoderm TTS [hyoscine] patch 1.5MG i change it every 3 days [you do have to avoid alcohol] he never drools it may help

[maple tree]

Well now that I am back on the site, after comming home on a 4 day trip across Canada by train, it was a bit of a challenge but the train is geared for such probs, anyway I think the most inportant item is to have a sence of humour between the care giver and the parky person, thats what we my wife calls herself, music helps here move when shut down, (no mobility) wheels we call it when she is mobile, the only down side is when she is listeneing to marcchs on her mp3 player is she wont salute, HUMOUR, it sure is a help, will be back, if anyone has a Q for me bring it on, take care all.

[Diane]

Dear Sue,
Regarding the drooling: Ask your doctor about Botox injections. My Dad's neurologist (who specializes in movement disorders) gives my Dad Botox injections into his salivary glands. The Botox helps tremendously! It has made a huge difference for him.
My Dad has advanced PD. (He was diagnosed 20 years ago at age 55. When he first started taking Sinemet, he took two a day. Now he takes 15.) Dad needs a wheelchair full time now, but fortunately he is still able to transfer on his own. Everyone at his assisted living residence is amazed at his determination and independence. Don't give up!
ellenjane

ellenjane, my husband has drooling which is very distressing for him. We saw the neurologist yesterday (in Texas) and asked about Botox. He said that is no a use approved by the FDA, and therefore insurance will not pay any of the cost, which runs about $2,000 per injection. Did you run into this problem?

Thanks for the idea.
Diane

[Diane]

Hi, my name is Sharron and my husband (aged 67) was diagnosed with PD nearly 20 years ago. I guess the progression of his illness has been relatively slow but for the last couple of years life has been getting more difficult. It is really nice to read comments from other carers and know that we are not alone. It is only quite recently that I started thinking of myself less as a partner and more as a carer, and that has been difficult for us both to deal with.

Thanks for this forum Lianna. Keep up the good work.

Hi, Sharron. My husband (age 68) was diagnosed about 9 years ago, and we have felt very lucky that his disease seemed to progress so slowly. Now, it seems as though it is moving very fast. He can still do many things, but his short-term memory is nonexistent. I am most fearful of his being unable to walk without assistance, which I think will be soon. He has fallen a few times (especially at night when the meds have worn off), but thankfully he has not had any serious falls.

I know how you feel about being more his caregiver, rather than his partner now. This is so hard, when you have relied on his strength and good judgment for so long. We have been married for 21 years. He is 8 years older than I am, so we expect to have my health for a while longer. I am still working, but I really worry about how our lives will change when he needs a lot more help than he currently does.

We caregivers just have to learn to deal with each new problem as we go along. Our most recent realization: It is much better if I get up and take my shower first in the morning, so that I am more available to help him with the tasks he needs help with.

I also know what you mean about not feeling so alone, now that we have the forum. So many things have happened over these years, and I had no way to know whether they were "normal" with Parkinsons (like hallucinations, and pain in his hips and legs, and sleeplessness). I feel better able to deal with those things, now that I know they don't come from some other disease or disorder.

Thanks for writing. We can all deal with PD better, if we share what we learn.

Diane

[heather]

Hi, Sharron. My husband (age 68) was diagnosed about 9 years ago, and we have felt very lucky that his disease seemed to progress so slowly. Now, it seems as though it is moving very fast. He can still do many things, but his short-term memory is nonexistent. I am most fearful of his being unable to walk without assistance, which I think will be soon. He has fallen a few times (especially at night when the meds have worn off), but thankfully he has not had any serious falls.

I know how you feel about being more his caregiver, rather than his partner now. This is so hard, when you have relied on his strength and good judgment for so long. We have been married for 21 years. He is 8 years older than I am, so we expect to have my health for a while longer. I am still working, but I really worry about how our lives will change when he needs a lot more help than he currently does.

We caregivers just have to learn to deal with each new problem as we go along. Our most recent realization: It is much better if I get up and take my shower first in the morning, so that I am more available to help him with the tasks he needs help with.

I also know what you mean about not feeling so alone, now that we have the forum. So many things have happened over these years, and I had no way to know whether they were "normal" with Parkinsons (like hallucinations, and pain in his hips and legs, and sleeplessness). I feel better able to deal with those things, now that I know they don't come from some other disease or disorder.

Thanks for writing. We can all deal with PD better, if we share what we learn.

Diane

Hi Diane
hope you on a good day
This is going to sound soft,does your husband drink a lot of water,he needs 3-4 pints a day,this helps his kidneys flush any toxin that can cause confusion

both of you try not to get upset or stressed , and stay POSATIVE,this will help to slow it down

does he use a stick or frame we found when Jim started to fall, a frame helped,especially if he needed the toilet in the night, i no it's not nice,but it did help and it was about 18 months or more before he needed to get around in a chair,All i can do is share with you what worked for us,

though I am Jim's full time carer 20/7, I work part time 4hours3 days a week
I don't let my care roll take over, as i'm typing now it's time for him to go to bed, but i will see to him once i finished talking to you, i do remember when i worked around his needs to the minute ,and found it was taking over my life,and i began to resent it, and like you found it hard to see him as my husband,now i only see him as my husband,though he can't talk,i tell him everything
If he is poorly or say it was time for meals or medication, that's different ,i prioritise and don't always put me last, his illness has decided to live with us, but we don't have to make it welcome or comfortable.
This is only how we have delt with over12years ,i can't say it would work for you,but like you said, if we don't share what we learn,we will never have the choice to try new ideas.
sorry if i have gone on :)

[Diane]

Hi, Heather. It is really good of you to share what you have learned. I really hadn't thought of an intermediate solution (like a walker or frame) for the middle of the night. That is when he is most at risk of a serious fall.

I also saw your encouraging message on another thread, about you and Jim going to Iceland a couple of years ago. My husband has always wanted to go to Ireland, to see where his grandparents came from. This year, we are planning to do it, with his sister and two brothers and their wives! Everyone is working to help make it a reality.

I honestly can say that I am feeling better, since this forum started. I feel less isolated, and more empowered to deal with these things. Maybe I should post empowered as the word of the day! :)

Thank you for writing. I hope your day has been a really good one.

Diane

[heather]

Hi Diane
you are so welcome
rails along the landing where a god send as well
do you shower or bath, for bath we had a hand rail fastened to the floor, and a plastic step so Jim had something to hold on to,stand on the step then he could pop his leg over ,i stood behind him, when i had the bath out and shower in i had still got a shower chair fixed to wall, and to metal arms that lifted up and down, so he couldn't fall whilst washing himself,if you don't understand this i can take a photo.

You go to Ireland sounds like you will have a great time and lot's of support, go for it it will be memories you will treasure
if you are going by plane [don't no where you live] ring the airport and tell them you will need chair assistance, or just disable assistance and they will see to everything, he will not have to climb the steps, they will take across with you part straight into the plane on a kind of platform

my daughter came with us, as it was my son's wedding, and we took my mum 82 who had never flown before, we all got stuck in a glass lift, and held the plane up for almost 3/4hour,as they took Jim in his chair a different way [we did 3 flight's stairs] but they wouldn't let him through
passport control and i had his pass port, they sent for security
and lucky it was 2 of the 4 that lifted us out of the lift ,so they let him through :)so we had a story to tell when we got home
wellmust go to bed work tomorrow take care

[josy7]

Hi. My situation is a little different from those I have been reading. My husband was diagnosed about three years ago with early onset. He is now 46. When he was diagnosed he fell apart and had an affair with a 23 year old resulting in a child, and things went downhill from there. He asked for a divorce, which I eventually gave him and we are now apart.
I still love him and want to help him, but his denial puts a wall between us.
My 22 year old daughter is his main caregiver and is constantly coming to me for advise and support, so I suppose I am a surrogate caregiver, of sorts .
He is still working but I dont think that will be for much longer. He has been on cabasar and madopar but they have just taken him off the cabasar because of the risks. I am worried that he will go downhill because of this.
I know this forum is for caregivers but sometimes I just need some support even though I am not in the house with him. Hope that is ok.
Jo-Ann

[heather]

Hi jo-ann
welcome to our humble aboard

I have read your post, and had to read it again, you are a one in a million lady,i take my hat off to you, forgiveness,is hard any time ,but what happened to you is unbelievable,i truly don't no,if i could have, but who knows, cause i like you love my husband so much.
This site was set up as you no by Lianna, for us all, PD and carers to support each other, she took me on board when no one else would have us with out the PD label, as my hubby Jim hasn't got PD as such, [long story]
you say you are not a carer,so who is this tower of strength, loving, kind lady who is supporting her daughter
"My 22 year old daughter is his main caregiver and is constantly coming to me for advise and support, "
I can comment only how i see things, and what i would do,i'm sure some more will come and reply
Denial/ acceptance is one of the hardest thing to get over,and takes time ,patient's and understanding of the person concerned
I pray that he soon knocks the wall down, so you can all support each other, you may have to except it may only be ever as friend who know's

Just remember we are always hear to support you in which ever way you need it ,be it to laugh or cry, we all need friend's and love.
please keep in touch, keep positive

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

[tinkerbell]

hi jo-ann,

welcome from me too, it will nice to get to know each other, and give each other advice.

tinkerbell

[Diane]

Josy, I hope you have had a good PD doctor when all that was happening to you and your Husband. We went through some really hard times, caused by my Husband's state of mind. I have since learned that much of this is due to the disease. My husband became very suspicious, thought I was having affairs, thought I was always "coming on" to someone (mostly men, but in one case a woman). He had hallucinations in the night, thinking all kinds of things were happening in our bedroom.

I have never been able to tell anyone about it; but I moved out of the house, into a small guest house we had on our property, and continued to help him while working through the problems with his confusion or whatever you could call it. The neurologist was not very helpful; said "well, it might be the PD meds, but they are working so well, I don't want to change them." So, our family Dr. put him on sleeping pills and anti-depressants, and things started to improve immediately.

We almost did not make it through that time, but he pleaded with me to come back to the house and live with him; and said he knew it is the disease causing him so much pain. He still has some of the "mental" problems, but we have learned ways to head off his "spells". When he starts, I just say, "Now, you remember that we have discussed this, and you know that I am not doing those things. You know it is the PD or the meds making you think these things." It doesn't entirely defuse the situation (for either of us), but it keeps it from escalating so much.

I just want you to know that this is (in my opinion) due 100% to the PD and the meds. He would never have even thought of saying anything unkind to me, before PD. We were perfectly matched partners in life and felt blessed and lucky to love and trust each other so much. I have a lot of resentment, but I try to direct it to the disease, and not so much at him. It is hard not to feel angry with him, when I feel that I have never earned such treatment.

You are really to be admired, for continuing to care and help all you can. Do you know whether he is on antidepressants? Does he sleep well? Maybe your daughter could discuss this with him or his doctors?

Please stay with us. You sound like a very good person.

Diane

[suzie Q]

hI eVERY ONE I HAD HUGE PROBLEMS ON ONE OF THE MEDICATIONS THAT i WAS TAKING FOR P.D( CABASAR ).I WAS GAMBLING BECAUSE THEY CAUSED ADDICTIVE BEHAVIOUR AND THEY ALSO CHANGED MY PERSONALITY I AM LUCKY THAT I HAVE A FAMILY THAT UNDERSTOOD THAT THIS WAS NOT REALLY ME AND WERE THERE FOR ME ...THANKFULLY THAT IS ALL IN THE PAST AND I AM OFF THEM NOW AND I HAVE MY OWN SELF BACK .IT WAS A REALLY BAD TIME THAT I THOUGHT WOULD NEVER END ,BUT I GOT THROUGH AND CAME OUT OK ........NOT TOO MUCH DAMAGE TO THE BANK ACCOUNT. LOL ..

SUE



THIS MAY BE IN THE WRONG SECTION .......HERE IT IS ANYWAY

[heather]

Hi Sue
I have read about this problem it's :eek:

I opened a topic on medication uses and side affect ,as i haven't heard/got a clue what of most of them are ,

it's in General section

Medication/ uses ans side effects

can you post it in there or ,or copy and paste it, as onlycarers will read it
sorry to be a pain,but it's a very interesting post :)

[maple tree]

HI ALL, it seems after my wife and I returned from seeing the neurologist it was a waste of time, all he seemed to be interesteed in was DBS, she spent 45 min with the nurse anr 10 min with the doc, it came across to me as his way or no way, anyway she has been lucky to re connect with her old doc, sometimes I wonder if these guys just go through the motions, colect 200 dollars , do not pass go, anyway all you caregivers, hang in, vent when you can in a support group, dont have one start one, it is a real valve,just a tip for you care givers, try not to have set times like scheduels, spelt wrong i know, as this can trough the parky pers off track and lead to shut down, so have a good one, all the best .

[ltd-addition]

Hi Maple Tree

thank goodness we are all different.

I'm needing organization and schedules especially by my carer, so I know what I'm doing and where I'm going.

If he changes our routine it makes me more stressed.

I shut down by losing my dexterity and fluidity of movement so therefore I couldn't be on stage as a ballerina ! My tutu wouldn't get to twirl !

Good health

ltd-addition

[heather]

Hi maple tree
I always feel when ever i have taken Jim for a appointment , we are in a cattle market,
Because his illness mimics PD, this is the only place that has welcomed us, so we never get to see the PD nurse

this is our life, and i agree some people cope better with out been organised, or a schedule,and like they say if it's not broken don't mend it.

I have got a very busy schedule's,

I have been a carer to my husband for over 12 years and worked for 10 years full time, and the last 2 years part time ,also have my one grandson 4days a week after school and my other2 on a Saturday
My day startes at 6.30 am
I have to give Jim full care,before i go to work,then start again once i come home, approx 1.20pm,make sure he is ok be fore i go to bed approx midnight ,unless my friends on hear keep me up till later :rolleyes:

Run the house , inside and out side

See to all the finances etc etc

so if i'm not organised ,i get stressed and this then has a knock on affect on Jim
But like i said , if it works for you that is great
thank you for sharing.

[grldnklly]

Hi Itd. addition,
You are so determined, I reckon if you wanted to you would find a way to make that tutu twirl!
God bless
Geraldine

[grldnklly]

Hi Heather,
I agree with you and I am in the same situation in that I work full time, care for my father and look after the house both inside and out. I rise every morning at 6 am to get my father showered, shaved and dressed. I also take him out for a walk every morning (weather permitting) before going to work as this is his best time.
If I did not have a schedule I would have a nervous break down.
I find that having a schedule makes things more relaxing because at least you can tick things off in your mind (I don't write a list) as you go along.
My father laughs at me because I am always saying 'well that's another job of the list'.
Well, at least this gives us very little time to get into trouble!
God bless
Geraldine

[heather]

Hi Itd. addition,
You are so determined, I reckon if you wanted to you would find a way to make that tutu twirl!
God bless
Geraldine

Geraldine

she is twirling her tutu on her holiday now

http://i10.photobucket.com/albums/a126/maesisaf/Bye20Bye3.gif

[liz]

Dear Sue,
Regarding the drooling: Ask your doctor about Botox injections. My Dad's neurologist (who specializes in movement disorders) gives my Dad Botox injections into his salivary glands. The Botox helps tremendously! It has made a huge difference for him.
My Dad has advanced PD. (He was diagnosed 20 years ago at age 55. When he first started taking Sinemet, he took two a day. Now he takes 15.) Dad needs a wheelchair full time now, but fortunately he is still able to transfer on his own. Everyone at his assisted living residence is amazed at his determination and independence. Don't give up!
ellenjane

15??? Do you mind if I ask what mg.? My dad is taking 1 pill 8 times a day and thats pushing it. He has to suffer the rest of the time because the doctor says thats all he can take. Everyother day he is ready to move on to the next medication because this one doesn't work. I don't know what to do... I try to keep cool. Thanks!

[ellenjane]

ellenjane, my husband has drooling which is very distressing for him. We saw the neurologist yesterday (in Texas) and asked about Botox. He said that is no a use approved by the FDA, and therefore insurance will not pay any of the cost, which runs about $2,000 per injection. Did you run into this problem?

Thanks for the idea.
Diane

Diane,
You may want to get a second opinion! The Botox injections have helped my Dad tremendously!!! He was like a "running faucet" before he received them. My Dad receives his Botox injections at the VA Medical Center in Durham, NC. His neurologist, who specializes in movement disorders is an attending doctor at Duke University Medical Center. He comes over to the VA every Monday afternoon for Botox Clinic. For the last year, he has given my Dad the Botox injections every 4 months. The last statement I received from my Dad's insurance showed that the VA bills Medicare $729 and Medicare pays $677. Not sure where your doctor came up with $2, 000! Hope this information helps you...
Best of luck,
Ellen

[ellenjane]

15??? Do you mind if I ask what mg.? My dad is taking 1 pill 8 times a day and thats pushing it. He has to suffer the rest of the time because the doctor says thats all he can take. Everyother day he is ready to move on to the next medication because this one doesn't work. I don't know what to do... I try to keep cool. Thanks!

Hi, Liz,
Yes, 15!!! My dad has had PD for a very long time. Here is his regimen - 3 tabs of Sinemet (Carbidopa/25 Levodopa/100 mg.) at 6 a.m., 9 a.m., 12 Noon, and 3 p.m.; 2 tabs of Sinement (Caribidopa/25 Levodopa/100 mg.) at 6 p.m. AND then 1 tab of Sinemet CR at bedtime ( Carbidopa/25 Levodopa/100 mg. SA - a time-release). This regimen works really well for my Dad. His on/off time is decreased significantly. Also, having the time-release at bedtime helps reduce muscle cramping/pain which is common with PD.
You may want to get a second opinion from neurologist who specializes in movement disorders. I'm not a doctor, but it sounds like your father is being undermedicated.
Best,
Ellen

[lhurtado]

ellenjane, my husband has drooling which is very distressing for him. We saw the neurologist yesterday (in Texas) and asked about Botox. He said that is no a use approved by the FDA, and therefore insurance will not pay any of the cost, which runs about $2,000 per injection. Did you run into this problem?

Thanks for the idea.
Diane


i.m sorry but i get botox regularluy for my painful hand with dystonia which is caused b/c of the pd meds. & my medicare & combined w/my Hmo. i pay my $10.00 co-payment & nothing more. i usually get it every month. actually he only gives botox @ the end of the month..

linda

[mwright305@comcast.net]

Hi! I guess I'm not used to that term, caregiver, but I understand that's what I am as the wife of a man with pd. He has been diagnosed only about 2 years and is a program at Johns Hopkins. I would love to hear what to expect, tips, etc. So far, he works hard and has little trouble. His one hand does "freeze up" once in a while and he gets tired when driving. Some mornings he has a lot of muscle pain. Usually a massage helps a lot. We don't talk about it much....I guess I think the more normal life we can live, the better.

Thanks!
Hi Carolyn,
My husband too was diagnosed appx. 2 years ago (looking back he probably had it for at least two years prior). He too is going to Johns Hopkins for treatment. He is doing well, and working really hard to combat the muscle pain, stiffness, and restless leg. We do not talk about it much either. As a matter of fact I do all the reading on it and go to all of his doctors appointments with him to ask questions. I really don't think he wants to know what the future holds for him. That is just the way he handles it, not my way but it seems to work for him. He also has an incredibly positive attitude, which is key in this disease.
Mary

[Bonnie Owen]

As I read all the entries I am so amazed at the strength and kindness of the people who write. I am also amazed at the people with PD who keep going and make a life with it. That is not the case in my home. My husband is miserable, miserable to live with and prays constantly for death. I am so glad to have a job to go to everyday but I still must come home to a terribly depressed sick individual. I ask all of you to pray for him (if that is something that you do) or hold us both in your thoughts. So this is not one of those "happy all is well situations." He thinks he should be allowed the dignity that we gave our old Cairn terrier.... a needle. A long night a head of us to be sure

[suzie Q]

Bonnie that is so sad .some one should give him a good talking to .It must be so difficult for you .i have had P.D.for 5 years i was 48 when i had the first symptoms.It was a big shock i thought that my life would never be the same .but i kept working and i think it has made me a better person because i wont let it get to me and stop me doing anything that i would have done with out having P.D.My Family are great, and i am well at the moment ,but have had some bad times .maybe your husband needs some anti depressants to help him

hope you can get through to him and look after yourself all the best

Sue

[Bonnie Owen]

Would that I could get him to go to the doctor I know he needs anti depressants and the rest of the family knows it as well but the thought of 1 more pill He seems to prefer to be this miserable and perhaps that is the pd talking
Thank you Susie One more day
He is so angry that he doesn't die and so mad at what he calls a punishing cruel God for making him stay in this world
And I get really quiet and pray even harder

[suzie Q]

Buny how long has he had parkinson's? maybe he will learn to accept ,it and realise that it is not a death sentence, you can still do all that you want maybe just a little slower.Hopefully things will get better for you will be saying a few prayers for you both


Sue

[mwright305@comcast.net]

Hi Bonnie,
I am so sorry to hear what you are going through. It must be so frustrating. What was your husbands personality like before had PD? Was he an upbeat person? Attitude and outlook are so key in this disease. Depression and stress can actually excaberbate(sp?) the disease.
I will pray for you. I can imagine how hard it must be, when someone won't help themselves. Does he have any friends that would talk to him? Sometimes people are hardest on those they are closest to. It sounds like he may be blaming you for his problems.
Take Care
Mary

[MargieB]

Would that I could get him to go to the doctor I know he needs anti depressants and the rest of the family knows it as well but the thought of 1 more pill He seems to prefer to be this miserable and perhaps that is the pd talking
Thank you Susie One more day
He is so angry that he doesn't die and so mad at what he calls a punishing cruel God for making him stay in this world
And I get really quiet and pray even harder

Hi Bonnie,

Margie here! My husband has PD and my son and I are his caregivers. He was put on 10mg of Lexapro, which he takes in the morning at breakfast. He was crying and depressed and the Lexapro definitely helped.

The way your husband feels right now...he won't believe that an antidepressant will help him feel better. I'm no doctor, but if you could get him to your GP and/or your neurologist and explain what is happening, I'm sure one of them could help your situation. Maybe call the doctor(s) and talk with them first and explain exactly what is happening and ask them for their help.

God bless both of you.

Margie:)

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/pspgodblessangels_on_your_pillow_sh.gif
Hi Bonnie
My Heart goes out to you Bonnie. How old is your Husband, and can you in your own time,explain how PD is affecting hubby Physically
I'm Heather have been a carer to Jim My Husband, for almost 12 years.,Jim Is 65 years, He doesn't have PD but a illness that mimics PD but no medication works.He is in the later stages. you may wonder why i'm telling you that, but it's to try and give you hope
I haven't told many this story, but i feel it may help.
For a start you have to be strong, and the old saying cruel to be kind, but also remember,only you know your husband , and what worked for us, may not work for you, so you have to decide, what is best for you

First I believe there is no dignity in dyeing, only in living.

When Jim was first told he was ill after over 12 months of been prodded and probed by so many people, he was told quiet bluntly he had at the most 7 years. So that to me proves That God will say when our time is up. When we got home Jim like your husband said he didn't want to live,and quoted,if he was a dog, he would be put down. my reply well you are not a dog, so you better get over it. We then talked, cried, and swore etc etc , I asked him to think about his children, who lived at home then, it's funny now but then i never thought of me,i have never worked out why, after about 3-4 months, of him still feeling sorry for himself, I went to see his GP. and asked for a appointment for us to see a psychiatrist. I didn't tell Jim till the appointment came, a few weeks later, and a few weeks to wait, for the appointment. I then gave him the choice, he ether came with me or i would go alone, what ever as i was not going to be held responsible, for his state of mind. so he agreed about 2 days before to come, as he new i would go on my own. He was not put on medication at once, but was sent to see a councillor [spelling] the following week, we both went in separately, then together.it was the best 3 hours we spent. that was when our new life began, We learnt to live with what he/we had. It is not a miracle cure
There isn't one yet,it's a way of talking to each other, both honestly and open, and for us both to realise, that we are both human, and we have to give each other respect,and love
He still gets his bad days, but i tell him how lucky we are
we have watched our children, get married, we have 3 lovely Grandson's, but most of all, [you may think this is terrible, but it never fails] I tell him to turn on the News and just listen to
all the young people, who have not had a chance of life have died, I am a community nurse, and have done a diploma in palliative care, and remind him, how many times over the last 28 years have i come home, exhausted, after being with, young family, who have lost a young parent.

I am telling you this as a carer ,I have been with Jim from the age of 17 [43 years].

and as i have said before on hear, i will never no how someone with PD feels , i am the lucky one.

God bless you Bonnie , we are all hear to help and support you in any way, just ask and someone will be able to help

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

[Jan]

My husband, who is 65, has a lot of trouble with constipation. Our GP recommended 1-2 Tbl of mineral oil and 1-2 Tbl of orange juice daily. This seems to help. My husband is sleeping more and more and doesn't get enough exercise, but there is nothing I can do. Hope this helps!



Hi Heather,
It was lovely reading your comments. I am carer for my father and have to say that at times I find it hard not to enforce my opinion on my father. There are times when I want to make the decisions for him and have to restrain myself. He can be so contrary at times, for example, before I left for work this morning the issue was about whether or not he should take a laxative (my father has terrible problems with his bowels. I haven't heard anyone else mention this yet. We were told it is related to parkinsons. Has anyone else found a solution to this problem?). I know and my father knows that he really should take the laxative, but because I set it out with the rest of his medication for the day he just decided he wasn't going to take it. In the past I would have argued with him, but now I just say it's his medication and his body so he can make the choices. I know that when I go home today he will have taken it. He just has to have a wee show of power now and again! As I keep telling him (in between his awkward times), it's just as well I love him as there's no way I would care for him out of duty. I just thank God that I am the carer and not the one relying on someone to care for me. God bless

[Bonnie Owen]

Dear ones,
My husband is 58. He has tremors badly, insomnia, pain, takes sinemet and comtan at least 5 times a day. He has had PD for 2 diagnosed years but probabaly had it for a number or years before but covered it with alcohol. After trying to get him sober a number of times, an MD finally said I think he has something more than the DT's and PD came into the picture. He has not worked in a number of years ( a long story there) does not qualify for US disability b/c of his work history and we are in a bad bad financial situation.
So when the talk goes to avoiding stress that just isn't going to happen
I have gone to work full time I have health ins but to cover Bob will be prohibitive and then a $5000 deduct before rx are covered another worry but for today we are okay

We have an 11 yr old grandson who lights up our life and sometimes he spends his day with Papa (I am not sure who cares for whom!) so if there is any relief to this long illness it is the delight of a child who accepts Papa "shakes an' all"

Does anyone know of any drug companies that help with PD meds?

Thank you for all of your prayers
I don't know if PD falls into the 12 step program but I really know that I am powerless in front of this disease.

Bonnie

[vickynunez]

As I read all the entries I am so amazed at the strength and kindness of the people who write. I am also amazed at the people with PD who keep going and make a life with it. That is not the case in my home. My husband is miserable, miserable to live with and prays constantly for death. I am so glad to have a job to go to everyday but I still must come home to a terribly depressed sick individual. I ask all of you to pray for him (if that is something that you do) or hold us both in your thoughts. So this is not one of those "happy all is well situations." He thinks he should be allowed the dignity that we gave our old Cairn terrier.... a needle. A long night a head of us to be sure

Hello Bonnie, I to am a caregiver for my husband of 34 years, he just turned 59 in May. We have the same in common, you just discrible my husband...He's always in pain, can't walk and when he does he pays for it...He has back troubles too..and can't sleep...so that means I dont sleep good either..It's 10:00 P.M. now and he is asleep I don't know for how long..He is very miserable and wishes the same. He prays that God will take him soon too..He's had this for about a good 6 years and to this day he cant stomach any pill. Right now hes on ropinrole,dose not like it and on depressants. I feel so bad for him and am try to be supportive for him but sometimes its very hard. I work at home, sooo I get behind on my work but I am here when he needs me...very 5 min. HaHaHa just a joke..I think!!! Well I hope your husband is feeling better...I just pray every day that it will get better.. He worked hard and was a wreslting coach his kids looked up to him..and to this day some keep in touch with him. I think thats why its so hard for him..He was so active...and he feels our grandchildren wont know the real person he was...all 10...This is my first time on.... Thanks Vicky

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/pspwelcomehello4hellovicky.gif
Hope you and Hubby and both well
That's a long time to care for your husband, you must be a very special person , I have been caring, for Jim my Husband for 12 years
I have 3 Grandson 2 my daughters and 1 my son
The oldest 10 can remember Jim when he could walk, and would take him out to play etc
My middle one 7 can remember some things about Jim
My youngest 4 only knows Jim as he is now
We have a photo frame with them all at different ages with Jim
One day i was in the kitchen, and they where all on the sofa , and i could hear the oldest talking to the others, and when i looked, he had this photo, and was explaining the picture to them, and the youngest, just got off the sofa, went to Jim who was 1/2 asleep shook Jim and said, Are you listening Taide[Welsh for granddad] Ethan is telling us about when you where a young Taide:) what i'm trying to say is they will not forget him, we have other pictures of him all around the house, and each tells a story, so none of us will forget
Jim found it so hard at first for many years , but because i wouldn't give him sympathy, as that wouldn't change the situation. From that very first day, we have been honest and open, and treated each other, as we would if he had not been ill, i'm not going to say it's been easy, and what worked for us may not work for you
I wish you all the best our new friend
please ask if you need anything, we are all in the same boat, and and hear to help and support each other, through the good, and not so good times, we love to hear the good times people have, and the not so good as well

[heather]

My husband, who is 65, has a lot of trouble with constipation. Our GP recommended 1-2 Tbl of mineral oil and 1-2 Tbl of orange juice daily. This seems to help. My husband is sleeping more and more and doesn't get enough exercise, but there is nothing I can do. Hope this helps!

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/pspcupcatbutterfly.gif
Do you live in the UK
Jim has lot's of problems with the old bowels
He has Movicol sachets daily some times twice a day, can have 3 if need be, it just softens the stools, so makes it easier
It available on prescription
I also give Jim at least2 litres of water [peg feed] daily, as this hydrates the stool and helps to keep it soft, but also flushes the kidneys, of impurities, which can also make you very sleepy
Is there any reason why your husband doesn't get much exercise

[vickynunez]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/pspwelcomehello4hellovicky.gif
Hope you and Hubby and both well
That's a long time to care for your husband, you must be a very special person , I have been caring, for Jim my Husband for 12 years
I have 3 Grandson 2 my daughters and 1 my son
The oldest 10 can remember Jim when he could walk, and would take him out to play etc
My middle one 7 can remember some things about Jim
My youngest 4 only knows Jim as he is now
We have a photo frame with them all at different ages with Jim
One day i was in the kitchen, and they where all on the sofa , and i could hear the oldest talking to the others, and when i looked, he had this photo, and was explaining the picture to them, and the youngest, just got off the sofa, went to Jim who was 1/2 asleep shook Jim and said, Are you listening Taide[Welsh for granddad] Ethan is telling us about when you where a young Taide:) what i'm trying to say is they will not forget him, we have other pictures of him all around the house, and each tells a story, so none of us will forget
Jim found it so hard at first for many years , but because i wouldn't give him sympathy, as that wouldn't change the situation. From that very first day, we have been honest and open, and treated each other, as we would if he had not been ill, i'm not going to say it's been easy, and what worked for us may not work for you
I wish you all the best our new friend
please ask if you need anything, we are all in the same boat, and and hear to help and support each other, through the good, and not so good times, we love to hear the good times people have, and the not so good as well

Hello Heather I guess I should of said that been married for 34years and we found out 6 years that he had PD and I believe he had it longer then that, so you beat me on careing for your loved one. I try to be strong and its not easy he is not very good about taking his meds, not because he dosent want too but he says they make him feel bad. He's been mostly in bed for about 2 weeks because his right leg and his heel is in pain if he stand to long....but he needs to be more active I'm worried he is going to get worse if he stays in his room too long.... The grandkids 7 girls 3 boys are my pride and joy...and we have 2 boys and 2 girls...My youngest daughter is 26 not married and no kids so I'm sure in time we will add on more little ones... Well nice talking to you..Thanks for listening Vicky

[heather]

Hi Vicky
hope you are both on a good day
No it's not easy,my friend , i can be d**e hard we just so enjoy the good days, and forget/don't dwell the bad days,
Jim's illness mimics PD, but the stages he has gone through are the same
Jim has his bed down stairs, which we both hate, but needs must be
he also has a reclining chair, which elevates his feet ,best thing since sliced bread
Your husband,needs to be down stair's, people with a long term illness need to socialise,as depression loves isolation, he needs to be around the grandchildren so that they can also ajust to the situation,my 3 are so different, as they no Jim at different stages, the oldest 10 remembers Jim when he could walk talk etc, and tell the other 2 stories, and Jim will use his thumb to agree or disagree, the middle one can just about remember Jim walking, but mainly how he is now, and will say oh yes i remember that, the youngest 4 only knows Jim as he is now, and does everything with Jim , climbs on his bed, makes fun of him calls him silly Taide[Welsh for grand] kisses,and hugs,but if he was up stairs, treats him as normal,and because i tell them to wait for things, [i have only one par of hands], he will say wait Taide, Naine has only one pair of hands :D

He would be isolated from us, and i would be so tired running up and down the stairs all day,
I bet you have made his room very comfortable , and every time he calls you run, well my friend i have been there done that, and i found after a time, i was starting to snap at anyone anything ,I lost it one day and shouted at him, and then went on a guilt trip,
Hope this helps, it's just how I handled it, but it may not work for you, as out husbands may be ill, but so different

Good luck you are in my thought's and prayers

[vickynunez]

Hi Vicky
hope you are both on a good day
No it's not easy,my friend , i can be d**e hard we just so enjoy the good days, and forget/don't dwell the bad days,
Jim's illness mimics PD, but the stages he has gone through are the same
Jim has his bed down stairs, which we both hate, but needs must be
he also has a reclining chair, which elevates his feet ,best thing since sliced bread
Your husband,needs to be down stair's, people with a long term illness need to socialise,as depression loves isolation, he needs to be around the grandchildren so that they can also ajust to the situation,my 3 are so different, as they no Jim at different stages, the oldest 10 remembers Jim when he could walk talk etc, and tell the other 2 stories, and Jim will use his thumb to agree or disagree, the middle one can just about remember Jim walking, but mainly how he is now, and will say oh yes i remember that, the youngest 4 only knows Jim as he is now, and does everything with Jim , climbs on his bed, makes fun of him calls him silly Taide[Welsh for grand] kisses,and hugs,but if he was up stairs, treats him as normal,and because i tell them to wait for things, [i have only one par of hands], he will say wait Taide, Naine has only one pair of hands :D

He would be isolated from us, and i would be so tired running up and down the stairs all day,
I bet you have made his room very comfortable , and every time he calls you run, well my friend i have been there done that, and i found after a time, i was starting to snap at anyone anything ,I lost it one day and shouted at him, and then went on a guilt trip,
Hope this helps, it's just how I handled it, but it may not work for you, as out husbands may be ill, but so different

Good luck you are in my thought's and prayers

Goood Morning Heather, Thank You for your mail..you just decribe me running at the calls and getting upset because he needs me and then my little ones too.. I do feel guilty I dont like being mad at any one. Its funny I say the same thing I only have two hands!! We babysit all week til Gil started not feeling so good it went from 5 days to2 days This is my lone time..I still take,pick the older ones from school all week, and have 2 little ones Monday..Thats no problem, we have to help out our childern and it keeps Gil on track.... He loves having them over... The two year old loves to be with his tata and takes naps with him:).. Can you tell again I know I read it but what does Jim have I would like to know the name so I can look it up.. Thank for your time and prays...My prays are with the both of you too...Vicky

[heather]

Goood Morning Heather, Thank You for your mail..you just decribe me running at the calls and getting upset because he needs me and then my little ones too.. I do feel guilty I dont like being mad at any one. Its funny I say the same thing I only have two hands!! We babysit all week til Gil started not feeling so good it went from 5 days to2 days This is my lone time..I still take, pick the older ones from school all week, and have 2 little ones Monday..Thats no problem, we have to help out our childern and it keeps Gil on track.... He loves having them over... The two year old loves to be with his tata and takes naps with him:).. Can you tell again I know I read it but what does Jim have I would like to know the name so I can look it up.. Thank for your time and prays...My prays are with the both of you too...Vicky

Hi Vicky
have just put my 3 to bed, don'tno how you cope with 10 :cool:
My son and daughter-in-law have gone out with some friends,it's their wedding anniversary next week only2nd time Lukas has been away from home, My daughter is doing a midnight walk for Charity, so my son-in-law is going for a couple of pints
We have Lukas [son's son] Tuesday - Friday after school, and the other 2 Ethan and Cade just call in,in the week, and often just decide to stay for tea, they stay for a couple of hours every Saturday for my daughter to go shopping , Because Jim doesn't speak i love company , and the grandchildren as so ust to Jim, they /we just get on with it
Jim has Oliviapontine cerebellar degeneration and Ataxia
Take care, oh by the way hope you don't mind me asking where do you live ?

[vickynunez]

Hi Vicky
have just put my 3 to bed, don'tno how you cope with 10 :cool:
My son and daughter-in-law have gone out with some friends,it's their wedding anniversary next week only2nd time Lukas has been away from home, My daughter is doing a midnight walk for Charity, so my son-in-law is going for a couple of pints
We have Lukas [son's son] Tuesday - Friday after school, and the other 2 Ethan and Cade just call in,in the week, and often just decide to stay for tea, they stay for a couple of hours every Saturday for my daughter to go shopping , Because Jim doesn't speak i love company , and the grandchildren as so ust to Jim, they /we just get on with it
Jim has Oliviapontine cerebellar degeneration and Ataxia
Take care, oh by the way hope you don't mind me asking where do you live ?

No I don't mind. We live in USA California,Lemon Grove (San Diego) We have a Big Lemon in the middle of our little city:)...My 5 year old Grand daughter wants to spend the night..I told her sunday so she dosen't have to wake up early Monday...Talk to you later Vicky

[Drew Saunders]

Hi Heather,
It was lovely reading your comments. I am carer for my father and have to say that at times I find it hard not to enforce my opinion on my father. There are times when I want to make the decisions for him and have to restrain myself. He can be so contrary at times, for example, before I left for work this morning the issue was about whether or not he should take a laxative (my father has terrible problems with his bowels. I haven't heard anyone else mention this yet. We were told it is related to parkinsons. Has anyone else found a solution to this problem?). I know and my father knows that he really should take the laxative, but because I set it out with the rest of his medication for the day he just decided he wasn't going to take it. In the past I would have argued with him, but now I just say it's his medication and his body so he can make the choices. I know that when I go home today he will have taken it. He just has to have a wee show of power now and again! As I keep telling him (in between his awkward times), it's just as well I love him as there's no way I would care for him out of duty. I just thank God that I am the carer and not the one relying on someone to care for me. God bless

Hi Geraldine
All the meds I take for PD CAN cause constipation. They can also cause the bowels to work excessively! Sinemet,Azelect, Diazepam. (They also cause low blood pressure). I don't "go" unless I take laxatives. For what it is worth I take Sena tablets - herbal and very cheap - much cheaper than Senekot, about 3rd the price but very effective. So, it is not PD that causes the problem it is the meds. Reading the "blurb" you get with the meds can either 1. frighten you to death 2. confuse you with list of possible side effects or 3. use the paper to light the fire because of 1 and 2 above. (I use 3rd option now!) That is where this forum comes into it's own. Actual experiences by real people getting on the best they can and relating directly. I was just back tracking in case I missed something I could contribrute to and came across your input. Hope this helps,
God Bless,
Drew
When I post jokes re the Irish it is only that, a joke. The only reason we have Scots people are due in the main to the Irish who could swim. Do you live in the North or the South?

[grldnklly]

Hi Geraldine
All the meds I take for PD CAN cause constipation. They can also cause the bowels to work excessively! Sinemet,Azelect, Diazepam. (They also cause low blood pressure). I don't "go" unless I take laxatives. For what it is worth I take Sena tablets - herbal and very cheap - much cheaper than Senekot, about 3rd the price but very effective. So, it is not PD that causes the problem it is the meds. Reading the "blurb" you get with the meds can either 1. frighten you to death 2. confuse you with list of possible side effects or 3. use the paper to light the fire because of 1 and 2 above. (I use 3rd option now!) That is where this forum comes into it's own. Actual experiences by real people getting on the best they can and relating directly. I was just back tracking in case I missed something I could contribrute to and came across your input. Hope this helps,
God Bless,
Drew
When I post jokes re the Irish it is only that, a joke. The only reason we have Scots people are due in the main to the Irish who could swim. Do you live in the North or the South?


Hi Drew,
I agree with what you say about the medications. This forum is a goldmine! It's people's real life experiences that count. My father has an added complication with his bowels in that he has a twist in his colon which causes problems now and again. He takes movicol (a laxative) at least once every day, but even that doesn't always move him. This has been his third stay in hospital in over a year because of this problem. Over the past few months there have been big changes in his bowel movements which is causing a lot of concern. Our GP is talking about carrying out further tests incase there is anything sinister. I am not overly concerned as I don't see any point in worrying about something until you have to. All we can do is wait and see!
I am from Northern Ireland. Don't worry I didn't take offence at the Irish jokes. If we can't laugh at ourselves, well then, we really should not be laughing at anyone else. You need a sense of humour to through life!
God bless
Geraldine

[heather]

Hi Geraldine
Due to all the antibiotics Jim has had he had a very, offensive , watery stool, some could have been from over flow, due to constipation. About 8 weeks ago i started him on Actimel one a day, and in a few days i could see the difference. he also has Movicol,[ it's a softener, not a bowel opener like senekot] depending on his stool how many he gets [sachets] , if normal one a day,
other wise one Am and one Pm It says 1-3 daily. Long term 1-2 sachets . Faecal impact 8 sachets, But i personally would never give that many, i think you should see a GP if it's that bad

Pain Killers, or any tablet that are chalk based, are very constipating, as they draw the water like chalk will, so you should be taking 2-3 litres of water a day, to replace it, and it does help rehydrate the bowel

[heather]

To, "daughter who cares"
Could your mom give me some ideas about how her life goes on from day to day with the responsibity of care giving to your dad? My husband too was 55ish and it has only been 5 years. I would really like to hear some personal information.......I have trouble with no expression in my wonderful husband's face. :(

Hi Jackie
Jim has the mask, and had it for a long time
I have learnt, to look beyond the mask, and only in his eye

they tell me everything , Try it my friend, it does work

[richann]

I wish there was a place I could say “hello, everyone” and not have to post individual threads. Should be a place for Articles available to all. My heart goes out to all caregivers and the patients. I’m nearly 84 and have been a caregiver many times - learned something each time.
I’ve lived in other countries - Italy, Switzerland, England, and Saudi Arabia. My first husand for who I was a caregiver for 9 years had a stroke. In the US doctors all said “you will never fet out of the wheelchair, but we will compensate for you Disability ! In Italy they said, “you can get well”. He recovered about 90 % . I learned from the Italian therapists how to teach him to walk, exercise. and how I could help a big man out of a low chair or sofa without hurting myself and how to help him get up off the fall - perhaps after a fall! .

I remarried and am now caregiver for my 87 year old husband with PD. I’d like to write an article about just being a caregiver and another for what we’re doing to beat PD. I’m able to apply some of the things I learned for a different dis-ease. We’ve had some touchy times, especially last summer, but now the wheel chair is in the garage, walker used around the house, but Richard can walk without it. More about that at a later time.

We are all three bodies in one - body, mind & spirit. When one of them is not operating in full integrity, the others are affected. I would like to write about that aspect.

I have been in a health related business over 17 years and I buy many things from Direct marketing companies which you will find have the best products. If drug or product has to be advertised you can be sure I’m not buying. The way to health is through nature. The body can heal itself - no drugs cure. They may alleviate or mask symptoms, but don’t cure. Drugs usually have to have another drug to counteract the first one, and so forth. The drug companies don’t want us to be well, it cuts into their profits - world-wide!

I notice that some posts are from the UK, Canada and other countries. There is one thing we’re using for which there are no borders between countries or between states in the US, the latter may be an important issue in the near future. If you would like more information about a 21st century new health concept, you may visit this web site which gives you great information and you can contact me according to the information you would like to receive. www.globalteamelite.com/myac You can’t buy anything from this web site, just learn and request information.

I am wanting to spend some time doing a blog to pass on information - but as you all know, time for a caregiver is limited. I have lots of information I can send out from my private email address regarding this new technology and what all we’re doing about PD.

Just a quickie tip - both caregivers and patients should be drinking 8 glasses of water a day. eating raw food - vegetables and fruit. If you have noticed thick saliva, the 8 glasses of water will stop that. You can Google that “thick saliva” and find out. Works great for Richard. For those taking antibiotics, be sure to either take acidopholus pills or eat yogurt to put the good flora back in that the antibiotic also killed.

Have no idea where I will post this or how many may be able to read it or if I’ll find any post to it from others! ! Besides communicating with others about health via email and phone, I have other projects going on in my home - to save the environment, to improve the land that grows our food, and so forth. Teaching others how to save the planet !

Just know in your heart that you and your loved one have a healthy future and that all truly is well. There is joy in the journey ! Believe it and know it. Blessings ~Ann Carlisle, Gilbert AZ


:)

[heather]

Hi richann
i found your post very interesting, i have cared for my husband Jim for 12 + years
the one thing i truly believe in
" We are all three bodies in one - body, mind & spirit. When one of them is not operating in full integrity, the others are affected"
have a good day