New And Scared

[norma g martinez]

:(hi I Have Been Diagnosed With Pd About 8mos Ago,does Anybody Feel Out There Feel Like Your Feet
Are Glued To The Floor And Want Yo Go Face First.
And Are Unable To Walk I Am Very Depressed Can Anbody Out There Tell Me Hang In There They Have
Been There.

[liz]

Hello! I am just as scared as you. My Dad was diagnosed about 6 years ago and he gets "stuck" all the time. Nothing seems to help. We have tried to have him focus on a line or take big steps. But nothing really helps. So, I am on your end... Looking for some relief for my Dad.

[tinkerbell]

hi norma,

don't be scared we are all in the same boat here, we either have pd or are caring for someone that has.
we try to help each other along the way, i find the best way is to be positive and fight this thing called pd.
i have decided pd isn't going to get the better of me i am going down fighting.
lol tinkerbell

[suzie Q]

Hi Norma

I guess most of us are scared ,not knowing what the future holds .some times I have good days some not so good.But I am learning to live with it .We are all in the same boat.Keep positive,you cant let it take over your life. I am like tinkerbell dont let it get the better of you .There is life after P.D


Sue

[heather]

Hi Both
I'm Heather and have looked after my hubby for 12 years
so i speak as a carer

my husband has not got PD, but a illness that mimics PD in every way,the only difference,is no medication works for him

I'm not going to tell you the garden is full of roses, but by no way full of weeds, by thinking positive and laughing , you/dad like them can bloom

Try and find some time looking through the forum, you will find
so much valuable information, from people who no what they are talking about, both as PD people and carers , not like some books who have never been there, have you had Lianna book, that is our bible , she is caring for her mum, so is fully a where of what it's all about in the real world
PD it's not as black as it sounds, you have to think positive, and take each day as it comes, and help when you need it, prevention is better that cure

never be afraid to ask any question's,we are all in the same boat hear, and we have no intentions of sinking

The trick i found for Jim when his feet froze, was to hold on to some thing, and rock back and forward, start very slow, then gentle speed a little, then all of a sudden one of his feet would lift forward, and bingo he would move again , it will take a little practice, but then practice does make perfect :);)

Take care both
please come and visit often

[susan wheatley]

hi norma, being diagnosed with pd is scary enough but believe me it does get better the feeling of depression, you learn to adjust to life with pd and find your own wayto cope as everyone has different symptoms they might be similar but not exactley the same, in a funny way life becomes normal again only you have an extra passenger i felt the same way as you but it just becomes part of every day life to live with pd please dont be scared we are all here to help your not alone god bless susan.

[vb73]

I have the same problem. My legs get stiff and my feet feel like they are nailed to the floor.Your doctor will prescribe a medicine the may help alleviate this stiffness. However this stiffness may never go away according to my doctor.I would suggest that you purchase a cane with a flat handle. Put the handle part on the floor next to your right foot and attempt to step over the handle.Once your foot moves you should be able to move. I have used this method for the last two years. We live in a three story town house and I have a cane on every floor.Its also very important to keep exercising every day. Try it .

[Drew Saunders]

Hi Norma
Please look at www.parkinsons.org.uk (http://www.parkinsons.org.uk) for more information. Don't look at all web pages re Parkinson's as there are a lot of cranks out there and will just frighten you.
A feeling that your feet are glued to the floor or maybe unable to get through doorways is something that PD suffereres can get. Are you on any meds? Does your doctor know of your problems?

You will find that this forum is a great help to you. We are all in the same boat and all pulling together.
Have a good day and try and smile:):):) or even better have a good laugh:D:D:D
Drew

[heather]

I have the same problem. My legs get stiff and my feet feel like they are nailed to the floor.Your doctor will prescribe a medicine the may help alleviate this stiffness. However this stiffness may never go away according to my doctor.I would suggest that you purchase a cane with a flat handle. Put the handle part on the floor next to your right foot and attempt to step over the handle.Once your foot moves you should be able to move. I have used this method for the last two years. We live in a three story town house and I have a cane on every floor.Its also very important to keep exercising every day. Try it .

Hi vb73
http://i10.photobucket.com/albums/a126/maesisaf/wel_big2.gif

That is a great idea, they say the simple things are the best
thank you for sharing

[heather]

Hi Norma
Please look at www.parkinsons.org.uk (http://www.parkinsons.org.uk) for more information. Don't look at all web pages re Parkinson's as there are a lot of cranks out there and will just frighten you.
A feeling that your feet are glued to the floor or maybe unable to get through doorways is something that PD suffereres can get. Are you on any meds? Does your doctor know of your problems?

You will find that this forum is a great help to you. We are all in the same boat and all pulling together.
Have a good day and try and smile:):):) or even better have a good laugh:D:D:D
Drew
Hi Drew missed you over the weekend
hope you are well

[norma g martinez]

hi, thank you all for so much support and the very much kind
words,you know your not alone, i go to see a specialist in a
few weeks because my dr. says my pd is being hard to control
im on carbidopa 25/100 4xday and mirapex 1mg. also 4xday
my legs are so hard to get them started and very painful i
sit more than i walk not by choice,thanks for a shoulder to cry
on.
to all my freinds that have cared.

[heather]

you are very welcome Norma
that's what the site is all about. to try and help each other
we share the good with the not so good, but all comeout more positive and smiling :)
hope you have some help when you see your specialist
please keep in touch

[norma g martinez]

thanks again for your kind words and great suggestions.
and please let me know more about not being able to walk
thru doorways i was so releived to know i was not going
crazy and was not the only one anybody please tell me
more.
thanks again to all you great freinds.

[norma g martinez]

thanks again for your kind words and great suggestions.
and please let me know more about not being able to walk
thru doorways i was so releived to know i was not going
crazy and was not the only one anybody please tell me
more.
thanks again to all you great freinds.

excuse my spelling

[heather]

Only if you excuse mine Norma

don't worry, I have trained them all they just :):) to themselves, and :):)is good for everyone


http://i10.photobucket.com/albums/a126/maesisaf/spel11.gif

[susan wheatley]

just remember your not on your own norma i have trouble with my right leg most of the time am on co-beneldopa which has improved my dexterity but not done much for my leg,it feels like i am walking with a wooden leg, oh the joys of pd hope you are feeling better today norma, i just try to take each day as it comes some bad some good but one things for sure we are all still learning to live with pd but if you need any help with anything please just ask god bless susan.

[MargieB]

just remember your not on your own norma i have trouble with my right leg most of the time am on co-beneldopa which has improved my dexterity but not done much for my leg,it feels like i am walking with a wooden leg, oh the joys of pd hope you are feeling better today norma, i just try to take each day as it comes some bad some good but one things for sure we are all still learning to live with pd but if you need any help with anything please just ask god bless susan.

Hi,

My husband has PD and is experiencing trouble with both his legs most of the time. Bad weather seems to effect his legs for the worse. His doctors have advised him to walk every day even if it difficult so that the muscles will stay exercised. Even a small walk is better than none.

We are trying to cope with PD the best we can as a couple and my husband and I are still learning each day.

Having someone massage your legs while they are elevated could bring you some relief and progress. There are two aids that were recommended by one of my husband's doctors. One is called Activon and the other is called Sports Creme. They are over the counter products and can be purchased in almost any pharmacy. If you get any one of them, I hope you get help from it.

I hope the best for you.

Margie :)

[heather]

Hi
reading this reminded me, that when Jim was mobile,but couldn't walk far,i bought him some little peddles,the type like on a bike, but stand on the floor,they had 3 gears on it,and i put it on the lowest, and he would peddle away when watching the TV.
May be a help when weather not suitable to go out walking

[suzie Q]

i am not too good with the excersise every day i say i am going to do some and i usually dont .although iam busy most of the day......Maybe tomorrow..............

sue

[Tricia7]

I was scared when first dx'd and since then I go up and down. ITs frustrating b/c my right side is where my symptoms originated. I had broken my arm when falling off my horse - it took almost 2 yrs of seeing orthopedic drs thinking my pain and numbness was from the break.

Looking back I had many PD symptoms that we just never put together. I had a foot that turned in if I walked too far and some issues were not really physical. I have avery high level of anxiety mixed with deprssion.

Then when dx'd none of the meds helped my symptoms but caused severe sleepiness (I fell asleep driving many times). Then I became pregnant and went off meds. Had a miscarriage but stayed off meds to try again. When my symptoms were unbearable I went back to meds - less then a month later -- I was pregnant on the lighter side my family dr wanted to know what fertility drugs my neurologist was giving me :D
I went off the meds and had a beautiful baby boy. Now I am on artane, azilect and carbo/levo - my symptoms are the most controlled then ever had been. But memory loss is frustrating - some sleepiness

My fear now is my baby growing up with a mom that has a progressive disease. I want to be here for him and not be his burden. My hubby watched his dad become wheel chair then bed bound from the PD - often I believe he is more frightened then I.

Hugs
Tricia

[heather]

Hi Tricia
with all the determination and positive thinking you have , you will be fine , and your loving family
I honestly believe it's your frame of mind that sees you through

When Jim was diagnosed with his illness [ it mimics PD] he was told he had it for many years, and we we would be lucky if we saw 7 years 12 years down the line he is still hear [ no PD medication works sinemet just stopped the shakes]
5 years ago [ his sell by date was up :D]he was still walking talking etc etc etc we went to Iceland for my son's Wedding 3years this July ,he couldn't walk any distance, but did everything else , I WOULD NOT ALLOW HIM NOT TO DO ANYTHING. all the doctors etc etc said we shouldn't go, I politely :D said up you, we had a lovely time,everything went wrong,[ not with Jim] a long story but the memories are lovely
You will be their for your son,and he for you,because that's what love is about
I never see Jim as a burden,a challenge yes, he actual keeps me going,in both body and mind, the only thing i can say thank you to his illness for is, i honestly believe it has brought us much closer, we never take each other for granted ,any more, we treasure each day as before days just came and went, without any real meaning
So what i'm trying to say is, just live and enjoy each day, why worry about something that may never happen

[Pauline]

:)Hi Norma I was diagnosed in Jan , It is scarry Try not to look to far in the future just try and to take One day at a time and enjoy the good things in your life ,welcome aboard we will all help you to fight this we are all in this fight together :):):)Pauline

[norma g martinez]

yhank you PAULINA YOU HAVE HELPED WITH WORDS MORE
THAN YOU KNOW, IM NOT SCARED.
THANKS FOR THAY.

[grldnklly]

Hi Tricia,
Congratulations on having your son. Don't worry about the effects your illness will have on him. My father was diagnosed with parkinsons 7 years ago. I watch my nephews and nieces with him and it would warm your heart. Children accept people as they are. They don't see the disability, they see the person. Not only that, by being with someone who is ill children learn to care and to be considerate. As I am writing this I am waiting for my brother and my 10 year old nephew to come in (they call with the newspaper every morning). As soon as my nephew comes in the door he discretley checks the tablets that I have left out for the day (he doesn't trust me to leave out the right medication). He knows all my fathers tablets of by heart. He then checks that the mobile phone we use as an alarm for medication times has been put on charge. He organises my father's table to make sure that his glasses, his drink, his book etc are all in place. This is all done discretely! Both him and my other nephews and nieces have a lovely relationship with my father. I believe that something good comes out of every situation. Your relationship with your son will be enriched.
God bless
Geraldine

[Tricia7]

I want to thank everyone for the words of encouragement - I do believe that postive thinking and input are healers. I find my hubby very often gets frustrated with me and feels I can stop my symptoms if I work hard enough at it. It becomes very frustrating on the days he acts as though the PD is all "in my head" (technically I guess it is :o) and I know is is just afraid for me. But I need his support and encouragement and understanding not his frustration

Take care all
Tricia

[Pauline]

Hi Tricia- Just give your hubby time he will come around, my hubby at first and even now just pretended as if nothing was wrong when I needed a hug he would just go off on his own I think he hides his head in the sand just hoping it will go way but slowly he is starting to come around he still won't talk about it much to me but he has spoke to my daughter so I figure it is a start but the nice thing is we have a place to come and talk with others who are in the same boat, Hope you have a good day talk to you soon I love to chat :):):)Pauline

[grldnklly]

Hi Tricia,
I know how your husband feels. As a carer I didn't understand half of what my father was going through. There were times when I felt really impatient with him because I didn't know why he couldn't do some simple things. Like for example, looking for something or getting mixed up in directions. There were two reasons for being impatient, one being that I thought he was getting lazy and just wanted me to do everything and the other was because I was frightened. People talk about a close link between parkinsons and alzheimers. I was petrified that my father was developing alzheimers. I read a lot on parkinsons, but it's only through this forum and reading about peoples actual experience of parkinsons that I have begun to understand more of what my father is going through. I have also lost the fear of him having alzheimers. A lot of the side effects of medication seems to mimic alzheimers. You should encourage your husband to read through the forum, or if you want to keep the forum for yourself, print out some of the articles for him to read. The worst part of parkinsons is the fear caused by not knowing. Once you overcome the ignorance, the rest can be coped with.
God bless
Geraldine

[heather]

Hi Tricia,
Congratulations on having your son. Don't worry about the effects your illness will have on him. My father was diagnosed with parkinsons 7 years ago. I watch my nephews and nieces with him and it would warm your heart. Children accept people as they are. They don't see the disability, they see the person. Not only that, by being with someone who is ill children learn to care and to be considerate. As I am writing this I am waiting for my brother and my 10 year old nephew to come in (they call with the newspaper every morning). As soon as my nephew comes in the door he discretley checks the tablets that I have left out for the day (he doesn't trust me to leave out the right medication). He knows all my fathers tablets of by heart. He then checks that the mobile phone we use as an alarm for medication times has been put on charge. He organises my father's table to make sure that his glasses, his drink, his book etc are all in place. This is all done discretely! Both him and my other nephews and nieces have a lovely relationship with my father. I believe that something good comes out of every situation. Your relationship with your son will be enriched.
God bless
Geraldine

Hi Tricia

I have 3 Grandson's
the oldest is 9 and new Jim when he could walk talk etc,
he comes in now and first thing he says hi Taide [Welsh for Granddad] always wants to help me, but as he is doing things for me will just say "anything you want taide"

the middle one 6, part remembers ,and just says, taide, are you watching TV , Jim shake head for no ,so he says, shall we watch {kids programs } and turns over
The Youngest, has never known Jim any different, so come in
taide, can Nine [me] turn over for nick junior , shout when he thinks Jim wants anything, then all of a sudden you will hear him saying Nine it's hugs time, because Jim is on bed rest i have to lift him on the bed , he hugs Jim, then tickles his tummy,and says you need another shave , or have you pumped etc etc , [my son says be careful,in case you hurt taide i say why is he made of china] before he goes home he shout's see you tomorrow and goes
What i'm trying to say is age makes no difference, it's how you bring them up,i have never treated Jim any different,you could say sometimes,im hard hearted, we all/family have to survive and i'm not letting his illness win , or make my grandchildren, not want to come, because taide is different, they no taide is not well, and that's as much as they need to no
Like Geraldine said
your life with your son will be enriched
You husband doesn't get frustrated with you so much ,its PD he is frustrated/angry with, 12 years on i still get days when i want to scream, ,what Jim can do today,he may not do tomorrow, what i do say to him is "you can do it, you did it yesterday" This is to remind him he can so he doesn't forget
together you will find away of coping ,be honest and open ,and
don't forget to tell him you love him,I no at the end of a hard day that makes me feel wanted and good

[Tricia7]

Children are wonderful little souls:) and are strong and accepting. I just watched how hard it was for Jeff with his dad and cant imagine a child going thru that. Thats what we get for having kids at our elderly age:rolleyes:

My animals have also kept me going - I just lost my best walking buddy - Eagle to his heart disease and my other big boy, Curly, died of cancer just before Christmas. My girl Tess is still battling cancer and arthritis - she is such a sweet soul. The effort of caring for the horses keeps me physically fit! And though I ride very little now - my Gun kept me safe on the trails, sometimes even at his own expense (he knew when I was off balance and timid and was very careful - I never believed the stories oh my horse knows when you put a child on them and they behave differently -- well they are correct, whole different attitude!! Course my mare Cheanna - I doubt I will ever have the courage to ride that little spitfire:eek:

Take care all! Have a safe holiday!

[heatherwilmot]

Just scrolling through before logging off and found your site.
As so many others have said, there are good and bad days, one you get your head around the fact that you have Mr Parky to live with you now you will cope better. Well it doesn't get better just easier.
Re feet stuck to floor. I was walking up a hill in Shrewsbury Town Centre, came to a complete halt outside Boots, could not move. Pretended to look in window - advertising Cod Liver Oil!! while trying to get my feet moving I heard a 'click - click - click' it was a lady on a walking frame overtaking me. I found this very funny, laughed and my feet moved. If you cann't get through a door, step backwards and then go forwards quickly before your brain has chance to think, works for me. Mind you at the moment I find myself tottering backwards at any time. Very awkward if I have a pan in my hand.
Well, this time I am going to bed. Take care, don't let it get you down. Heather (The prill)

[bruce]

:(hi I Have Been Diagnosed With Pd About 8mos Ago,does Anybody Feel Out There Feel Like Your Feet
Are Glued To The Floor And Want Yo Go Face First.
And Are Unable To Walk I Am Very Depressed Can Anbody Out There Tell Me Hang In There They Have
Been There.Hi norma, I know how you feel. When I was first told I felt I had been handed a death sentence, but here I am 8 years later and ,all things considered, doing well. Do not give up!!! Always hve hope. I have down times, but I find something to look forward to. It does not have to be something big just something that will please you. You will do better each day and before you know it you will be enjoying things again in spite of yourselve!!!!! good days and good years to come .bruce

[heather]

Hi Heather P
Jim and I have walked that hill many times , I have pushed his chair up but not for a few years, we loved going into the pet shop at the bottom, is it still there, they had a Macaw up stairs
and the snakes where so lovely, He always behaved coming down, in case i let him go :):)

Like you said it doesn't get better just easier
I believe you have to have the bad days, so you can enjoy the good days, i/we don't think of everything going wrong as his illness, I first question is it his age[65] , and would it be happening anyway, we found by rocking back and forward help when he ever froze, We think he has cataracts, now, well who's to say he wouldn't have them if he was OK, these things are sent to try us:rolleyes::rolleyes:

[ltd-addition]

Hi Norma

After the relief of finding out what it was I'd got, I had to deal with denial, confusion & fear from my family & friends.
My attitude was to instinctively look after them all for 4 months. However I needed to know how I felt about my diagnosis so I left them to get on with it and went to a convalescent home through my works for 3 weeks.
My attitude was the following;

Ive got it so get on and deal with it

I can't change the clocks back

Enjoy what I have in life because it could have been worse

Take One day at a time

If it was a choice of me or a member of my family I knew my answer immediately = It was best it was me

I knew that God only gave to those who he knew would learn from it and handle it better on their shoulders.

I knew it was me .

I am, who I am and know I would have offered to take this diagnosis instead of it being given to some one else who perhaps couldn't have coped as well.

Therefore I am at peace with having Parkers.

I laugh a good belly laugh every day

I'm like a spring gazelle in my mind

I love life because I still have it

I may not always have trees growing on my planet but look good in a tutu (hah hah ha ) My sense of humour is wicked on occasions but that's how I survive.

Welcome to our world of having Parkers & those who share our symptoms. For these are our Partners, carer's who deserve not only a large Drink of whatever they fancy but our Respect, love and share of any lottery win we may have !!

My lottery win is the positive attitude I take and love within my heart.

Ltd-addition
Jokingly (looking like a tanned spring gazelle carrying her liver home from abroad in a separate suitcase ha ha )

[heather]

Hi ltd-addition
welcome home , we have missed you

[MargieB]

Hi Norma

After the relief of finding out what it was I'd got, I had to deal with denial, confusion & fear from my family & friends.
My attitude was to instinctively look after them all for 4 months. However I needed to know how I felt about my diagnosis so I left them to get on with it and went to a convalescent home through my works for 3 weeks.
My attitude was the following;

Ive got it so get on and deal with it

I can't change the clocks back

Enjoy what I have in life because it could have been worse

Take One day at a time

If it was a choice of me or a member of my family I knew my answer immediately = It was best it was me

I knew that God only gave to those who he knew would learn from it and handle it better on their shoulders.

I knew it was me .

I am, who I am and know I would have offered to take this diagnosis instead of it being given to some one else who perhaps couldn't have coped as well.

Therefore I am at peace with having Parkers.

I laugh a good belly laugh every day

I'm like a spring gazelle in my mind

I love life because I still have it

I may not always have trees growing on my planet but look good in a tutu (hah hah ha ) My sense of humour is wicked on occasions but that's how I survive.

Welcome to our world of having Parkers & those who share our symptoms. For these are our Partners, carer's who deserve not only a large Drink of whatever they fancy but our Respect, love and share of any lottery win we may have !!

My lottery win is the positive attitude I take and love within my heart.

Ltd-addition
Jokingly (looking like a tanned spring gazelle carrying her liver home from abroad in a separate suitcase ha ha )

Hi Ltd-addition,

We've missed you but are very glad that you were able to have a holiday. So, you got a tan did you? Wonderful.

Talk with you soon. 'Tis 2:04 am and tomorrow I must rise extra early.

Love,
Margie:)

[ltd-addition]

I have the same problem. My legs get stiff and my feet feel like they are nailed to the floor.Your doctor will prescribe a medicine the may help alleviate this stiffness. However this stiffness may never go away according to my doctor.I would suggest that you purchase a cane with a flat handle. Put the handle part on the floor next to your right foot and attempt to step over the handle.Once your foot moves you should be able to move. I have used this method for the last two years. We live in a three story town house and I have a cane on every floor.Its also very important to keep exercising every day. Try it .

Hi
Im just wondering how your doing