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Dear Olga,

Please can you say what your husband's diagnosis is?

- Dorothy

from cell phone

> Dear all,

>

> I know find that my husband often is unable or refuses to walk. His

> legs just appear not to hold him up/ Does anyone have this experience

> and/or knows what that's about?

>

> Many thanks in advance,

> Olga

>

>

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My father did that with his Parkinson's disease, but not until the later stages.

Does have PD as well as Lewy?

 

 

________________________________

To: LBDcaregivers

Sent: Tuesday, January 3, 2012 10:32 PM

Subject: not walking

 

Dear all,

I know find that my husband often is unable or refuses to walk. His

legs just appear not to hold him up/ Does anyone have this experience

and/or knows what that's about?

Many thanks in advance,

Olga

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my mother hasnt walked for the month of dec. this morning they (hospice) brought

her a walker, now there trying to get her up and walking.

To: LBDcaregivers

Sent: Tuesday, January 3, 2012 10:32 PM

Subject: not walking

 

Dear all,

I know find that my husband often is unable or refuses to walk. His

legs just appear not to hold him up/ Does anyone have this experience

and/or knows what that's about?

Many thanks in advance,

Olga

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If progresses as my husband did, he will have some days when he is much

weaker than others. One day he might not be able to walk much and the next day

he will be walking (although unsteadily) around the house. It is the nature of

the disease. Also, he might complain of leg or foot pain that comes and goes.

I put a potty chair right by my husband's side of the bed so all he had to do

was stand up to urinate. During the day he would sometimes go to the nearby

bathroom and other days he was too unsteady on his feet to do so.

Here is a tip for potty chairs: I lined his with the small (4 gallon) garbage

bags and put some kitty litter in the bottom--not a lot of litter, but enough to

absorb some urine and to help keep it from splashing too much and to help with

any odor. I cleaned his chair generally once a day and if there was a lot of

urine, I poured the excess into the toilet and then used one of the ties that

come with the bags and threw the rest into the garbage. This makes quick work

of cleaning a potty chair.

Cassie

To: LBDcaregivers

From: olga.shaumyan@...

Date: Wed, 4 Jan 2012 03:32:19 +0000

Subject: not walking

Dear all,

I know find that my husband often is unable or refuses to walk. His

legs just appear not to hold him up/ Does anyone have this experience

and/or knows what that's about?

Many thanks in advance,

Olga

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Dear Olga

My experience with Jim was that it was the Parkinson's symptoms which

affected his walking ability. The muscles stiffen at unpredictable times.

Sometimes he couldn't walk and sometimes his feet would 'freeze' to the

ground but his body would keep going so he would fall over. Sinemet did help

to relieve these symptoms, but as with most medications with LBD, it is hard

to get a balance of the correct dose.

I know the feeling that you think he is 'refusing' to walk, but in reality,

it is really the disease which is preventing him from walking.

Is taking Sinemet? What has your doctor said to these symptoms? Perhaps

he needs to have another assessment made of his situation? It must make it

very hard for you, as I remember you saying previously that you live in a

two storey apartment/house with the bathroom half way up the stairs.

We had a 'walker' with wheels and a seat which was a great help, especially

when Jim couldn't walk. I would then use the 'walker' like a wheelchair to

get him around the house ... though thankfully our house is on one level.

I used to find it helped me to write down everything that happened in a

small exercise book with dates and details of symptoms etc so that when we

would go to the doctor, I had things in black and white. I would also write

down all the questions I had to ask the doctor, with two copies - one for

the doctor and one for me, and would make sure all my questions were

answered before I left the surgery. If I didn't do this, I would forget what

I wanted to ask because my attention would be distracted by the need to care

for Jim in the different environments outside the home.

All the best

Elaine

Elaine from Sydney Australia

Carer for four years for husband Jim who died peacefully in hospital on 12th

February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of Diffuse LBD

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" My experience with Jim was that it was the Parkinson's symptoms which

affected his walking ability. The muscles stiffen at unpredictable times.

Sometimes he couldn't walk and sometimes his feet would 'freeze' to the

ground but his body would keep going so he would fall over. Sinemet did help

to relieve these symptoms, but as with most medications with LBD, it is hard

to get a balance of the correct dose. "

 

 I had the same experience with my husband as Elaine stated above.

Jan

________________________________

Dear Olga

My experience with Jim was that it was the Parkinson's symptoms which

affected his walking ability. The muscles stiffen at unpredictable times.

Sometimes he couldn't walk and sometimes his feet would 'freeze' to the

ground but his body would keep going so he would fall over. Sinemet did help

to relieve these symptoms, but as with most medications with LBD, it is hard

to get a balance of the correct dose.

I know the feeling that you think he is 'refusing' to walk, but in reality,

it is really the disease which is preventing him from walking.

Is taking Sinemet? What has your doctor said to these symptoms? Perhaps

he needs  to have another assessment made of his situation? It must make it

very hard for you, as I remember you saying previously that you live in a

two storey apartment/house with the bathroom half way up the stairs.

We had a 'walker' with wheels and a seat which was a great help, especially

when Jim couldn't walk. I would then use the 'walker' like a wheelchair to

get him around the house ... though thankfully our house is on one level.

I used to find it helped me to write down everything that happened in a

small exercise book with dates and details of symptoms etc so that when we

would go to the doctor,  I had things in black and white. I would also write

down all the questions I had to ask the doctor, with two copies - one for

the doctor and one for me, and would make sure all my questions were

answered before I left the surgery. If I didn't do this, I would forget what

I wanted to ask because my attention would be distracted by the need to care

for Jim in the different environments outside the home.

All the best

Elaine

Elaine from Sydney Australia

Carer for four years for husband Jim who died peacefully in hospital on 12th

February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of Diffuse LBD

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Olga,

What meds is your husband taking?

From: Olga Shaumyan

Sent: Friday, January 06, 2012 12:16 AM

To: LBDcaregivers

Subject: not walking

Thank you all for sharing your experiences. The situation is not great

('s in hospital now; they are very patient and want to resolve). We'll

see. Olga.

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