cjd and physical therapy

October 24, 1998

Debbie,

My mother in law is in a nursing home and they have repeatedly attempted to

give her physical therapy, particularly for her neck which is bent at almost a

90degree angle. She refuses and has gotten very nasty with the nice lady.

One time she even punched her. At this stage, she just doesn't understand

what they are trying to do to her. They keep trying--its in her care plan,

but so far its been impossible. Its unfortunate because they feel they could

make her more comfortable, particularly with her neck and upper back.

This week she is almost non-ambulatory and was moved out of the Alzheimers

unit, so I don't know what they are going to pursue as far as the PT in the

new unit. She is losing her ability to walk.

Hope this helps--its rather bleak for her, I'm afraid. The PT was impossible.

Vicki

October 24, 1998

Vicki-

I am sorry to hear about your mother-in-law and the way that things are

progressing. I'm sure that the staff at the nursing home understand what she,

as well as all of you, are going through and know why she's reacting the way

she is. Be sure to ask if you have any questions. I know that with ,

they answered anything that they could answer and tried to refer us when they

didn't know.

Keep your faith! And remember we're all here for you...

October 24, 1998

Vicki,

I am so sorry your mother-in-law is so sick and thank you for the information.

What would they be doing to her to help her feel more comfortable?

Debbie

<< From: SOUKUPS@...

Debbie,

My mother in law is in a nursing home and they have repeatedly attempted to

give her physical therapy, particularly for her neck which is bent at almost

a

90degree angle. She refuses and has gotten very nasty with the nice lady.

One time she even punched her. At this stage, she just doesn't understand

what they are trying to do to her. They keep trying--its in her care plan,

but so far its been impossible. Its unfortunate because they feel they could

make her more comfortable, particularly with her neck and upper back.

This week she is almost non-ambulatory and was moved out of the Alzheimers

unit, so I don't know what they are going to pursue as far as the PT in the

new unit. She is losing her ability to walk.

Hope this helps--its rather bleak for her, I'm afraid. The PT was

impossible.

Vicki

>>

October 24, 1998

Debbie,

I believe they were trying neck and back exercises. We are in Ohio and she is

in Florida (my husband is down there this weekend) and I have only met the PT

but have attended her care plan meetings. Her upper back and neck are

painful, she even winces when we touch her. Her neck is bent at an angle that

I can't even get mine when I try. Hope this helps.

Vicki

October 24, 1998

Vicki,

Thank you. You helped a lot. Now I understand it. I thought your mother-in-

law was in Ohio now. I knew she lived in Florida but didn't realize she was

there now.

Debbie

<< Debbie,

I believe they were trying neck and back exercises. We are in Ohio and she

is

in Florida (my husband is down there this weekend) and I have only met the PT

but have attended her care plan meetings. Her upper back and neck are

painful, she even winces when we touch her. Her neck is bent at an angle

that

I can't even get mine when I try. Hope this helps.

Vicki >>

October 24, 1998

Debbie,

Yes, her being in Florida is part of our problem. My father in law is

devastated and really needs family support, but we are all in Ohio. He has

refused to come back to Ohio because of the doctors--who in my opinion are

worthless!! If we could only move them back here, atleast until this dreadful

disease runs its course, we could help him and share the load.

As it is, I talk to him at least once a day, many times he's sobbing terribly.

Hospice has been great, but they aren't family and aren't available to comfort

him at times like those. This week he yelled at me that " if it wasn't for him

nothing would be done for her " and that we had done nothing. One of us (2

brother in laws, my husband and myself) have been down there each weekend. I

have been down 3 times (timed with doctor appt. and tests) since August, each

time for a long period (5 - 10 days). I have 3 sons so its not easy--at least

they are fairly self sufficient (12, 13 and 16 years). I know he's grieving

and frustrated, but we are very limited in what we can do from here.

CJD is hell.

Vicki

October 24, 1998

Vicki,

It makes it harder with you in Ohio and your in-laws in Florida. You are

doing all you can and your mother-in-law is lucky to have such a loving

family. Like you said your father-in-law is frustrated and grieving and is

therefore just, it sounds letting out the frustration wherever he can. You

definitely have nothing to feel guilty about.

Debbie

October 25, 1998

Debbie

They tried to do Physical Therapy with Steve, but it just made him worse.

Could it depend on what part of the brain is affected?

Beverly B

October 25, 1998

My wife started to grab the covers of her bed with her least affected arm

early in her hospital stay - nurses said to give her something to hold - so a

relative gave her a small teddy bear-- she would drop it -so we tied it

loosely to her wrist with soft gauze---she would not look at it but seemed to

search for it and hold it most of the time--later we gave her a rolled up

wash cloth for the other hand--it seemed to help having something in both

hands---we put the bear in with her along with our wedding picture at her

service as we knew we could never stand to keep and look at that little

bear---

October 25, 1998

Vicki:

If you will write to me, I may be able to help with suggestions/ideas on

your mother-in-law in FL. I believe at this poiont, help form someone who has

been through the CJD experience, especially another spouse, can be the most

helpful. We also have very helpful contacts in FL who have

experienced CJD firsthand.

I would like to know the symptoms she is experiencing and how long she

has been diagnosed, etc. If she is in the latter stages of CJD, PT may be of

little benefit to her. I know that Dr. Hill withdrew JD's PT after his CJD

was diagnosed in the latter part of January 97 because it was both frustrating

and aggravating to JD.

If your father-in-law will permit you, please let me have their telephone

numbner and I will be glad to call your father-in-law to offer support and

personal experience.

Thoughtfully,

Dolly

October 25, 1998

I don't know but it sounds logical that it could. Anyone else know?

<< From: SBarwick@...

Debbie

They tried to do Physical Therapy with Steve, but it just made him worse.

Could it depend on what part of the brain is affected?

Beverly B >>

October 25, 1998

Dolly,

I will ask my father in law if its ok to give you his name and phone number.

He is a very private person and may not want to talk with a stranger. On the

other hand, he has never faced anything like this and is not getting a lot of

knowledgeable helpfrom the nursing home--they have never seen CJD, although

the nsg home doctor has seen it.

Are you in Florida? They are in the Cocoa Beach area.

She was diagnosed as CJD in September after initially receiving a

" dementia " /alzheimer's diagnosis the last week in July. She became violent

and unmanageable in late August (she wasn't sleeping and their 5th floor condo

was a great danger to her) and had to be put in the nursing home just before

Labor Day. At times she knows who we all are, mostly she doesn't. One of us

is down there every week for a few days to support my father in law. She was

hyperactive--roaming the halls in a " gerry walker " night and day. We have had

to hire 24-hour care to keep her safe. She has just been moved out of the

Alzheimer's unit to a regular nursing unit. She is losing her ability to walk

and this past week she slept almost straight for 5 days. They discovered she

has a bladder infection that is responding to Bactrim.

We don't know what " stage " she is--have never seen " stages " of CJD like they

have for Alzheimers. Do you have an idea? She sometimes gives appropriate

responses to questions (surprisingly appropriate and/or funny) but then is

gone. She has no idea where she is--she will talk about the people " across

the street " or whatever. Sometimes she just babbles unintelligibly. She is

on Risperdol now which has helped somewhat.

Thanks for any help. I really hope my father in law will agree to talk to

you. He cries often on the phone with me and I have a feeling that he will be

afraid he will do the same with you. It is so hard for him to talk about

her--they adored each other. I will try to tell him that its ok to cry, that

you have been there. When he talks to his sons (my husband is the oldest) and

starts to cry he hangs up--but I won't let him and we cry together on the

phone. He is ok with friends until he talks aabout her and then he cries and

hangs up too. Its such a helpless feeling being so far away.

Have to go now. My boys need homework help and are getting desperate.

Thanks, Vicki Soukup

October 25, 1998