PSP Association
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Just joining in and needing advice

Hi everyone. I've been reading blogs for so long but feeling a bit down today I thought I'd join in. My husband Tony was diagnosed with CBD in 2008. We retired early to live in Spain, but came back in February to live near our family, our villa is up for sale. We have just moved to our second rented bungalow and have had to set things in place again. I seem to go one step forward and get sent three steps back.

I have one problem that I can't seem to solve if any one has any ideas please let me know. Tony leans to his right hand side, his left arm doesn't work, he thinks he is sitting up straight. We went for a trip out in the car for two hours but on the way back his head was resting on my left shoulder, not a safe place to be while I am driving. Any ideas on keeping him upright in his seat?

I am baking a cake to cheer me up while Tony has his afternoon sleep, and it is a good way to keep my energy up.


10 Replies

hi lorri,

hope your keeping well sorry to hear your getting trouble

i was diagnosed with cbd in 2008 as well at the age of 49

it was a bit of a shock at the time but i have come to accept

it now its my right arm that doesent work hardly at all and i tend

to lean to the left so i would say its probley caused by which arm/

or which side of the body is afected first as you dont have a lot of

strength in that side of the body you tend to lean the other way

to make up for it,I have found that doing exercise with my weak

arm like lifting little weights to try and strengthen the muscles

so far its working for me as for traveling in the car i dont know

weather you can get some kind of detacherble head rest that

can hold his head in place while your driveing i will look it up on the

internet to c if there is something you can use and let you know

at the moment i can still drive but my head tilts to one side if i have

to drive for a long time, you take care of your selfs,



Hi Ray

You are doing well to keep on driving. Tony gave up after an accident and he couldn't remember which gear he was in. He had a lot of physio on his left arm until the doctor realised that it wasn't making any difference. thanks for the head rest support advice. You take care.


Dear Lorri

I know what you mean - my husband Tony does exactly the same thing. Whether in his armchair or a wheelchair he slumps to one side or the other and I simply cannot get him to sit up straight. I don't know what the answer is. He is unable to lift things so for him he could not try to exercise the muscles on his weak side. Our daughter suggested one of those V-shaped back cushions. Maybe that might help.

Best regards



Hi Alexandra

I bought a v-shaped cushion in the market but haven't thought of using it in the car, I will give it a try, thanks.


Dear Lorri

If you try it and it works, please let me know. At present we prop him up (he is in a nursing home) with the narrow, bolster-like, cushions that they provide and these work quite well, but his head still keeps slipping down.

Kind regards



Hi Lorri,

Welcome to the forum!! At the moment I can't think of anything that might help when sitting in the car apart from sitting him in the back seat, if possible?!? My husband said maybe you could get a racing/rally-style 4 point seat belt fitted. Don't know if that's possible but it might be worth investigating.

Mum tends to lean in her arm chair - sometimes to the right and sometimes to the left. Our OT provided a long, sausage shaped bean bag that we wedge under her armpit on which ever side it is needed!

Hope your cake was good!

Love Kathy


Hi Kathy

Yes Tony thought the seatbelt idea was good, I do need to change my car when finances allow. He cant get into the back, I even struggle to get him in the front as he finds it hard to bend his knees and shuffle back into the seat. I have tried the v-shaped cushion in the chair but his head still falls onto his shoulder. Could make a big spoungy shoulder pad! What a picture.

Yes our family came so visit today and there was even a bit of cake left for them!!




Hi Lori We too had to return from Spain and my "down" days are coupled with the sad feeling of our dreams being cut short, the Villa is on the market as well which I am sure you are finding a worry as the market is so bad right now - it will be a relief when that is sold - one less thing to worry about.

My husband has good days and bad days - never sure what to expect - but at least I still have him with me and we have wonderfull support from the Hospice.

I have been reding everyone elses notes and only just written a couple of my own - but it does help to talk.


Hi Gwendolyn

Sorry to see you are in the same position as us.

Tony and I are going to visit a day care centre tomorrow, I just hope he likes it as he needs time out of the house and to socialise. We both miss the good friends we have left behind in Spain and are sure you feel the same.

Take care



Hi Lorraine

I do hope Tony likes the day centre - Ken was not too keen at first and as I used to drive him there he often said he was not going and it was hard work coxing him into the car - he quite liked it when he got there but now as the Hospice knew of my problem , they are sending a volunteer driver to collect Ken - he goes now as he does not like to let the guy down and it is working quite well . I need the few hours as well - 24/7 care is quite exhausting and it is good to have time to shop and visit my Mother (92) who is in a residential home nearby.

You may find that you need to explain to Tony that YOU need the time as well - it is quite a treat to have something different to talk about when we both get home again and it really helps recharge my batteries.

Good luck tomorrow - Tony will hopefully find some new friends.

Thinking of you Gwendolyn


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