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.
Lorraine
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Lorri-2
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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.
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.
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.
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!
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.
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.
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.
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Rest in Peace
Just need to share
PSP diagnosed after hip surgery
The Bluebird
