We cannot straighten my father, any advice... - PSP Association

PSP Association

9,178 members11,302 posts

We cannot straighten my father, any advice, he is bent double in his wheelchair

millicenthatton profile image
6 Replies

My father is in the latter stages of this dreadful illness (PSP). Of late when he is in his wheelchair, he is bent over, his head touching his knees, and we cannot straighten him. Before now his head has fallen into his food. It is so distressing for us all. Dad is 89 and had PSP for 14 years. The Hospice nurse who calls prefers him out of bed, but some days this isn't possible because of this doubling over. Has anyone experience and advice about this symptom.

Written by
millicenthatton profile image
millicenthatton
To view profiles and participate in discussions please or .
6 Replies

Sorry to hear of this awful problem with your father. I do not know if I can add anything more that your medical services have already adviced. Without knowing your circumstances, it sounds like he has camptocormia, seen usually in Parkisnon's (and thus may be rarely seen in PSP, but can be seen in other disease conditions). Usually, if it is this problem, then patients are able to straighten fairly well when lying down. If he was my father, I would seek out a Parkisnon's expert, who has attempted to treat this condition. While most medications are limited in their usefulness, there are other approaches (braces, physiotherapy etc) that have some benefit. However, at 89, it might just be a case of keeping him comfortable and pain free, even if this means more bed rest.

Take care

T

millicenthatton profile image
millicenthatton

Thank you so much for that useful information. He certainly seems much better when lying down. We just want to make this last stage as comfortable as possible for him. Thanks again.

piggyinthemiddle profile image
piggyinthemiddle

I am so sorry for you and your father... My Dad has CBD (is 70 and diagnosed 6 years ago). He has this exact same problem. He lives in a nursing home and the nursing staff there haven't found anything to help I'm afraid. He has lateral supports on his wheelchair but they just lead to sores so he barely uses them. He too seems better when laid in bed. I know this post doesn't help you much but I wanted to say thank you because at least now I know we're not alone..... Also Strellys advice re; Parkinson's Nurse is very helpful. Take good care xxxx

millicenthatton profile image
millicenthatton

Thanks for that. It's horrible to see them in distress this way. Thinking of you on your journey.

elizalou1710 profile image
elizalou1710

Hi sorry to hear of this distressing problem mum has Psp and although she isn't bent over she is very tight and constricted in her upper body ! We have been using baclofen which is a muscle relaxant and private physio 2 x a week maybe it's worth a try. Is he able to communicate with u ? Maybe ask whether he prefers to be in bed good luck and best wishes Louise x

millicenthatton profile image
millicenthatton in reply to elizalou1710

Thanks for that. Dad cannot speak. But he definitely looks more comfortable in bed.

You may also like...

Advice on breaking PSP to my father in a way he can understand.

Hello, my dad was diagnosed with PSP yesterday, a friend went with him as I was unable to attend (I...

My husband's right hand is very stiff and he cannot open his fingers. It started off with just one finger, sort of like 'trigger' finger

now all his fingers, apart from his thumb and index finger, are affected and he cannot use his...

Changes to home/house...will he be able to cope with upheaval? Any advice?

as well. Dad (79)has PSP, diagnosed last summer. He is currently still very mobile (touch wood),...

My husband has PSP gaze. He has trouble keeping his eyes open and on a good day when his eyelids are open he cannot focus on my face.He has

Peripheral vision only which frustrates him very much.Has anyone found found anything to help with...

Hello all, my father has been diagnosed with PSP. We think he's been suffering with it for around 5/6 Years. Any nutrition tips to help us?

We are heartbroken and just want to take care of him.