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

[millicenthatton]

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.

[Hidden]

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]

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]

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]

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

[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 in reply to elizalou1710]

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