Wheelchairs?: are there any suitable... - PSP Association

PSP Association

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Wheelchairs?

msomaya profile image
10 Replies

are there any suitable wheelchairs for PSP patients? my dad was admitted to fit the tubes, as he had terrible aspirations and has become quite weak, his body has become so rigid that he has to be pushed to sit down or stand up. hence its difficult to handle a normal wheelchair with wheels.. it would topple with my dads weight when he tries to sit. if anyone has any suggestions it would be highly appreciated

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msomaya profile image
msomaya
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10 Replies
dorothy-thompson profile image
dorothy-thompson

Dear Msomaya

here in the UK we are able to get wheelchairs on loan from something called Mediquip via a recommendation from the neurology department in the hospital.

My husband had one with a neck support which was extremely helpful to both him and myself as I had to push him as he was unable to.

Kind regards

Dorothy t

msomaya profile image
msomaya in reply to dorothy-thompson

thank you so much for your reply. we are in India but I can atleast check out the website if they have something and hopefully if its affordable we could import it..

greyhoundmom profile image
greyhoundmom

When my husband's body became so stiff, Hospice provided us with a high-backed wheelchair that also had adjustments so that it would recline backward a bit. This supported his head and neck and changing the angle of the back of the chair (reclining it) would relieve the pressure on his bottom, from sitting in the same position all the time.

We also found that putting him on scheduled doses of baclofen helped with the stiffness somewhat - but not always.

Best of luck,

Connie

msomaya profile image
msomaya in reply to greyhoundmom

Thanks Connie!!

jimandsharynp profile image
jimandsharynp

You might try what in the USA is called a "Transport Chair". It has four wheels that are very small compared to wheelchairs. They may be less apt to roll/move with the brakes on. I liked the one we used and actually took it into our roll-in shower to bathe my wife. Might work for you also. I hope you find a viable chair that will work for you. There are also wheelchairs where the back tilts back. This might work because he wouldn't have to come to a sitting position but could be placed in the chair in a more laying position. You'll work things out with the help of those on this and other sites. Hugs! Jimbo

msomaya profile image
msomaya in reply to jimandsharynp

Thanks jimbo!!

Christine47 profile image
Christine47

There is a series of great posts recently done on CurePSP, one even done today. I suggest you read them. I found the extremely helpful when weighing one's options. It is in their forum under wheelchair recommendations. Let me know if you cannot find it.

Christine47

msomaya profile image
msomaya in reply to Christine47

Thanks christine

msomaya profile image
msomaya

Thank you all so much for your responses. I truly appreciate it. I was very depressed the day dad was admitted to fit the food tubes but I feel better now. Though seeing him in this state really kills our family.. I wonder if anyone of you have experienced the problems with frantic behavior. Earlier when my dad could talk he always said, I will not "not walk" for the fear of falling.. He kept on always trying to walk. He would always sit up or stand without support despite telling him hundred times don't do it. We gave him a bell to call us when he wants something or wants to go somewhere but he doesn't believe in dependency. Hence we had to foolproof our house against falls with cushioned edges and railings almost everywhere..

Since we are in India it's relatively easy for us to get these things done. So our main concern with wheelchair is also that it has to have enough safety measures that would not allow him to get up without someone being around.. We of course don't want to tie him up but in better words have things around him which will make it difficult for him to get up without our help. In the hospital too his hands had to be bandaged because earlier he has pulled off IVs and catheters.... He is mentally sane but probably too frustrated with his state of dependency... Has anyone encountered such behaviors? Is this normal?

msomaya profile image
msomaya

And hugs to all of you.. May we get the strength to see our dear ones suffer and our dear ones the strength to bear this phase of life!!

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