Ways to help out of fetal position? - PSP Association

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Ways to help out of fetal position?


Hey thank you to everyone who replied to my thread about my dad not getting the feeding tube if/when it comes time. I enjoyed all replies VERY MUCH but if I tried to answer them, I'd be back down that road and for now, today, this moment, I'm happy to have my head in the sand for as long as possible. SO! Next inquiry- Daddy's body is getting stiffer. He hasn't been able to so much as stand for several months. He's bed-bound but with the help of a hammock looking lifting device (can't ever remember what it's called,) most days he spends a few hours in the family room in his lifting recliner. He has less ability on his left side to straighten his hands or legs and often can't straighten any of his limbs. He's getting frozen in the fetal position. My question is, I'm afraid I'll hurt him if I help him straighten, or break a bone. He seems fragile in this way to me but I'm not sure if it's only my imagination. Maybe it'd help him be a little more flexible if we, his carers, did slowly gently help him straighten? Darn doctors know nothing about psp so there's nobody to ask. I mean if psp is strictly the brain not communicating effectively to tell the body how to straighten, then it's not an issue with bones or muscles, right? So it seems like it'd be safe and maybe help to try to straighten him. Sometimes when we move him he'll say it hurts, even though we're always as gentle as possible. Thanks dear friends / warriors in this tragic battle against evil psp. P.S. It's called a Hoyer Lifting Device, I googled it.

6 Replies

My mum is on Beclonfen to reduce stiffness in her limbs. The dosage will vary depending on the level of stiffness. I'd recommend you go to your GP and discuss this asap. We also give her a massage a couple of times a day and very basic exercise to keep some movement and reduce stiffness. My mum is bed bound so important that she keeps whatever movement she can. Hope this helps

in reply to am2015

I massage B once a day. Strangely it is his jaw that seems to be tighteneing up and not due to TMJ. The speech therapists has him do TMJ exercises to prevent any more immobilization. I totally support what am2015 says and discuss methods of stretch with his GP. Perhaps getting his own physical therapist to assess range of motion would be the best thing to do. They will give you exercises that based on his range of motion...

Start with your dads dr. and ask him for some Physical therapy


I think we maxed out on PT already, which lasted only a few months but that was back when Daddy could stand. His physical symptoms are far worse now. Medicare sucks rotten eggs / provides almost no help unless you're all but destitute.

Well lucky B and me, we are that destitute.... :( not that we are getting richer or even maintaining a savings with medisuck.....we do own our house, car and dog....so no payments there....and we don't owe any cards ... but that also means that we are in disrepair as I don't spend money that I don't have......I feel very holed (?) hold(?) up....afraid to make a purchase for the strains that it makes on next months budget.....

We only get 15 PT. OT, speech visits a year...and thats ONLY if they deem that their therapy will "correct or improve" . You throw the word "Progressive" into the assessment, and they have every right under their law to say "sorry"....and they have.... so I know medisuck's not based on moral standards.....

Well I don't know how well it will help, but you can always google an do PT yourself. My son has rebuilt an engine (and it worked) through YouTUBE....and just last night I used it to help me flush my husbands catheter...I swear, I thought I was going to pass out for fear of the damage I could do ! He's not septic so I think I did it right!

Goodluck to you and your dad,


Ahaha, "medisuck"... I like that! I know how you feel regarding fear of causing them more harm than good. Daddy's whole body is so stiff and he's unable to even stand so he's only out of bed a few hours a day by way of the Hover Lift. He's so stiff though that when I flip him to his other side in the bed, I feel like I'll break HIM, or his bones. Yet, I'm flipping him by myself and he's a 6' tall man not fat or skinny, but I can flip him only so gently. It sure would be nice to have medical care from personnel who have a clue. I've done a better job of finding ways to help Daddy than any of the darn doctors he's seen. Most doctors seem to just send him home to die.

His neurologist has exactly that sentiment. But I really don't think there is anything more that he can do....so he just does what I tell him...like the other docs do and that's really all I need....well that and a frickin cure....and medicare, if you read my nickname for you, please dont' get mad and cut B off...it you want to cut me off that's fine , I opened a can of dog food, I could not believe how much it looked like the soup I eat......and some of those dog foods are more expensive than the soup I eat! So medicaid, I'm already a spoonful away from alpo anyway...lol


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