Contortions with CBD

I haven't posted in a while but my mom is now entering another stage of this horrible CBD. She is starting to contort and I don't know what to do to prevent or help it. She is so rigid and when I try to move her hand or fingers she expresses pain. Does anyone have any advice as to how to prevent the contortions from getting worse. She is currently twisting her left wrist and contorting her left hand and arm behind her back. Does anyone have any advice or experience?

[Marie_14]

I am sorry nobody has replied to you. I have no idea if this is normal and if it is what do people do. I just thought I would at least say hello to you Ysanty. It sounds very stressful. Can you not contact the Neurologist to see what can be done? Or if there is a Palliative Care team nearby they should be going to see your Mum. Try to contact them? Take care of yourself as this must be very stressful for you.

Marie x

[Hidden in reply to Marie_14]

Thanks, I will.

[Hidden]

My sister has CBD and is experiencing rigidity and contortion in her neck and hands, an even the muscles around her eyes. There are anti-spasm drugs available that may help. In Australia, they sell as Baclofen or Stelax but they can have side effects. Even though she was on a low dose, we stopped them after 4 days as they made her impossibly tired and sleepy. However, it may be worth a chat to the neurologist to see of there is something to help your mother. The trouble with this awful disease is so little is known and it all relies on trial and error at times. We have also ordered soft splints for her hands to prevent the extremely tight fists she ends up with. Best of luck to you, I know how tough it is.

[Spiralsparkle]

Hi. The neuro team should be able to help you with this issue. My Mum's left hand is contracted and she doesn't move the left arm apart from spasms and jerks. Botox injections can help relax the muscles aswell as the drugs mentioned as muscle relaxants. My Mum couldn't tolerate them. She has had a hand splint made that she wears in the day to help keep her hand and fingers as open as they can be. We do passive limb movement exercises to try keep all her limbs from becoming rigid for as long as possible but there will be a time when that won't be effective. Unfortunately we can't stop the progression within the body of these conditions. I do also give her legs a gentle massage at bedtime as that seems to help relax them, she has alot of spasms and myclonic jerks.

[Cuttercat]

OH MY, Charles does this and it is so scary!!! He did it yesterday when we came back from the ER. Today is better. He is rested now. I think it may also be a product of dyhydration. Now he is more alert.

Charles is an RN and he said to me the twitching is the "Palsy" He has PSP not CBD but they are all under the umbrella.

I'm going to post most later.

Cuttercat

[Hidden]

Dear Ysanty, I know how upsetting this phase of the disease is, I went through it with my father. It is ghastly to watch the suffering. What I did, in despair was to buy some sponge tennis balls and made a hole through the middle of them and threaded some elastic through. Just sufficient elastic to keep the ball in place in my father's palms with the elastic going round the back of the hands. These kept the hands semi open and air could get to the skin. Also when those closing contractions of the hand occurred the muscles were not kept taught through the spasm and once over the bulk of the sponge would help the hand open and be more relaxed again. I had to keep an eye on them though as they could slip. I could not think of anything else and no other help from medics. Also I bought some of those thick elastic band things that keep fitters use to exercise with. I chose one that was fairly flexible and springy and made a loop. One end I put over his now ridged thumb and the other end I was able to hook over the side rail of the bed. This meant that when the contraction happened his arm could move, so flexibility and movement preserved but it was harder for his fist to reach his neck and the thumb nail cut his neck as this was a problem. Also when the spasm was over the arm could be gently brought down to rest. Well, that's what I did. I was desperate. As a result there was a safeguarding issue raised against me and I was kept from visiting my dad for a couple of months. When he died and the brain biopsy report came back the manageress and all staff at that nursing home were fired, however, I lost precious time with my dad. I still used to go to see him and wave and shout to him through the window. What a nightmare. That's our British NHS for you. All the best. Struggle on. That's all you can do.

[Hidden in reply to Hidden]

Thank you for your story. It does make me feel not so alone and your story is even worse not being able to see your dad. What a shame there's not enough awareness of this horrible disease.

[Hidden in reply to Hidden]

Thank you Ysanty for your reply. It does help, I think to share one's story, it might give someone some comfort to know they are not alone. Why so little information is given out to the public about PSP I cannot work out. Maybe by the time is carers have actually worked out what is happening we are so overwhelmed by it and it's affect on our lives that we have enough to do just to survive and care for our loved one. There is no more energy to spread the information. I was just absolutely exhausted and quite broken by the end of it all. I had to then turn and try to save myself and adjust for the life left to me to share with my children and grand children. I'm still, after nearly four years not really over it. I've never experienced anything so cruel. I don't believe in god. If there is one, he's pretty sick and maladjusted. There is no excuse for making anyone suffer with a disease as devastating as PSP. No rhyme or reason to it. I wish you well and the strength to see it through with grace. Again,thank you for you message.

Anne

[rriddle]

My father had PSP (confirmed via brain donation). He also suffered from painful rigidity and contractures. We tried these treatments for the rigidity: botox injections, Baclofen, Sinemet (carbidopa/levodopa), dantrolene, and massage (temporary relief). We tried these treatments for constant pain control: methadone, Fentanyl patch. And we tried these treatments for breakthrough pain (given before we had to move my father): Roxanol (liquid morphine) and liquid Ativan.