Just wondering if anyone has experienced this with their loved ones.
My sister has PSP and I’d say fairly advanced now. She has carers 4 times a day who get her up in the morning and she spends a few hours in her wheelchair til lunchtime then back to bed for the afternoon and back up for teatime for a few hours. She has minimal use of just one hand but still swallowing well.
Just recently she has these quite prolonged muscle spasms in arms and torso which is a new aspect to encounter.
Any advice or experience of this anyone?
Is it stage in the progression?
Any tips or knowledge would be very much appreciated.
Many thanks
P
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Afar
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Hello. Your sister’s situation must be very difficult for you both. I’m sorry that I don’t have any solid advice. We had some success with heat and massage for muscle contractions, but I don’t think we faced anything so harsh as you describe. There are anecdotes on the site here that advise various elements, like calcium or potassium in food, like milk and bananas. I suggest perhaps a discussion with a doctor about muscle relaxants.
Thank you. I’ll suggest that to her husband. It actually made me think of the heated over blankets you used to get. I wonder if they are safe at very low setting? My sister always liked heat…the fans in the car would always be blasting at the hottest level, wood stove roaring etc.
Hi there, my mum experienced these spasms in the top of her neck reducing head head to fall right down. These have now pass thankfully and it seemed to correlate with her own health.
After she had an injection or a fall the spasms would occur. I perhaps think it was the body processing a change/shock.
Could it be something similar for you?
Wishing you both kindness and health through this very trying disability.
Thank you for your kindness, She has a yet another set of antibiotics for a uti …the catheter seems a constant issue. Maybe it correlates. I shall pass that on to her husband. Thank you.
I suggest to start an intensive and systematic exercise program including, if possible, walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.
• Exercise 6 days a week : passive in bed (move all major muscles) and active (helped by 1 or 2 people). At least go up and down 50 steps (odd days), walk 100-200 meters (even days). Speech therapy exercises and exercises of mouth and ocular muscles. Then the patient needs to rest at least 30 minutes. Swimming can be an excellent exercise if ..... the chosen style is done correctly. It is advisable to start with a monitor to ensure that the movements are correct.
• To drink liquids is important also. Add thickeners (eg, Resource from Nestle, Thick-it, Simply Thick-Easy Mix, CVs,etc.) to drinks (soups, water, Aquarius (*) orange or lemon or similar without gas, etc.) till obtain a sufficient glutinous liquid. Some mango and peach juices have an adequate consistency.
(*) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level. Lack of the proper level of electrolytes in the blood can cause spasms.
spasms and stiffness:
We not detected major episodes muscle cramps or spams. In the daily diet we include in the breakfast a quantity of fresh cheese and in the meals egg yolk or fatty fish. And just as important as the incorporation of these kind of foods, whenever the circumstances arise we expose the patient to the sun discovering legs and arms. The idea is to favor the presence of Calcium in the diet as well as favor the activity of vitamin D.
We combat some stiffness in hands, arms and legs with gentle and persistent massages. We have read that the drug "Baclofen" can help in some cases. Ask Physician.
Oh my word Luis, I wish I had known this 6months ago when she was still mobile. It’s difficult for me as I do not live nearby and despite reading up on PSP and trying to advise her husband I do feel we’ve failed her through ignorance.
What seemed like a good idea at the time, respite in a care home while an accessible bathroom was fitted really set her back. The care home didn’t understand the disease and she was more or less trapped in a wheelchair for 3weeks because they worried about her potential to fall. What with covid restrictions and only a 30min visit once a week she deteriorated so much. She walked into to the place and was wheeled out unable to use her legs and her right arm. And the awful reality is she has never been able to utilise the bathroom.
I will pass on this info to her care team and pray that some can be done.
Hello, my mum has csb and also sufferes from painful spasms in her arm (which she can't move anymore) and in her neck. The neurologist has prescribed Botox injections in the arm, which she has tried but hasn't worked so far. Is this something your sister could try?
Thank you. It’s so hard to accept this reality of ‘day by day’ but it is sinking in. Such a tragic disease process. And somehow to bring light into the darkness of the situation. Hour by hour is a good way to think about it. Thank you.
Sorry to hear that your sister is in such distress. I experienced muscle contractures and spasms early on with the disease, and still do, but not as intense as in the beginning. Exercise, heat, massage and Baclofen (muscle relaxant) help me. Lui's list of extensive treatments is a wonderful guide to follow. See what you can implement with your sister. I'm sure she would find to try some of his suggestions acceptable.
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