Hi I am just wondering if anybody else has problems with Skeletal muscle? I can’t seem to find much information on this aspect.
Mum was diagnosed with PSP in October 2018 and since her body has slowly become quite twisted. Her hands are permanently clenched as she cannot open her fingers, and she has a permanent lean towards the left hand side she can no longer sit up straight.
Thank you
That photo brings back memories. Larry leaned to his left for a number of years. I would straighten him up and he would be over within a few seconds.
I tried pillows to prop him up. It did little good.
I did have a masseuse come in to massage his neck shoulders to try and help with the stiffness. Eventually that stopped being of any benefit.
Thank you for your response Jeff166, if you don’t mind me asking how long after diagnosis did Larry start to lean?
It was probably several years before it got really bad. We started using a masseuse because of the stiffness he was complaining about.
Mums has been quite bad for a while now. I like the idea of a massage but I am not sure how they would be able to reach, but it’s something I will explore when am able as currently she’s not allowed anybody in her flat except myself and careers due to the Covid situation.
COVID-19 has made a difficult situation even worse.
My response is exactly the same as Jeff, Jeas72. Rod had upper body stiffness and physio helped but for a very short time. He also leaned to the left; taking him out in his wheelchair was a struggle especially when the pavement had a slope to it - I often did battle keeping the chair upright. I’d stop to straighten him up only for him to end in the same position in minutes. Eating at a table became a challenge as without a dining chair with arms he’d have been on the floor in no time. I too tried propping him up with pillows but as Jeff said, it did very little good, I eventually let Rod eat in the armchair, wedged in with pillows and a hospital table pulled right up to him. The success of that was hit and miss. It’s so hard but I guess we all find/found our own way of managing all these challenges.
Best wishes,
Hils
Jeas72,
I’m sorry for what you’re going through. I don’t have anything to add except that I’m thinking of you and your loved ones as you go through such difficult times.
Sending hugs.
Xoxo ❤️ SewBears
My wife's left hand is becoming more clenched, but still sitting upright though cushions are arranged to assist against a tendancy to lean to her left.
I am sorry to say this is all so familiar and this is how my husband is too he was diagnosed in 2013 with CBD but then 2018 The diagnosis changed to PSP both very similar
too hard baskets for most Doctors and health professionals
But I will say when he gets UTI s which is very frequent the leaning tends to be more awkward than normal
Good luck my friend it’s a horrible journey isn’t it
X
It certainly is a horrible journey, so heartbreaking to see mum deteriorate everyday and not being able to do anything to help her.
Thank you for sharing your husbands experience as it is so difficult to know if this is part of the condition or something else.
Take care wishing you and your husband well
Yes definitely to the left , however these last few months it’s changed to the right ! We use cushions which help a bit. He also clenches his fists and has very rigid arms and a strained neck . A muscle relaxant has recently been prescribed but it’s too soon to see any benefit . Foot baths in Epsom salts help a little when I remember to give them to him .
Thank you Sunsetboulevard. It’s interesting that it’s changed to the right for you recently. I don’t think mum would change as she is so rigid she has no movement at all.
I have bought her a special chair which has more support but she never looks comfortable.
Her neck is very strained too due to the leaning it must be very painful although she mouthed no when I ask.
Her feet and legs are also mis-shapen but I will give the Epsom salts foot bath a try.
My sister was the same. She leaned to the left. She had an iron grip and if she held on to you she couldnt let go. My heart goes out to you xxx
My right hand will clench every so often, I'll run it under warm water and then gently pry my fingers apart and massage them with my left hand. You might try the same for your mother, Baclofen - a muscle relaxant might help. The bending and twisting sounds like dystonia, I have it with my right leg, foot and some in the neck. Botox may be a suitable treatment, but please note I don't receive the injections in my neck... it can lead to further swallowing issues. Massages is wonderful, but any benefit is only temporary.
Tim
Thank you for your response Tim.
I am sorry to hear you are also experiencing some of theses symptoms. I have asked her GP about a muscle relaxant but he says they wouldn’t really make any difference due to the severity.
I will certainly look into the massage thou as this may provide some comfort no matter how short a time, I think mum would enjoy it.
Those symptoms mirror those of my poor darling. Nothing I tried seemed to alleviate them but she gave no indication of pain until the very end when she was given palliative drugs, shortly after which she passed. I am sorry you have to go through this with her, you are in my thoughts. Rob
Thank you for your response Rob, it certainly seems to me now that these are indeed the symptoms of PSP. I am very sorry to hear of her pain at the end and I am glad she found relief in the palliative drugs.
Take care of yourself.
My husband’s right hand is clenched and his arm is rigid. He has a little lean, but not bad yet. He gets massage and stretching Monday through Friday. He says he feels better and less stiff after the massage. His right hand grips anything that comes close. We call it his Vulcan Death Grip, because it won’t let go!
Thank you for your response Selbuly14, I think the message may help mum to feel a little more comfortable and I will explore this once she is allowed further contact with regards to Covid risks.
Mums hand are so tightly clenched too, but she finds it painful if I try to open them even in the slightest. I have started to use smaller paint rollers and try and push them into mums palm just so her nails don’t dig into her palm. I try and keep her finger nails as short as possible but as I mentioned trying to open her fingers, even in the slightest causes pain so it’s a catch 22.
Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body.Aug 28, 2019
Many thanks Espink, I had not heard of Dystonia before I read yours and Marilyns post.
When I first read about it, it was describing twitching muscles which mum doesn’t have or the cramps or spasms, or at least I can’t see them, but mum is unable to communicate so it’s difficult to know if it is happening and she can’t tell me.
However when I continue to research it also stated - parts of the body twisting into unusual positions – such as your neck being twisted to the side or your feet turning inwards. Which exactly describes how mum presents.
Hi there , sorry psp is a very cruel disease, with many symptoms, not all develop every symptom, my brother was diagnosed in 2013, but with him he has all symptoms, his whole body is ridget, his muscles are bad, his arms and hands are clutched, can not move them at all, yes all part of psp, as that disrupts every muscle in their body, from head to toe, from symptoms prior to DX it is. Ow 10 years, he is on hospice now, I pray every night that the good Lord will take him to a much better place. Take care Nettie
PS if you go into Mayo Clinic, it will tell you everything you need to know.
Thank you so much for your response Nettie. I am very sorry to hear of your brothers discomfort and suffering.
Mum sounds in a very similar position to your brother. I agree it certainly is a very cruel disease and i find it very difficult to know how far along the journey mum is as I understand it is individual to each person but this makes it hard to know what to expect as we continue. I have found PSPA a great source of information but I will also have a look at the Mayo clinic.
Although mum was diagnosed with PSP in October 2018, she had previously been diagnosed with Parkinson’s since 2015, so overall we are 5 years into this. Mum has rapidly deteriorated thou in the last 12 months i often find it frightening as I am sure mum does too although she isn’t able to communicate to let me know.
Take care Nettie, I wish you and your brother much peace.
Jeas, so sorry to hear of your Mum's problems and suffering. My husband (CBD, since 2006)has been severely dystonic for 2 1/2 years now. It is hard to watch; these are cruel conditions. A big help to him is his upholstered, reclining arm chair. It is electrically controlled (battery which we recharge at night) and reclines in a continuous arc, which helps him to find more comfortable postures. I found it at a nice furniture store; about $ 2,000 retail, but I don't know what he would have done without it. He also has a power wheel chair which can adjust his body in a variety of ways (again, not inexpensive, about $ 20,000 new without medical insurance) and that permits him to get outside for "walks." He is not able to control the small computer on his chair, but there is a second set of controls at the back which I use and he enjoys his daily "walk."
Marilyn
Hi Marilyn thank you for your reply and for sharing the information about your husbands condition I didn’t know this part of PSP actually had it’s own name of Dystonia. I’ve just been able to look this up and it has given me a greater understanding.
I have bought mum a specialist chair which has really helped with regards to comfort as it very cushioned and also portable so allows mums ti be move her from the living room to bedroom in one move without having to use her wheelchair as mum was finding all the additional lifting exhausting.
I have also recently had additional support put in the back of mums chair but unfortunately this isn’t helping with the leaning as mum seems to lean not just to the left but also slightly forward which makes it even more difficult to get her any lateral support
Mum did have a power pack on her previous wheelchair but she needed a more supportive wheelchair as she was falling out of the previous one and the new one is not compatible with a power pack and it is quite heavy to push. Like your husband mum likes to get out for fresh air and I try to get her out at least once a week, or I was prior to Covid, sadly I can’t take her out more as I also work full time and have my son to look after too.
Thank you again for the information. I hope you and your husband continue to manage with this very difficult illness together.
Kind regards
I am afraid this may be an unusual answer, but after 5 years of trial and error, I have found my husbands rigidity was helped with carbidopa/ levodopa. We tried the drug at the beginning of his journey. After several months, we saw no obvious change in his condition. We went to Mayo where they tried a new dosage and recommended I increase dosage Over the next months.We Still saw no improvement, so they toLd us to discontinue the drug.
Over the next few months he was unable to hold us his head. I mentioned this was the only thing I noticed. I was told I could try the carbidopa/ levodopa again. After about 5 days, the neck rigidity proved.
That was 4 years ago. Now his rigidity has escalated. His hands are clenched ( one more then the other) . I am with him constantly and still think the drug offers some help to him,
Thank you for sharing your husbands experience. Mum was on levodopa for 3 years when her dx was Parkinson’s but unfortunately it was making no difference.
Like your husband mums rigidity has escalated, especially in recent months.
Take care
Maureen Hurst
Uncontrollable use of toothbrush
My Mum ( Mary) x
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It's difficult to cope with PSP
