Does anyone have any experience with these two conditions? My husband developed both so he leans forward and to the right which makes sitting in a chair very difficult. They are investigating Parkinson’s plus syndromes at the moment but he doesn’t quite fit all the criteria. He was diagnosed originally in 2017 with atypical Parkinsonism. The Pisa syndrome had been the worst thing which he developed 3 years after diagnosis. I’m constantly trying to find ways of holding him upright in any chair. The physios and consultants say they have never come across a case quite like his so very little help available. He has a tall Rollator to help him walk. I would love to hear from anyone who has experience of particularly Pisa syndrome
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Nut-Meg
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I was diagnosed 22 years ago and pisa syndrome and camptocormia about 12 or more years.I have found that padding the left side helps but isnt much good when eating at a dining table or in restaurant etc. I am worse when I am tired or under medicated.It takes significant effort to not just fall off the chair.
I went to see a neurophysiotherapist a couple of years ago and her first hour long appointment helped me understand that how i was actually sitting /standing was not how i felt it '
I am very lucky in being able to see her privately about once or twice a month which in addition to doing her exercises daily. Gradually has improved my posture and relieved my back pain . i use nordic poles to help me walk as they are height adjustable . I cant walk very far.
£75 an hour is a lot of money for most people but her specialist knowledge has made such a difference . Excercise is so important too. I have tried lots of different exercise groups most of which eventually close as funding stops!! they are usually good and help socially as well
I don 't know if this has been of any use as specialist regular physio is not available on NHS
Thank you so much for your reply. My husband has been attending private Neuro Physiotherapy since summer 2020 as there was no NHS physio. They have helped him a great deal over the past four years, but feel now that they are just managing to help maintain his mobility which has become poorer of late and he is having a number of falls. He has just started seeing a professor of Neurology at The National Hospital for Nervous diseases in London and they are giving him weekly physio. The biggest challenge like you say is sitting upright to eat. We have tried all sorts of of cushions and find it essential to have a chair with arms. I also have to remind him to sit up.
It is a very difficult issue that little seems to be known about.
i FIRST learned about Pisa while at an optician's (eyn d comes over periodically ad pulls me ito a upright possitio e doctor) appointment.
I wasn't referred to therapy. I was fitted with prism lenses, and what a blessing... I could read words on my text messages again. I am definatly weaker on my left side The pillow stuffed between me and the chair arm helps some, but my husband come over periodically and pulls me into an upright position.
He was on Ropinerole when the Pisa Syndrome started which was unfortunately when COVID hit. So he didn’t see anyone for 6 months and when he finally saw the Parkinson’s nurse he told him to come of it, but I think by then it was too late. I do think it may have caused it?
Here is a relevant Pisa syndrome (PS) related quote from the link :
' Levodopa/carbidopa, levodopa/benserazide, levodopa/carbidopa/entacapone, pergolide, and pramipexole may cause PS, whereas no reports for ropinirole have been described. Here, we describe a case of a patient with PD who developed severe and reversible PS due to ropinirole intake. '
My dad also leaned forward and to the side from his late 80s until he died in his early 90s. He had a recliner which would lean him back to watch TV as long as it was mounted a bit high on the wall. He also liked to sleep in that chair and would straighten when tipped back . When he lay down flat on a bed he would also straighten, so it didn't seem that he was irreversibly bent. He still leaned to his left very far in the recliner, so we propped him with a long teardrop shaped pillow positioned upright on his side. I put a sturdy side table by that side of his chair and jammed other pillows around it to push him further up. He took almost all his meals in that chair.
In his later years, Dad would get up in the night and walk around in a trance-like state. When he was like that, he could do things he ordinarily couldn't do, and one thing he was observed to do was straighten up while walking around without his walker. I believe PWP have more of their own dopamine at night, so it's possible this natural dopamine enabled him to stand up? I did see some articles that say Pisa syndrome may result from dopamine medication adjustments but can't say we had success with dosing changes. He did have high-dose B1 in his last year, which seemed to alleviate many of his Parkinson's symptoms and enabled us to reduce his l-dopa. With B1, he had fewer bouts of dyskinesia but the Pisa syndrome remained. Perhaps if it was addressed earlier in its progression, his posture might have improved.
What I found that might have helped if we'd followed through:
1. The Calibrace+ back brace was developed specifically for Parkinson's posture issues. Maybe people here have experience with it? It must be expensive because the few sales outlets online never list the price. It may be covered by insurance. The manufacturer is called Abililife, but the website I found (calibraceplus.square.site/ ) is not as informative as I'd like. There are a lot of back braces on the market, and perhaps another posture correcting brace would also work? Something to ask his doctor about?
2. Hypnosis. Seeing my dad stand up straight while in a trance made me think perhaps his ability to overcome this symptom might be accessible through hypnosis. However, because of his dementia and delusions, hypnosis seemed out of the question for him. It would have been a long shot anyway. Here's a case study of hypnosis used to alleviate PD symptoms: europepmc.org/article/PMC/3... .
Sorry I don't have direct experience to relate of my dad improving his Pisa syndrome. I'd recommend you do a PubMed search, because there are several articles about it that might suggest ways to improve it.
My mother definitely must have PISA syndrome! She leans to the right. We prop her up, but she immediately leans over again. She’s continuously in her wheelchair at all times so the only reason she’s not falling over! She did fall out of her bed the other day, though. She lives in a long-term care facility. I did the PubMed search, but the article is so long, and so filled with jargon! Can you tell me how I could possibly get my mother’s doctor to look at reducing or adding whatever medication is necessary?
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