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miracleseeker

Pisa Syndrome

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Does your loved one have trouble standing or sitting straight.  My mom has been leaning to the right constantly losing her balance all the time.  She even does this on the toilet which makes it very dangerous.    I've asked Dr. Okun before about this and he said he's never heard of it even though I've seen articles on this on the web.  I remember the former pope had it too.

 

 

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My wife has started holding her left arm straight out behind her with her palm facing up, then she leans to the right. I have also noticed her leaning to the right when she is walking. It is related to dyskinesias according to the neurologist.

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Really?  That's interesting because my mom was taking Amantadine last month for dyskinesia of the head which it did help but the leaning got worse.   Is your wife still leaning?  What did her doctor do for it?

I thought she isn't medicated enough so it's a dopamine difficient thing.

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The neurologist has not done anything since she is looking at DBS and has an evaluation appointment next month. She is also taking amantadine and it really helped, but she did not have dyskinesias at the time. Everyone is different to some extent in this disease which makes things difficult. Her dyskinesias include exaggerated movements, pursed lips, tapping feet, the arm held back, etc. You mother's leaning may also be due to something else such as an inner ear problem. Bits of calcium build up and then sometimes break off and move around the cilia and can really mess up a person. That usually goes away in time.

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Her back is curved now too so I think it's a posture thing.  She sleeps to her right also and I think overtime she just got stuck like that.

 

Did the amantadine make her weak?  My mom had no leg strength while she was on it so combined with the leaning I just stopped it all together. 

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Thanks Christie.  I wish this was in plain English though.  :-P    I actually look more like that man than my mom does because I have Scoilosis.   I'll have to re-read this to fully understand the findings. 

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Miracleseeker, go straight to the "discussion" of the article; the language of this section is plain enough.

 

This is another article on Pisa syndrome in PD. Basically, a report of two elderly patients with PD who developed Pisa syndrome (axial end-of-dose dystonia, as described in the article) as a symptom of motor fluctuations. In both cases, significant improvement of Pisa syndrome was noted after slow increase of levodopa.

 

http://www.orthochina.org/uploadimage/20080306232711.pdf

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Interesting article. It fits with the dystonia which is my wife's biggest problem. The muscle atrophy could become a problem and

lead to pain down the road.

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Okay, you are opening my eyes to more areas of discussion. My husband started having PD symptoms 14 years ago. He is totally unmedicated (won't see a doctor) and his symptoms are slowly getting worse. I had never heard of the Pisa syndrome, but it perfectly describes what he does. He won't sit at the table for meals, but sits on the couch. I prop pillows on his right side to help him sit up straighter, but now he leans to the right and so far forward that I think he's going to fall on the floor. He has started asking me to feed him because food starts falling out of his bowl, so I push him up with one hand and feed him with the other. I bet I look comical at best.

 

One last thing, He has developed a nervous giggle. He has never been one to show his feelings (we've been married 50 years) so now it seems really strange to hear him giggle or cry over almost everything, including TV commercials.

 

People outside our PD community can't possibly understand. Thanks for listening.

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Linda,  

Run a google on camptocormia, there are some sites that have pictures on the forward lean, is this what you are describing, my dh has that with the pisa syndrome, (also called the lewy lean),

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hi,

my husband has had PD for over four years. He was leaning so far to the right which is his weak side that i insisted he use a cane when he walks. When he does he walks much better and doesn't lean so much. also when he doesn't use the cane he bounces as he is moving forward.

his nurologist is very very conservative with meds. Husband is only taking leva/dopa and nothing else. 

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