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Topic A Typical Parkinson ism with frozen gait Go to previous topic Go to next topic Go to higher level

By meargle On 2010.03.17 18:34
This is what my husband was finally diagnosed with after 2 trips to MUSC and then to Duke. First they said he has PSP; but I disagreed because he didn't have all the symptoms, so I went to Duke for a second opinion. After testing, they agreed he did not have PSP, but A Typical Parkinson ism with frozen gait. That was 2 years ago. He does not have the trembling or shakes; but he can't walk by himself, he is mostly wheel chair bound.
Have any of you had any experience with this type of parkinson?
I could sure use some insight from someone who has been there. Mary

By shakydog On 2010.03.17 22:22
Hi and welcome. Take a deep breath.

Did your husband do much welding or work on a farm? Not that it matters, but it's nice to put a name to the particular illness. The end is the same, try a couple of the meds and see if they help.

One of them will help him move.

Breathe. Relax. Take care of yourself.

By LOHENGR1N On 2010.03.18 00:15
Hi meargle, welcome to the forum. Atypical Parkinsonism with frozen gait. Well I'll tell You they sure come up with some unique names for diagnosis don't they? Years ago there was Parkinson's Disease, then Parkinson's Syndrome was added then Parkinson's plus now it seems they've branched off into so many directions.

Basically Parkinson's Disease is defined as idiopathic or of unknown origin (cause). Parkinson's Syndrome was when they were pretty sure of a cause, like as My Pal Shakydog asked if your husband was a welder? With welding manganese poisoning is suspected of causing the dopamine producing cells to die off causing Parkinson's. Starting a domino effect as it is progressive, once the cells start to die they continue to die off.

Reading up a bit online it looks as though Atypical Parkinsonism w/frozen gait would fit into a Parkinson's plus category, however I'm not a Neurologist, Movement disorder specialist or even a Doctor. There are several caregivers here who have loved one's in this category Who might be able to better help You.

As Shakydog said not that the category matters the result is the same and the course of the diseases are about the same. However as We know each is different and progression and side effects and symptoms vary with everyone. The good news is they have many more medicines available now then years ago and many are for early stages and along the lines of trying to slow progression. It's a rough roller coaster ride in store for you both so keep posting and asking questions We're all here to help in any way we can. Take care, best of luck and hang in there.

By karolinakitty On 2010.03.18 20:25
Meargle, First..Welcome to the forum...

We too just recently went to MUSC. saw an intern and then Bachman. I was very pleased with all they did and how they took the time to assess my PDer.
Over a year ago we saw a neuro doc in Florence with straight PD as a diagnosis. After some problems with his staff, and the treatment we were getting i asked to be referred to MUSC, i heard great things from others about it. They said he had PD plus, and more specific, DLB. Although, he did state he fits under the umbrella of all the PD plus syndromes. Mine has very few tremors, yet freezes, he doesn't shuffle, per say, but has an "off" gait. They said while he had all the symptoms of all the pd plus syndromes he had not all the symptoms of one.
I read up on all the pluses and felt the doc was right on the call of PD plus. He has an eye thing, where his eyes won't go up just even and down, this is part of one plus. ....... I could go on and on about the different sypmtoms but i don't want to lose track of my point.
My main point is that I'll take what they say, weigh it out and move on. I don't think a particular diagnosis is so important as getting the right meds to help the sypmtoms he has. If he has trouble freezing, ask the doc about amantadine. This has helped mine. They switched him from, requip to requipXL, which is working great for now. Put him on Aricept for he has slight dementia. Melatonin for aiding in him getting to sleep and that has also has been a Godsend. He sleeps at least 5 hours a night and that is awesome for him.
From what i read, certain plus syndrome patients cannot take Sinemet or lev/dopa. So check up on that. It has counter effects.
Mine had severe brain trauma about 12 years ago. Bachman said that he felt that contributed to the DLB. He also in the past had troubles with sleep, the REM disorder and that's why he leaned toward the DLB also.
In the search area on the forum, check out earlier posts on any topic, it will help you a great deal on reading up on others posts.
Living here in rural SC, puts us in the sticks category and if too are here in the sticks then you know how hard it is to find someone going through what you are and getting answers to the many questions that come with PD. Even finding a doctor who really knows about PD was a year plus adventure. This forum has answered soooooooo many of my questions about soooooooo many different things.
Each PDr is different and you kinda just have to weigh the differences and do your own assessment with your pdr.....
My email is listed if you want to compare notes on MUSC, or anything else. Just click on my name and my profile comes up, with my email...just subject it caregiver forum........

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