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Topic Other types of PD Go to previous topic Go to next topic Go to higher level

By mylove On 2017.06.16 13:17
Is there anyone else here with ParkinsonISM, or Young Onset still, vs more traditional elderly onset PD?

Al and Lurking, you guys are both on the YOPD side, right?

I have great difficulty in finding ways to relate and to understand where we are and where we should be. I'm not sure if this is because his was caused by heavy metal poisoning, but it's just so DIFFERENT. He has no masking, no falling, no postural instability, very little tremor, no dementia or loss of cognition, and still has a sense of smell. If it weren't for the stiffness, apathy, pain, and fatigue he'd still be at the top of his game. Agonists worked great for him with no terrible side effects, and things have progressed very slowly for fifteen years or so. And it's not due to exercise, great eating, magic vitamins or positive thinking, either!

Is this just the difference between traditional PD and YOPD?

By LOHENGR1N On 2017.06.16 16:58
ML, Yes I am young onset (age 33) although I'm far from that now (turning 65 this year). I threw the where I should be book out years ago. I guess I look at it as where I am is where I should be. The way the medical field looks at the difference is if the cause is known or strongly suspected then it is classified as Parkinsonism by definition. Parkinson's Disease is idiopathic or from an unknown cause. Mine is termed Manganese intoxication or Manganese poisoning. It seems YOPD progresses slower than traditional PD from all I've read. That said it is progressive like traditional P.D. also bearing on progression is if We stay away or try to avoid exposure to the heavy metals that poison us. Less exposure while we will still progress at least we are not still absorbing that poison which would speed up the progression. Hope this helps

By mylove On 2017.06.16 19:50
His is manganese, too (amidst a whole toxic stew of stuff). And you guys are of an age with around the same diagnosis interval. I guess the best answer is that it's just very unique from person to person.

I'm in a position where we need to make some decisions about major things - bucket list items, what job to take, whether to look at downsizing, whether to buy him a car - things of those magnitude. And I guess I don't so much need a playbook as a crystal ball. If I could look at others and see a general trend of "in X years typically things get worse", I could make some of those decisions, but because he looks SO different, it's hard to forecast anything. Sigh. Guess we shall muddle on!

And good news - by upping his pills, he's just gotten back from hitting a bucket of balls at the driving range. Go figure!

By lurkingforacure On 2017.06.16 22:07
I'm with Al, there is no "should be" with PD-you are where you are. We are young onset and progressed slowly for several years (also without exercising, I might add, despite my nagging!) but have experienced several precipitous declines in recent years to where we now deal with hallucinations and delusions on a daily, even hourly basis, have difficulty with balance, drop glasses, dishes, etc., forget things, cannot drive, cannot understand what he is saying, and on and on. I never would have imagined we would be at this point, and yet here we are.

I don't know that you can do much planning with PD, except to plan for eventually needing a wheelchair, grab bars, shower chair, etc. It is depressing, but the only thing "plannable" thing with PD is that it progresses (and you don't know in what way or when). I think all you can do is be flexible: if your husband is lucky enough to be having a good day, do as much as you can and make the most of it.

By mylove On 2017.06.17 09:30
How far in is your husband? I'm trying to remember - I know you've been here as long as I have.

One thing I've decided is just what you said - enjoy it while we can. The MDS keeps stressing that the eventual burnout of Sinemet is a fallacy, so we should be upping the meds as needed to keep his quality of life as good as we can as long as we can. So...up we go another pill, beginning this week. So be it. We are getting all the little projects done now that he wants to participate in, and doing as many activities as we can (fishing, concerts, etc.).

I keep thinking we need to do the "bucket list trips"....but with the apathy that is his primary symptom, he doesn't have a burning desire to do ANYTHING! Ha! How's that for the universe serving up some irony? :)

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