Is the PD that appears as "rigid or non shaky" type worse than the shaky one? I have read this and heard it said. If so why is it worse?

[Max2]

[Paul_Dineen]

My personal (non-expert) opinion: the shaky one (Michael J. Fox) is worse than the stiff one (Muhammad Ali).

I have some dyskinesia now, but I'm continuing to see my neurologist to get the right blend of meds. We're reducing the Levadopa to reduce the dyskinesia (I'm already taking Amantadine for that, too.) We're also both adding other meds and increasing the dosage of non-Dyskinesia-causing PD meds. The dyskinesia is a Royal Pain in the Anatomy! The almost non-stop wiggling and squirming is pretty annoying, and I think it's a significant contributor to neck pain that I've had for weeks.

And my Dyskinesia is relatively mild, I suppose. A few months ago, I saw a man in a store whose whole body was moving everything all the time. It was a lot like he was dancing, but couldn't ever stop it. I expect that that would be quite annoying and frustrating, and would make it hard to do ordinary, simple things. Also hard to get a job when the place you're applying to sees that. I don't know that his cause was PD, but if it's the same thing with a different cause then ... it's the same thing.

[Max2 in reply to Paul_Dineen]

Thank you for taking time to answer my question. Most people seem to understand the problem of shakiness and on the information given - it does seem odd to me that shaky is worse. But the occasions when I know such a distinction has been made finding rigidity worse have all involved neurologista. On one occasion the patient (not me) was given the bad news at diagnosis and told his rigid illness was in fact worse than the other. Why - what makes it worse?

[Paul_Dineen]

> [...] finding rigidity worse have all involved neurologista. On one occasion the patient (not me) was given the bad news at diagnosis and told his rigid illness was in fact worse than the other. Why - what makes it worse?

The short answer: I don't know enough about PD to answer that.

Note: my personal experience does not cause me to assume that my view of which is worse applies to most others as well.

I googled for the word "neurologista" from your post to see what that is. The 1st page of results was full of pages in Portuguese. So I went to Google Translate. It translated Portuguese "neurologista" into English "neurologist". That seemed like a dead end, and I stopped there.

Have you seen the movie "Awakenings"? That has a lot of patients who are so stiff that they virtually never move. They're like statues. Completely debilitating. Robin Williams' character is a doctor who tries to help these patients that everyone has given up on trying to improve. He discovers that Levadopa makes them come back to life again: out of their wheelchairs and walking, talking again, etc. It's wondrous. Unfortunately, the benefit wears off before long, and the patients go back to the way they were before. As I recall, that movie was based on true events.

If what you hear about stiffness being worse is the kind of stiffness portrayed in the movie then, yes, stiffness is definitely worse compared to the Dyskinesia I know (although, I can't speak for that man I saw in the store). But, I'm just guessing here that that's what's meant. FAIK, that doesn't happen any more because of breakthroughs, but that's also a guess.

[Hikoi in reply to Paul_Dineen]

Awakenings was about giving L Dopa without the carrier drug (carbidopa) so very high doses of dopamine were given, they received up to 1000mg a day. No wonder the patients had problems tolerating it. That and being 'woken up' after 40 years in an almost sleep state.

Paul you may be interested that the book by the same name was written by Oliver Sacks who is still alive. I have just found a number of videos with him being interviewed so thanks for this prompt - They look interesting.

[Max2]

Thanks. I think both are pretty awful but had no understanding of the comment made to a friend's brother.

[srarndt]

It strikes me that most of us find that our P.D. is neither "one size fits all) nor the same day by day. So when today's symptom du jour arrive your answer may well be different than the day before. Also, one must look at if falling, food swallowing, dementia, and/or aspiration of liquids are involved beyond the rigidity vs tremor issues. You know the stuff that actually starts to kill us!

[christine66]

hi just joined this site as my dad has PD..he has the shaky one which he says makes him feel really tired all the time..as his feels his body is never at rest. He has to eat from a spoon now and have a "baby style" beaker. As srarndt said it must be a day to day thing as my dad has good days and bad ones, xx

[Parkersclimb]

I tend to agree that both forms of PD are bad. My husband has PD, diagnosed in 2006 but symptoms probably started in 2003-04. He is in the gym every day and I can tell you the physical activity is the most helpful of anything for his rigid type. He also rides a bicycle, plays tennis and golf. Staying active on his terms gives the most benefit of anything he's tried. He is on low dose Sinemet and Sinemet CR.

This past July, we climbed Mt. Kilimanjaro as a fundraiser - of six climbers he was the most physically prepared and successful! A constant physical regimen is our only explanation!

[Anemone]

Worse? Which ever one one has, is what I think. To be able to walk for more than a bit, or simply stand up without leaning against something, much less climb Mt. Kilimanjaro--that sounds like heaven. So we each have our own battle. It's hard to compare. I have read that the shaky PD can be helped more by DBS than the balance / gait type, which I have. Bless each and every one of us and those that live with us--we need it, but so does everyone.

[shasha in reply to Anemone]

i happen to agree that it would be so wonderful to be able to walk again - and not have to rely on my darling husband for everything from dressing and washing and going to the loo !!

[goose63058]

I am stiff and ridged I have no tremmors, I did in the beginning, leg tremmors. CoQ10 1200 mg per day and mirapex and the tremmors stpoppesd and haven't been back. I had DBS in June 2010, I mostly leave my batteries off. When I have a serious bout of dyskineisia, I turn on my battaries. that stops iot with in minutes. It feels like bolts of lightening are coming out of mmy fingers and the room spins at first. When it goes away so does my movement. My balance is off, I can]t walk with out looking like drunk, I stand for short periods of time only to feel pain in my back and neck. i HAVE A REAL HARD TIME WATCHING "Awakenings" . t makes me cry like there's no hope with this disease. Michael J. Fox is an insparation. his movement is from the carb/levo.

[Parkiewife]

My husband has the rigidity type. Had DBS over twelve years ago! What a difference this has made for him! Has made movement so much better.