Tremor dominant parkies vs Gait and Balance parkies.

[Joanne_Joyce]

As I read the debates about exercise and about medications I am beginning to wonder if our opinions ( and rather strong ones) are related to which category of PD we have. I can well imagine someone whose main symptom is a tremor can live fairly comfortably without medication and may not even benefit from exercise more than anyone without PD. But those of us with gait and balance symptoms are more likely to depend on medication to be able to walk and maybe we need the exercise more too improve our gait. I am very grateful for my medication (side effects and all) and I'm very grateful for the observable benefits I get from exercise. I wonder how others feel about this.

[Hidden]

I am tremor dominant. Found no observable benefit through exercise or diet.

[Joanne_Joyce in reply to Hidden]

What about medication?

[Hidden in reply to Joanne_Joyce]

not choosing to medicate at present

[Hidden]

A good question.

[Hidden]

I have no tremor but have gait and balance symptoms along with stiffness in my right hand and arm along with pain in that arm and hand and trouble with my hand writing. My meds relieve all of them. I often wonder how the meds relieve the pain. Anyone have the same affect. I could not function with out my meds.

Now i understand how some PWP can delay meds. My right arm at rest layed across my chest with my right hand near my left shoulder this was even while i walked and i was unaware of it.

[steph02 in reply to Hidden]

what meds are you on I too have no tremour but terrible gait and freezing problems. but none of the weds seems to work on me. so I don't take any.

I seem to get along ok though i have been more or less the same for the past 5 years I was diagnosed in 2008.

[Hidden in reply to steph02]

I take Sinemet (CARBIDOPA/LEVODOPA) 25/100 2 tabs every 4 hours, 1 azilect in the morning and 1 6mg ropinorole (Requip) at night for restless leg.

I have used requip alone 2 8mg a day but had gambling problem.

Good luck

[steph02]

yes Have tried all thee drugs but with no effect I found that the only one with no side effects was the azilect but it didn't help either'. So i am still looking

for something that may help

[Joanne_Joyce in reply to steph02]

Steve, is there a possibility that your gait and freezing problems are not as a result of PD? I'm asking because it seems very unusual that your symptoms don't respond to PD meds and that you have been able to go without meds for 8 years and the symptoms aren't getting worse.

[steph02 in reply to Joanne_Joyce]

yes in 2014 my neurologist said that I probably psp because a slight hesitation in upward glaze maneuvers but this was

atypical psp I am not sure that he is right. basically they don't know, I guess everyone is different

[etterus]

I am PIGD 13 years duration. Last year I underwent DBS which has given me much improved motor response and even helped my chief problem of nocturnal "urinegency". It was severe enough that I was up 5x pm and crawling to the bathroom and back taking 5mg of ambien to fall back asleep. Recently I tried to decrease my use of c-l dopa and klonazapam at night with poor results. I still take 25-100s 10x a day and .5 klonazapam 2-3x a night to control my dystonia feet.

I ride my recumbent trike as often as possible and hit the weight machines at the gym 2-3x weekly. I also walk with Nordic poles and stretch frequently. I have never exhibited rigidity... I'm am so fortunate to be hypotonic except for my feet.

[Hidden]

I am still looking.

[Hikoi]

Interesting Joan, my understanding has always been that those with tremor respond better to medication than those with Stiffness type PD. tremor is considered one of the hardest things to treat and it doesn't make for a comfortable life. See Andrew's untreated tremor in this video.

youtu.be/uBh2LxTW0s0(Not working as expected?)

[Hidden in reply to Hikoi]

thank you. I can only hope my tremor do not reach that level

[Joanne_Joyce in reply to Hidden]

I hope not too Roy.

[Hikoi in reply to Hidden]

Roy, Andrew has a very aggressive tremor, it was uncontrollable at your stage. So quite different to you. Thank goodness DBS was available to him. As we say we are all different.

This video has gone viral with over 2 million hits and turns up on many websites now.