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The drugs DO work...

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Grey Area
The drugs DO work...

I posted in the newly diagnosed forum a few months ago and asked if the treatments actually restored function or just slowed down decline.

Glad to report it's the former!

My original neuro was of the "save the drugs for later" mentality. My opinion was more "Stuff you, give me my drugs you git." Fortunately, I've moved neuros and I'm now under Sheffield Hallam (Drs. Richard Grunewald and Ronan O'Malley, may whatever gods you worship bless you) who are more in line with my thoughts.

As a result I'm now not just on the Azilect (which seemed to do almost nothing) but also Half Sinemet CR.

Wonderful stuff.

When I was just on the Azilect I'd say I was at about 80% efficiency. Major problems with walking, handwriting destroyed, no swing in my right arm when walking, shoulder pain and what I call "fine control tremors" - I only got them when trying to do something intricate, like hold a flower gently. Also the finger-taps test just resulted in my hand going into a spasm if I tried it at any sort of appreciable speed - same effect really ruined my attempts to learn guitar too.

On the Sinemet, even when not on the full dose (I built up at one tablet a day for a week, then two for a week, then the full three) I noticed quite frankly HUGE improvement - I'd say I'm somewhere at 95% now. Handwriting returned, shoulder pain a distant memory, finger taps and bass playing actually possible, fine control tremors hardly noticeable.

Walking still not 100%. I seem to have swapped my flappy foot for a tension/rigidity in my right leg, meaning walking becomes a real effort after not very far at all - especially uphill. The back of my thigh seems like I'm constantly clenching it (I'm not) and the buildup during walking is almost as if I'd done major exercise and getting a lactic acid buildup type feeling. I haven't frozen yet but it feels like I may at any time.

Side effects. I have some unconscious movement in my right hand, particularly the thumb...sort of fidgety...but this was actually one of my original symptoms, which disappeared as my other symptoms worsened, so I'm kind of greeting it like the return of an old friend.

Also - itchy feet! Not in the "I want to travel" sense but in the very real "need to scratch until the skin is raw" sense. It's accompanied by dry and flaky skin but as always this may not actually be related to the Parkinson's or the meds...going to see doc to see if it's something else.

That's about it - no nausea, compulsion, hallucinations or anything like that. I even find I can be quite lax with my timings (I even missed one lunchtime dose altogether) and not be too adversely affected.

They're adding in an agonist (Ropinirole) which they say may help further.

I'm posting this because I couldn't find a lot of info when first diagnosed about the immediate prognosis (Basically, I know it gets worse, but can it get better BEFORE it gets worse?). I thought it might give some comfort to those recently diagnosed and wondering what the future may hold.

turnip

i couldnt agree more

what do we want? levodopa!

when do we want it? now!

Martini

Hello,

Be careful with Ropinirole.  i took it for quite a few years.  Read as much as you can about Dopamine Agonists and the possible side effects.  I think there has been a fair amount of discussion about this on the forum.

I became an obsessive insomniac and my character changed enough for some people not to like me anymore and to break off contact.

Peter.

 

Kittens3

im with you (grey area and turnip) in this ....drugs have given me back full function ,able to do what i want when i want .

im on sinemet plus  3 times aday ,sinemet cr at night and 24 mg requip. and before everyone starts shouting about too higher dose and side effects ,for me this was the dose i needed for it to work and i have no side effects other than nausea as i increased ... all gone now .

yes im aware of side effects and friends and family keeping an eye out but they all say im back to being me .and thats where i wanted to be .so im happy to take the drugs

Wildrover

Hi Grey area, just been doing a search through the forum and just wondering how your getting on now. I am now in a similar position as you were. Been on Rasagaline for 5 weeks now and it has made no difference what so ever, just waiting for a neuro appointment to see whats next. I really do need some relief from my symptons which are similar to what yours were. Main problem is muscle rigidity specifically in my neck and back, other problems aswell but thats the main ones for me.

Did your initial euphoria with your meds last? I am hoping i get the same experience