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Superdecooper

New guy here - a journey I'd like to avoid

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Hi LAD,

Oh you've got that right. I think if it's one thing this episode of "My interesting Life continues" has taught me, it's that daily exercise is a must. 

Just think of all those great TV shows on my DVR that will have no one to watch them.. :wacko:

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Superdecooper,

Sounds like a good plan. I have renamed my tremors in the colder months to "shremors" kind of a cross between a shiver and tremor. When I shiver my tremor is amplified and uncontrollable. My MDS doc likes the term so much she has started to ask me how the shremors have been since I last saw her.

Sounds like you have a doctor you like, and that is half the battle.

Keep up the positive attitude. It helps

Blessings

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Hey gang,

The way the MDS explained my health was like this: I have a resting tremor and other symptoms that could be caused by parkinson's, and he'd like to rule out other causes and see if a lack of dopamine is the culprit. In addition, my brain also may be reacting to the symptoms by making them worse. Either way, they are both out of my conscious control.

Either way that sucks: I'd really just like my hand to stop shaking, my signature and handwriting to turn back to normal, and get a good nights sleep without a bunch of sweating and intense dreams. My wife complained about my lack of smell  (I put up an air freshner) and kicking in my sleep, (I just moved over in the bed so she wouldn't feel it anymore) and painful, super tight muscles (just go swimming and get some PT.)

See, a perfect plan to deal with these problems with ignorance, meds and work arounds, and just keep on getting by...

So, Maybe this will all just go away by itself...

-S

Edited by Superdecooper

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Only way I know of to see if a lack of dopamine is the culprit is to do a trial run with levodopa.  Can't recall if I mentioned this on your thread before, but when I started taking C/L the effect was virtually instantaneous.  By the second dose I had noticable relief from the tremors.  When I got back in to see my MDS 7 weeks later (would have been less but I had a business trip force me to push it out) she didn't hesitate anymore with the Dx.

 

Good luck with getting real answers and relief.

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The doc wants to wait until after the Datscan. I’m resisting the temptation of buying some generic  levadopa from GNC. 

 

 

.....resistance is futile — the Borg

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Hi Super - the only time I get tremors is when I am waking up and they are getting more pronounced lately - more like flapping hands and arms, and sometimes my legs go too. I often feel shakey inside but these are not visible - not sure if they are internal tremors. My PD is mostly stiffness and rigidity.

after 2 years I am starting to accept my diagnosis and move forward - there is joy to be found in each day! All the best to you - twitch 

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Thanks Twitch,

I was just wondering how it is even possible to have a tremor when you are barely awake. This has been happening to me, inconsistently, for about a month, now. But i thought it was just my imagination. 

I thought the night-time fun and games would be limited to me hardly geting more than 4 or 5 hours of sleep a night, but no, I see there's more!

-S

Edited by Superdecooper

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Before starting on meds DW said I would tremor in my sleep.  Not much, and she'd only notice if I had an arm draped over her.  In fact she didn't really connect those dots until later.  But since the meds that's gone away.

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3 hours ago, Superdecooper said:

Hey Gang,

Just curious - does anyone get tremors just as they are waking from sleep?

-S

My husband gets awakening tremors a lot. They are real strong, lasting briefly, and a quick return to normal. He also gets them if he gets a chill before getting in the shower.

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Don’t know if I get shakes at night while sleeping, but they are bad when I wake up. What I do get at night is strong “twitches” as I fall asleep from time to time. I’ve been told by one neuro that this isn’t typical of PD and my MDS didn’t comment on it at all, so this may be totally unrelated to my PD and just my own weird thing!

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Hey Mellisab,

thats what sparked this question from me. I was trying to fall asleep by quieting my mind and then my hand and arm started tremors. Later as I awoke, they started again. Not too strong, but enough to draw my attention. 

Edited by Superdecooper

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Another question..

I've been on pain med (narco, muscle relaxer and arthritis meds) for the last three years for ongoing problems with my lumbar discs, and SI joint.

Is there a chance that more consistent exercize plus PD meds (Siniment or an antagonist) would lessen the chronic pain I'm in and then I'd be able to cut back on the narcotics?

Does anyone have an experience with this?

-S

Edited by Superdecooper

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On ‎11‎/‎23‎/‎2017 at 8:18 AM, Melissab said:

Don’t know if I get shakes at night while sleeping, but they are bad when I wake up. What I do get at night is strong “twitches” as I fall asleep from time to time. I’ve been told by one neuro that this isn’t typical of PD and my MDS didn’t comment on it at all, so this may be totally unrelated to my PD and just my own weird thing!

Sounds like you are describing myoclonic jerks.  People without PD can get them, usually right before falling asleep, but they are more prevalent in PWP.  PWP may even get them during other times of the day when fully awake-like an arm or leg will "jump".  Another forum member has mentioned that his myoclonic jerks are reduced with a certain brand of levodopa.

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Hi Gang,

I had the Datscan test today. Got the images, got the radiologist report. I have an idea what it all means, but I'm going to see my MDS on Wednesday. Chance of formally joining the PD club just went up.

-S

 

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3 hours ago, Superdecooper said:

Hi Gang,

I had the Datscan test today. Got the images, got the radiologist report. I have an idea what it all means, but I'm going to see my MDS on Wednesday. Chance of formally joining the PD club just went up.

-S

 

You will be ok. It's a process..you will get there....life will be different but it can still be great. Be present...don't worry about things that haven't happened or will happen. Your mindset is a big part of the fight and it's a fight. If you don't exercise regularly-get started. That's just as important as medicine! 

 

LAD

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On 11/26/2017 at 10:27 AM, Peace said:

Sounds like you are describing myoclonic jerks.  People without PD can get them, usually right before falling asleep, but they are more prevalent in PWP.  PWP may even get them during other times of the day when fully awake-like an arm or leg will "jump".  Another forum member has mentioned that his myoclonic jerks are reduced with a certain brand of levodopa.

What does PWP mean? I’m sorry!

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50 minutes ago, Melissab said:

What does PWP mean? I’m sorry!

People with Parkinson's 

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8 hours ago, LAD said:

You will be ok. It's a process..you will get there....life will be different but it can still be great. Be present...don't worry about things that haven't happened or will happen. Your mindset is a big part of the fight and it's a fight. If you don't exercise regularly-get started. That's just as important as medicine! 

 

LAD

One important correction:  exercise is MUCH more important than medicine.  PD medicine only masks the symptoms of PD.  Exercise is the only thing shown to slow the progression of PD.  Move it or lose it!

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Strangely enough, I'm taking this all in stride today. I guess I'm waiting for the MDS visit on Wednesday to see what comes next. In the meantime, I'm going to the gym to go swimming.

The Datscan results, which show a lovely comma and dot pattern, came with the following report from the radiologist:


Findings

Images demonstrate normal tracer activity in the right caudate. Minimally decreased tracer activity in the left
sided caudate. There is moderately decreased tracer activity in bilateral putamen.

Impression

Variable degree of decreased tracer activity in the left sided caudate and bilateral putamen as described above in
detail is consistent with a deficit in dopaminergic transmission, which indicates a parkinsonian syndrome, but
cannot accurately differentiate Parkinson's Disease from multiple system atrophy or progressive supranuclear palsy.

Clinical correlation is advised.

Edited by Superdecooper

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Looks like I won’t be avoiding this journey, after all.

MDS says I’m in the very early stages and he will start me on Azilect in the coming weeks. Hopefully, it will control symptoms and keep them from progressing.

(Yes, I’m already exercising.)

-S

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