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Doing More to Control my Parkinsonís

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Old 06-25-2019, 05:06 PM   #1
chriswelber
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Default Doing More to Control my Parkinsonís

My wife says my Parkinsonís has declined in the last 6 months. More tremors, tired more and generally worse. My Parkinsonís doctor did not say much at my last examination or that I was worse and left my meds at 3 carbo/Levo 25/ 100 3x. I also have Crohns and high cholesterol.

Iím wondering if folks could share what they do diet, exercise and holistic wise to help slow down the disease.

Thanks


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Old 06-25-2019, 07:40 PM   #2
johnt
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Chris,

Welcome to the forum.

I'm 14 years post diagnosis. Exercise is important. I try to walk 5 miles per day at about 4 mph, but don't worry if I do less. My diet is normal. I make a small effort not to eat protein a hour either side of a dose.

My daily drug regimen is 5x75mg Stalevo, 8mg ropinirole CR, 1 mg rasagiline. I "dynamically dose" the Stalevo: rather than take them at fixed times, I take them as needed or, to be more precise, at a time so that they kick in just as the previous dose wears off.

I think it is important to really understand your drugs. The key concepts are pharmacokinetics, what the body does to the drug, and pharmacodynamics, what the drug does to the body.

i'd encourage you to read the Science of Parkinson's blog by Simon Stott. He explains all things PD in an easy to understand way.

The Science of Parkinson's | Plain English information about the research being conducted on Parkinson's

John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 06-26-2019, 10:33 PM   #3
chriswelber
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Thanks!


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Old 06-30-2019, 11:04 AM   #4
soccertese
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Quote:
Originally Posted by chriswelber View Post
My wife says my Parkinsonís has declined in the last 6 months. More tremors, tired more and generally worse. My Parkinsonís doctor did not say much at my last examination or that I was worse and left my meds at 3 carbo/Levo 25/ 100 3x. I also have Crohns and high cholesterol.

Iím wondering if folks could share what they do diet, exercise and holistic wise to help slow down the disease.

Thanks


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i'm confused by your dosage, is it 300mg of 25/100 C/L three times a day? when were your diagnosed?
there's been a lot of studies where pd'ers have possibly reduced their pd symptoms via vigorous exercise which has made programs like ROCK STEADY boxing so popular. i think getting into exercise programs for pd'ers is the most important thing you can do to manage your pd. first you have other pd'ers to compare notes with, your're getting a great social experience which motivates you to "fight" your pd more vigorously and your're getting the exercise benefit which helps you reduce the risk of heart disease, alzheimers, and it might slow down your pd progression. as far as supplements i take a multivitamin, i've tried almost every supplement mentioned here except nicotine and received no benefit, it there was such a supplement we'd all know about it. i haven't tried mediation,etc. exercise should be your #1 priority and you should take meds to maximize your ability to exercise.
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Old 06-30-2019, 12:44 PM   #5
chriswelber
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Thanks for your response!

Itís 25/100 now taken 4 times daily.

Yes I agree thereís no magic bullet and after medication exercise is most important.

How has your journey been emotionally?

Thanks.


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Old 07-02-2019, 11:08 AM   #6
soccertese
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Quote:
Originally Posted by chriswelber View Post
Thanks for your response!

Itís 25/100 now taken 4 times daily.

Yes I agree thereís no magic bullet and after medication exercise is most important.

How has your journey been emotionally?

Thanks.


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i'll skip commenting on my emotional journey other than to say i've never been very depressed except right after being diagnosed.
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