Effects of medications: I was diagnosed... - Cure Parkinson's

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Effects of medications

lovelabretrievers profile image
21 Replies

I was diagnosed with PD about a year ago. I am of course interested in anything that is neuroprotective. I was told that only exercise is so I do that. Some believe that nicotine is so I have been on nicotine gum for several months. So far I have not noticed progression. My primary symptom is weakness in my dominant hand. I have delayed taking medications but am wondering if medication has helped those with that symptom. Thanks for sharing your experience.

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lovelabretrievers
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21 Replies
nednedned profile image
nednedned

Have you tried rasagaline? At that stage it might be very beneficial.

JayPwP profile image
JayPwP in reply to nednedned

Rasagiline & Selegiline have some studies supporting neuroprotection. Is Safinamide also neuroprotective?

Bolt_Upright profile image
Bolt_Upright

You should consider joining the Zoom calls MBAnderson is so nice to host. Lots of nice people and experience. You will be welcomed.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

MarkPrana profile image
MarkPrana in reply to Bolt_Upright

Thanks Bolt, might try and join one of these. I'm in the UK so 6 hrs ahead.

MarkPrana profile image
MarkPrana

Hi lovelab, smoking has been shown to be associated with a lower risk of getting PD.

The Michael J Fox foundation spent a few million dollars testing nicotine to see if it was the active and beneficial ingredient. They found no association when testing nicotine in isolation.

Current thinking is moving towards lithium being the active ingredient in tobacco that might explain the beneficial and neuroprotective effect.

A good book that explains the rationale is here:

The Promise of Lithium: How an Over-the-Counter Supplement May Prevent and Slow Alzheimer's and Parkinson's Disease amzn.eu/d/eELii0V

JayPwP profile image
JayPwP in reply to MarkPrana

I have 5mg lithium orotate tablets, but I don't know how to start, how to dose, what to expect and when, and how to identify any side effects

CuriousMe12 profile image
CuriousMe12

Meds only mask symptoms. I try to exercise, stretch, walk, relax, read.

Think positive.

lovelabretrievers profile image
lovelabretrievers in reply to CuriousMe12

CuriousMe12, what exactly do you mean when you say that medications only mask symptoms? I understand that they are not neuroprotective. But would they, for instance, reduce weakness in my dominant hand?

WinnieThePoo profile image
WinnieThePoo in reply to lovelabretrievers

They might well do so. It depends. It's a complicated, maddening, and variable disease and everyone responds individually. The best way to find out is to try. You can always stop again if it's not doing anything for you.Even allowing a fair bit of latitude in semantics, I don't think it is correct to say drugs like levadopa mask the symptoms. Temporarily, with some potential complications they reduce or even remove the symptoms. And they do so by temporarily replacing the missing molecule that causes them

CuriousMe12 profile image
CuriousMe12 in reply to lovelabretrievers

I mean as you say they aren't neuroprotective. They simply replace the lost dopamine for as long as the med lasts. So your symptom may well disappear, while your tablet is active. But I think you already know this.

TomGreen profile image
TomGreen

If you have access to a alternative health newsletter called "Nutrition an Healing" in the December 2016 edition, it offers you information about a supplement called NAC which is beneficial to people with Parkinson's Disease. Dr. Rothfeld has Parkinson's Disease and he has never used any medications to control the disease. He was the doctor who published this newsletter at that time. He self injected with glutathione and never declined with his health and he is still fully functional to this day. You can purchase liposomal glutathione on the internet if you want to follow his routine. The liposomal supplement bypasses your gut and immediately goes into your blood stream. You may save yourself from the many side effects of using the medication route.

faridaro profile image
faridaro in reply to TomGreen

Do you know of anybody else trying Dr. Rothfeld's protocol?

JayPwP profile image
JayPwP in reply to TomGreen

Please link to the article

TomGreen profile image
TomGreen in reply to JayPwP

nutritionandhealing.com/201...

JayPwP profile image
JayPwP in reply to TomGreen

Thank you 🙏

lovelabretrievers profile image
lovelabretrievers

For those that have started the medications, what have your worst side effects been?

TomGreen profile image
TomGreen in reply to lovelabretrievers

No I don't know anyone because my wife is already on all the medications and she would not stop taking the medicines unless her consultant told her to do so. That is unlikely to happen because every doctor is paid to medicate by the pharmaceutical industry. That is why medications have quadrupled since Covid began.

WinnieThePoo profile image
WinnieThePoo in reply to TomGreen

Quadrupled? Can you provide any data?

TomGreen profile image
TomGreen in reply to WinnieThePoo

Do some research. There is a book entitled "To Many Pills" written by Dr. James Le Fanu who has a fellowship with the Royal Physicians (2014). He provides the information that you are looking for. ISBN 978-1-4087-0978-8.

Karmaone profile image
Karmaone

Hello, I was diagnosed 2ish years ago with weakness in my dominant hand that slowly turned into a tremor when I was stressed (I was undiagnosed for at least 6 years).

I started with rasagaline before my formal diagnosis and, although it may have been placebo effect, my hand became more useful. Also two different consultants told me that in their experiences/opinion, rasagaline was neuro protective.

My current consultant is very medication heavy, and I don't take half of what he prescribes me! He is very much of the opinion that because I am young onset that I should take as many meds as I need to maintain my life style. This is also because he is the lead on a stem cell trial and believes there will be a 'cure' in the not too distant future.

There are some people who see no medication as a badge of honour, and some who find it helpful. The side effects of too many meds (Dyskinesias) is what made me back off on the meds and accept some symptoms.

From my limited experience, fasting has been helpful, B1 increased my energy, Berberine seemed to be helping, but I'm on the fence now. Cold water (plunge pool, sea and river dips) seem beneficial. Exercise obviously, the more difficult/ intense the better.

Various supplements are good for some and not others. It's all an experiment and there's a lot of placebo effect. Try things one at a time and give them some time. I'm interested in probiotics at the moment but I need to slow down and stop trying everything at once!

Lastly, your mental health shouldn't be overlooked. I'm fortunate as part of my profession I get a lot of therapy. Acceptance and hope can be difficult to balance on your own and it's worth talking to a professional (I'm a little biased because of what I do for a living).

CuriousMe12 profile image
CuriousMe12 in reply to Karmaone

I was told by Neuro 6 year ago Rasagaline was neuroprotective. One year ago I was told it wasn't neuroprotective. I tried it for 3months with no reduction in symptoms.

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