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Old 06-27-2016, 09:11 PM
 
29 posts, read 17,891 times
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I am 27 and was diagnosed with young onset Parkinson's last year by a neurologist after extensive testing. yeah I know it's not common to be so young but it occurs.

I was prescribed Sinemet and Azilect but chose not to take the drugs as I am absolutely terrified of the side effects. I have been told so many young people put on these drugs develop dyskinesia and other nightmare side effects. I have opted out for this reason.

I am currently just taking advil for muscle pain (as I seem to have more of than the average person). I don't know what to do and feel so stuck. People think I'm crazy for not medicating this but I don't think they understand how I'm feeling.

Any advice?
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Old 06-27-2016, 09:15 PM
 
Location: Eastern Oregon
983 posts, read 695,989 times
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You're experiencing muscle pain - and what else?

I know that many people have been helped by Deep Brain Stimulation for PD. Have you thought about that, either for your immediate future or later?
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Old 06-27-2016, 09:47 PM
 
29 posts, read 17,891 times
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Quote:
Originally Posted by Gabbythecat View Post
You're experiencing muscle pain - and what else?

I know that many people have been helped by Deep Brain Stimulation for PD. Have you thought about that, either for your immediate future or later?
I have tremors in my hand, foot, leg (right side) tongue (sometimes) and head. I have other "non motor" symptoms too.

DBS is waaaaaay too soon, the thought of brain surgery and the implant is too much for me as of now. You still have to take meds even after DBS.
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Old 06-27-2016, 09:56 PM
 
Location: Eastern Oregon
983 posts, read 695,989 times
Reputation: 1859
Quote:
Originally Posted by Cruiser755 View Post
I have tremors in my hand, foot, leg (right side) tongue (sometimes) and head. I have other "non motor" symptoms too.

DBS is waaaaaay too soon, the thought of brain surgery and the implant is too much for me as of now. You still have to take meds even after DBS.
I honestly don't know much about DBS for PD, although I attended a support group for DBS patients and heard amazing stories about the positive impact it has had on PD patients. I have DBS for Essential Tremor, and the operation is the same - the wires just get put in a different place. Yes, it's a huge thought. But you might want to start thinking about it...

The nurse (who ran the support group I attended) told of a PD patient who wound up in ER. He had become paralyzed on one side of his body; the ER staff thought he'd had a stroke and was preparing to treat him for that. But fortunately they called in this DBS nurse. She quickly checked him and found that his battery had quit. They replaced the battery (an easy outpatient operation), and instantly cured his paralysis.
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Old 06-27-2016, 10:26 PM
 
Location: Midwest, USA
706 posts, read 395,972 times
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At the very real risk of being hounded and harassed by the pharmaceutical patrol present on this forum , I'll post some information about what I've learned of natural ways of dealing with this illness.

Toxins that have been implicated in the onset or progression of Parkinson's are: heavy metals, conventional pesticides, and food additives such as aspartame and MSG. I would avoid these at all costs, and I would work on safely chelating heavy metals.

Deficiencies that can contribute to Parkinson's symptoms include magnesium, vitamin D(3), vitamin K(2), and glutathione. The latter being hard to "supplement". It's better to increase your body's capability of making glutathione by taking precursors such as NAC, R-lipoic acid, or organic whey protein (which naturally contains most amino acids).

Herbs that may help with the condition are pau d' arco, ashwagandha, chuchuhuasi, ginger, cinnamon, green tea, cannabis, medicinal mushrooms like Lion's Mane, turmeric, and some TCM remedies. Probiotics, which are critical to the health of our guts, are important. Homemade fermented foods are the best source for that, but high-quality, high-count probiotics are also sold in supplemental form. The ingestion of adequate amounts of high-quality organic coconut oil may also be beneficial, as it is in some Alzheimer's patients (up to 4 Tbl. a day may be needed).

Aside from that, here are some links that I found useful when learning to deal with my own Parkinson's-like issues:

Parkinson's Disease - Mitochondrial, Dopaminergic, Neurons - Life Extension Health Concern

'Antioxidant' Treats Parkinson's Naturally, Study Finds

Tai Chi Helps Parkinson's Patients - Medical News Today

Fight Parkinson's: Exercise May Be The Best Therapy : Shots - Health News : NPR

Diet & Exercise Can Help Curb Effects of Parkinson's Disease

https://www.newscientist.com/article...ns-treatments/

Protective Effect of Sulforaphane against Dopaminergic Cell Death - NeuroTalk Support Groups

http://www.cancertutor.com/Other03/Parkinsons.html

I have been successful at treating Parkinson's-like symptoms by utilizing many of the above. I don't think I am dealing with "true" Parkinson's, but I have had many neuro problems for about 10 years, and have been helped by these things (and more--like "woo-woo" energy healing). Oddly enough, it may also help that I smoke organic tobacco since nicotine has been shown to be useful in Parkinson's patients.

Frontiers | Beneficial effects of nicotine, cotinine and its metabolites as potential agents for Parkinson
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Old 06-27-2016, 10:58 PM
 
18,773 posts, read 6,129,215 times
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All the above is important vital info and very helpful in PD.

I follow some other's journey with PD and Fava Beans are a huge subject:

Fava Beans, Levodopa, and Parkinson's Disease - SSNV

Magnesium, Vit D3 and K2 for sure.

Here is more good info and the importance of the supplements mentioned..grape seed extract is mentioned and 8 on the importance listing.

http://www.grape-seed-extract.org/dr...ns_disease.htm

Here's a link you can take your time and go over.

http://www.neurotalk.org/forum34/

Last edited by jaminhealth; 06-27-2016 at 11:51 PM..
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Old 06-28-2016, 11:53 AM
 
Location: Midwest, USA
706 posts, read 395,972 times
Reputation: 600
Quote:
Originally Posted by Cruiser755 View Post
I have tremors in my hand, foot, leg (right side) tongue (sometimes) and head. I have other "non motor" symptoms too.

DBS is waaaaaay too soon, the thought of brain surgery and the implant is too much for me as of now. You still have to take meds even after DBS.
You could look into acupuncture instead, since it's been used successfully in Parkinson's and it's non-invasive. Well, relatively non-invasive. Lol. It does feel a little weird to have needles stuck in your body, but it's not bad and it's pretty painless all around. Each session is usually only 30-60 minutes.

https://nwpf.org/stay-informed/news/...ease-patients/

Bee-Venom Acupuncture Shows Promise in Parkinson's

Acupuncture May Benefit Parkinson's Patients - Medical News Today


This also looks promising, IMO.


https://earthpulse.net/magnetic-therapy-parkinsons/



https://www.youtube.com/watch?v=ienhFCI8fuw


https://www.youtube.com/watch?v=DNqExvp-yLA


https://www.youtube.com/watch?v=6nUoo5FOC3k
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Old 06-28-2016, 01:50 PM
 
Location: Midwest, USA
706 posts, read 395,972 times
Reputation: 600
Quote:
Originally Posted by freedomdove View Post
I have been successful at treating Parkinson's-like symptoms by utilizing many of the above. I don't think I am dealing with "true" Parkinson's, but I have had many neuro problems for about 10 years, and have been helped by these things (and more--like "woo-woo" energy healing).
In case you're wondering what my symptoms were, they included tremors, gait and balance problems, dyslexia and other writing and reading problems, speech issues (slurring and speech dyslexia--if that makes sense), brainfog, problems with motor skills like writing and typing, repeated episodes of paralysis, and more. Again, I don't think it's true Parkinson's. More like induced Parkinson's or something. The symptoms are somewhat similar. They were brought on by two sessions with an IPL machine (intense pulsated light) eleven years ago.

Aside from what I've listed already (deficiency corrections and herbal supplementation), I also employed energy and mind healing of various forms. Honestly, that probably helped more than anything. In fact, one modality saved my life. At one point about 4 years into the illness, I was having stroke-like episodes so often and for ever-increasing durations that I was never sure I was going to wake up the next day. I was even starting to have them in my sleep, which was scary.

After having gone through just one appointment with these people and their technique, I stopped having strokes. I had a few times in the couple years afterward that I felt weird like I was maybe going to have one, but they didn't go through. And I haven't had any times of feeling like that for several years now. I didn't even go through all the sessions they offer; just the first one. It was enough to reset me, and I will be grateful to Sol and Leigh for the rest of my life.

Phoenix Center for Regenetics | DNA Activation & Sound Healing

I wasn't fully fixed by that session, but I was so much better. I no longer wondered if I was going to die in my sleep. The rest of my improvements came from the things I've already posted, and from more energy and mind healing (using my will/mind to correct dysfunctions). I had to retrain my body to work properly. I know it sounds whacky, but it must not be too crazy since it worked. Our minds are more powerful than most people realize. The energy healing came from others and from myself. Most of it has been done long-distance for free--though I did pay a couple professionals (in-person sessions). I've been helped by many. I still have some lingering issues, but I hope that they will resolve soon enough. It's *nothing* like it used to be and I attribute my improvements to all the various modalities I've chosen. They all helped in their own ways.

One more thing: It's important that you *really* want to get better or fix the problem since your mind can work for or against you, depending on your outlook/perception. Don't listen to people if they tell you that you can't do this without pharmaceuticals. What do they really know, eh? It's worth giving it a try without them, IMO. If it's not working then you might consider taking what they offer. At the least, you can combine both alternatives and conventional treatments. Maybe you can find an integrative medicine clinic in your region. They may even have acupuncture services.

By the way, when I first fell ill from the IPL, I was insured and seeing a whole host doctors--including neurologists and cardiologists. They couldn't help me, though they did try. I ended up losing that insurance but that's okay since they weren't helping anyways. I became my own doctor and have since improved greatly, with some assistance from others along the way and with the help of natural medicine.
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Old 06-28-2016, 03:00 PM
 
Location: Middle of the ocean
27,448 posts, read 17,619,243 times
Reputation: 39933
Are any side effects from the meds permanent?

If so, I understand your concern.

If they are not, then you should absolutely try them to see if they work.

Are they to slow down the disease or just to reduce symptoms?

If for symptoms, definitely whatever makes you comfortable.

I would put up with a lot to slow the disease.

Good luck with everything and sorry you are going through this.
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Old 06-28-2016, 05:44 PM
 
18,773 posts, read 6,129,215 times
Reputation: 12658
Here is more info to add to the long list already submitted to you. This one on LDN and PD:

LDN and Autoimmune Disease
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