Hi everyone.

2 days ago I was with my father at the doctor when he was diagnosed with Parkinson's. He was totally freaked out....understandibly (we both were). He is 68 and his symptoms were only noticed 4 weeks ago by my brother.

I am trying to figure out the best and most current treatments (non-drug I mean...he's not at that point yet).

Other than 1200mg of CoQ10 (which seems to be the standard protocol), there are just SO many things that look promising but I just don't know what to recommend (I told him I would research for him, btw)

Here are some of the other things that I have read about:

Methylene blue (most things I have found on this are a few years old which makes me think that it's popularity has diminished)

Curcumin

Transdermal Magnesium

high doses of vitamin C

various other vitamins (namely D)

and on and on

Could someone please help me make sense of all this? There must be a "latest and greatest" routine or something like that.

Thank you SO much in advance!

-Asterisk

Hi Asterisk,
Welcome to Neurotalk, you should get good advice here. I can't say I am "someone knowledgeable" but I would recommend cucumin. I have had PD for 19 years, and altho' I have tried many things, the one mainstay has been curcumin. Buy it with piperine (Bioperine) added, this makes it more bioavailable. I take 1000mg per day. it is very safe having passed 6 human trials up to 12 grams. It is a strong antioxidant, helps maintain the blood-brain barrier, and is a chelator of heavy metals.
Also tell your father not to panic about PD. He will have many years yet to enjoy life, PD is a slow developing disease generally. After 19 years, I still drive, manage to maintain a half acre garden, and in 2 weeks am travelling to Austria to start a 9 day cruise on the Danube, and visit Vienna and Budapest.
Ron

While I can't keep up with Ron, my signature line serves as a running listing of things that have both experience and research going for them. One thing not on there is stress management. An uncontrolled stress response is deadly in PD. Meditation, exercise, hypnosis, whatever it takes.

Hi,

Rick has very good points. There is also convincing eveidence that PD is an auto-immune disorder centering on out of control inflammation. A potential vaccine is in the works; Gendelman is a lead researcher at U of Nebraska and an Austrian pharma AFFIRIS will start clinical trials later this year! I feel strongly they are on to something and am in the process of starting an anti-inflammatory supplement regime and a cycling program. Please see the thread Pedaling for Parkinson's for the importance of force paced exercise.

I'm sure you already know this but these treatments are complementary so many doctors wash their hands of it all. I would suggest researching, having your dad go through a complete panel checking vitamin levels (B is important too) and things like thyroid panels; then consulting with a Naturopath to help with adding and managing supplements- it is dangerous to put together a treatment plan on one's own.

University of Maryland Medical Center and Udall in Seattle are some of the very few progressive minded PD treatment centers that take an integrative approach and if possible your dad may want to visit one for a treatment consult. I hope to visit UMMC this summer.

Hope this helps,

Laura

asterisk-
unfortunately, I don't think this is any dominant approved alternative approach - mentioning the idea to many neurologists will draw complete blanks. So that means a lot of reading amd research for you and then deciding what resonates best with you. The good news is that there are many possibilities. On the COQ10 thing, that has been a popular idea for many years, but I'm not sure that that hypothesis about it has been substantively shown to be accurate - you might think about or ask about that -because the stuff is pretty expensive.

Laura, have you met any naturopaths with any kind of understanding of Parkinson's medications, in terms of the effects on the body, depletion of various nutrients, and dangers when modified by other substances?

the first thing i did was get a second opinion from a movement disorder specialist. this is a neuro who has had specialized training for movement problems.

in the meantime.. ask the dr who dxd your dad if they would write a prescription for massage and physical therapy. most of the time insurance will cover these with a referral and they will even tell you the providers in your area. accupuncture as well.

if the dxd is definately pd, dad should begin a medical journal to keep track of what he has tried and the results including side effects.

most importantly, educate yourself on pd and make sure he does as well. research online all that you can, find a local support group, buy books about pd, go to the library,ask questions. i applaud you for your dedication to help your father.. support is one of the most important things your dad will need.

i will search for a link to the specifics but your father is probably a hard to come by candidate for a few parkinson's studies.

They are trying to find patients who know they have it but have not started medications to alter anything yet. Go to michaeljfox.org and pdonlineresearch.org If you don't see the study just call the foundation and tell them about your father being diagnosed but not on med and you heard there is a study about them. It may be for a younger onset but I don't like to see an unmedicated dfiagnosed patient go to "waste"....after 20 years we are still waiting for better treatments. By studying your fathers' images, blood, and other various biologics and behaviors that could be genetic in nature as well, they are hopefully going to discover biomarkers that indicate your father had pd long before his movement symptoms started. They are searching for the cause, but no one believes in a single cause that I know of.

lots to think about but it would be helping everyone and he is still medicine free - it could help him learn about his condition too.

good luck,
paula

Thank you all SOOOOOO much for the thoughtful replies. I read every one of them to my father and we got some great ideas (he will be calling about massage tomorrow and is going for a second opinion in 2 weeks)

Ronhutton, I really can't tell you how much hope your post gave to my father. Seriously you can't imagine. The fact that you are NINETEEN years out and still able to drive and tend your garden is just AWESOME!!!!!!

Your post was so inspiring that my father just ordered curcumin (with bioperene!)

Thank you all again so much. I have much research to do.

Oh, I forgot to mention another supplement....resveratrol.

Hi Asterisk,

I would recommend, in this order:

Stay away from all drugs.

Take a nutritional supplement called Dopavite, available to purchase, inexpensively online

Improve diet

Make use of massage therapy, physio, cycling if possible, yoga, tai chi

This is what I do and I seem to be doing better than anyone else here. I still have Parkinsons, but less than anyone else I know who was dx'd in 2003. I got off all drugs in Sept 2009. I have a lot of pain, but less than when i was on drugs.

Best of luck,

Muireann

Dear Asterisk,
I was diagnosed in 2001 after removing my head from the sand where I had hidden for three or four years. During those first few years before dx I was drug free and hiding my symptoms was a time consuming and exhausting effort. When I was diagnosed I immediately informed my co-workers and the stress of concealment was removed. Stress in your father's greatest enemy.

I started on medication immediately after diagnosis and was sorry not to have done it sooner. It made me completely normal again. As with everything Parkinsons related, it is a totally individual decision.

At almost 10 years from diagnosis my problems are few and my life has continued on very much as before. This too is variable, but entirely possible. Exercise and as much serenity as possible are the best medicines early on, and give the best long term results.

Tell your father to join us here, he will find community and people who really understand the emotional issues he may deal with. Finally, my best advice is get involved in advocacy. It will give him back a feeling of control and power that is routinely snatched away by the medical community. I have only learned in the past year how much better I feel being open about having PD than when I was using all my energy trying to be normal.

Don't despair, life does go on. He may never get better but it could be a long long time before he gets much worse.

Pam