WWYD: Diagnosed with young onset Parkinson’s

[GoVanGogh]

What would you do, In terms of treatments -standard and alternative? Nutrition, mental, physical. 
I am on medication for severe nerve pain, and was already on meds for depression and anxiety.
I was getting PT but now insurance is an issue. I may hire a personal trainer to help me with a workout plan. I plan to ramp up my yin yoga practice. My neurologist suggested stationary biking. Balance is a huge issue right now. 
I was getting acupuncture for some of the symptoms until covid shut down that center. They recently reopened and I plan to start back. 
At this point, nothing is too alternative to try. 
would love to hear some positive ideas and options. 
thanks. 

[Selkie]

I’m so sorry. I’m in several whole food plant based Facebook groups and have seen it mentioned that eating this way can be beneficial for preventing and treating Parkinson’s. Just did a quick google search and it turned up quite a bit of information on it.

[klmama]

Sending you a PM.

[Liz CA]

I will send a PM as well

[MercyA]

I am so sorry. A friend of ours was diagnosed with Young Onset Parkinson's in 1999, at the age of 38. He just published a book last year about his experiences these last 20 years. He's a highly intelligent guy, a Stanford educated lawyer with degrees in classical studies. He writes from a Christian perspective. I don't know if this would be helpful to you, but thought I would mention it just in case.

[Meriwether]

I'm sorry. I remember seeing something on Facebook about wearing a light bucket on your head for Parkinson's. I only noticed it because my BIL's father has Parkinson's. I have no idea how effective, if at all it is.

[Pen]

I would look up whatever I could about alternative and complementary approaches, look for Parkinson’s patient forums, and see if I could find a good functional medicine doctor. 

 

[Pen]

And I would want to make sure I had excellent B12, D etc vitamin levels. 

I might also look at possible toxicity since some people I know have had PD apparently from toxic exposures.  And that might be able to be reduced. 

 

I hope you feel better!

 

[mom2samlibby]

I'm so sorry.  My dad has parkinson's and it's been hard to watch his progression over the past three years.   This is what I would do.  I would start following this protocol.  https://therootcauseprotocol.com/   I had my parents on it for a few months, but they were not good about following it.  I have been following this protocol for the past 2 1/2 years.  It helped eliminate my migraines, brain fog, heart palpitations, numbness in my face & legs, and fatigue.  

[lewelma]

My grandfather was diagnosed at age 46 in 1952 and lived until 88. His doctors told him that it was his active lifestyle to kept the parkinson's at bay. He gardened in his yard every day for hours and hours for my entire childhood. Roses, corn, peas, pumpkins. You name it, he had it.  He also terraced his yard and made rock gardens. Back then the meds were not so good, but he stayed active until he was 80 when he started to really stiffen up.   

[Ottakee]

Hugs.  I don't know much about it but my physical therapist location had a tandem bike they had made into a stationary bike and the therapist and client would pedal rapidly together.   I think the idea was to have the therapists help so that they could pedal much more rapidly.

[maize]

My dad was participating in intense workout classes for people with Parkinson's before covid hit, that is supposed to be one of the best ways of slowing they progression of the disease. He said it was the hardest he had worked out since football training in high school.

[BlsdMama]

9 hours ago, GoVanGogh said:

What would you do, In terms of treatments -standard and alternative? Nutrition, mental, physical. 
I am on medication for severe nerve pain, and was already on meds for depression and anxiety.
I was getting PT but now insurance is an issue. I may hire a personal trainer to help me with a workout plan. I plan to ramp up my yin yoga practice. My neurologist suggested stationary biking. Balance is a huge issue right now. 
I was getting acupuncture for some of the symptoms until covid shut down that center. They recently reopened and I plan to start back. 
At this point, nothing is too alternative to try. 
would love to hear some positive ideas and options. 
thanks. 

((Hugs)) Mama - Parkinson's isn't a fun disease.  I was diagnosed with ALS - I'm 43, also not much fun and pretty closely related.

Balance is a huge problem.  I have moved to either using a walker or a wheelchair at all times.  I've taken a few nasty spills and you want to avoid that at all costs.  My walker is very "sexy" lol - it's a Drive Nitro Rollator and it took a lot of swallowing for that pride to go down.

If it were me - I'd check to see if Nurown Brain Storm is planning on running trials for their stem cells.  They are probably the med tech that I am most hopeful for - they are just finishing up Phase 3 trials.

Be looking for trials.  Recognize any meds you choose to take has trial acceptance implications.
As far as diet - check out Wahl's Level 2.  I am not good with supplements for Parkinson's but I can tell you what I take for ALS and you can see if any are encouraged because they are closely related:

CBD - Charlotte's Web 70mg
Leap2BFit - 2x/day  (This is the least expensive way I get a lot of nutrition - contains several forms of turmeric / curcumin)
CoQ10
B12 - MASSIVE amounts throughout the day
L Carnitine
Glutathione
NAC
Vit. E
Vit. D3
Beef Organs - freeze dried
Vit. C - Liquid

Research if there have ever been reversals.  ALS has had several reversals (approx. 53) and there is a site devoted to what they did.  This is not a thing I've ever heard from the ALS foundation nor my clinics.  Some of them are medically verified, some sound pretty far fetched. 

NIH is your friend when you research.

Google Parkinson's and mindfulness and google Parkinson's and music therapy.  See what you find there.
I have no idea where your faith and hope lies. I'm a Christian so, for me, it's not in a long life or in the life I pictured - that would be hopeless.  If you ever want to talk, message me.  This October will mark four years since my initial diagnosis of possible motor neuron disease and it has been a long and hard journey.  But, I will tell you, it hasn't been a BAD journey - just a very hard one.  A lot of good has come out of my disease and my diagnosis that I am thankful for.  It has shaped and changed who I am as a person.  I've asked God to remove it. I'd be grateful if He would.  However, that said, I'm not sure I'd ever want to forget the past four years and what I've gained from it.  

And sending another hug because you need it. ❤️ 

 

[BlsdMama]

Also, I don't know what the laws are in your state, but if I didn't have small children and CPS worries, I'd be smoking a rather large amount of pot. 😉 You might want to see what you find regarding Parkinson's and medical marijuana.  CBD does incredible things for spasticity and my legs - it saves me tens of thousands on Botox injections. The real deal would be better for my body and my brain but Iowa is not marijuana friendly and I like my kids a little too much to risk a drug charge.  

[aug17girl]

There is a boxing gym in my city that has a specialized program for people with Parkinson's. They find that the intensity of the workouts, focus on balance, and exercises crossing the midline help slow the process of symptoms and keep people healthier. People I know who do the program have had a lot of success with it. They are doing Zoom classes as well right now.

Edited September 14, 2020 by aug17girl
Added something.

[GoVanGogh]

10 hours ago, MercyA said:

I am so sorry. A friend of ours was diagnosed with Young Onset Parkinson's in 1999, at the age of 38. He just published a book last year about his experiences these last 20 years. He's a highly intelligent guy, a Stanford educated lawyer with degrees in classical studies. He writes from a Christian perspective. I don't know if this would be helpful to you, but thought I would mention it just in case.

Thank you. I just bought the kindle version to read. 

[BeachGal]

11 hours ago, GoVanGogh said:

What would you do, In terms of treatments -standard and alternative? Nutrition, mental, physical. 
I am on medication for severe nerve pain, and was already on meds for depression and anxiety.
I was getting PT but now insurance is an issue. I may hire a personal trainer to help me with a workout plan. I plan to ramp up my yin yoga practice. My neurologist suggested stationary biking. Balance is a huge issue right now. 
I was getting acupuncture for some of the symptoms until covid shut down that center. They recently reopened and I plan to start back. 
At this point, nothing is too alternative to try. 
would love to hear some positive ideas and options. 
thanks. 

 

You could look into:

• Photobiomodulation (PBM). Improves mitochondria health. VieLight and other devices like the Parkinson's helmet. Michael Hamlin's research.
• Pulsed electromagnetic frequency therapy (pemf) which is also great for pain but takes awhile to kick in. A mat would probably be best. Some chiropractors have them and allow unlimited use if you buy time for a month or so. If you have specific spots of pain, you could use something like the Sota device which is about $400-ish. We own three and I LOVE them. Dr. Pawluk is an MD who has studied pemf extensively here in the US. NASA bioengineer, Bob Dennis, developed devices for space and has a YouTube channel discussing them. 
• Vigorous exercise 
• Diet. Autophagy (Valter Longo), ketosis, vegan, nutrients (William Li)
• Ways to improve sleep.
• Effect of heat and cold shock proteins created by sauna and cryotherapy. Rhonda Patrick might have some information.
• What researcher Rhonda Patrick posts on her site FoundMyFitness.

There are a lot of promising treatments on the horizon and some are already being used.

[GoVanGogh]

1 hour ago, aug17girl said:

There is a boxing gym in my city that has a specialized program for people with Parkinson's. They find that the intensity of the workouts, focus on balance, and exercises crossing the midline help slow the process of symptoms and keep people healthier. People I know who do the program have had a lot of success with it. They are doing Zoom classes as well right now.

I have read about boxing and am very interested in trying this. Thank you. 

[GoVanGogh]

2 hours ago, BlsdMama said:

((Hugs)) Mama - Parkinson's isn't a fun disease.  I was diagnosed with ALS - I'm 43, also not much fun and pretty closely related.

Balance is a huge problem.  I have moved to either using a walker or a wheelchair at all times.  I've taken a few nasty spills and you want to avoid that at all costs.  My walker is very "sexy" lol - it's a Drive Nitro Rollator and it took a lot of swallowing for that pride to go down.

If it were me - I'd check to see if Nurown Brain Storm is planning on running trials for their stem cells.  They are probably the med tech that I am most hopeful for - they are just finishing up Phase 3 trials.

Be looking for trials.  Recognize any meds you choose to take has trial acceptance implications.
As far as diet - check out Wahl's Level 2.  I am not good with supplements for Parkinson's but I can tell you what I take for ALS and you can see if any are encouraged because they are closely related:

CBD - Charlotte's Web 70mg
Leap2BFit - 2x/day  (This is the least expensive way I get a lot of nutrition - contains several forms of turmeric / curcumin)
CoQ10
B12 - MASSIVE amounts throughout the day
L Carnitine
Glutathione
NAC
Vit. E
Vit. D3
Beef Organs - freeze dried
Vit. C - Liquid

Research if there have ever been reversals.  ALS has had several reversals (approx. 53) and there is a site devoted to what they did.  This is not a thing I've ever heard from the ALS foundation nor my clinics.  Some of them are medically verified, some sound pretty far fetched. 

NIH is your friend when you research.

Google Parkinson's and mindfulness and google Parkinson's and music therapy.  See what you find there.
I have no idea where your faith and hope lies. I'm a Christian so, for me, it's not in a long life or in the life I pictured - that would be hopeless.  If you ever want to talk, message me.  This October will mark four years since my initial diagnosis of possible motor neuron disease and it has been a long and hard journey.  But, I will tell you, it hasn't been a BAD journey - just a very hard one.  A lot of good has come out of my disease and my diagnosis that I am thankful for.  It has shaped and changed who I am as a person.  I've asked God to remove it. I'd be grateful if He would.  However, that said, I'm not sure I'd ever want to forget the past four years and what I've gained from it.  

And sending another hug because you need it. ❤️ 

 

Thank you so much for your reply. I have followed your long journey to diagnosis, as I was on a similar journey at the same time. Hugs to you! 
I have many of those supplements on my list to take. 
I have read of reversals... I am a bit skeptical but also very interested in taking a similar treatment path. I feel like I don’t have much to lose. 
re: your second post. It is illegal in my state but medicinal is allowed just across the border, which is less than an hour away. I am very open to trying it and Am okay being a court case if arrested. I am a new empty nester so don’t have to worry about cps. 
thank you so much for your reply. 

[GoVanGogh]

36 minutes ago, BeachGal said:

 

You could look into:

• Photobiomodulation (PBM). Improves mitochondria health. VieLight and other devices like the Parkinson's helmet. Michael Hamlin's research.
• Pulsed electromagnetic frequency therapy (pemf) which is also great for pain but takes awhile to kick in. A mat would probably be best. Some chiropractors have them and allow unlimited use if you buy time for a month or so. If you have specific spots of pain, you could use something like the Sota device which is about $400-ish. We own three and I LOVE them. Dr. Pawluk is an MD who has studied pemf extensively here in the US. NASA bioengineer, Bob Dennis, developed devices for space and has a YouTube channel discussing them. 
• Vigorous exercise 
• Diet. Autophagy (Valter Longo), ketosis, vegan, nutrients (William Li)
• Ways to improve sleep.
• Effect of heat and cold shock proteins created by sauna and cryotherapy. Rhonda Patrick might have some information.
• What researcher Rhonda Patrick posts on her site FoundMyFitness.

There are a lot of promising treatments on the horizon and some are already being used.

Thank you! 

[Learning fun]

My grandpa with Parkinson’s has recommended using a whole body vibration exercise machine. He says that by using it consistently he has seen improvements in his balance and his ability to walk. I’m so sorry you are going through this challenge. 

[Pen]

 

Cicero Coimbra MD, PhD neurologist in Brazil.