What I have been doing to manage PD


#1

Hi, I hope that this is not considered spam, as I am not trying to sell anything.  If it is not appropriate, please feel free to delete.

I have recently been diagnosed with PD, and I am doing a case study experiment on myself...and sharing the results here:  www.reverseyoungparkinsons.com

I don't know if it will be successful.  I plan to go off of all PD medication in 3 months to see if any PD symptoms return.

However, if you are interested in trying the same thing that I am, I would love your feedback on how it worked out or didn't work out for you...


#2

I hope you find the cure you seek, but having read the requirements re purchasing industrial quantities of health supplements per day ( literally hundreds of pills etc daily!) There is no way we could try this!

Good luck!

GG


#3

I am doing it now...it is about 50 pills a day I think...it just takes discipline and about an hour's worth of time a week.  The more difficult thing is the expense.  It costs me about $500 a month.  However, if it prevents progression of PD or reverses it, I would pay even more than that.  I guess I will know in a few months...good luck indeed...thanks for checking it out.  I will be keeping the website updated with my results.


#4

I went to go see my neurologist yesterday to discuss my plan/experiment.  She was rather excited about the potential of it.  She wants me to keep her updated, and she noted everything I am taking and is doing research herself.  She was especially interested in the detoxing component.  She was impressed with the level of research and discipline...especially at the willingness to take so many pills.

As I suspected, she expressed concerns for liver and kidneys.  I plan to check for kidney and liver stress once a month for the first three months, and then every three months thereafter.  She was less concerned after I said that.  She also is checking for any possible concerns for any supplements I am mixing together.  My initial research found no concerns, but I am glad she is checking as well.

The detoxing produced headaches at night for the first three nights.  Now it seems to be subsiding.  Everything else is going real well.  :)

I will make updates as often as it makes sense, in case anyone is interested.


#5

Hi jds,

Am watching with interest.  Dx 3 yrs ago although believed to have had PD for 8 or more years, still remaining meds free.  Relying on exercise and diet to help reduce symptoms for as long as I can.  Don't feel I could follow your protocol (too complicated), but it's good to find someone else who is exploring ways to deal with this condition.  All the best. Hazysunshine

 

 


#6

Hazysunshine...complicated indeed...LOL...I have simplified it as much as I could personally, for my lifestyle, and so far, thankfully, it is becoming routine.  However, I am a process orientated six sigma black belt, so I know that being organised is key, and I am disciplined about it.  It was still challenging to get the process down to a science though.

Have you been to completely eliminate symptoms?  Did you do an L-DOPA diagnostic test?  I have heard that about 20% of PD diagnoses are false positives.  Since I responded to L-DOPA very well, I have heard that it is near certain that I have PD...however, I still hope sometimes that it was a mistake.


#7

looks to me if its a money maker ! eek



#8

Hi, JDS

 

I think your experiment sounds full of promise. It would be fantastic if indeed it works. I do hope so and wish you all the very best. Though I must say that I would be daunted by the prospect of having to take so many supplements. And the cost involved too. Please let us know how you get on.

I read today that a new drug is now available on the NHS for stopping and even perhaps reversing MS. Shame they have not yet found an equivalent for Parkinson's !!!!!

Hazysunshine, like you, I am very reluctant to start a medication regime whilst the symptoms are not too bad. My neurologist does not believe that anything would be gained by introducing drugs too early, so I remain drug free and hope for the best for the time being.


#9

LOL...more like a money drainer.  I spend at least $500 to $600 a month for this experiment.  I live in Costa Rica so my options on getting supplements is limited.  I use iHerb because they ship to CR for only $4 if it is under $80.  But there is also Vitacost, which seems very similar to iHerb and also has low prices.  Most of the supplements I have chosen for this experiment can be found on the Internet in many places.  If anyone can find them cheaper somewhere else, please let me know.  I am not rich and this experiment is a substantial part of my families budget.


#10

Redpoppy,

It was daunting to take so many pills at first.  I have been officially doing "the protocol" as described in detail for two weeks, but I really started a couple months ago as I learned about various supplements and gradually kept just a few more as I learned more.

My biggest concern about taking so many supplements is liver and kidney stress.  I am getting labs done on Friday just to make sure I do not have elevated liver enzymes.  I drink a LOT of water, which I hope helps, and I am in a detox phase, so hopefully my body is dealing with less toxins in my system as a result.

But I do have to admit, I am rather anxious to see what happens if I get off my meds, to see if symptoms return.

If they do not return, I will be quite happy...but I would have to try to figure out what that means...would that mean I reversed it some, but it is still progressing?  Or did I stop it all together?  The problem is that I would not really know for years I suppose.  Not only that, but I am only a case study.  

I wish it was not all so expensive, because I suspect others would be trying it as well and it would be nice to hear other people's experiences.

Thanks for popping in....
 


#11

how long have you had pd.


#12

Hi Gus...I was officially diagnosed on 3/13/14...so very recently.  I can trace symptoms back as far as at least 4-6 years.  It was not until July of 2013 that twitching was introduced, which caused me to seek the perspective of a neurologist a few months later.


#13

I did not have a chance to get labs done to check my kidneys/liver this last Friday.  I will be doing that this Tuesday.  In doing research, most of what I am taking appears to be rather easy on the kidneys and liver.


#14

Labs for kidney and liver function were all in range...so far, the supplements have not caused any known stress on the system.  Feeling great.  In 39 days I will reduce the MOAB inhibitor by half and see what happens.  :) ...then completely off the MOAB inhibitor in 69 days, and watch as to whether symptoms return.


#15

Hi, JDS,

I am so glad you are getting on well with the experiment. Keep us posted.

Do take care.




#16
July 4th, 2014
 
Unintentionally, I have been only taking 1/2 the MOA-B inhibitor.  On June 22nd, I accidentally forgot to place my second daily dose in my pill organizer for lunch.  Six days later I realized it.  Since that date I have continued with half a dose.  I have not experienced any return of PD symptoms yet.  The plan is still to discontinue the MOA-B inhibitor completely on August 15th.
 
So far, the protocol has been followed nearly perfectly.  In examination of missed dosages, it appears that about 3-4% of dosages were missed.  This was usually the bedtime dose and only on occasion.  The resistance training has been followed nearly 100%.  The cardio training has been followed about 50%.  There is opportunity to improve the frequency of cardio training.  On the flip side, good blood flow and heart rate does occur during intensive weight training, and has diminished concern for missed cardio during busy times.
 
On occasion, in the last week, there has been slight pain in the area of my kidneys.  This began once I increased my protein intake in an effort to gain muscular mass following the weight training program.  I have eased off the protein about 20% and increased my water intake.  I plan on getting labs for liver and kidney values in the next week as an extra precaution.
 
The plan is to see the neurologist soon to present her with this update and solicit for her feedback.
 
I am very excited about the results so far and I am eagerly awaiting August.  God willing I have really slowed down PD progression...or even more optimistically, stopped or reversed it.  That will take time to determine.

Updates have been posted on the website for anyone who might be interested:
https://www.reverseyoungparkinsons.com/protocol-results.html

#17

Hi, Jds,

Thank you for the update. It is great that you are feeling so well and are optimistic about slowing down the progression of your PD.

Please continue to keep us posted.

Take care


#18

Hi JDS, Have you read any of the old forum posts by Chewexpert? This should certainly interest you. 


#19

Hi Kate...no, I hadn't heard of Chewexpert, but now I have.  I just examined his posts.  The Parkinson's Improvement Program seemed very interesting.  There was certainly some overlap in what I have proposed here, but I certainly have included a lot more research and pills...not that anyone likes to take a lot of pills...haha.

The helibactor pylori discussion was quite interesting to me.  I had a throat ulcer for 7 years, and as I understand it, there could be a correlation there.  I will proceed with getting tested with helibactor pylori.  However, even after examining the posts, I was unsure to the exact nature of the proposed causel relationship with PD and this bacteria.

One thing is for sure, even if my PD is not stopped or reversed as a result of this, I feel better than I have since I was in my early 20's.  It is quite amazing.  I have been told I look younger as well also.  I have also gained 15 pounds and lost 8% body fat.  

If I have success with this protocol as it relates to PD, I am considering financing clinical test trials in Costa Rica for it with a interested medical team and about 25-30 volunteers.  But that is at least a year out.


#20

Hi JDS,

I think someone found a disproportionate number of Parkinson's patients , who tested positive for the HP bacteria and there have been suggestions that the gut plays a role in the disease (as well as the brain)

Any slight abnormality that is found to be prevalent among us is of interest  as we are so keen to find a cure and the normal route of research is too slow for us, we would like someone to stumble upon the causative agent out of the blue, with readymade treatment  included, of course. And we all try to find what caused our own PD version.

The difficulty of the tests (of any research into PD for that matter) you are suggesting are that  A. the sample of patients taking part is very small, B, PD is a disease of many different aspects (might be more than one disease), C. It is a disease that is particularly sensitive to the placebo effect,  D.progress is very variable, some are still without drugs after 8-10 years without having followed your or chewexperts dietary advice. I was diagnosed almost 15 years ago and have seen a lot of trials come and go where the final conclusions only came up negative.. A lot of money has gone into research over the last 50 years.  (this site is run by the biggest contributor to research into PD in the UK )

I am sure looking after your general health is beneficial. Good luck, I wish you a lot of patience and persistence.