What I have been doing to manage PD

Hi,

It is interesting that I had to be treated for a helicobacter pylori stomach infection 3 years before my first Parkinson's symptoms appeared !!! Could there really be a connection between this bacterium and PD?

There is another recent thread on this very topic on this Forum, as apparently Parkinson's sufferers have  often too many bad bacteria in the small intestine, which can lead to a "leaky gut", therefore allowing chemicals into the blood stream to go and damage the brain.

Let's hope they soon discover what causes this disease !!!

Very interesting!

July 18th, 2014
 
It appears as though some symptoms are returning.  For the last couple days I have experienced afternoon tiredness/sluggishness and unexplainable mild depression symptoms.  At night, when falling asleep, jerking of the arms and/or head have occurred, which was an old symptom.  I decreased the MOA-B inhibitor dosage by 50% on June 22nd.  That was nearly one month ago.  I understand that the effect of the MOA-B inhibitor that I am on has an effect half life of about 40 days, thus a delayed return of symptoms could indeed take that long.  It is still too early to know for certain, and I intend on completing the protocol.  However, this does not appear to be a good sign and is quite disappointing.  It has caused me to lose some hope and optimism. 

Hi, JDS,

Thank you for the update. Yes, it must be very disappointing for you that it doesn't look like the protocol has reversed PD. However, you might have gained in general health and you never know, you might have slowed down the progression of the disease.

You are right to see things right to the end. You never know.. ...

Do take care and keep smiling.

Hi JDS

 

 

Never give up hope.....everyone has bad days, but my husbands moto is 'Keep smiling and you can get through anything'.

 

I too keep looking to see if their is anything other that can help this disease. Today I came across this....http://www.rush.edu/webapps/MEDREL/servlet/NewsRelease?id=1768 which is a natural ingredient.

 

I think it is worth a try to see if it will help.

 

Keep smiling and take care.

 

Tina

Well...another update...

I may have overreacted.  I seem to not be having anymore symptoms.  It could be lack of sleep and stress, which was common during that time...or...perhaps my dopamine levels were actually low due to the wearing off of the MOA-B inhibitor...but, my body maybe began creating more dopamine to compensate for the deficiency which would be attributed to the protocol.  The later would be actually expected when I think about it and would be consistent with the expected process in the posted theory.

I pray that everything continues to go well.  The plan is to still stop taking the MOA-B inhibitor the third week of August.  It is coming up soon, and I am both nervous and excited.

Redpoppy, thank you for the encouragement and support.  That was highly appreciated :)

Katty, thank you for the research!  In reviewing that, I purchased some organic Ceylon cinnamon and some empty gel caps.  I will be incorporating cinnamon into the protocol.  It looks promising and helpful according to the data.

I will post an update in a few weeks. I intend on touching base with my neurologist just before I discontinue the MOA-B regimen.

Hi, JDS,

That is excellent news !!! It must be great to be without symptoms. I really hope it stays that way, as your experience would give hope to others, especially young onset sufferers.

I really wish you all the very best and look forward to reading your next update, which I hope will also be very positive.

Do take care.

 

    Hello jds6958

                               I  was one of the few lucky ones and was chosen for Dudopa, which effectively manages itself, if I feel parky creeping up I just press the boost button putting the beast back in his cage, however  if  I  am distracted I dont  notice the attack and it can then shut me down, so its not the magic  bullet  but  it works for me

                                                         Kindest Regards FED

Well, tomorrow is my last pill for my MOA-B inhibitor.  After tomorrow I will be 100% off of any PD medicine.  It will be interesting to see if any PD symptoms return.  If they do, I expect they should return in 30 to 60 days given what I understand about MOA-B inhibitors.  

I was not planning on quitting this early, but the two pharmacies in CR that carry this medicine were out when I was in the city.  I do not plan on making another trip to continue the dosage.

Protocol began on May 15th.
Reduced medication by 50% on June 22nd.
Reduced medication completely on August 10th.

So...the experiment progresses.  I am anxious and excited at the same time.

Website updated:
https://www.reverseyoungparkinsons.com/

 

Hi, JDS,

Thank you for your August update. It is great that everything seems to be fine so far. I do hope it stays like that.

Strange that you too have been unable to get any Selegiline. I don't know why there is a shortage of such an important medication.

Take care.

JDS, you`re an inspiration to us all.

Keep up the good work

Redpoppy,

It is not so much that there is a shortage, it is just that the social healthcare system in Costa Rica usually recommends cheaper drugs to citizens.  Some people like me, pay out of pocket, and they keep drugs we might buy in stock...usually.  They just happened to be out and there are only two pharmacies in Costa Rica that carry them...Hospital Biblica and CIMA...maybe also Clinica Catalica...but I didn't check.  These are the private U.S. standards hospitals in CR.

Thanks Jacko for the encouragement...no pharma pill today...so...on the way to seeing what happens...LOL...at least I know for sure I can halve the dose so far with no symptoms on this protocol...So, at minimum, I have bought myself significan delay in progression...meaning, I should already be happy about the results, but I am still hoping and praying for more :)

6 days and no MOA-B...so far, no symptoms.  I am still being optimistic, but also a realist that there is still plenty of time for symptoms to return.

On a side note, apparently Robin Williams had early stages of PD...no one knew.
http://edition.cnn.com/2014/08/14/showbiz/robin-williams-parkinsons-disease/index.html?hpt=hp_c5

 

Such excellent news, JDS ! Let's keep fingers crossed for you. It must be marvellous not to have any symptoms!

Take care.

So far so good...still no symptoms!  I see the doc on Monday.  I can't wait to update her.

I am adding Vitamin k2 to the PD protocol.
http://www.sciencedaily.com/releases/2012/05/120511101240.htm

 

I saw the Dr. :)

https://www.reverseyoungparkinsons.com/protocol-results.html

Hi, JDS,

What brilliant news !!! It really sounds like you have beaten this wretched illness. This will give hope to many young-onset sufferers, although I am not sure whether the protocol would help older patients.

Have your liver and kidneys not suffered at all whilst taking all the tablets?

Take care.

So far, no liver or kidney issues.  I suspect though, if someone was not taking in enough water or not using the detox rotation built into the protocol, then liver and kidney values may suffer....or, if they already have existing liver or kidney issues, then extra care and caution should be followed.

It is a wish of mine that a more advanced PD patient might try the protocol someday and give me feedback.  In the way I understand it...it could at least help drop some of the need for medicine...lower dosage...etc.  ...and maybe even stop progression.  It is certainly too early to say.  I am only one case study.  If I had a million dollars I would be donating it to form clinical trials on this...

My neurologist was telling me about vaccine trials for PD...that removes the protein buildup in the brain related to PD.  ...so that might be coming down the pipe as well.  So far, they have good results.  I understand that the trials end in March, more or less.

https://www.michaeljfox.org/foundation/publication-detail.html?id=515&category=4