What are the most promising drugs/treatments on the horizon for PD symptom relief,slowing progression?

[Jmellano]

I see Buntanetap,Celeste light therapy and Cue1 as potentials. anyone have any thoughts? i dont know how much longer I can hang on.

[LeharLover62]

Same here, I was just mapping this out and wondering how long hubby can make it as well.

Also there’s Ambroxol as a possible depending on your genes. And one more I am following that is phase 2b called Neflamapimod (more for Lewy Bodies but hubby probably has that. )cervomed.com/pipeline/

Cue probably can be gotten sooner than the others?

Doesn’t seem like exenatide is gonna work.

[jeeves19 in reply to LeharLover62]

DBS?

[Jmellano in reply to jeeves19]

I believe dbs helps those who are tremor dominant. I have no tremor

[jeeves19 in reply to Jmellano]

Possibly. But you never know. What have you got to lose?

[Jmellano in reply to jeeves19]

I drew the line on taking drugs.. not sure I want to entertain brain surgery yet

[LeharLover62 in reply to Jmellano]

Or maybe you would be able to do the FUS procedure? (No brain surgery) hubby can’t do any of these because of his cognitive state.

[Jmellano in reply to LeharLover62]

There is something about FUS that disturbs me; perhaps it mifght benon reversible if it doesnt work…

[drumhead]

also KM-819 in phase II is promising but i try not to get my hopes up too high for phase II-a ways to go. fingers crossed on buntanetap and pluripotent stem cells.

[JohnPepper]

Why are you looking for a drug to reverse your PD symptoms? There is no such drug available. There is a way for everybody to do that and that is by WALKING FAST FOR A MAXIMUM OF ONE HOUR, EVERY SECOND DAY!

If you really want to get better and are prepared to put in the effort to acieve that goal then first of all, stop looking for a convenient pill to put into your mouth, it does not exist!

What does work and has worked for me and thousands of others is oing REGULAR FAST WALKING! It costs nothing and, even if youy don;t particularly like doing it, just tell yourself that it is going to REVERSE YOUR PD!

I was diagnosed in 1992 and only started the walking in 1994, but by 1997 my PD movement symptoms had disappeared!

You will definitely think that yoiu will never be able to walk fast for one hour, three times a week. You are right! I was only able to walk fast for less tha n a minute, when I forst started to learn how to do the fast walking.

THE RULES

1. Do a warm-up exercise, either by walking, without pushing it, for at least five or best, ten minutes.

2. Then, see how long you can walk at your fastest possible rate, pushing yourself to the LIMIT, then STOP., and COOL-DOWN and have a shower. Make a note of how long you were able to walk fast!

3 Every second day, repeat the above, for EXACTLY THE SAME TIME YOU TOOK ON YOUR PREVIOUS WALKf and after each walk, make a note of where you got to on that walk!

4. Walk for that time for TWO WEEKS, EVERY SECOND DAY!

5. At the start of the third week, walk for five minutes longer than you were doing the previous two weeks!

6. Keep a written record of your time fand distance achieved for each walk.

7. After three months of walking fast every second day then look to see how the DISTANCE HAS IMPROVED ON EACH WALK!

8 After one year you will already have reached the maximum time of one hour. NEVER WALK FAST FOR LONGER THAN ONE HOUR UNLESS YOU ARE TRAINING TO BE A LONGDISTANCE WALKER.

9. That record will tell you how much better you have got and your doctoir will gtell you how much healtghier you are.

10. Need I tell you more?

[Jmellano in reply to JohnPepper]

I have your book. I am not in favor of drugs, however this disease is wearing me down, I used to be an athlete (dancer,cyclist,racewalker), I continued my exercise program well into my parkinson’s honeymoon. I also did Rock Steady Boxing for several years which I believe is the best weapon we all have to fight this beast called Parkinson’s. unfortunately the disease symptoms have taken so much from me. The fatigue is so bad , that sometimes I can hardly stand for more than a few minutes, let alone walk, one thing I have observed with this disease is that everyone reacts differently or doesn’t react at all to therapies and remedies. What may work for some does not work for others. Symptoms vary from person to person. One other thing I have learned… we need to walk a mile in each other’s shoes.

[JerMan22 in reply to Jmellano]

Hi, Jmellano. I won't go into my long and somewhat boring 'journey'. Instead, assume that I've done similar things that you have tried. I admire you for having stuck to your belief that "drugs" aren't the answer and that exercise is still the only thing that's helped. Have you considered investigating why (in your words) "The fatigue is so bad, that sometimes I can hardly stand for more than a few minutes, let alone walk," by looking at resources that are not specific to PD? In other words: you have a fatigue problem, so maybe you need to look towards solutions to that in a much larger community that informs about fatigue and hundreds of other things that affect humans and not just humans with PD.

You see, one thing that I've noticed is that PwP often think of themselves as very unique: "I have PD so my solution to any problem or roadblock must come from other PwP or PD specialists."

I've found, however, that the solution is sometimes available in information from people who don't have PD. Fatigue is a prime example of this. At the risk of being flippant (you might have already done this), go to Youtube and search for "fatigue", "mitochondria", and "chronic inflammation" and see where that leads you.

Ask the right questions and your search might even lead you to a better understanding of PD; it's considered to be an inflammatory disease of the brain, but then why doesn't PD and its inflammation go away as many other diseases do? Why do we see more and more chronic inflammation in more and more people (not just PwP)? Is diet to blame? Insulin resistance? Environmental toxins? What do we need to eat to help our various systems minimize toxins (for example), repair brain damage, and build new mitochondria etc. etc.

Good luck and please share if you find anything that helps!

[Jmellano in reply to JerMan22]

@jerman22 my neuro believes that my fatigue could be exacerbated by sleep issues, blood pressure issues or depression. I was tested for sleep apnea, no problems there, blood pressure, I was tested at NYU Lnangone in NYC using a tilt table. test showed I may have a failing baroreceptor which could have resulted from radiation i had in 2007 for tonsil cancer. Most likely it could be depression related as I am profoundly depressed. i have also had my blood tested for iron, Epstein Barr and Lyme disease (I live in eastern Long Island. i am getting talk therapy, and i was so desperate for relief from the fatigue, that i have taken many antidepressants, each for at least 6-8 weeks, all to no avail.

[jeeves19 in reply to JohnPepper]

11. Book yourself into the nearest asylum?

[Jmellano in reply to jeeves19]

That works.

[JohnPepper in reply to jeeves19]

What? And be stuck with someone like you, who thinks everybody else is mad! Look in the mirror and have a goos look at yourself and ask yourself, 'When I meet my maker, is he going to be pleased to see me?'

[jeeves19 in reply to JohnPepper]

When YOU meet him you’ll undoubtedly tell him that he wasn’t walking fast enough to ‘reverse his symptoms’. 🤔

[JohnPepper in reply to jeeves19]

I only specify one measurement relating to spead and that is:- WALK AS FAST AS YOU CAN! Only the patient knows that! Some people are simply unable to walk flat-out. So, they will never be able to produce GDNF and reverse their PD. That is LIFE!

[jeeves19 in reply to JohnPepper]

And I don’t think everybody else is mad, just you.

[healthabc]

you can sign up to be in the next Celeste light therapy trial, its a stage 3 trial. Thats what I did.

[Jmellano in reply to healthabc]

My mds from mt sinai said sinai is going to be a part of trial 3 and he will work on me participating, but I do want to apply on my own. Is this done at clinical trials.gov?

[Canddy in reply to Jmellano]

Dan Adams

Science Officer

M 801.494.7804 O 801.770.696

[e-mail]

photopharmics.com

This is who I have been communicating with regarding the Celeste trial. Photopharmics is the sponsor company of the device and trial.

[Jmellano in reply to Canddy]

thanks, i have traded emails with Dan in the past.

[healthabc]

I dont know, I just went to the website & signed up.

[realk]

And what about B1 theraphy? I am now planing go to start and If it does what it is supposed to do I will be happy enough . Sometimes the simplest thing is the most effective.... I have read somewhere that especially Parkinson's patients are more likely to be influenced by the price of the medicine in the way that the more expensive the better is their response.

[Jmellano in reply to realk]

i have tried B1 with sublingual tablets, it did nothing for me.

[realk]

how long u have been using it? have you tried also another forms as Thiamine hcl or IM?

[Jmellano in reply to realk]

I DID FOR ABOUT 6 MONTHS, HAVE ALSO TAKEN VITACOST 500MG