Despite All These Positive Developments, I Still Feel Frustrated

[jimcaster]

I read this summary from the Davis Phinney Foundation describing many encouraging developments in the fight against Parkinson’s Disease. Three years ago almost every story would have made me happy. Now I am almost resentful. Despite all the apparent progress, it's taking too long for any of this stuff to actually benefit many (if any) of us. Maybe the "silver bullet" is right around the corner, but the clock is ticking.

davisphinneyfoundation.org/...

[Bolt_Upright]

This looks exciting: Study Explores Therapeutic Potential of Hc-TeTx

parkinsonsnewstoday.com/202...

[Bolt_Upright]

I know somebody who will love this:

Melatonin Attenuates Neuroinflammation by Down-Regulating NLRP3 Inflammasome via a SIRT1-Dependent Pathway in MPTP-Induced Models of Parkinson’s Disease

dovepress.com/melatonin-att...

Melatonin, a hormone best known for its role in regulating the body’s circadian rhythm and sleep-awake cycles, has been shown to decrease neuroinflammation in Parkinson’s. Researchers at Zhejiang University in China report that melatonin, which is involved in several biological activities other than those related to sleep, increases the levels of an enzyme that protects against chronic inflammation and, therefore, minimized neurodegeneration and motor symptoms in a mouse model of Parkinson’s. Results of the study were published in the Journal of Inflammation Research.

mice were pretreated with 10 mg/kg melatonin 1 h before each MPTP injection

So I would need to take 750 mg a day. Interesting.

[kevowpd in reply to Bolt_Upright]

Isn't this somewhat off topic and little bit tone-deaf, given what Jim has said?

[Bolt_Upright in reply to kevowpd]

Yes. I did pull my head out and reply to the topic. But there are good things in the link Jim shared.

[kevowpd in reply to Bolt_Upright]

You might not need a new reply for every single thought?

[Godiv in reply to Bolt_Upright]

Thanks bolt. People swear by melatonin, but I can’t seem to take it; it interferes with levodopa somehow. Oh well!

[Sapeye2020 in reply to Bolt_Upright]

I believe you are 10 times too much, I take 70 mg and weigh 75 Kg

[Bolt_Upright in reply to Sapeye2020]

Thank you! How is it working for you please? Benefits noticed?

[Sapeye2020 in reply to Bolt_Upright]

The ros I have/had is diminished

I used to have constant tight neck, leg and back muscles and now they are much more tolerable. Sleeping is seldom interrupted also.

[Bolt_Upright in reply to Sapeye2020]

Awesome. I have a tight left shoulder but as I have not been diagnosed with PD I am going to put it down to "mouse shoulder" (20 years of 12 hours a day mouse use) for as long as I can. I'm doing 10 mg myself. Seems to have almost stopped my REMSBD.

So the big question: Do you think the melatonin has stopped or slowed progression (if I may ask please)?

[Bolt_Upright in reply to Sapeye2020]

ROS? The "reactive oxygen species" is diminished? That sounds good. Could you please elaborate?

[Sapeye2020 in reply to Bolt_Upright]

I still have tight legs for example, but now when I wake , at 06:00 I no longer have to do my old loosening movements, I just get up , normally and make the morning for SWMBO while she snoozes. I used to lay in bed wonder what pains I will be suffering at what level and how long they would make me not move.

Bolt I am a swimmer by choice, and until COVID-19 I went at least 3 times a week, more when I played water polo, which was a way of getting aerobic exercise after a serious car accident and then a leg alignment and recovery 1 inch of the loss in the accident. Lots of Physio... any way after an hour or more my legs were still tight, no matter what I or the Physio did.

Today I took , well he took me for our regular, daily, morning 1 mile hike on our rough trail. Just a 'Cat track' to be honest. I time it and I can do the upward 1/2 , in 8 minutes or less, BP of 72 today.

the Before Melatonin BP was up to +- 112, had to 'make time' at the lower part then slow down the pace and lengthen the time to my 1/2 way marker, a magnificent Douglas Fir tree at least 3 times my lifespan so far.

This tree is at the bottom of the steepest part of the trail and I now go about another 100 meters, a little hard breathing and sweating but no 100m in <10 Seconds gasping.

Oh, the last 3 weeks all physical activity has to stop at Hi Noon or the 36*C just frazzles you, a repeat of the 2017 fire year.

HTH explains why I take Melatonin

[Bolt_Upright]

I know what you mean jimcaster. I have only been in this group for 4 months, so I have not experienced what you have, but I understand it must be like being on a sail boat trying to reach the horizon. I pray there are good results coming soon.

[Grumpy77 in reply to Bolt_Upright]

February '19 to date counts like two and a half years to me

I can see jim and kev's points... too many false hopes eventually desensitizes one's senses to more of such news

[Bolt_Upright in reply to Grumpy77]

Yes, I did Join HU in Feb 2019. Not the PD group then. I almost died of the flu in Feb 2019 and came out of the hospital with AFIB.

[Bolt_Upright]

UCB0599 looks interesting too: alzforum.org/therapeutics/u...

[delboy381]

I agree with you Jim.

[kevowpd]

I have stopped reading stuff like that. Far too many long shots that never come good. For my money what will move the dial on reducing the number of good life years lost to PD will be something like somatic genome editing. But that is probably 40 years away whilst the tech is perfected and society argues over the morality of it.

In the meantime, exercise well, eat well and live well and remind yourself that it could be worse.

If there's a genuine breakthrough, you won't need to read the PD news sites (or forums) to hear about it.

[Manypony in reply to kevowpd]

Somatic genome editing🤔 THAT sounds interesting.

[Farooqji]

We are at the same point as we were 100 years ago

[PixelPaul in reply to Farooqji]

We’re also over 200 years in since this condition was first identified and we don’t yet know for sure what causes it. Based on that fact alone, I don’t see how we can realistically expect a cure anytime soon.

[Hidden]

This list exemplifies why I keep saying that the most likely only source of help in time for us will be a repurposed drug because the process is 10 years and could be less if expedited in an expedient way and hopefully personalized cell therapy in approx 10 years but only if we get behind trials for it to ensure funding and “support” (aka push) the FDA to help move it along. This is why Cure Parkinson’s and their willingness to pursue repurposed drugs is so important for us.

And why upcoming trials like Mass Generals personalized cell therapy can hopefully help u replenish what we have lost.

There are likely no other rescue boats on the horizon for us. We can hope for them of course. But in all likelihood 15+ years for something that is currently in mice.

[Hidden]

agreed, it sure is always ticking

[Buckholt]

What’s always discouraging when they are testing new drugs or therapies, is the apparent need for statistical analysis or careful mathematical assessment of any motor score improvement. I suppose what we really want is a Big Bang drug so good that you don’t need a calculator to tell you people are just so obviously better!

[Elephantlydia in reply to Buckholt]

It would be great,however to get real results you have to do animal studies,healthy volunteer studies and then the double blind placebo controlled studies this will give us good or bad results(hopefully good results)and hopefully a good balance of efficacy and side effects.A long process but really necessary .If a drug was discovered tomorrow and was so good you don’t need a calculator,you would have to go through the same process.Safety is vital.If you give a patient a placebo tablet it can be up to 40% effective,that can be the power of someone thinking that they are taking a real drug tablet.That is why the double blind placebo controlled trials are so important.

[Bolt_Upright in reply to Elephantlydia]

Your points are good and reasoned, but I watched an interview with Dr Borody (the godfather of RMT) and he was really against placebo arms in testing. He believes, from what I gathered, we should be testing potential treatments against each other in the trials. That way everybody in the trial is getting something researchers believe will work. Not as pretty for number crunching, but a million times more humane.

I saw a 1 year ALS trial recently that had a placebo group. That really made me sad.

[Godiv]

Like everybody else, I agree with you Jim. It’s frustrating. And I read about something that sounds good and then the article say it will go into testing you know like in a year or so and blah blah blah. Our progression isn’t going to wait for that. ☹️

[Elephantlydia in reply to Godiv]

Absolutely right,but necessary.There are many articles on this website saying about home remedies and drugs which have shown promise and hope.But it is essential for people to have drugs or herbal medicines which have been soundly tested in animals and the most important humans using the evidence based double blind placebo controlled clinal trial and the results published in peer reviewed scientific journals.Then we know we have a real advance for the treatment of PD.We all have to have to hope,but drugs and herbal medicines all have side effects and most of the herbal medicines have not been properly evaluated.

[Godiv in reply to Elephantlydia]

That’s a very good point. That’s just my knee-jerk reaction. Potential remedies definitely need to be tested; it just feels like sometimes it takes forever. But I know that the process is important.

[Sapeye2020]

I agree about the time lines for a break thru, it will be many years for whichever you choose, however I take joy about finding much more about Farnesol and that it being researched for over 15 years , all be it not on PD, but in the realm of effects on reaction when ingested or applied to the epidermis.

Without Hope all we have left is Depression. I choose Hope.

[Astra7 in reply to Sapeye2020]

Any thoughts on how to test farnisol? Can you absorb it from essential oils or get enough by drinking lemon grass tea?I agree it sounds very helpful but there’s no time to waste.

[Godiv in reply to Astra7]

I was wondering that too. I wonder what dosage they use and how they’ve extracted it. Because right now you can’t you know choke down essential oils I don’t think LOL. So I’m kind of wondering also…

[Astra7 in reply to Godiv]

I’ll ask in the health food store, although I’ve never found them to be very good.

[Godiv in reply to Astra7]

Thank you Astra. I haven’t been able to find a supplement that you can just actually eat or swallow although they do have like lemon grass tea and stuff like that which is supposed to have it.

[Hidden in reply to Sapeye2020]

Where did you find out info on Farnesol being ingested? Although the “big pharma” breakthrough is a ways out, we still have a constant trickle of helpful information and things we can do. It all adds up!

[Sapeye2020 in reply to Hidden]

CC, It was in a East Indian (HinDani, sp?) site CITED in one and there was a lot of testing for allergic reactions and etc. Did not finish article as on the road for 3 more days...

[Pezo]

I am glad the mice are all doing fine .... meanwhile

[Despe in reply to Pezo]

Yes, those lucky mice. Bass???

As long as org or com exist, no cure in the horizon. What will happen to all their employees and "scientists"? They make a living and a good one!!! Right, Art?

I make NO DONATIONS to organizations like davisphinneyfoundation.org/... or JFF!! Why would they invent the "cure" if profits soar???

Expect old repurposed meds to give what we are all looking for--THE CURE!

[ddmagee1]

Indeed, the clock is ticking, and time is going way to fast, for me!