A long wait

[DianeJ]

With the arrival of a vaccine for the Covid virus I am struck by how long people with parkinsons have been waiting for a cure. The drug companies have accomplished an amazing feat in a short period of time. Surely more progress could have been made in 200 years. What needs to occur for real progress to occur? Think of all the treatments that have advanced a wide range of illnesses. There must be a reason we are on the back burner.

[John_morris71]

One of the reasons is the neglect of Central Nervous Systems Diseases (CNS), both by the Govt. and Pharma industry all these years. Cancer got its boost in the War on Cancer initiative in the 70s during Nixon period and a second booster ' Moonshot' during Obama. Same with heart disease and the importance to address that one. Funding in billions of dollars poured in during all the years and helped in research and development, leading to some major advances. Sadly, CNS diseases were never a top priority and only recently has the govt. realized - how it can bankrupt nations in another 20 years as more and more get older affecting not only them but their care takers which has a cascading effect on the economy.

[park_bear in reply to John_morris71]

Another part of the problem has been the vast amounts wasted on trials for treatments against amyloid for Alzheimer's. Amyloid is a response to pathogen attack and is most likely a result rather than a cause of Alzheimer's.

[rescuema in reply to park_bear]

But had it not been for such "wasted" research, we wouldn't have figured that out about amyloid. Any in-depth study of what causes neurodegeneration in the elderly would help and be applicable to the majority.

[park_bear in reply to rescuema]

Failed phase 3 trials are a very inefficient way to conduct that sort of research, particularly when you already have dozens of experts who believe otherwise:

ncbi.nlm.nih.gov/pmc/articl...

[rescuema in reply to park_bear]

I understand where you're coming from but there are always polar beliefs between the pool of field experts and I'm sure there was a reason to conduct further research after imperfect trials, whether due to inefficient designs, variables, inconsistent findings, etc.

[park_bear in reply to rescuema]

I never said not to conduct research. What I said was that failed phase 3 trials are an enormously expensive and inefficient way to do so. As consequence of these failures, numerous major pharmaceutical companies have abandoned or cut back neurology reasearch, which is not good for anyone, particularly those with Parkinson's:

labiotech.eu/brain/neurosci...

"Over the last decade, big pharma has become disillusioned with neuroscience research. Eli Lilly, Amgen, Pfizer, GSK, AstraZeneca and Bristol-Myers Squibb are among the multiple major players that have shut down or reduced their research in this area in recent years."

[rescuema in reply to park_bear]

We do wonder why so many trials tend to seem ill-designed and pointless at times, but certainly not just limited to neuroscience field. It seems they concentrate on potentially finding blockbuster drugs or wasting salary/budget to keep the giant machine purring.

[DianeJ in reply to John_morris71]

Thank you for your informative response. Hopefully CNS disorders will be given the importance they deserve.

[John_morris71 in reply to DianeJ]

I sincerely hope so and that everyone tries to stay strong, positive - both mentally and physically to the possible extent, while looking ahead; for, if and when the cure comes, rebounding from this disease should be quick and easy for a already-tuned body and mind. Given the advances in technology and R&D, no surprise if there is huge advancement in the next 5 to 10 years - more than what was achieved in a century.

[GymBag]

Kind of like comparing apples and eggs.

Covid is a stinky little virus, not even alive.

PD in truth there are theories that make us feel more in control, but we actually really have no idea why it starts. It could be too many dill pickles ( not likely but it could be ). many millions spent on PD research on what is a fairly small percentage of mankind. Plus PD does not cause any deaths, just try to get PD as a cause on a Death Certificate.

I share, your pain, but sometimes reality sucks.

[rescuema in reply to GymBag]

"It could be too many dill pickles ( not likely but it could be )" - LOL

Hey, it very well could be possible, especially when it could be covered in preservatives, pesticides, glyphosate, clostridia, molds, cause electrolytes imbalance, etc.

[alaynedellow]

As gymbag says it doesn't kill. In uk treatment for thyroid is free (it kills) PD not free.

[Hidden]

I dont think whether or not it kills is super relevant. Loads of stuff kills that hasnt been cured or cant be effectively treated on a consistent basis. Pancreatic Cancer. ALS.

I dont think PD is on the backburner. There is significant ongoing investment. But it takes time, firstly for the simple reason that it moves slowly.

[Patrickk]

At last, they are finally getting around to third stage trials on this -- stopped progression cold in initial trials.

[cut-and-paste]

Bydureon, a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on for 10 years and it has been positive every time.

scienceofparkinsons.com/201...

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to Bydureon.

scienceofparkinsons.com/201...

cureparkinsons.org.uk/news/...

[rescuema in reply to Patrickk]

Are you taking Bydureon? It seems pretty much all of your posts are about promoting the Bydureon/Exanatide or is this a spam account?

[Patrickk in reply to rescuema]

I took Bydureon for five years before going into remission on Type II diabetes. Do you see those TV commercials that promise to up your insulin, slow your digestion (to slow sugar spike) and maybe you will lose some weight. I lost 50 pounds in 50 weeks without effort on the old, twice a day version of Exanatide (Byetta). Still had 50 to go -- but that came later in the usual way. Kept my A1C very low meantime.

I was very happy when diagnosed two years ago that a halt to progression was in the works. I'm trying to let everyone else in on the good news.

Too bad doctors won't lighten up and prescribe it ahead of time, before trials finish -- as it is a repurposed drug that millions have used safely -- and people's brains are melting now. My hint at the end is a way to get it legitimately -- "indicated" is the doctor's word.

[rescuema in reply to Patrickk]

Try Berberine - it's a powerful supplement to help with blood sugar control, insulin resistance, and shows anti-neurodegenerative activities. It is exceptionally effective, but anyone attempting to use it should monitor their glucose, fasting and postprandial. Of course, controlling IR with exercise and increasing muscle mass takes high precedence. If your arms and legs feel like Pillsbury doughboy, therein lies the first issue to correct in addition to correcting the diet.

ncbi.nlm.nih.gov/pmc/articl...

healthline.com/nutrition/be...

[Zardoz]

The disease is much older than its description in an essay by Dr. James Parkinson in 1817. It has been described in ancient texts in India, for example, and treated with natural plant sources of levodopa like mucuna pruriens.

Given the increasing burden that it will impose on economies, especially those with aging populations, it would make sense to organize a concerted effort among nations with 1st world research ability toward a cure. Share information rather than compete, as in being the first to come up with a Covid vaccine. Billions in health care costs could be saved.

I have little confidence in a solution coming from a pill. The disease is too complex. It needs three aspects; something to halt the progress of the disease, something to repair the damage done and something to put back dopamine producing cells.

What seems promising right now is stem cells entering the brain with the assistance of something like ultra sound to temporarily open the BBB.

[DianeJ in reply to Zardoz]

Thank you for your informative response. Hopefully someone will take more interest in this mysterious illness so we can all benefit from their work. I know that some real progress is occurring in Alzheimer’s. Dr. Stephen Salloway is a local neuro leading the way. From my mouth to God’s ear.