I think I may have previously posted some of this story
My first Neurologist was a brilliant doctor and brain surgeon and expert in the cardiovascular system. He was head of cardiology at a world class hospital and known around the world. My M.D. went to school with him and they were good friends so I was granted an appointment in which he diagnosed that I had Parkinsons. I was able to meet with him 6 more times in six month intervals before he suddenly died.
He told me the following in our meetings which he allowed to be generously long with much two way conversation.
The medical associations ,colleges and universities around the world at various times had generally agreed on protocols for treating Parkinson's in the 1950's and 60's.
1/ Alcohol, and antihistamine, and other things had been used to treat PD before Levodopa. The beneficial effect reduced over time and quantity used. It was agreed that the use of alcohol , tobacco, cannabis and antihistamines would not be prescribed because the potential for damage caused by these substances outweighed the usefulness.
(If you are going to your daughters wedding dance, have a drink beforehand and one during ,you will be amazed. It only works if you normally dont consume a lot.)
2/ There is no pain associated with PD . Pain is not the concern of a neurologist but is the field of concern for the General Practitioner.
( pain medication is not paid for or compensated for by many government health plans and insurance companies and can not be used as reason for assisted suicide etc. and puts it lower on the list of government research grants ) This is still taught and in text books.
3/ You do not die from Parkinsons. You die from complications of pneumonia.
(Doctors will not include it on a death certificate and funeral directors will not list it as the cause of death in an obituary. No statistics = no support from governments )
4/ PD is a movement disorder (that is all )
(He said some day what we call Parkinson's will be identifies as 10 or 12 different diseases each with their own treatment )
My neurologist did not agree with any of it, but he said someday it would be all put right.
could this be why we seem to be banging our head against a wall.
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Gymsack
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I think we feel like theres no progress because we want to believe its a 25 year problem. In my mind its more likely a 75 year problem, and we are about 22 years into it.
The LRRK2 mutations were only discovered in 2004. Not even 20 years ago. In 50 years time these mutations will be programmed out using the then equivalent of Crispr-cas9.
The continued discovery of genetic predispositions and the further development and eventual regulatory approval of the technology required to correct or eliminate them is what will solve the problem to the extent it can ever be solved.
You are correct. I am on the leading edge of the "Boomer" generation. A group with some characteristics that were dominant and one was the need for instant gratification. Not a justifiable trait.Example: You moved into a new house, well why plant a seedling when with a few thousand dollars and some heavy equipment you can plant a full grown tree. It is of course natural to want to see the results but it is more important that we at the least plant the trees. I guess we are doing some of that. It is hoped that every dollar invested, every mile walked and every study participated in will pay off eventually.
It is easy to become disappointed or impatient as I endur and difficult to continue to work towards a goal that I will not see the result.
You are very wise kevowpd. May be at one time I was also. I dont have the ability to step back and ponder any more. This is a very insidious disease that robs you very slowly of both physical and mental skills and it is obvious that it is the time for others to make these posts. I have been reading many interesting, well written and entertaining and knowledgeable posts from the new people in the last six months and I will continue to read here and watch the things we planted grow . I suggest that all the new people read the old posts which you can find in the "Search health unlocked " In that way a lot of very intelligent and hopeful fellow people with PD, many no longer here, can pass their torch.
You're right of course. Wouldn't really recommend smoking with its own set of horrors. Wouldn't have minded delaying the start of this for a time though. Maybe that will be an option if/when they can predict likely candidates.
And while I'm having a rant 🙃. How many potentially promising treatments have fallen by the wayside because they didn't work for enough of the study cohort, so statistically didn't show an effect? My neurologist rolled his eyes when I questioned my previous flu as being contributory saying there are lots of theories. Not good enough.
I've seen that in other conditions too. ME/CFS (chronic fatigue syndrome) is a multiplex of a few conditions. A Hopkin's lab found a drug that FIXED it for about 20-25% of patients. They were closed down, couldn't get grant money, because it wasn't for a high % of patients.
It's a miserable condition. If you can fix 25% with a well tolerated drug, it's a huge deal.
The Doctor gave some Good advise: There are already different classes of PD. Any pain relief from C/L is secondary. The pain was relief was treating another condition of a sick brain. Maybe, you also suffer from Fibromyalgia. Your sick brain needs fuel which can only produced with aid of B1.
I will try B1 again, and perhaps with a little more enthusiasm. I gave it two good tries . One thing bothers me. The forum is full of discussion regarding B1 but where is Royprop.
If anyone would be first to develop side effects, I think it might be him. Our canary in the mine.
Whilst apparently now it takes 4 months to experience the benefits of B1, Parkbear recently posted a quote from Dr Constantini's "trial" in which there was 100% success in 3 months
"Results: Thiamine treatment led to significant improvement of motor and nonmotor symptoms: mean UPDRS scores (parts I–IV) improved from 38.55 to 18.16 (p = 2.4 × 10−14, ... within 3 months and remained stable over time; motor UPDRS part III score improved from 22.01 to 9.92 (p = 3.1 × 10−22). Some patients with a milder phenotype had complete clinical recovery"
Roy left in a big huff. He had taken to posting "baiting" posts about the "China virus" and general right wing politics, and when the moderators asked him not to he sulked off posting that he wouldn't be censored. I'm not sure how much you missed but he was clearly struggling badly with his PD and had a series of posts doubling his C/L, I think to 1500mg levadopa a day, and stopping, then restarting B1 at over 4000mg a day He posted that during the last 2 years his updrs had gone from 28 to 38 (he was 28 6 years post diagnosis). Subsequent to that he announced he had skin cancer with only a 20% survival prospect
Hi Gymsack. I have been reluctant to accept that the medical world is not interested in finding cures for illnesses thaat don't kill us. They make far more money out of treating those illnesses. For the past hundred years, at least, they have supposedly been looking for a cure for the common cold, but because it does not kill us, I doubt that they have really tried.Something that backs up this assumption is that within months of the start of the Covid-19 outbreak, they had a vaccine already. Isn't that marvellous?
If Pd killed us, they wouldm have found a cure, long ago!
Thanks! Some people do not like others to know about the only way known so far, to reverse Parkinson''s. They think it is all about ME. But, I am only the messenger. We should get our priorities right. If this is the only way I can get this message across then why not use it? However, I will leave this thread, as it is full of people who have other agendas.
Thanks Gymsack. I like the comment about «some day what we call Parkinson's will be identifiesd as 10 or 12 different diseases each with their own treatment ». It echoes the comments by Dr Alberto Espay. youtu.be/vzX-ME0gd9E
I am 75, and have had PD, and Cerebellar Ataxia, for a number of years! Where I live, palliative care, from both my neurologist, and family doctor, perhaps, determined by Medicare rules, seems to be their mantra, in providing my care! This is NOT the way I want it! Seeing the Docs, for 10 minutes consultation, once or twice a year, with very little actual physical examination, basically primarily just talk, does not help me, at all, in getting help dealing with how to handle, progressing PD and Ataxia symptoms! Years ago, when I lived in a big city, as a younger, working man, we had a neurology clinic, at the Cleveland Medical Complex, where nurses, Docs, therapists, and others, helped patients, including me, to deal with balance and mobility issues, and practical living, for those with Ataxia, and neurological symptoms. Thus, I am not in sync with this palliative, ‘throw away’ type of patient care, that is being practiced, where I now live, and, probably, many other places, in the USA. We are experiencing a time, in our Nation’s history, where little respect is given to many elderly people, in general, so this attitude, of taking a palliative approach to elderly people suffering from PD, and Ataxia, and other diseases, that elderly are prone to, does not sit well with me! Therefore, I’m so thankful for the advice, and help I get here, with this wonderful blog, Health Unblocked. I feel the support, of others, with PD, and Ataxia, who care, for each other, and genuinely want to help fellow sufferers, of these cruel diseases! Thanks to contributors, moderators, caregivers, and all who participate in this HealthUnlocked.com forum!
That’s the way it is with me, too! I need the C/L RX. To add insult to injury, due to Medicare’s deductible rules, I pay for the TOTAL Doc’s bill, when I see the Doc only once or twice a year!
The clue words there are ‘ didn’t listen ‘!!! My son-in -law is a hospital physician! When he graduated from Medical School, I advised him that, in my opinion, listening to patients, and their perceptions, would prove to be a valuable tool, for him to use, in his practice of medicine! He has thanked me, many times, for my sage advice! It has been my experience, back in my younger years, especially, that the Docs that gave me the best care, were the ones that listened to me, explaining my concerns, and perceptions, on whatever it was, that was a medical/symptom problem for me.
I can't fire mine (I go where the VA sends me). I like my MS (she's a professor at a Med Collège here, ( 9 times out of 10; never heard of it, if it makes you feel better go for it)).
In which case he has seen thousands of PD patients and has likely heard it all and seen the consequences of it all. Theres a chance he knows what he is doing.
Well, his tricks don't work so great either, believe me. So, I blame the disease mostly, but it would sure be nice to have a Dr suggest other ideas than just up your dose all the time, making the side effects out of control as well. You must be on my husband's Drs payroll lol.
The Doc has prescribed Sinemet, for PD, and, propanolol, for blood pressure/heart symptoms, and Ataxia symptoms! They both help, so that my life is a bit easier.
“Their words had forked no lightning”, and “ How bright their frail deeds might have danced, in a Green Bay” jump out at me! Thanks so much for sharing! My granddaughter is a published poet, and editor. I think I’ll share this beautiful poem with her!
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
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 getting Bydureon.
South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.
Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.
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Cure for Parkinson's - neverending story 
