[ol'cs]

[CODE]my monicker is ol'cs, some of the "older’ PWP may remember me. I have posted here and at the " old " braintalk site, for 22 years now. I just wanted to say that a
"silicon chip" could be next wave of PD amelioration..l wish that I had the references for the neurnal network for the modification of neurons, however I can't post anymore without a great effort,,,, so scuze , I'm older now, and couldn't be bothered by thinking of a cure ,now. I sincerely hope that I am one of the last generation to be struck by this monster of a disease!
Amen

[JoClay]

Glad to hear from you....it's been a long time! As hard as it is to post, glad you were able to let us know you are still able to do so. Happy Holidays!

[johnt]

Good to hear from you both. John

[soccertese]

Originally Posted by ol'cs

[CODE]my monicker is ol'cs, some of the "older’ PWP may remember me. I have posted here and at the " old " braintalk site, for 22 years now. I just wanted to say that a
"silicon chip" could be next wave of PD amelioration..l wish that I had the references for the neurnal network for the modification of neurons, however I can't post anymore without a great effort,,,, so scuze , I'm older now, and couldn't be bothered by thinking of a cure ,now. I sincerely hope that I am one of the last generation to be struck by this monster of a disease!
Amen

i keep watching the movie "YOUNG FRANKENSTEIN", hoping they'll add a sequel and i'll be able to sneak into that lab and try to regenerate some dead tissue in my brain. just kidding. too bad michael j fox had his television show cancelled, having a weekly sitcom that could be simultaneously funny and educational about pd couldn't hurt.
when i was first diagnosed i bought a device where i attached electrodes to each ear an applied a tiny current. the maker of the devIce didn't plan on pd'ers using it if i remember correctly so he was making an educated guess as to the settings. i didn't notice any temporary improvement and gave the device away. i tried a lot of stuff, chelation therapy to try to remove mercury, i had all my mercury containing amalgams removed, i think 3, because they were starting to wear out and had dental insurance which would pay 100% for the removal which was about to expire, it was cobra coverage from my former wife. i had the amalgams removed and a few days later my pd symptoms were 25% worse. a google search on parkinson's and mercury listed thousands of hits so i decided to try to remove HG, hadn't done a urinalysis on metals but went ahead anyway. underwent iv chelation from a MD, felt a little better after each IV for just a few hours, the MD had never treated anyone with pd but was certain the IV's would help. a friend had been a patient at this clinic for treatment of fibromyalgia and said she was doing better but was going to have to keep up with the iv's indefinately, and at $150/week and no idea if they would help i searched for a protocol where i could use cheap chelating agents and do it myself. i found the ANDY CUTLER protocol, CUTLER said he had a PH.D from the university if wa, had written a book that i could buy and lived nearby. i paid him $150 for a consult, he thought his protocol would help me, it was used by autistic patients and message boards for people using his protocol had lots of success stories. anyway, the protocol called for 2 sulfur containing chemicals, 1 reQuried a RX which my neuro wrote out and the other chemical was alpha lipoic acid. the protocol was to use the first chemical to remove mercury from your body tissues so when you started to use ALA the ALA which enters the brain could not pull Hg from your tissues into your brain. you'd use the first drug for 2 weeks, every 4 hrs, night and day, then measure Hg in your urine to decide if youcould switch to ALA for another 2 weeks. i might have some details wrong but i quit after 1 month. to say the least, it was exhausting. i didn't get any better,no way to say if it kept me from getting worse. also tried IV GLUTATHIONE, had a local compounding pharmacy mix it up, dr. wrote rx's for syringes, a nurse friend helped me "push" the mixture into my vein. no benefit. also tried low dose naltrexone, all sorts of supplements. the only thing that i did where i felt better, usually for only a day, was vigorous exercise. after playing 90 minutes of soccer i felt like i didn't have pd. i quit playing soccer 4 years after diagnosis at 52, was getting charlie horses during the game and risked tearing muscles. back then pd'ers were trying all sorts of alt-meds, but now hardly see anyone posting about trying anything except the HINZ protocol and exercise. sorry to reminisce, miss the good old days, when i was first diagnosed, a cure seemed to be just around the corner, phase1 gdnf trial had fantastic results, a dr. levesque at cedar sinai had implanted autolgous stem cells in 1 patient with good results and was gearing up for a larger trial. unfortunately he never got funding for further trials.
https://www.businesswire.com/news/home/20040623005280/en/Renowned-Medical-Research-Pioneer-Michel-Levesque-M.D.

[ashleyk]

Great to hear from you. How are you doing?
Don't give up hope yet, see this next post.

[ol'cs]

Themore that things change, the more they stay the same same. There were a lot of heat ed arguments around here about therapeutics and outcomes of compounds and devices to stop or attenuate the symptoms of PD, and much of what is archived here is not the truth. The fact is, that despite X-years of PD research, the only usful drugs are few, and devices such as stem-cells have not been fully investigated.
However, it is what it is. There is no way out of here, for the highly advanced PWP. Unlike Alzheimers whiich is a full or partial atrophy of nearly all structures in the entire brain, PD is caused by a loccal atrophy which may or may not affecf the activity of certain brain regions, just loss of motor neurons in the basal area of the brain which can lead to more global involvement .
Sad to say, the "new" drugs that have hit the market are all mixtures, usually with some fporm of L-Dopa being the main ingrsediant, compounded with long realease amantadine or other delivery forms of l-dopa that i.m too disgusted with them to even mention them Hundreds of people have tried hundreds of "devices, from injections of glutathione tothe use of electromagnetic field exposure;. There's the same old "new" MAO2 inhibitors, COMT inhibitors, etc , and of course we are never allowed to forget the "bright future of PD research" that the intensely dishonorable "dopamine agonists" offered to us, that screwed with a lot of our minds. sorry i can't keep typing but there is more to this story of the scientific failure imho. ol'cs

[soccertese]

i agree that it's taken way too long for the "cure". one problem though is getting enough patients to volunteer for trials and still not being able to identify pd early enough before symptoms appear, i.e., no biomarkers. young pd'ers who still work and have children are likely to avoid the risk of experimental treatments requiringbrain surgery unless there is more certainty that the treatment will work plus the chance you'll get the placebo andhave to wait 1-2 years for results and then undergoing a 2nd operation. plus there is DBS which can be something like a "cure" which must be deterring volunteers.

i monitored the trial in new zealand where they implanted pig brain cells into humans, almost 2 years after phase2 results and there might have been a small benefit. there's been at least 6-7 unsuccessful trials implanting genes, cells, compounds like gdnf, all requiring brain surgery, where phase2 showed no sig. benefit. it looks like implanting genes that make l-dopa into the brain might be the first successful disease modifying treatment, i apologize if i'm wrong on that statement.

i don't object to companies making better versions of old drugs or even new drugs that are longer lasting/less side affects, just object to how expensive they are. and then adding insult to injury having the price go up and shortages of C./L. Having TEVA stop manufacturing C/L was a real loss. The supply chain is getting too dependent on INDIAN mfg's producing most of the C/L we get and raw ingredients coming out of china. Just recently i can get MYLAN 50/200CR after 2 years of being unavailable. I have to wonder how much better we would be if generic mfg's had to prove their product worked as well in pd patients as the brand name rather than just measuring blood levels of the active ingredients in healthy volunteers.

[johnt]

14 years post-diagnosis and I'm optimistic about my PD future.

That's not because I think that a cure will be found in time to help me. It's not because I think that big-pharma will start doing the right things for the right reasons. It's not that I think I will get better care from the medics. No, I think that I'm able to better manage my day-to-day problems than I was.

For instance, I've never had any dyskinesia. I put that down to a drug regimen which reduces the magnitude of the changes of levodopa and equivalent levels during the course of the day. This means smaller, more frequently doses, and longer half-life meds. (5x75 mg Stalevo, 8 mg ropinirole CR, 1 mg rasagiline

For many years constipation was my worst PD symptom. Last year I found a way of reducing its effects greatly: water enema, macrogel. This allowed me to travel to Canada for the first time in 6 years.

Last, but not least, I walk, and I walk ...

To be clear, I don't think that these techniques will work for everyone. No, of course they won't. But, I think that most of us could find something that, if only temporarily, made our life better.

John