Parkinson's Disease Tulip


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Old 12-14-2019, 02:42 AM #1
ol'cs ol'cs is offline
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Mad Hi THERE!

[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
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Old 12-14-2019, 07:57 AM #2
JoClay JoClay is offline
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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!
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Old 12-14-2019, 12:27 PM #3
johnt johnt is offline
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Good to hear from you both. John
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 12-14-2019, 01:25 PM #4
soccertese soccertese is offline
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Quote:
Originally Posted by ol'cs View Post
[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.
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Old 12-14-2019, 05:36 PM #5
ashleyk ashleyk is offline
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Default Hello! Where have you been?

Great to hear from you. How are you doing?
Don't give up hope yet, see this next post.
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Old 01-08-2020, 09:07 PM #6
ol'cs ol'cs is offline
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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
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Old 01-09-2020, 10:52 AM #7
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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.
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Old 01-09-2020, 09:25 PM #8
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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
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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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"Thanks for this!" says:
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Old 01-10-2020, 10:31 AM #9
ashleyk ashleyk is offline
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Default How have yoy managed?

Hi Ol'cs,
I believe we both joined this forum in 2006. You, actually with PD and my wife with PD, Dx in 2003? My wife is in an advanced state of PD now with psychosis being her major problem. She has been unable to remain in assisted living because of the psychosis and now has 24/7 home care. She has lost most of her liquid assets for care.

I see from your post that you still write very well. I guess my question for you is how are you doing now and have you done anything over the years to slow down PD progression?
John
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Old 01-21-2020, 05:02 PM #10
ol'cs ol'cs is offline
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Default a few things to go over

i have the "rigid" type of PD, ie., not to much shaking, but moving is very difficult at times. my major complaints about PD are not as debilitating as a lot of "shakers" have, just different. i learned after 10 yeras that i was not going to die because of PD buttinstead I'll die with PD. This is an important aspect of of our disease because many people find that during the first few years after dx, that they are depressed and morose because of all thar they have lost and are losing, jobs, careers, mates and a whole lot of other things that "defined who they are". The first medications may make things worse, but going on sinemet is not a "horrible alternative. even after 22 years it still works for me because i don't take the dose that my neuro suggests. You must find the proper meds and dosing regimen to treat your PD by yourself, and not always just have blind faith in your neuro, and don' take any s--t from them, If a certain agonist is messing with your psyche, STOP taking it and try something else L-dopa is still the "gold standard" for allieviating some of the symptoms if PD, it works fantastically foir most, but quickly becomes intolerable or loses it's effect. for.. Remember to forget that you even have PD, do your best to not let it ruin the rest of your life. Personally .I lost my family, my job. my friends) frombeing overly depressed and angry with this disease. Exercise is key to help and keep fit, but overdoing it will show up the next day, but can Put you in bed" the next day, in other words , vigorous excerise is not for allll of iu. eventually you will get to the stage where you might have chronic pain, bad dyskinesia and dystonia,, or gait problems, where you just can't stop falling; when you get to this state, excercise may be cotraindicated, but always at least TRY to keep moving or you may get worse, quicker. Protein meals will often nullify any "on" state that you may be in because the blood becomes saturated with all the amino acids form protein digestion , and they will compete with each other for brain uptake, and thus lower the absorption of any amount of sinemet that is currently in your bloodstream. for people who have been on sinemet for a long time, this may lead to a rapid, intense "off". when i have an intense "off" period, I have to watch closely what i am doing. I have "fallen" into tight spaces and because of muscle flaccidity. i can barely extricate myself from the awkward position i am in.A few times i have lost most muscular control and was in a dangerous spot with sharp things sticking into some part of my body, giving intense pain and tissue damage, so try to make the environment around you as safe as possible to avoid these events fom happening.
Sometimes we need to be "on" for a doctor or other appointment and take too much sinemet. THis lowers blood pressure and you can almost, or do pass out. I term this the "deathies" because you think that you are dying, it is quite scary, so just take it easy afterward, if you are prone to this kind of event. Since PD is slightly or significantly different for every one of us, I can only relate my experience, and as you read this yoiu may be thinking that i am not relating too your experiences well. Just remember that i have had PD for a long time now, and PD changes with age and relative physical condition. Once you can accept your limitations,, and get your meds right, you WILL have good days and bad ones. WE are like candles in the wind, sometimes burning brightly, and other times blown out. All of this not a comprehensive post,all has been said before, i just don't want anybody who missed ceratain things (especially those who are new to pd, from making some of the mistakes that many of know so well). Again. i implore you to use your "honeymoon" period well and not to "blow it" with your important relationships, try and be nice, even if yopu feel like S--t. That's all i gotta say
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"Thanks for this!" says:
jeffreyn (01-21-2020), johnt (01-21-2020), made it up (01-22-2020), soccertese (01-31-2020)
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