Let's hear from long term survivors

[johnt]

I think there could be much to learn from long term survivors of PD.

Could there be a common set of factors that link them together?

Please let us know your stories.

John

[Ronhutton]

H Johnt.
You don't define what you mean by long terrm, but I would surgest
20 years as a border. Why, because it just lets me in!!
I was diagnosed in 1991, with a tremor down my left side.I knew nothing of PD and I was still working, running a £50m pa 18 acre chemical factory. I did not take too much notice of it, and I continued to run the factory for the 1st 5 years of my PD. I happily popped 3 x 100mg Sinemet Plus, little knowing I would pay dearly later, with heavy dyskinesia, for my lack of knowledge of PD. They were prescribed by my ist neurologist who headed back into the shadows, clutching my £150.
I retired in year 5 at the age of 60, not because of the PD, I had always intended retiring at 60, and had organised my finances accordingly.
in the next few years, I had to slowly increase my Sinemet until in around the 10 year mark, I was on 800 mg Ldopa per annum.
This was a wake up call, and I started, being a chemist, studying the disease and its chemistry. I tried to see similarities in the formulas of common drugs and supplements. I tried a lot of prescription free suppl ements, and ended up taking curcumin at around the 10+ year I took also
citicoline, which is given to people who have had strokes. It aids brain metabolism.You can only take so much, and I reluctantly stopped taking it
about year 12/13
I think I progressed slowly, since I kept in shape maintaining a half acre garden, avoided stress. I started my retirement with a months holiday in Hawaii, visting 4 Ilands. We then continued traveling to the ends of the earth for holidays. Some of them were quite demanding, eg Tahiti meant 40 hours flying time in the plane!
In years 15 to 20, I made contact with the research team in major London hospital, and visit them every 2 months. I am now on quite a coctail of prescribed drugs, Stavelo, Mirapex, Amantadine, trihexyphenidyl, Azelect, Looking foreward to reading the posts of other survivors Our long term plan is to remove L-Dopa from my range of drugs.

[reverett123]

Diagnosis as a beginning point puts too much on he quality of medical care available to you and how quickly you run to the doctor when you are ill.
So, my first symptoms began with a tremor of the right hand in 1992. Neuro mis-diagnosed as essential tremor. Sought out a different neuro in late 1999 due to difficulty walking. Was started on requip immediately and sinemet added soon after. Neuro later confided that for my age I presented as the worst case she had ever seen. But she also considered my response to treatment to be the best of her experience.

My symptoms have changed very slowly. Difficulty walking has the greatest impact on my QOL and is predominate in the motor department. In the past two years and in response to some incredible stress loads I have begun to have endocrine based problems similar to what someone with PTSD might have (i.e. anxiety, panic, depression, insomnia, etc).

After trying a half-dozen meds, I have settled on sinemet to avoid the problems of polypharmacy and its interference with my experiments on various alternatives. I was up to 32 mg daily of requip (24 mg is limit) and getting dyskinetic so I quit and switched to sinemet alone and am taking about 2000 mg of it. A large dose but I am trying to anticipate future problems and take things that research suggests should be protective.

Plant-derived polyphenols are my mainstay. In particular- green tea extract, turmeric, ginger. Also, alpha lipoic acid and acetyl-l-carnitine for mitochondrial boost, silymarin for liver and kidneys.

I have seen some improvment in the last six months (sense of smell has improved; am more help around house; sleep well, etc)

[paula_w]

DX for 20, exercise is saving me but other things are wearing out.

[jeanb]

* born on a farm in Iowa (midwest U.S. 1950-55) -- drank well water my first 5 years.
* did a lot of craft work in the mid 70's -- spray painting in a basement -- had windows open but never wore a mask
* in the 1980s lived in military housing that backed up to wetlands -- which were sprayed with bug spray regularly in summer

** genetics: my great-grandfather had Parkinson's; my 2nd cousin recently passed away from Parkinson's; and my 1st cousin has MS (they haven't identified our genetic marker, but I am sure it is there)

Jean

[lindylanka]

Diagnosed 9 years ago, symptoms since '94, so getting close to to 20. No classic tremor, but other signs all there. Grandmother had same, and a cousin from same side of family has MS. Exposed to DDT over 12 years. On sinemet from dx and entacapone added around 4 years ago, made a significant improvement. When I am really 'on' I function almost normally, but I do not get as much of this time as I would like.

Walking was one of my greatest pleasures, something I did regularly. Year on progression has taken that away, this year has been my worst. My other joy was gardening, very poor balance and fatigue has prevented me for 2 years. 3 years ago I had vegetables and soft fruit growing, and maintained it on my own. This year a gardener will come in and do the grass and cut back the hedges. Not a joy for someone who loved working the land.

I have 4 auto immune conditions including pernicious anaemia (perhaps related to levodopa use) that are much more recent.

[harley]

i get to celebrate my 29th year this year. i am 54 years old. i will explain more later. just wanted to check in.

[harley]

28 years .. oops. lost track, scuze me.

when i was 15 i came down with herpes simplex shingles, menangitis and encephalitis. very rare. the docs pretty much gave up on me. but, i made it and a few years later had the menangitis again. i began having weird symptoms such as severe depression attacks, hyperventalation and a strange type of rigidity. i began to see neuros in my early 20's and finally at age 26 was given a sinemet. it immediatly helped the rigidity, but also immediatly gave me severe dyskenesia. i received the dxd, post-encephalitic parkinsonism.

since that day, i have ran the dammit gammet of meds and all the joys of side-effects and interactions to go with them. i lost track of how many dxd i have had since my movement disorder is a result of something nobody expected me to survive. mainly the dxds were put under the "pdism" umbrella but there always has been hesitation in doing so. my depression i have researched is an after-effect of the encephalitis, and they have tried me on several anti-depressants and anti-anxiety meds. some come with disasterous effects, including suicidal tendacies.

i had the dbs in 2003 and it never worked right. in 2008, it was concluded after a horrific programming session that one of the wires was originally placed in the wrong spot. i began questioning the whole pd thingy as i went from one end of the country in a wheelchair (seattle) with a fellow parkie (ty sm) landed in cleveland clinic for a re-eval and verification of the wrongly placed wire and left there with a reduction of meds, my dbs shut off and me walking. continuing on to rhode island, i was given the dxd of "conversion disorder" by a top doc on pd. i flew back to seattle where a few months later my symptoms began to return.

stress? possibly.. bad environment. stupid doctor syndrome? me thinks a contribution. who knows.

since then, i got a divorce and the dbs has been removed. i began having bad pain and spent nearly the entirety of 2010 in and out of the hospital. my seattle neuro told me i was in advanced stages of pd and i needed to look at skilled nursing homes. i asked for another trip to cc where the neuro there said the pain was definatly not pd related. they also did the daTscan where finally it showed stage 2 of dopamine deficeincy, and damage to the basil ganglia from the encephalitis. yet, no brain cell loss. they were indecisive on dxd. with this info i returned to seattle and found a new neuro.

the pain was still bad and on a trip to urgent care, i found out i have 2 herniated disks in c5,6; t6,7; and degenerative disk disorder in my lower lumbar. in jan of this year, i had a cervical fusion. there is slight relief of pain, yet now a new problem has come up. i get extreme constipation going for 5-9 days between bm. a new pain is in my digestive system and it arises 5-10 minutes after i eat... anything. a colonoscopy revealed 4 palleps (non-cancerous) on my colon. the pd meds barely work and dyskenesias are hard. yet, when i am on.. i walk fine. just read ron's input on this in his reply. interesting and thanks for the advice and info ron,

so... two possibilities on my plate now. mayo clinic has accepted me and i am on the waiting list. or a possible redo of the dbs. i have a neuro appt tues where all will be weighed and discussed. we will see. i havent given up hope

[boann]

harley, rock on. my hat is off to you. bob - red swan? que es eso?

[Bob Dawson]

Originally Posted by boann

harley, rock on. my hat is off to you. bob - red swan? que es eso?

The swan does not have to be red, or even be a swan.
Swans are white.
If you go looking for a swan, you are looking for a big white bird with a long neck that swims gracefully in the ponds of the Gardens of Versailles.
In Nassim Taleb’s story about Black Swans:
Suddenly a black swan appears.
Everybody freaks out.
No one predicted it. Swans are always white.
And the black swan changes everything.
Taleb’s black swan is widely discussed in reference to unexpected events that have a negative impact on the economy; a mis-reading of Taleb, who says that the black swans can bring positive or negative results, to any field of human endeavour, not just finance. But because Black Swan is often used as a negative and as relating to the economy, we have to move on to a different color of swan.
A red swan, for example. It could be a red swan. It does not have to be red, nor does it have to be a swan. We are calling it a red swan because swans are white.
And we want Parkinson’s scientists to pay attention to the red swan. They study the 50,000 white swans, and exclude the red swan because it is an aberration, an outlier; statistical static that falls well within the mathematical margin of error, and can be safely ignored.
When AMGEN said GDNF did not work, they ignored the guy who was 80% improved over several years. “A placebo effect”, they pleaded. Yeah, sure, a placebo effect that lasts for years and that removes 80% of the disability and the pain. But that’s one guy. What do you expect us to do? Treat different patients differently? We need a treatment that the nurse can give to everybody three times a day, with a little paper cup of water.
The red swans are not representative of the disease. They are aberrations. Research grants are for the greatest healthiness of the greatest number. It’s democratic. Swans are vastly majority white. That’s the big market for the pills.
In medicine, you are not likely to get a treatment approved if it helps only a third of the patients. Throw the drug out – it’s no good for two-thirds of the people.
If there are 1,000 PWP in a clinical study, and 999 of them report increased drooling and tremors that just don’t stop; but the one remaining Parkie recovers immediately and then wins all the Gold Medals in every sport in the Olympics, I say go check out THAT person. What is going on out there? Whassup with that?
And that is your red swan.
Don’t be silly, we don’t give research grants to red swans. Swans are white.
In Wikipedia-style: Rare events and discoveries play a massive role in history, science, finance and technology. Scientific methods do not always help us to be ready for a red swan, because of the very nature of small probabilities and rare examples.
Psychological biases make people individually and collectively blind to uncertainty and unaware of the massive role of the rare event in historical affairs.
Such events, considered extreme outliers, collectively play vastly larger roles than regular occurrences.
Andy Grove, creator of Intel (remember when every computer had a sticker on it saying “Intel inside”? This is the guy.) made a speech about Parkinson’s research a few years ago. It used to be on-line at PAN but so far this afternoon I am in the wrong archives and did not find it. He was talking about the outlier, the rare one, the red swan. What is the red one doing that the white ones are not?
Hey Charlie, there’s somebody called Boann over at Neurotalk who stopped taking Mirapex.
Looks like I picked the wrong week to invest heavily in Pharma.

There’s somebody called Reverett123, conducts all these white mice experiments with no mice – they test compounds on themselves instead. Should we check it out?
Are you crazy? Need a billion dollars plus ten years to get it as far as the FDA, who will turn it down if it only saves a third of the wounded. Statistical outlier. Freak case.

…and then there this Aunt Bean with a fava bean farm, and others are dancing and many kinds of exercise… and some herbs…. And some spiritual life-rafts…
Quote from The Economist interview with Andy Groves:
Another business he believes to be ripe for disruption is health care. He complains that the industry seems to innovate much too slowly. The lack of proper electronic medical records and smart “clinical decision systems” bothers him, as does the slow-moving, bureaucratic nature of clinical trials. .. the time it takes for an experiment to proceed from hypothesis to results —around 18 months in chipmaking, but 10-20 years in medicine.
… he shocked the gathered bigwigs by declaring that hoarding patents was an abuse of intellectual-property rights...He insists that firms must use their patents or lose them: “You can’t just sit on your *** and give everyone the finger.”
http://www.economist.com/node/14299624