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Let's hear from long term survivors

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Unread 04-25-2012, 09:28 AM   #1
johnt
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Default Let's hear from long term survivors

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
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Current meds: stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
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Unread 04-25-2012, 11:36 AM   #2
Ronhutton
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Default Survivors

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.
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Unread 04-25-2012, 12:33 PM   #3
reverett123
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Default I will assume twenty years since first symptoms

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)
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Unread 04-25-2012, 01:49 PM   #4
paula_w
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Default at least 23 yrs

DX for 20, exercise is saving me but other things are wearing out.
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"Time is not neutral for those who have pd or for those who will get it."
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Unread 04-26-2012, 01:12 AM   #5
jeanb
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Exclamation dx'd 9 years ago with symptoms 30 years ago

* 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
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Unread 04-26-2012, 08:22 PM   #6
lindylanka
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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.
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Unread 04-27-2012, 11:24 AM   #7
toadie
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started with a tremor in my right hand in november of 1990.

went through extensive tests, ecg, ekg, mri's, nerve conduction tests, blah blah blah

dx july 21,1991 with parkinson's disease. (neuro called it text book) at 26 years old, my kids were 6 and 8.

i graduated from drafting and design school aug 1992
worked in that field until i was medically retired june 2001.

i took and passed a motorcycle safety course in 2000, bought a harley sportster in may and put 10,000 miles on her by late november that year.

i couldn't eat and ride my harley because food interfered with my meds or canceled them out completely. so i lost 35-40 pounds. i'd rather ride than eat.

that was 9 years after i was dx and my 2nd neuro said i would only have a good 5 years to take care of myself. he said i needed to learn to live within my limitations. as soon as i had med insurance i dumped his negative behind and got a new neuro.


over the last 20 years i've been on:
sinemet cr
parlodel
early days of eldepryl (segeline) allergic-hospitalised for week+ at a time severe asthma (3 inhalers, nebulizer 4 x a day, steroids)

(early days) tasmar made my liver enlarged in hopital for a week or 2.
amantadine
sinemet
comtan
mirapex
stelevo
requip
been through various anti-depressants, sleeping aids, vitamins


at that time i was maxing out all dosage levels of sinemet, comtan and mirapex to work. it took me a year to slowly titrate down from mirapex and comtan. panic attacks slowly abated after comtan was discontinued.

with comtan and mirapex i was cleaning, tooth brush and q-tip scrubbing, over cleaning the house,accccck

collecting type ocd (i collected colored pens, pencils, craft paints, mostly, i did a lot of painting back then) abated with mirapex.

nasty business.

my mom said when i was 3 months old, i didn't sleep much, that i would be wide awake playing quietly. she said she had never heard or seen a baby that was awake and playing as i did for extended periods of time like i did. she said my 4 siblings would get fussy.

dunno i didn't start to sleep at night until i was 40. mayhap 1-3 days a month i don't sleep.

i was born with an arrythmia and mitral valve prolapse.

high blood pressure at 43, i take meds for.

i take sinemet, requip and effexor xr, a blue capsule and ambien cr

i'm 47 now, geeeze

sorry i can't spell for poo and i'd have to get up and go out to the kitchen to see what the blue capsule is called.

hope it helps
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Unread 05-03-2012, 05:19 AM   #8
Dottie
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Dragging my right foot, a change in handwriting and lose of arm swing added up to a diagnosis of parkinsons early in the '80s. I've been on sinemet since then but I take much less than first prescribed. I take the sinemet in l/2 doses "as needed" along with amantadine, mirapex, vitamin d and synthyroid,

In 2007 I participated in the Ceregene120 clinical trial receiving the placebo/sham surgery.

My main complant is my balance-I fall often and use a transport chair when we go out. I stopped driving about 3 years ago so I need to rely on others. I'm 70 years old so I guess it was time for me to quit driving.
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Unread 05-11-2012, 11:56 PM   #9
johnt
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My thanks go to everyone who replied.

Is there anyone else who would like to share their story?

The only thing I can see that you all have in common is the eloquence of your writing.

Can anyone see any other common ground?

John
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Current meds: stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
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Unread 05-17-2012, 12:57 AM   #10
boann
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Default symptoms 16 yrs

Dx 12 yrs, am 48 now. Started w/difficulty writing followed by tremor in right index finger six mos later. Went to neuro two yrs after onset, dxd two years after that. Was put on mirapex a year later, 1.5mg 3x/day, stayed on that dose until recently, now taking no pd meds. Couldnt type on mirapex anymore and that was the last thing i was tryinng to preserve so why bother. Still cant type but my ankles are almost back to their skinny selves :-)
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