Parkinson's Disease Tulip


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Old 06-15-2016, 04:28 PM #1
soccertese soccertese is offline
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Default i'll be getting DBS if insurance approves and i pass a physical

just having to take meds too often and diminishing affect. passed the dbs mental and physical tests. was a little hesitant to do this since i don't have a long term care giver if anything goes wrong but i figured i'm going to get worse, do it now while i'm in good health and have the support i'll need for recovery, i'll have to face this dilemma by just getting older and not just for pd. i'm 62 and i don't see anything better on the horizon for at least the next 5 years so no point in worrying about a DBS preventing me from getting into a clinical trial.

i was diagnosed 14 years ago and my medicated UPDRS part 3 score was 9, unmedicated 28, I think 25 is the cuttoff. What this test fails to measure is mental fatigue which is a major symptom i have, rigidity the other. i hope i can reduce my l-dopa significantly and that will help the fatigue.
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Old 06-15-2016, 04:47 PM #2
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Best of luck, Soccertese. I'm sure you'll do just fine.
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Born 1948. Diagnosed 2011. DBS ON 7/17. Taking cd/ld 200 MG at 6 am, 9 am, 12 pm, 3 pm, 6 pm and 9 pm. Finasteride 5 mg, Life Extension Mix and Once-Daily Health Booster, Mitochondrial Energy Optimizer with BioPQQ, Optimized Curcumin (longvida), Triple Action Cruciferous Vegetable Extract with Resveratrol, Vectomega-3, Vit D3 5000U,Lithium orotate 5 mg, AMPK Activator, Kefiran, N-Acetyl-L- Cysteine (NAC), Tri-Magnesium, Advanced NeuroPro, Duozyme,
Palmitoylethanolamide (PEA) Updated 9/21/17.
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Old 06-15-2016, 06:22 PM #3
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Wish you well. Seems you have to be responsive to l-dopa to qualify, so that would disqualify me for dbs. I would certainly consider it if it was an option.
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Old 06-15-2016, 09:43 PM #4
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You can do this.....they are getting better at this procedure constantly....you will get your quality of life back, pretty exciting.....all the best....

Eric
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Old 06-15-2016, 10:04 PM #5
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Default Good Luck

Best of luck ST. I think this seems like the right move for you at this time. Please keep us informed on the insurance co. decision and if you decide to proceed with the surgery.

G
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Old 06-15-2016, 10:53 PM #6
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Quote:
Originally Posted by Tupelo3 View Post
Best of luck ST. I think this seems like the right move for you at this time. Please keep us informed on the insurance co. decision and if you decide to proceed with the surgery.

G
i've committed to do it and am anxious to get it done asap, especially with the presidential election coming up according to the neurosurgeon, they rarely get a denial from insco's but ya never know.
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Old 06-15-2016, 11:51 PM #7
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Default Wishing you the best

Soccertease, no doubt you have spent massive amounts of time and energy researching and analyzing this before deciding to go for it I wish you the very best and hope that you are one of the lucky ones who are able to eliminate meds completely. Please keep us posted and let us know how you are doing, lfac
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Old 06-16-2016, 12:50 AM #8
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Soccertese,
Best wishes to you.
It'll all work out.
Any DBS questions I'm sure one of us can help you with plus you might want to join an online DBS group.
I used to go to the yahoo DBS site and found plenty of support when I needed it there.
I guess others have popped up since then.
Very happy that you've decided on it.
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Old 06-16-2016, 04:25 AM #9
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Quote:
Originally Posted by soccertese View Post
just having to take meds too often and diminishing affect. passed the dbs mental and physical tests. was a little hesitant to do this since i don't have a long term care giver if anything goes wrong but i figured i'm going to get worse, do it now while i'm in good health and have the support i'll need for recovery, i'll have to face this dilemma by just getting older and not just for pd. i'm 62 and i don't see anything better on the horizon for at least the next 5 years so no point in worrying about a DBS preventing me from getting into a clinical trial.

i was diagnosed 14 years ago and my medicated UPDRS part 3 score was 9, unmedicated 28, I think 25 is the cuttoff. What this test fails to measure is mental fatigue which is a major symptom i have, rigidity the other. i hope i can reduce my l-dopa significantly and that will help the fatigue.
Hello Soccertese, I am very happy for your decision, I'm going for DBS in July. I also believe that, at this day, is the only valid chance for those with Parkinson's disease and no longer respond sufficiently to drugs (average 10+ years). I would to ask you what device you will use, Medtronic or Boston Scientific or something else.
Best wishes.
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Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016.
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Old 06-16-2016, 04:26 AM #10
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I hope that all goes well for you and that you ultimately decrease your meds and feel much, much better, ST. You deserve it.
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