Parkinson's Disease Tulip


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Old 01-09-2017, 08:08 AM #1
TexasTom TexasTom is offline
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Ah Crap! It happens.

Did they have to remove the brain leads?

I just hope for the best, and a speedy recovery.

On the humor side of life, I was trying to figure out why your kids went to University of Texas, when you live in Tennessee. Oh, what... I'll just blame Parkinson's for that one. Super cool your daughter is going back to school to work on Speech Pathology.

I wish you the best.
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Born 1958. Diagnosed PD 2014.
Meds Sept 2016: 5x daily: 2 - Sinemet 25/100 + 200mg Comtan; 50/200 ER Sinement (bedtime).
Oct 2016 - DBS - bilateral GPi (PD & Dystonia). Still a work in progress. (Reduced meds to 4 - 25/100 & 50/200 ER Bedtime daily; but need six months to see how DBS/Meds play out)
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Old 01-09-2017, 01:41 PM #2
eds195 eds195 is offline
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Scott,
Sorry about the setback. Keep leaning on your great family, they will help you get through this. You are a strong, retired AF officer and will clear this hurdle. Good thoughts continuing your way.

Eric
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Old 01-10-2017, 11:09 PM #3
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Quote:
Originally Posted by TexasTom View Post
Ah Crap! It happens.

Did they have to remove the brain leads?

I just hope for the best, and a speedy recovery.

On the humor side of life, I was trying to figure out why your kids went to University of Texas, when you live in Tennessee. Oh, what... I'll just blame Parkinson's for that one. Super cool your daughter is going back to school to work on Speech Pathology.

I wish you the best.
Yep, they removed everything I heard that it happens to about 2% - 3%. I'm just a lucky dude. Your another Texan with UT confusion it seems.
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Old 01-12-2017, 01:15 PM #4
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Hi Scott - Just returned from Key West yesterday, very sorry to hear about the complications, please let us know when you start to feel better.

I do know one thing, the fact that you're a Vet and I'm not confirms that
you'll be just fine, just a matter of time. Hang in there, buddy, I keep finding
evidence of bizarre health issues that are cured somehow. And, I actually
hate to broach the following topic because I know many people will roll their
eyes or burst out laughing. But, I don't know of another online community
that will offer and intelligent response I've had ED since I was 40, and I
turn 59 next month. Since DBS, I have had no issues in that Dept. Has
anyone else had a similar experience?!

David
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Old 01-12-2017, 01:37 PM #5
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Quote:
Originally Posted by bluesking View Post
Hi Scott - Just returned from Key West yesterday, very sorry to hear about the complications, please let us know when you start to feel better.

I do know one thing, the fact that you're a Vet and I'm not confirms that
you'll be just fine, just a matter of time. Hang in there, buddy, I keep finding
evidence of bizarre health issues that are cured somehow. And, I actually
hate to broach the following topic because I know many people will roll their
eyes or burst out laughing. But, I don't know of another online community
that will offer and intelligent response I've had ED since I was 40, and I
turn 59 next month. Since DBS, I have had no issues in that Dept. Has
anyone else had a similar experience?!

David
can't say i had a similar experience. sounds like you got the deluxe DBS. though
are you kidding? if not, you may have a "gold mine" there. just need to find a bioengineer who can wire one up without the need for brain surgery, find some investors ...
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Old 01-15-2017, 03:52 PM #6
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Well, I have to say, sounds like so much BS to me, too.

There has to be some kind of reference in the medical annals,
I just can't find one.

And yes, it didn't make sense to me to have that problem at the
tender young (LOL) age of 40, either, just like it doesn't make
sense that DBS would cure it. And just when you thought my
DBS 'experience' couldn't get ANY strange, consider the fact that
I had chronic skin diseases, with Rosecesia (red scaly skin- I know
that isn't the correct spelling) that has absolutely disappeared since
Oct. 16. However, for this particular problem, I recall running across
something that indicated this could be a early sign of PD, which does
make sense in my particular situation. Some others, such as increased
amounts of body hair in undesirable locations that are lessened
considerably after DBS may actually get me banned from the board
(LOL) but guys and gals, I couldn't make this stuff if I tried....@!

One thing that I do know. This may not be a cure. But nevertheless,
it is a miracle. No one will ever convince me otherwise.
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Old 01-15-2017, 11:49 PM #7
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Blog Update
Scottsuf.blogspot.com
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Old 01-17-2017, 05:48 AM #8
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Scott - I saw your blog for the 1st time yesterday. Apparently I
repeatedly hosed my URL entry attempts.

I think I may have a suggestion or two when they get everything
straightened out for 'round 2.'

I can't remember exactly what they set the initial voltage to from
the factory. For purposes of discussion, let's say it's 1.5. In my
case, the value is currently at 3.2.

Scott, if you can convince them to let you leave the hospital with
an adequate 'ceiling' meaning that you can 'bump' up the settings
yourself, instead of waiting for your next 'adjustment,' as I was
forced to do, you can save yourself much grief.

For example, based on their advice, and personal trial and error,
if I had been able to do so, I would have increased the setting
by 2.0 each day, until sensing significant relief. I think you are
already aware that any such sensation is short-lived, or at least
it was for me. It usually 'healed' in 2 weeks or so, leaving me
quite miserable for the next 2 weeks, until my next appt.


David
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