Pauline

The one DBS and the other redo of left side of brain stopped my tremors
which are now returning on right leg, my "good" side.  I may need to be
reprogrammed or the disease may have just progressed, it's been almost 3
years since surgeries.  meds didn't help but once before and didn't help
after DBS so I don't take them.  my speech difficulties started with 2nd
surgery. my fine motors skills, movement were not improved and  are getting
worse, but it is impossible to know if I would be able to move at all w/out
DBS.  Also, everyone gets a different result, from complete failure to
almost getting your life back.  The way I got through the surgeries was by
hoping I would die on the operating table.  DBS is scarey not only because
you must be awake, but because the outcome is so uncertain.  I don't see how
I could have lived any longer wih those tremors.  DBS is especially
successful treating essential tremor and Parkinson's tremor, but I have
heard it helps other symptoms and people need fewer meds.  although dystonia
in toes was not helped,  left foot straightend out on operating table.  I
once swore I  would never have this surgery but ended up doing it twice,
coming through with flying colors with a 'bad' attitude.  if she can, it is
very important to get a competent surgeon and team. Good luck, Ray
----- Original Message -----
From: "Pauline Spaulding" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, April 05, 2006 9:37 AM
Subject: Re: Parkinson's disease


Hi you say that the DBS surgery helped with the tremors.  Is that all the
two surgery's helped?  I have a very close surgery whom we have all been
trying to get her to have it but to no avail. she is scared to have it.  I
was hoping to show her some success stories to encourage her to have it.

rayilynlee <[log in to unmask]> wrote:  Hi Sabrina, I went with the "Unlock
the Cells" T-shirt because I feel like a
prisoner. The PD meds don't help me at all, so I am always "OFF", but I
know what you mean.. I had DBS brain surgery twice and that helped with
the tremors. How about "I'm all shook up" for a T-shirt for Parkinson's?
I'm putting your email on my Parkinson's List.

Thanks and good luck.
((((Sabrina)))))
Ray
----- Original Message -----
From:
To: "rayilynlee"
Sent: Tuesday, April 04, 2006 6:08 AM
Subject: Re: Parkinson's disease


> hi. thanks for writing! I do have a shirt for Parkinson's - "Turn me on"
> got the idea when I met Michael J Fox and he explained the on state
> and off state with medication.
>
> attached is a pic to see... also, I have them on my site with a
> description at
> http://freethestemcells.com/index-4.html
>
> plus more styles at www.cafepress.com/getstemmed
>
> let me know what you think :)
>
> Sabrina Cohen
> SabCo Productions
> Advertising/Media Relations
> 305.968.8024
> www.freethestemcells.com
> www.cafepress.com/getstemmed
>
>
>
>>
>> From: "rayilynlee"
>> Date: 2006/04/03 Mon PM 07:19:05 EDT
>> To:
>> Subject: Parkinson's disease
>>
>> great idea Sabrina, do you have anything for Parkinson's disease? I am
>> a "lifer" who is a ten year
> prisoner. Survived ovarian cancer in 1980. Write and advocate constantly
> for hESCR.
>> Good luck
>> Rayilyn Brown
>> Surprise AZ 85374
>> [log in to unmask]
>>
>
>


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