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ScottSuff · 12-25-2015, 01:57 PM

Quote:

Originally Posted by pegleg

I did well - very well. IT WILL BE A SLOW PROCESS, but I hope to get off all meds (wishful thinking, I know) but it has been done before it just takes time and tenacity.

The final surgery was gory sounding - they asked me to not clench my teeth and it wouldnt sound so bad. it still sounded like a chainsaw massacre! What did I do during all ofo this? I sang! All verses of Just As I Am. It was 3 weeks before I got back to turn the programmer on - no dyskinesia! Slight tremor in each hand, but no twisting or writhing. no dystonia either. It's so hard to explain. It's like I was in somebody else's body. They arent finished making adjustments. It will take 3-6 months. but PTL!!

Thank you for your concerns and prayers. I'm 65 and have two holes in my head, but still hsve a brain. I love all ofo you - I really mean that!
Peggy

Sounds like you"re doing just great. Like to pick your brain (no pun intended) sometime in the coming weeks. Im going for a DBS consult around the end of Jan and it would be good to hear from a trusted source about the ordeal.
Merry Christmas,
Scott Suffridge

AnnT2 · 12-29-2015, 09:18 AM

Quote:

Originally Posted by ScottSuff

Sounds like you"re doing just great. Like to pick your brain (no pun intended) sometime in the coming weeks. Im going for a DBS consult around the end of Jan and it would be good to hear from a trusted source about the ordeal.
Merry Christmas,
Scott Suffridge

Yes, Peg. I wish the best results for you.

I also thank Thelma for posting about Peg. While this forum is about scientific and medical aspects of Parkinson's, as PWP we must remember that all of us are people with Parkinson's, yes, but we are also people with talents, humor. concerns, hopes, etc. I miss the social interactions that this forum once provided. It is rewarding to hear about and from Peg the person along with Peg the person with Parkinson's. Her personality shines through in her posts.

Years ago, a thread compiled short autobiographies from posters. It made the
forum supportive, informative, and enjoyable. Just saying.

Ann

ashleyk · 02-25-2016, 10:42 AM

I haven't seen any recent updates on how Peg is doing after her DBS. Any news?

My wife has an appointment at MGH Boston, Movement Disorder clinic in late March.
She is not doing well at all and I think tweaking the meds is not enough. The neurologist that she will see does DBS. However since she is tormented by hallucinations/psychosis (sinemet related, she takes over 1300mg Carbo-Dopa), I am not sure if she will qualify for DBS.
Is anyone in a similar situation and did DBS help if it was done?

Thelma · 03-01-2016, 09:45 PM

we are concerned peg as how you are and many need to know and don't want to bother you but you know me. give us a post anyone contacting her . Others are facing the same and need help/

Tupelo3 · 03-02-2016, 04:07 PM

Quote:

Originally Posted by Thelma

we are concerned peg as how you are and many need to know and don't want to bother you but you know me. give us a post anyone contacting her . Others are facing the same and need help/

I've had some email correspondence with Peggy a few weeks ago. I don't think she'll mind if I share her comments on how she is recovering:

Gary - I am fine but not great; thanks for asking. I'm recovering from DBS, a therapy that I undertook to hopefully help improve my horrible dyskinesia and dystonia. Well, it did indeed do that, but the doctor says I have to be patient, because now I'm having trouble walking. This is my fault as I tried to cut my meds back too quickly . I'm trying to be patient, but it's difficult, and may take up to 6 months.

girija · 03-04-2016, 12:20 AM

Quote:

Originally Posted by Thelma

we are concerned peg as how you are and many need to know and don't want to bother you but you know me. give us a post anyone contacting her . Others are facing the same and need help/

Here is Peggy's reply to my email ( sent on 3/3/16) asking how she is doing.

girija
Something went wrong. I don't know for sure, but I believe it had to do with my trying to come off my meds too quickly, and now I can't find the combination to get back.

I am now going to give the extended carbidopa/ levodopa - Rtary- a try. I start next week.

I'm always trying to circumvent the " known" way.

You can post this at NeuroTalk if you want.
Thx for asking

Peggy

VICTORIALOU · 03-04-2016, 09:53 AM

hoping for you to find your way Peg !!!!

pegleg · 03-08-2016, 12:08 PM

SUCH FLATTERING WORDS WILL GET YOU EVERYWHERE! LOL

Thelma, you made my day. I had DBS done in November. When I returned to the doctor's office to be adjusted, the minute he turned on the neurostimulator, my dyskinesia and dystonia stopped! Can you imagine.

Since then, I have had to go in to be tweaked a coupld of time for freezing 9, i.e., CAN'T WALK AT TIMES). i TRULY BELIEVE THAT IS BECAUSE i AM NOT SLEEPING.
we will get it altogether soon, and I can go on writing and living life to its fullest.

Thanks again.

flashinet · 03-08-2016, 12:31 PM

Peggy, you are such inspiration! I'm so happy to see you back.

Best of luck,
Jacob

soccertese · 03-08-2016, 12:49 PM

thanks peg,
sounds like a success? did they find a bunch of tiny eyeballs from your spheramine implant - or am i mistaking you for someone else?

i'm procrastinating on starting the process AND HAVING PD DOESN'T MAKE IT ANY EASIER!! Seemd so routine nowadays.

best of luck and do you have any before and after videos?

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