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-   -   DBS vs. the patch (https://www.neurotalk.org/parkinson-s-disease/250768-dbs-vs-patch.html)

proudest_mama 01-29-2018 07:19 AM

DBS vs. the patch
 
(I'm posting this twice because I want the title to read "DBS vs. the patch" and my neuro appt. is on Friday so I'm trying to get answers before then).

Hi everyone,

I see my neuro on Friday and would like to be armed with at least some knowledge and information.

Recently I was at the hospital and a tech told me that her mother was put on the patch and said it was positively wonderful and she no longer has highs and lows like she use to.

Now I'm reading about DBS and how that is a viable alternative.

What is the success rate of DBS? Is it typical to be free of all meds afterwards?

I, too, am relatively young ... diagnosed 14 years ago at the age of 44, currently 57.

What are the pros and cons of each? Any answers before Friday are much appreciated.

Thanks ...

__________________

soccertese 01-30-2018 04:55 PM

you can try the patch, i've read on this board and others that it works for some and not for others and it can be a hassle placing it on a different patch of skin everyday, agonoist side affects like OCD, nausea, dizziness. if it works well then you can use it for as long as it works. i've read that brand name requip-xl works well too. cost could be a factor if your insco won't cover whole amount.

you may not qualify for a DBS. Your MDS wouldn't recommend it though if he/she didn't think you would qualify. it is the last resort along with duodopa intestinal gel so you have to assume eventually you will need one or the other. if you wait until you absolutely need a DBS you may not qualify for one so you have to make that part of your decision framework. also, will you have enough support before,during and after the operation? if you talk to someone where DBS works well they tell you they waited too long. if your think you'll still qualify physically and mentally for a DBS in a few years, then there is possibly a benefit to delay since there might be a technology improvement during the waiting time.

write out all your questions and concerns and email to your mds before the meeting. get a book on DBS, many on AMAZON.

Jomar 01-31-2018 12:15 AM

You can use our search tool to find some specific information in past posts..
https://www.neurotalk.org/search.php

The search word needs to be 4 letters, so DBS won't work..unfortunately..
Another option is scroll down the main PD forum thread titles, there are some that mention DBS or Patch..

bluesking 01-31-2018 07:35 AM

Age-59

Previously took 15 Rytary capsules daily, now 4.

proudest_mama 01-31-2018 09:37 AM

DBS vs. the patch
 
Thanks for the replies. It always helps to talk to someone in the same situation.

I have both good insurance and support. I live in a Senior Citizen Retirement complex in assisted living. They help with my meds, I get all my meals, and they wheel me around the complex in my wheelchair on those days that I can't use my walker. Thankfully I'm able to shower myself, get dressed, and otherwise and am pretty self sufficient.

As you can guess, I'm the youngest one here (57) and figured out that I'm halfway between the ages of the help (front desk, Nursing Assistants, rehab personnel), and the elderly. Most of the residents are 80+ because 60 and 70 year olds are still in their homes. I pay $4900 a month so it isn't cheap and I consider myself lucky that I can afford it. I've had PD 15 years now.

Again, thanks for the detailed reply. It helps more than you know!



Quote:

Originally Posted by soccertese (Post 1258434)
you can try the patch, i've read on this board and others that it works for some and not for others and it can be a hassle placing it on a different patch of skin everyday, agonoist side affects like OCD, nausea, dizziness. if it works well then you can use it for as long as it works. i've read that brand name requip-xl works well too. cost could be a factor if your insco won't cover whole amount.

you may not qualify for a DBS. Your MDS wouldn't recommend it though if he/she didn't think you would qualify. it is the last resort along with duodopa intestinal gel so you have to assume eventually you will need one or the other. if you wait until you absolutely need a DBS you may not qualify for one so you have to make that part of your decision framework. also, will you have enough support before,during and after the operation? if you talk to someone where DBS works well they tell you they waited too long. if your think you'll still qualify physically and mentally for a DBS in a few years, then there is possibly a benefit to delay since there might be a technology improvement during the waiting time.

write out all your questions and concerns and email to your mds before the meeting. get a book on DBS, many on AMAZON.


ashleyk 01-31-2018 05:53 PM

Rytary?
 
My wife, 69 yo, has has PD for 16 years now. She was disqualified from DBS because she has delusions and hallucinations. She takes Rytary instead of Sinemet and that makes a big difference in allowing her to move longer even though her psychosis is a real problem.
At your young age, I would really consider DBS before psychosis kicks in. The more L-Dopa you take, the greater chance of psychosis.

proudest_mama 02-01-2018 01:03 AM

Thanks
 
You guys are the best! I'll talk to my neurologist about psychosis as well. Thanks for the information. I would have never thought about it, and I'm sure others wouldn't have as well. You've helped a lot of people.

aftermathman 02-11-2018 04:20 AM

Hi Terri ...
 
Quote:

Originally Posted by proudest_mama (Post 1258481)
You guys are the best! I'll talk to my neurologist about psychosis as well. Thanks for the information. I would have never thought about it, and I'm sure others wouldn't have as well. You've helped a lot of people.

Sorry for the late reply but this might add something, however small, to the collective knowledge of the board.

Tried the patch but it didn't work for me. Neuro stated that the absorption method, through the skin, is not as good as other methods, e.g. orally, and as such patches should be used either real early or as support for other methods of treatment.

Neil.

KNPV 02-11-2018 03:32 PM

Can you recommend a particular book on DBS? Thanks!


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