Parkinson's Disease Tulip


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Old 01-29-2018, 07:19 AM #1
proudest_mama proudest_mama is offline
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Default 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 ...

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Terri

People will forget what you said,
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but people will never forget how you made them feel.


Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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Old 01-30-2018, 04:55 PM #2
soccertese soccertese is offline
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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.
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Old 01-31-2018, 12:15 AM #3
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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..
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Old 01-31-2018, 07:35 AM #4
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Age-59

Previously took 15 Rytary capsules daily, now 4.
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Old 01-31-2018, 09:37 AM #5
proudest_mama proudest_mama is offline
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Default 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 View Post
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.
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Terri

People will forget what you said,
people will forget what you did,
but people will never forget how you made them feel.


Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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"Thanks for this!" says:
eds195 (01-31-2018)
Old 01-31-2018, 05:53 PM #6
ashleyk ashleyk is offline
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Default 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.
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Old 02-01-2018, 01:03 AM #7
proudest_mama proudest_mama is offline
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Default 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.
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Terri

People will forget what you said,
people will forget what you did,
but people will never forget how you made them feel.


Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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Old 02-11-2018, 04:20 AM #8
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Default Hi Terri ...

Quote:
Originally Posted by proudest_mama View Post
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.
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Old 02-11-2018, 03:32 PM #9
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Can you recommend a particular book on DBS? Thanks!
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