Parkinson's Disease Tulip


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Old 09-18-2018, 06:34 PM #1
CarolynS CarolynS is offline
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Confused Dbs

I confident this has been asked before, but when I search for posts I found none, whivpch I thought odd.

Those who have DBS, it what point did you feel it necessary for you?

My tremor is sooooo problematic I rarely can put my debit/credit card in the reader at a store. The cashier has to do it for me.

Writing, forget it. I don’t even print anymore if I want it read.

I gave up my hobby, actually passion, after 48 years because of my tremor. Very frustrated.
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Old 09-19-2018, 12:37 AM #2
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Quote:
Originally Posted by CarolynS View Post
I confident this has been asked before, but when I search for posts I found none, whivpch I thought odd.

Those who have DBS, it what point did you feel it necessary for you?

My tremor is sooooo problematic I rarely can put my debit/credit card in the reader at a store. The cashier has to do it for me.

Writing, forget it. I don’t even print anymore if I want it read.

I gave up my hobby, actually passion, after 48 years because of my tremor. Very frustrated.
Hi Carolyn,
I shudder to think what would've become of me without the benefit of DBS done almost 15 yrs ago.
I don't have a tremor so can't help you with your exact question but I truly believe you've answered it yourself and are ready to go down that road.
Best wishes.
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Old 09-19-2018, 01:37 PM #3
zanpar321 zanpar321 is offline
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Hi Carolyn,
I shudder to think what would've become of me without the benefit of DBS done almost 15 yrs ago.
I don't have a tremor so can't help you with your exact question but I truly believe you've answered it yourself and are ready to go down that road.
Best wishes.
Tremor was my main symptom and DBS dropped it about 95%! Yeah. I decided to have the surgery when my tremor got annoying. No I wasn't restored to the days of my youth but I highly recommend DBS. Suggest you find an experienced surgeon. I asked him how many DBS surgeries he had done, if any patients had died or gotten infections. My surgeon is one of the best!
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Old 09-23-2018, 08:20 AM #4
JoClay JoClay is offline
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The tremor was very problematic. When the neurologist indicated that the medication was approaching the point where the maximum amount that could be taken was being reached, it seemed DBS was the next step to be taken. After DBS, tremor has been reduced about 75%. The same decision to have DBS would taken again, without a doubt.
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Old 10-01-2018, 12:38 PM #5
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Quote:
Originally Posted by CarolynS View Post
I confident this has been asked before, but when I search for posts I found none, whivpch I thought odd.

Those who have DBS, it what point did you feel it necessary for you?

My tremor is sooooo problematic I rarely can put my debit/credit card in the reader at a store. The cashier has to do it for me.

Writing, forget it. I don’t even print anymore if I want it read.

I gave up my hobby, actually passion, after 48 years because of my tremor. Very frustrated.
Dx in 2010, DBS in early 2014. I had two bouts of blood clots (PE) that nearly killed me and some speech challenges. Fast forward to today and wife and I talk about how wonderful DBS has been. Tremors reduced by 80 to 90% most days thanks to Rytary, exercise, and the VA in Ann Arbor Michigan...
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Old 10-31-2018, 10:15 AM #6
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Default Dbs

About 1.5 years ago i went for it and had DBS. I blogged the odeal. you can check it out at Scottsuf.Blogspot.com
Follow the DBS road
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Old 10-31-2018, 04:22 PM #7
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Hope you are feeling well Scott, it's been a while and your daughter as well.

Best,
Eric
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Old 11-15-2018, 04:23 PM #8
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I had an appointment with my Neuro/MDS yesterday. She recommended that I should have deep brain stimulation surgery. She is of the opinion that I am a good candidate. I am being referred to another neurologist for evaluation. I would be getting the Boston-Scientific veraci system, which I was able to look at in her office.
DBS wasn't even something that I was considering at the time. I'm somewhat nervous, as this DBS idea was sudfen and there is a lot to consider. Any thoughts, suggestions or advise would be appreciated. Thanks
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Old 11-15-2018, 09:01 PM #9
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Default Dbs

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Originally Posted by eds195 View Post
Hope you are feeling well Scott, it's been a while and your daughter as well.

Best,
Eric
I'm feeling pretty good,considering I've been fighting this **** for 15 plus years. Can't complain or at least I shouldn't. LOL
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Old 11-16-2018, 11:42 AM #10
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Originally Posted by Blackfeather View Post
I had an appointment with my Neuro/MDS yesterday. She recommended that I should have deep brain stimulation surgery. She is of the opinion that I am a good candidate. I am being referred to another neurologist for evaluation. I would be getting the Boston-Scientific veraci system, which I was able to look at in her office.
DBS wasn't even something that I was considering at the time. I'm somewhat nervous, as this DBS idea was sudfen and there is a lot to consider. Any thoughts, suggestions or advise would be appreciated. Thanks
i've given this opinion before. if a MDS is willing to stick their neck out and recommend you for a DBS, then do it if you can afford it and have the support group to help you thru the process, not everyone can qualify for DBS and there is a waiting list, you are in a select group of pd'ers. if you are someone who also might be a candidate for a disease reversing clinical trial then you have to consider that since a DBS might prevent you from participating. if you are surprised that your MDS is recommending a DBS when you don't think you need it, remember they have probably seen hundreds of PD'ers and they're estimating how you'll be in a few years and obviously think you'll have progressed enough to want a DBS and better to get it now when you can qualify for it rather than take a chance that your health might decline in the future and you won't qualify. imho it would be a lot easier for your MDS to just tell you to keep adding meds rather than get a DBS so when they recommend one to you they aren't doing it just for the economic gain imho, they sincerely believe you will be better off and the last thing they want is someone who isn't sure they want a DBS and/or is going to back out at the last minute, so imho if a MDS recommends a DBS, you need a DBS even though your current symptoms aren't that bad at the moment. i was diagnosed about 15 years ago by DOCTOR A (not using names), but decided to see DOCTOR B for the next 11 years. with obamacare i switched back to DR A and he suggested i add amantadine - hated it and then entacapone and finally i tried pramipaxol which i stopped but from the first meeting he said i should start considering DBS which would have a better result than increasing meds. he didn't really push me on getting a DBS, i think he walks a fine line in recommending it but not pushing too hard which might result in a patient that chickens out at the last minute.
anyway, i'd get the evaluation and find out if you qualify, i think the results are good for a year. just remember, your MDS gains nothing by recommending someone who isn't a good candidate for a DBS, there are waiting lists for DBS and just for operating rooms, it isn't like they're having to meet a quota.

fwiw, i qualified for the DBS but backed out when TRUMP won and i was afraid obamacare would be overturned so i hope i can requalify since obamacare is now secure, i still worry about not having enough support.
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