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4-Year DBS Follow-up


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#161 KimAgain

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Posted 25 October 2014 - 11:29 AM

Sixth Year DBS Follow-Up:

 

I haven't seen my MDS since early this year (February, if memory serves) and the first question he quipped was, "did you miss me?!"  This has been the longest stretch of time I have managed to go without the need for a work-in visit, so I guess he thought I'd fallen out of doc love or something!  I hadn't--I'd simply been happily in my "sweet spot," DBS-wise, for a while now.  But, on Wednesday, I happened to be talking to his assistant regarding flu vaccinations and I took the opportunity to ask her how busy his schedule looked because I was hoping he might have time to tweak my programming a bit.  As luck would have it, he had an opening at 10:30 Friday morning...

 

His surprise at the test results I gave him for my vitamin D and B12 levels was almost comical.  His eyebrows went up and he said, "Good God!!"  "Yes," I said, "I know, pretty low aren't they?  My primary care doctor has been working to bring them up, but we still have a bit of a way to go."  "You think?" he responded, wryly. 

 

O.K., so, some of the fatigue I have been experiencing has been due to my low levels of vitamin D, B12, and iron--but, once we get the levels normalized, that will give me a greater understanding of how much is PD and how much is other factors, so I take that as good news.  That, and the fact that I have actually been feeling a little better since the anemia has been addressed and my D and B12 have been raised--I am very hopeful that I will feel even better once they are at normal levels again.  

 

Then, we talked DBS.  I am currently in the best place I thought I could get, I told him, but I have in the past been given a half increment adjustment capability and, I hoped, if I could get that again, I would do even better.  My left body is currently at 0.10, my right body at 1.30.  After tinkering for a while, he ended up having a consultation with our friend at Medtronics and, it turns out that, since (and, here I'm getting into techno-jargon, so you'll have to bear with me if I fail to explain myself properly) I am on Amplitude (current mode) as opposed to Amplitude (voltage mode), the only adjustment available to me is, then, what I refer to as, full increment.  For the techno-geniuses among us, it goes like this:

 

Amplitude (voltage mode)       0 to 10.5 V or 0.1-V resolution

Amplitude (current mode)       0 to 25.5 mA with 0.1-mA resolution

 

So, what does this mean to me?  It means that I have a very sensitive body that reacts big to a small change, so I am going to have to wait  a little longer than most to make an adjustment when a symptom presents itself--thus, avoiding a rebound symptom.  He tried changing the electrode on a lead, but it created a tremor, so we decided that I am in the best place for me right now.  And, how is that defined?

 

Well, I'm walking well, if a little slowly.  My speech is good (I'm still working on adding an audio link of my voice, as soon as I do, I'll post it).  I'm on 500mg of Sinemet daily, which is a little higher than we'd like, but not too bad and, in time, I may be able to reduce that when I can turn my DBS up again.  My MDS is very pleased with where I am, in terms of my functioning and my cognitive abilities, so--while I'm far from "cured," I'm still a long way from being in "bad shape."  I remain in stage II.  

 

I did talk to him about depression.  Hooo boy, I don't want to go here, but I promised frankness, so here it is...

 

I addressed the issue of apathy and the feeling I have had that I just don't want to do things--and, that often includes things I used to truly enjoy.  "Is this," I asked, "the beginnings of real depression?  I can't say I'm sad, per se, I'm just overwhelmed with a feeling of 'what's the point?'"  

 

"Good question," he said, "how long does it last?  How frequently is it happening?  Do you actually get yourself up and do those things, or not?  Are you taking care of yourself?"  

 

Hmm...  All good questions.  I guess it comes and goes in its severity, but tends to be there a lot more often these days than not.  But, in one way or another (either I will make myself do what needs to be done, or my husband or a friend will push me gently in the right direction), I usually find it in myself to do what I need or want to.  The problem is, I feel I'm losing my joy.  I used to do my volunteer work happily and looked forward to it.  Now, I find myself thinking, "just get it over with--you made a commitment, keep it."  But, is that any way to live?

 

We decided on a prescription for the lowest dose available of Zoloft--to be held by me until I feel that I really can't cope anymore without some help.  I promised I would let him know if I start taking it and that I would take it as directed without stopping unless I spoke with him about it and he directed otherwise.  That's fair, antidepressants need a good 4 - 6 weeks minimum to see results.

 

So, there you have it.  The world according to Kim's DBS!  I am scheduled to return in December so, unless this funk keeps me from posting (as it has done for the past few weeks), I'll let you know if anything changes before then.

 

Kim


Edited by KimAgain, 25 October 2014 - 11:32 AM.

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#162 New normal

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Posted 26 October 2014 - 05:44 PM

Thank you for sharing.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#163 AB-Normal

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Posted 27 October 2014 - 10:37 AM

Hi Kim, I do hope you start feeling better soon.

 

I'm surprised, given the level of technology we have today, that we're limited with DBS to either current mode or voltage mode. I wonder, why can't they (voltage and current) be controlled concurrently in both the "X" and "Y" axis? The ability to control both the voltage AND the current of the DBS at the same time on both the "X" and "Y" axis would give us an extremely fine level of control. In fact, I can see the ability to interface the DBS controller with a laptop, and seeing a graphical representation of say, where you are now, and being able to use a mouse to pinpoint where you might like to be,  and with a click of the mouse, there you are. If say that spot isn't quite right? no problem, just click another adjustment spot, as the number of spots (voltage/current combinations) are in infinite.


Michael

Current age= 54

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 10/ 2013

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

 


#164 Rogerstar1

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Posted 27 October 2014 - 11:31 AM

Sounds pretty tricky if not down right dangerous. Throw in manual dexterity issues and the fact that my level of device sophistication is challenged by a garage door opener and I am very happy leaving adjustments to an expert.

 

Rogerstar


Edited by Rogerstar1, 27 October 2014 - 11:40 AM.


#165 AB-Normal

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Posted 27 October 2014 - 12:43 PM

I was referring to the Dr. being ably to fine tune the DBS as I described...... Not us, that would be silly, if not down right dangerous......lol


Michael

Current age= 54

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 10/ 2013

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

 


#166 coacht

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Posted 06 November 2014 - 04:18 PM

Hello all,

Things have improved. Higher doses of Sinemet have helped. Zombieland is behind us I hope.

#167 AB-Normal

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Posted 07 November 2014 - 06:44 AM

Coach, do me a favor, and welcome your DW back to the real world........in all it's faded glory..........


Michael

Current age= 54

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 10/ 2013

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

 


#168 New normal

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Posted 07 November 2014 - 12:34 PM

CoachT

Thank you for taking the time to share with us her progress.....I am seriously thinking if DBS, but hesitate because of such divergent outcomes. I wonder if some of the success your wife is having is from withdrawing the meds other than Sinemet ?

I am sure DBS did not make a perfect world for you, and I admire your diligence. Hang in there, and take care of yourself.

God bless our care givers.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#169 coacht

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Posted 08 November 2014 - 11:47 AM

NN,

I know a lot of the success is from withdrawing the other meds. You can physically see each change with the programming since she
is off her meds when they do it. Down to Sinemet and anti-anxiety meds. I wish it had been done years earlier so that the last
several years would not have been so difficult in dealing with the side effects of the agonists.

Coach T

#170 AB-Normal

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Posted 08 November 2014 - 01:55 PM

With all the problems, and unpredictable side-effects, I can't understand why the medical community still try's to push the agonists on us.


Michael

Current age= 54

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 10/ 2013

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

 


#171 New normal

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Posted 08 November 2014 - 07:57 PM

With all the problems, and unpredictable side-effects, I can't understand why the medical community still try's to push the agonists on us.



Ok...this is my humble opinion......not verified.....just a gut sense...so for those who depend on documented sources, don't bother to read...

MY OPINION why the agonists and other meds have come onto the scene and continue to be used in spite of the negative impact we have witnessed among our forum friends is profit driven by pharmaceuticals.

Dopamine has a proven history of successfully reducing PD symptoms....with no competition. As companies find alternatives, the marketing must be adequate to encourage docs to prescribe it. To augment the marketing, a campaign to discredit the favored dopamine needs to be presented to motivate docs to use the newer drugs.

So all of a sudden there are research papers discrediting dopamine and hailing the success of agonists and other drugs. Note the pharmaceutical companies now use their own advertising on TV etc because they no longer can use monetary incentives on doctors.
When the demand for the new drugs is created.....AND...concurrently, trust in the dopamine decreases....docs use the alternatives more. The pharm companies have enough documented research studies to protect doctors from liability. Physicians simply cannot keep pace with all new information...especially as dynamic as PD....and their patient load has a low per centage of PWP....so the most simple thing is to listen to the detail men, read the literature, try the new drug.

When the drugs affects PWP psychologically....the docs are first to assume the patient has mental problems...that is what they are taught in school, and that is what the detail people tell them....so they prescribe OTHER meds to manage symptoms caused by the drug regimen of the patient....and, hence, a vicious cycle begins....with so many variables, no one can identify causation....we are working with the brain.....NO ONE really knows.

In some of the stories on this forum, the people were on as many as 15 medications......WHO cd ever sort that out realistically. And doctors have their "brotherhood" so no one wants to even suggest that the med protocol of a peer is creating problems.

I think this has been for the last 5-7 years until FINALLY just months ago they are reversing the stand on dopamine...reversing the thought that dopamine should only be given to PWP as a last rx, reversing the thought that dopamine causes PD symptoms to worsen.....why? Because the proof is in the pudding....TOO MANY PWP have had dramatic personality changes, horrible side effects, and broken lives because of the agonists and other drugs.....the poop has finally hit the fan,,,,,and no longer can it be reasonably said that it is worth using these drugs in light of the possible impact on PWP..

Ok, ok...many people do well with them. OK, we pry see only the worst cases which skews the data....OK, pharm companies need their profits for R & D to continue providing updated meds.....I recognize the rebuttals to MY OPINION.

I am just sayin' I have seen this before...I am old enough to recognize in the medical community it seems like there is a "flavor of the month" disease which follows by an intense fifth avenue marketing of a "flavor of the month" prescription.

And this is what I see in the rx history for PD. For me...I have seen enough....because of the honesty of forum members sharing their horrific incidents with their PWP, we have seen the results of these drugs. My gosh, without this forum none of us would know these things.....and this forum represents an ultra minute per centage of the 1 % of people who present with with PD. It is no wonder that it takes five years of "mistakes" that shatter PWP's lives before the medical professionals reverse the science.

JUST AN OPINION....I have no medical education.....I have just lived long enough to know that if it looks like a duck, quacks like a duck...it might be a duck...these drugs are doing awful things to people....they just might not be advisable any longer.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#172 coacht

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Posted 10 November 2014 - 02:34 PM

NN,
I think there is a lot of truth to what you are saying. The other reason they use the agonists is that there was the theory that
delaying use of sinemet until later would delay dyskinesias. People were horrified that they would have dyskinesias in public and
would eagerly use the agonists since there were no dyskinesias. Some people do well on the agonists. the problem is that the
people that don't do well on the agonists are the least likely to understand what they are doing since everything seems right and
normal when they do it. Also, people don't report the side effects, myself included. The FDA has a form you can fill out for
adverse side effects. I haven't even taken the time to fill one out for when I was on Lipitor, let alone the Mirapex and requip.
Doctors don't take the time either. The patients also sound perfectly plausible when the talk to the doctor. My DW was put on
Mirapex the week the publicly announced the gambling addiction. Some reports were out there about hypersexuality in a few men at
the time. Now they KNOW it causes compulsive behavior and should watch for it, primarily by asking the caregiver. MY 2 cents anyway.
Coach T

#173 AB-Normal

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Posted 10 November 2014 - 04:24 PM

Now they KNOW it causes compulsive behavior and should watch for it, primarily by asking the caregiver. MY 2 cents anyway.
Coach T    

 

One of the problems I see, is that because "The patients also sound perfectly plausible when they talk to the doctor."  The doctor tends to dismiss out of hand the thoughts, concerns, and/or opinions of the caregiver, or they hide behind HIPPA, claiming that they can't discuss the PWP's condition with the caregiver. Thus creating a scenario where the PWP's condition spirals out of control.  


Michael

Current age= 54

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 10/ 2013

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

 





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