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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

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

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......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#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

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

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......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>





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