Friday, April 15, 2011

Some answers

I missed a couple of comments that I should have replied to, and some legitimate comments were in google's new 'junk comment' box.

Yes, my battery was changed out also right at 2 years, however I believe it was only "on" for 18 months.

From my understanding (and from what is published about Parkinson's devices) I have 2 leads - 1 on the left & 1 on the right.  Each lead has four nodes, millimeters apart.  The controller can apply voltage, frequency/amplitude to each node separately as well as be "positive or negative" (although that brings into question where its grounded - so to speak).  Additionally the device can do timing sequences like on for 12 hours, off 12 hours, etc.  One node on each side has been MRI'd and X-ray'd to be in the layer called Broadman Area 25.  (I presume they put one of the middle nodes into "the layer". The X-ray techs are extremely cocky that they guide the surgeon to land in the "exact" spot.

As for speculation, I do feel that I am doing better than 2 years ago.  But being the analytical type, I have to put that in perspective, maybe in a perspective that only someone who has suffered through years of depression can understand - If on a scale of 1 to 10 where 10 is giddly-happy, when you've lived at 1 and 2 for so many years, moving to a 4 is a TREMENDOUS improvement.  At least until you see some home movies of back 'in the day' and then you realize you are incapable of truly scaling it.

I will also admit I am feeling good enough that I have turned on the search engines and 'tags' so others can find the blog without having to go through someone else's site's links.  Should someone 'identify' me, so be it.  I have to thank my very frank friend in NM who doesn't try to hide it anymore.  It is what it is.

My understanding is that the FDA approved additional implants but still only at the 3 original sites.  I wonder if there are any policies in the FDA that at least one person is on the review board who has had whichever disease they are reviewing.  In other words, for new cancer meds, they should have a cancer victim/survivor.  For depression reviews they should have someone who has lived through it.  I have the credentials to be on such a board, if anyone from the FDA cares to pay my airfare to 'help out'.

From my 'improved' standpoint, I have had to fight old habits and routines to continue to progress.  As an example, my afternoon fatigue used to be overwhelming and no amount of Red Bull or Starbuck's shots could keep me from an afternoon siesta.  However, by using energy drinks and pushing myself, the fatigue is not as bad.  By pushing myself, I don't mean pure "willpower".  If any of us could "will" the symptoms away, we would.  But by using an energy drink and trying to stay upright an additional 10 minutes, then 15, then 20, I have made progress.  Now any good shrink would tell us that one of the techniques to fighting depression is to push yourself to do the opposite behavior that your symptoms are telling you to do.  "Feel like isolating? - time to head to the mall or call a friend.  Have no energy? - take a 10 minute walk, then 15 etc."

Great advice - but it don't work that way for some of us.  Been there, tried that and felt totally humiliated and like a failure because I COULDN'T.  Next week at the shrink - "So, how did it work for you?" Um, the darkness got darker because no matter what I tried, it didn't make anything any better and that in itself made me feel worse.  What other completely brilliant ideas do you have?

My truth is that I do feel measurably better than 2 years ago. [Happy now that I've admitted it?]  But again the caveat emptor, put on a court's stand and under oath asked if the device was what was causing the change, I couldn't say "yes without a doubt".  The meds have a LOT to do with my feeling better.  They say (they being the handlers) that one of the theories about the device is that it amps up the effectiveness of the mood altering pharmacological plethora I take.  I am at the FDA limit on 2 of my meds.  As far as I know, I'm at the FDA limit of voltage being pulsed into my head - at least by all measures I've heard of battery life.  I also stay tuned into a number of self-help programs, where I have seen nearly miraculous changes in people's lives.  So there are a lot of possibilities including the disease is just not as bad right now as it was 2 years ago. I don't know for sure.

I am adamant that the current research should be allowed to expand.  My Canadian buddy (one of the 1st controlled batch of 20) is well on their way to regaining their life completely.  They too have had to try the old suggested remedies and be diligent about their meds, but their life is better also.

An amazing statistic, is that in almost all of the major anti-depression medicine's trials, right at 2/3rds had improvement.  From what I've heard, the same is true for this treatment.  I have my SSRI which should cover 2/3rds, my SSNI should cover another 2/3rds, and with my gizmo, yet another 2/3rds should show improvement.  (For anyone doing the math, that's 6/3rds - or 2x overkill). And that doesn't even account for my Ritalin, which should make all of the remedies at least feel like they're working faster (LOL). [One of the FUNNIEST comedy bits ever is Katt Williams talking about his kid on Ritalin.  Catch it on Youtube - but keep the volume low if you've never heard him before or don't like the F-bombs].  For me Ritalin is speed - I was never ADHD.  Just ADD.  And whatever GENIUS at the FDA or insurance companies decided that adults can't have ADD is an F'n fool. (In honor of Katt's language).

As for the commenter encouraging me to divulge more,  I have.  But I'm still not going into extreme details or singing the virtues of DBS for at least 4 reasons.  1 - Anyone else in the program might be swayed by any side effects both good effects or bad effects that I report. (and I have had both).  2 - Anyone else in the program might feel "how come it worked for him but not for me?" causing a spiraling DOWN effect that I know too well.  3 - For others who are not in the program but desperately want to be, I don't want to give any false hope, nor take away hope (For many of us, hope is the only thing that keeps us alive). To them, I want this blog to fan the embers of their hope back into a flame.  Progress is being made - even if this isn't the device for them, there are now 3 other trials world-wide, targeting other parts of the brain.  4 - I am not ready to fully come out of the closet and too many details risks my own protected little world.  Besides medical personnel and other implantees, only 7 people know about it.

To the last commenter - who had their battery changed.  We're on a similar timeline, but from the IP address trail, we're from different hospitals.  Feel free to email me if you want to share details.  (Oops, the handlers may object to that). [Yes in a former life, I was a techie too]  The site still gets the most hits from the area in Canada - where the first trials took place.  Interesting. Eh? (couldn't resist the linguistic jab).

I'm still hopeful a Medtronics implantee will make contact and let me know how their project is going.  (It's ok if you have a Kia implant and I have a Cadillac!! We're both on the same road. TEASING).


Anonymous said...

You rock.

Thanks for your recent post.

Maybe--just maybe--I'll gain some benefit from the device--enough--that I will come out of the closet and actually contact you directly. I am just not "there" yet.

And I applaud your progress. I know well-enough that it is not ALL science fiction making you well. Congratulations on your self perseverance, your fortitude, and your grit, which have gotten you this far.

Continued success to you.

herb said...

I’m extremely happy to be reading that you’re seeing improvement.

As always I endorse patient education while encouraging persistence and hope as do you.

Your thoughts about you or someone better qualified to understand MDD and participating on an FDA panel is to my way of thinking a good one. I too would like to see something of that nature instituted except for the fact these panels (FDA or CMS) would politely throw in your face that you are not a qualified professional and that your information is anecdotal.

I should know…that’s what they told me as a lay-depression expert to my spouse approaching 48 years while maintaining empirical data and observational notes of her symptoms, changes in her symptoms and notes, reactions and observations of her numerous treatment regimens through the years.

I’m not cocky, belligerent nor arrogant. The fact is I’ve come to learn and know more about my spouse’s medical condition and treatment regimens than many of these professionals.

[“But again the caveat emptor, put on a court's stand and under oath asked if the device was what was causing the change, I couldn't say "yes without a doubt".]

It is not important what others may think; but how you feel.

I’m sure you know there are ways to determine whether or not your therapy is causing beneficial change. I am not here to suggest you do anything but as you know my spouse has utilized a different neuo-modulation therapy for more than 11 years. In my mind and from my very careful observations there is no doubt her therapy has remarkably benefited her. She is depression free and has been so some 11 years almost continuously. How do I know? We’ve experimented for various reasons and several of those times we deactivated her device. After a period she did relapse into depression only those periods of depression lasted a week or two until we intervened by quickly changing her treatment regimen and reactivating her prosthesis.

Currently, she utilizes no antidepressant medications and has done so for some time.

Again, I am not suggesting that you or anyone reading my thoughts go out and follow suit. What I would offer up from our experiences is certainly to stick with what you believe is working (leave well enough alone) while maintaining careful and detailed notes and if necessary consider tweaking one treatment regimen at a time if need be in collaboration with one’s trust, caring, knowledgeable and licensed physician. I think if you’ve been brave enough to enter your research program you also might find a time when further experimentation is in your thoughts.

One other observation and experience I’d like to offer up. From the day we are born we are dynamic and so too each individual’s response to treatments, environment etc., etc. We cannot ever be like we once were. This is not to mean we should stop striving for our goals to be better but there are times in our life we can also appreciate that we’re better than we were at a particular period and appreciate the fact that there are others who would give their right-arm, so to speak, to be where we are today.

I admire your persistence and the encouragement you share with others. The fact is that your therapy and any of the therapies available to patients of MDD to the best of my knowledge at this time simply have no guarantee of efficacy which brings me back to a term I coined some four decades ago, “The Trial and Error Approach to Wellness.”

I wish you and all those challenged by this horrific illness wellness and all the good you would wish for yourselves.


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