Saturday, February 11, 2012

Can you believe - 3 years?

I was going to journal and update the blog on my third year anniversary, but alas, it slipped past me.

So what's new?  Well for me, I mentioned a year ago some other medical problems.  I thought those were gone but have come back.  Painful.  I have gotten some relief after dealing with it for over a month, but it's not completely gone.  Another working theory of mine here, an additional disease or pain, combined with depression, escalates the depression symptoms.

Actually, before my 3 year check up with my handlers, I had noticed more symptoms.  Given that most of the readership here knows I have gotten some relief from either gizmo, drugs or simply time, I'll elaborate a bit but still not (hopefully) give away too much info.  I measure everything, usually using a 10 point scale.  As far as the remission of depression, that would be a 10.  Dark, dark place would be a 1.  Anyway, at my visit, I reported that I felt like I had dropped a notch.  And it had been going on for awhile.

So much plays into that though, for anyone who has taken any of the depression or quality of life assessments.  Your ex-spouse called a couple hours before, or your child won some achievement.  Even though the assessments are to gauge the past 2 weeks (or whatever) short-term situational factors do play into it.  But my slippage has been going on for more than 3 months.

Now PLEASE don't read into this that all my gains have diminished.  Remember I can't attribute my gains solely to any factor.  My point to this set of ramblings is FEAR.  If asked my greatest fear, besides losing a loved one, would have to be the depression coming back to where it was.  (The invisible pain or blow torch as a commenter called it).  The symptoms recurring to the point of (further) dysfunction.

My blessing was a discussion with one of my Canadian friends, who is celebrating her 6th year of positive results, which she does attribute to her "gizmo".  She too still has that fear.  We decided, it may never go away.  I am better than 3 years ago.  I'll leave the particulars out because NO ONE should put my feeling better in their list of reasons to have DBS done.

I'll throw out a negative or two.  As I have mentioned, there are a number of people who have had the DBS done that contact me.  Another original pioneer in Canada has pointed out that she feels she should not be on the success list, yet when she reads the press about those 20, she believes her case is unique and not mentioned.  Her side effects aren't attributed to the DBS, in the literature she has found.  But she suffers from those side effects and wonders where in the footnotes her problems are listed, because they should be.  And I have previously written about the person who had to be explanted because the side effects were too severe for him. 

Now on to some other interesting, if not fascinating news in the DBS world.  First, in my last blog I made mention of the movie Limitless and how mapping the brain with electrodes may result in some remarkable effects especially combined with psychopharmacology (brain drugs).  Um, here's a link to a DBS study showing MEMORY improvement and possibilities for Alzheimer treatment. ABC Memory Link. Just like stem cell research, the possibilities are endless.  And like stem cell research, there are going to have to be some pretty stout ethics and policing of the research and use.  Need I mention all the blue eyed, blond german children that someone wanted to create for his nation?  Add in some leads into their brains and they'll think faster, move faster (from Parkinson research) and only experience the good emotions.  Ok, I'm taking it a bit far, but I feel like saying "I told you so" after predicting 4 months ago that Parkinsons, Depression, OCD research is only the beginning.

And another piece of research came through recently.  (You have to pay to read the REAL thing, but I found a really good synopsis for free).  Another trial on DBS depression was done that had bi-polar patients.  Bi-polar study link. Read carefully my friends.  In my mind, there are far more questions asked than answered in the study.  The study had uni-polar and bi-polar people.  (Uni-polar = depression in psycho babble).  No bi-polar person had a mania session.  Wow.  OK.  But hold on.  There were 2 that finished the study out of the 7 that started.  There are a few questions about that I'd like to ask.  The study seemed to have a high drop out rate.  (Let me get on my soap box about my theory on it - someone to talk to about what they were going through - licensed behavior health person please?)  I can't tell you how many people in studies have dropped a line to the email address just to say "thanks for posting - its nice to know someone else is with me in this".

More questions include whether they're using the same voltage and frequency as me, or the Medtronics folks, or did they tweak it based on the results they know about us?  

And finally, to wrap up this post, someone has created a facebook page for US.  I am joining as I read this, but since I prefer my anonymity, it will be under the 278-005 name.  Not many signed up.  There was another group started awhile back - just 3-4 of us and hardly any communication.  (Another symptom of depression - we really don't like to talk to people.  So don't expect much).