I'm Still Standing

I haven't taken the time to write lately but only because I'm in about the same place as I have been for years.

The Broaden study is gone and most participants I know are no longer in touch with their centers.  There are a few centers who have offered to stay in touch, but nothing formal. Emory is the only place I am sure is still conducting research.  (Please let me know if there are others).

So where do we go from here?  There is no checkbox on the life insurance application for "Have you ever had a device implanted in you to shock your brain?" So what do you do?  Under Affordable Care, is this a pre-existing condition and should then be covered under their plan? I joked about it last blog but it will be a reality for many of us.  My primary care doc is fully aware and would write letters in support of the study (yes, I'll admit I have responded well, as many of you have guessed over the years).  I have a number of other inherited medical issues - DNA is a wonderful thing.  (Auto-immune - but I'll leave it at that).

So the specialists I see ALWAYS have questions. Some stay on the medically necessary track while others have been extremely interested in every facet - including how others have done, etc.  But again, if I apply for life insurance (and I'm no spring chicken) and they request the last 5 years physician's notes - there it would be....  My doc always wants to know how the device is; how the depression is; then on to whatever is ailing me.  Being on a schedule 2 drug (Ritalin) in my state, I have to see my doc every month.  Not just go pick up the script but he has to see me.  And my doc goes through the whole quick check - heart, lungs, nose, ears, ankle swelling, cough cough (which is another surgery waiting to happen) and occasionally the other men's exam.  He makes sure my insurance gets their money worth.  All good and well, but 5 years will have nearly 100 pages, counting annual blood work and referrals to the specialists.  Think I'm going to get the prime insurance rate, even if my blood pressure and cholesterol are ok?  Or are they going to re-look at my application to see if I checked that  "Have you ever had a device implanted in you to shock your brain?"

On to the next order of the day - really the real reason for posting: Another reporter has found me.  In particular she is looking for people who would have paid for the procedure, or have paid for the procedure.  I only have 1 acquaintance that I could find and she doesn't fit the rest of the criteria.  One of the criteria originally in Broaden was having had ECT.  I did not. So here is what the reporter requested:

If you did do a post on your blog to help me, I'd ask that you say I'm a journalist based in New York trying to talk to people who have tried to pay for DBS out of pocket, or people who cannot get DBS because they are too turned off by ECT.  Of course I respect all requests for anonymity - I just want to understand the atmosphere DBS has created and I think a lot of people who consider it would benefit from an article about the current state. I've reported on all kinds of complex and sensitive issues, and want to assure I am respectful and professional. ~~ kamalakelkar at gmail.com

I will probably talk to her on the phone to try and give her a better insight to REAL depression.  Please let me know if you do contact her and how your experience is.  (Was it good to talk to her or not - I don't care the details you share with her, I just don't want to be turning people to sharks.  No offense Kamala).

Again - I believe there is power in numbers - just knowing other people who have gone through what you have gone through was huge for me.  There is a closed facebook page for US.  Implanted for Depression.  E-mail me if you can't find it.  I am shocked at the lack of people in the group.  Not that it is that active, but where did the rest of us go?

I can't wait to check the "Google Analytics" to see if ANS still peeks at me.  Or are those researchers all unemployed now? 

 

Depression Descriptions (And new links)

The misunderstanding of depression is terrifying.  For a disease that is real, there are so many people who still believe depression is a weakness.  I've recently run across a couple of good descriptions of the horror of this disease and the debilitating effects it has.

The first comes from a book published in 2005.  The book is primarily about stress and how humans deal with stress in comparison to other animals.  From my limited understanding of the studies discussed in the book, the bio-chemical interactions haven't really panned out for finding cures or treatments. However, the author's description of the depths of depression is one of the best I've read - especially considering he has never experienced it himself.  The book is "Why Zebras Don't Get Ulcers".  The link will take you to Amazon just because that's where I got mine.  Chapter 14 brings Depression into the mix with the stress that  the author, Robert M. Sapolsky, covers.  For anyone who has loved ones who "don't get it",  Sapolsky contrasts the "blahs" with the paralyzing symptomology of major depression in a layman's terms, in the very first part of that chapter.  The parts after get a little more clinical but still very understandable, going over the biology of depression, etc. 

I recommend this because one of my loved ones happened to read it.  She and I had a very meaningful discussion about my condition and I finally felt like she understood.  (Again, if you do pick up the book, be aware that the chemical studies that sounded very promising haven't really panned out.  The Glucocorticoids, according to my team, are markers but not predictors, of depression.  You don't have to get that in-depth into the book in order to use the Depression section to help others understand the disease).

The second great description I found comes from TED.  Ted.com is one of my favorite pleasures.  Some of the greatest minds and speakers are found on TED on an amazingly wide variety of topics.  Check it out next time you've flipped through all the TV channels and found nothing.  The talks are usually under 20 minutes (which is great for my own ADD).  Inspiration and education.

The TED talk that blew me away is by Andrew Solomon.  It is titled: "Andrew Solomon, the secret we share".  I've not read it, but he wrote a book that obviously won some great kudos (from TED: Solomon’s last book, The Noonday Demon: An Atlas of Depression, won the 2001 National Book Award for Nonfiction, was a finalist for the 2002 Pulitzer Prize, and won fourteen other national awards.)

Regarding the anonymous posting from last month and the Broaden Study, my own belief and hope is that everyone realizes this is a looooong-term study.  I believe they had implants in 2013, though I have no specifics, logically one would presume that their 'research' would continue for 4 years and 6 months from the last implant.  But, that would be logic.  I know from following one of the original Canadians that she has continued to improve.  But she has Canadian medicine - who knows, maybe there is a loophole in the new Affordable Care mumbo-jumbo that would make insurance companies accept our "pre-existing" conditions and DBS treatment for those who have gotten relief.

Herb's commentary on the FDA and trial studies has a lot of merit and I encourage anyone interested in what has happened in the past follow his links.  I pray history doesn't repeat itself.  

Progress

As I've hoped and hypothesized, Dr. Mayberg, who is one of the founders of using DBS for depression, has released research under a NIH grant relating to being able to diagnose what treatment method will work best for each individual with depression.  i.e. Run the test and it will show whether an SSRI, SSNI, Cognitive Behavior Therapy (CBT) or something more radical like DBS stands the best chance of working.  (They haven't refined it that far but the initial research is fantastic).

In the linked article,  they correlated activity in the brain called the "anterior insula" with CBT and a SSRI.  Based on either low or high activity in the insula, the type of treatment that worked best for the patient has a high correlation. Another article (http://www.medscape.com/viewarticle/806426) gets a little more technical and the actual JAMA article is at http://archpsyc.jamanetwork.com/article.aspx?articleid=1696349.

Pretty cool stuff, if you ask me.  Of course this is all very preliminary work but it's a giant step forward.

For those interested in DBS, there are a number of research studies using different locations in the brain.  There are links to the side and in the blogs that refer to the actual locations and that the current theories hold that, like many things in the brain, depression is a circuit of sorts.  That circuit runs through a number of areas and the current research is showing that there are a number of places that DBS works. Finding the place that works the best or to extend this latest research, using some type of imaging may lead to prescribing a certain anti-depressant, seeing a therapist, or in severe cases, which place in the brain to insert some electricity.Woo hoo.

Hope

Hope is one of the hardest things to muster when suffering deep depression.  Unfortunately, too many lose that last ember of hope.  I'm publishing a couple of really exciting links.  I've mentioned before that there are numerous DBS studies around.  I usually only hear from those in the US in the St. Jude study.

The first is great news - if the USA can find the money.  It confirms what I predicted many blogs back - that the amount of research and technology advancements that we've seen in the last 30 years regarding the heart, will be replaced by research of the brain.  (throw in the human genome project as another great step forward).  Here is the NY Times link, but HOPEfully everyone suffering from depression understands the potential of 10 years of concentrated study of the brain:
http://www.nytimes.com/2013/02/18/science/project-seeks-to-build-map-of-human-brain.html?pagewanted=all&_r=0

Next up, and the impetus for me to write about it is the research in Germany where they are implanting it yet another area.  I won't attempt to explain the different areas being explored but they all seem to be interconnected in a circuit, that when disrupted, provides relief from this Hell called Major Depressive Disorder.
http://neurosciencenews.com/deep-brain-stimulation-medial-forebrain-bundle-success-major-depression-patients/

Another link about the same study: http://www.business-standard.com/article/pti-stories/brain-pacemaker-to-treat-acute-depression-113041000157_1.html

And here is the HOPE... for anyone wishing they could get in a study or find ANY way to rid themselves of this disease, hang on.  This is the third "successful" area of the brain that I am aware of to be probed.  I personally believe we will discover there are multiple 'depressions' and different treatments will be developed for each.  I've seen the inside research on some new TMS that is outstanding (but not yet available at your pharmacy).

Not being a brain surgeon, I'm not sure if this is the same area Bonn was playing with before or not.  It sounds like a new area - so there may be 4 areas being studied, plus things like VNS and TMS. 

But this is exciting news.

There is good reason to have HOPE.

Interesting Ethics

A person who contacted me has this link posted on their facebook.  Absolutely interesting article.  (It is a pay per view research paper but the first 2 pages are worthwhile).  This isn't to try and scare anyone away from the procedure but to highlight the fact that the research going on is dealing with some of the worst depression imaginable and there are risks.

As a long time advocate of the research protocol mandating that a person be assigned to a counselor or therapist, I believe Dr. Gilbert has made the point.  My opinion, for what it is worth, is that a therapist (who may be blind to whether the person is turned on or not) should check in with patients for the first few weeks after every visit for a "tune-up".  And of course, be available whenever the person needs someone to talk with.

As a general statement, we don't like socializing much and definitely don't like talking about how we feel if the gizmo doesn't seem to be working.  But ethically, I would think the IRBs should require it.  (And not just for us depressed, but probably for all experimental DBS).

As for me..... nothing really new to report.  What I've discovered in myself though is much less interest in following the subject.  It's almost like a denial reflex that I should stay abreast of all the research on DBS.  Not reading about it makes it not real for me, so to speak. I'm overall pleased with the continuing research into TRD and depression in general.  Some of the outcomes of the latest TMS are FASCINATING to say the least, but I find myself less "glued" to the Internet over depression.  Denial is a wonderful thing.

Best to all.  Wish NM would contact me.

I Miss Me

Over the Memorial Day weekend I drove by the housing addition where Depression first showed itself.  It was house #2.  Ironically in my little berg of a town, at one time you could see house #1 from the yard of house #2 (before more construction).  House #1 memories are full of laughter and fun.  House #2 memories have many of those but in looking back - now I see some of the slippage.  How horrifying to look back in this manner.

House #3 was a short stay and was the same as House #2.  House #4 is where Depression was diagnosed.  But back to house #2.  Looking back over 16 years finds a family flourishing when we moved in.  When we moved out, there was pain for me personally, pain at work and pain in the marriage.  (In psycho-babble (PB), three domains were becoming dysfunctional).  But it is the beginning of house #2 that I compare to the worst (both house #4 & #5).  Who was I back then?

Besides the obvious lack of the symptoms that plague every depression patient, it hit me that my impulsivity was overwhelmingly different.  No second thoughts to doing things spur of the moment nor even volunteering for new projects.  Some of my impulsivity was acted out immaturely as well (but I'll skip the embarrassing mistakes).    Along with the impulsivity came the ability to talk in front of crowds with no anxiety; the ability to 'want' to meet new people; the ability to take on new situations.

From studying motivation theory, I know that our brains are wired for the new and novel.  Some brains are wired more heavily than others and there is also wiring related to risk taking or danger.  People wired heavily for seeking out the new and novel combined with high risk taking are called adrenaline junkies.  In my teen years, riding motorcycles and driving cars at stupid speeds was normal.  My executive functioning was low.  (PB for immature frontal lobe development).  But that immaturity continued well into late twenties, although tempered by 'responsibilities', so potentially lethal impulses were kept at bay.  But at house #2, the decline of the impulsivity (which should have equated to becoming more mature) continued past a certain threshold of 'normalcy' to the point that by house #4 I would find myself crying in the shower not wanting to start my normal day.  New and novel was triggering the danger circuits.  Which then begs the question, was it the New & Novel decline or was it the Danger circuit being over zealous?  (This thought just came to me while writing this - no wonder therapists prescribe journaling for insight).

If I look at financial risk - danger - I was just as risk adverse while playing the stock market at house #4 as house #2.  Flirting while being married didn't decrease either - although that would be an argument for my New and Novel not really declining as much as I think. And at house #4 I bought a 400 horsepower car - definitely a sign that my Danger circuit wasn't overtaking my reasoning.  So I'm back to the New & Novel decrementing being the cause of my dysfunction.  The depression's ability to cause a low mood was tempered with psychopharmacology (antidepressants) and I believe (heavily believe) that memory is very closely tied to emotional states.  (Remember when you got gifts?  But not the day before?)  And my antidepressants suppressed the emotional state in both directions.  Often referred to as raising the floor but also lowering the ceiling in mood categorizations.

So the lack of emotion led to fewer memories overall.  The good times and bad were hampered at the time and the memory circuits weren't locked in as deeply.  I can recall house #2 memories more easily than towards the end at house #4.  Was that Depression or the side effects?  I'll have to go with Depression, because during that period of time I was on SSRIs, SNRIs, and tricyclene medications (not all at once - but my gp would switch when we realized the medication I was on was no longer working). So as the Depression became worse, regardless of the medication, the memories were etched less and less on my brain.  And God I regret that.  When my children bring up memories that should be easily accessed, I struggle.  A few hours later, I can remember more of the moments they were talking about.  (I know - some of this is simply age - but when discussing it with chronological peers, their lack of important memories isn't nearly as severe as mine).

Back to missing ME.  I think in a previous blog, I referred to confidence as being the culprit.  (I'll have to go read my own blog because I don't completely remember!).  But behind the confidence, I now believe impulsivity played a part.  I'm now curious if the Depression circuit, which gizmo is interrupting, is anywhere close to the New & Novel circuitry.  I know gizmo is wired really really close to the Danger circuitry - at least the anxiety response portion of that.

No fear of being goofy.  That's another trait I was thinking about when I drove by house #2.  That is impulsivity but is also part of the Danger (fear response) circuit.  Interesting.  The second most salient trait I was thinking about 2 weeks ago has both components - almost equally.  "fear of" = fight or flight and "being goofy" = impulsive comedic behavior.  Ok, I'm back to the drawing board as to which is affected more by Depression.  (this stream of conscience writing stuff makes me sound wishy-washy and its possible this blog post will make me look goofy - although it's been 2 weeks since I had the impulse to write this down, and haven't acted on it until now - yet I will push save).

Most of my posts have links to some good reading.  I have been reading some interesting articles, but don't really want to take the time to go back and find the links again.  In summary, there is a flurry of activity surrounding DBS for depression and the numbers are increasing.  As mentioned before, the Europeans have a study group with 4 leads.  Some of their research is starting to surface.  From my layman's understanding, they've plugged into the same place as both St. Jude's project as well as Medtronics area.  With the working theory that the circuit passes through a number of physical locations in the brain and can be interrupted at various places along the way.

There is also a lot more being published about transcranial magnetic stimulation (TMS).  And the general public is becoming more aware of the use of electrical (and magnetic) stimulation of all of us guinea pigs, with an amazing (to me) outcry of negativity.  Summarizing a couple of people's points in an article that likened my gizmo as a pacemaker for the brain, heart pacemakers work on a muscle and DBS works on a part of the body that we know very little about, in fact we know more about the moon than we do the human brain.

Well, to that I would like to remind people that we put quite a few lives at risk in moon research.  (Some of it could have been done without humans - I get that).  As we map out these circuits, I believe it won't be very long before we can put a person in an fMRI and decide whether to put them on zoloft; attach some low voltage electrodes to their skull; send them to talk therapy; put a magnetic skull cap on 3 times a week; or drill a couple of holes in their heads.  Just like we know now whether to make a person reduce their salt & exercise more; or put them on cholesterol, blood thinners or beta blocker medicine; or have to do open heart surgery followed by a pacemaker.  (I understand the heart is a muscle and the brain is different - so what?  Research may take longer and ethics/research boards may be more cautious, but bottom-line folks, the research has to be done.

Hmmm, after I proof read this and post, I may fire up the 400 horse beast and see what 100 mph feels like again.  JUST KIDDING - the last time I broke 90 mph cost me over $400.  But I am going to be more aware of when I could be more impulsive and actually try to be goofy (in small amounts).  (Physician heal thyself?)

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).

Just Links

I admit I have been more busy than usual this year. Read into that whatever you like..... (one commenter on the last post said I was inferring that I was doing better).

I got no comments as to whether I should open the blog to google & yahoo for them to see the tags and direct people here. I've thought about setting up the $ google offers for being able to advertise as well - and donating it to depression charities. So I'm open to YOUR thoughts on those ideas.

I've collected a number of links of interest. The first has to do with a follow-up to the original Canadian trial of 20. I knew of 1 suicide, but apparently there were 2. Additionally 1 passed of natural causes. My condolences to the families and as odd as it may sound, my thanks. In fact my thanks goes to all 20 (and the original 6) who risked a LOT in order to promote the science. I can say though, from my standpoint of being one of the original 30 in the USA, the decision wasn't based on promoting the science as much as giving me some relief. A side note of opinion, I believe, even in my study, more should be done to avail LPCs or other therapists to the people in the study. The article is a little critical of the study but since we're talking BRAIN SURGERY, one should be very careful. The article: http://psychcentral.com/blog/archives/2011/02/08/deep-brain-stimulation-dbs-for-depression-long-term-followup/

Another interesting point the author makes is that it is impossible to do a full "sham" study. You can't take a person and 'pretend' to do brain surgery like you can give a control group a placebo pill while testing antidepressants. My study did 'sham' the first 6 months, which from my standpoint should meet criteria. I'd love to see the update on my study, but alas, that might bias me - and we wouldn't want that. (tongue in cheek comment since I don't want to bias anyone considering the surgery but apparently my writing can be interpreted as it helping). I will say I haven't had any of the really bad side effects others have reported. 1 person I keep in contact with has regained a great portion of her life. 1 has suffered bad side effects but is currently stable. 1 has had some improvement but also slid back.

The next interesting link continues the ethical discussion, specifically believing the OCD DBS should not have been given approval by the FDA. http://www.nytimes.com/2011/02/15/health/15brain.html?src=twrhp. Interesting - but again, the person suffering from the severe OCD probably has a different view of the issue.

Finally the last link of interest talks about the 3 areas of the brain that are being researched and how they now believe the 3 are 'cabled' together so the results of affecting any one of the the 3 will be the same. Um, ok. Obviously more and more research is being done. I believe it is a German study that is wiring up 4 leads into subjects brains in order to maximize their ability to find the right spot(s) or combination. Batteries in my device last from 15 months to 2 years depending on the person's settings. I can only imagine the 'power' required to turn on 4 different nodes. (Mine has 2 on and lasted 18 months). Here's the link: http://www.mtbeurope.info/news/2011/1102034.htm.

Again, shoot me an email or a comment on your thoughts on allowing the search engines to see the blog or not.

If you're in another study, I'd love to hear from you and your experiences, if you are able to talk about it.

Thanks for your support.

Possibilities

The most sought after and needed word to many a soul is the word HOPE. As long as there is a small ember of hope left inside, we can carry on. I started this blog out of HOPE - hope for a lifting of the darkness of depression. I've tried very hard not to reveal too much since I am in a study for DBS and I don't want someone making decisions based on my experience.

I will go out on a limb though and say there is HOPE.

It's been quite a roller coaster of an experience. Very surreal at times. I've communicated with people who nearly have their lives back and people who were unaffected by the procedure. The trials continue and hopefully there will be some new papers out soon.

The next word after hope is restored is the word POSSIBILITIES. If we let our imaginations wander past hope, what are the possibilities in one's life if the depression lifts or even lessens? How quickly can a person rebuild their life after a decade of darkness? I've touched on this before when asking what rehab for decade long depression would look like. If I had a hip replaced, there is a standard set of exercises and physical rehab conditioning that takes place.

In this world of the "new frontier", there doesn't seem to be a rehab protocol. Since the data isn't in yet, what are the odds that a person gets to feeling better, starts to rebuild their life, and the depression returns? The person with the replaced hip is usually told at the onset what the history is for a person who is their age in their circumstances. So, since there is no data, one reverts to hope again but adds 'what if?' What if it works? What are the possibilities?

Depression is an octopus with many tentacles (symptomology). The mood may lift but the fatigue continue. The cognitive impairment & memory fog may lift but not the amotivation. One of the worst things about this disease is self-doubt. I don't know if self-doubt is truly a part of depression or if it is learned from the other disabling factors. But here's the deal, those wonderful dreams of possibilities get interrupted by self-doubt. Anyone recovering from this disease or about any other long-term disabling disease wants their old life back. Or at least a good portion of it. What can be recovered?

Another disappointing fact is still the stigma of the disease. Let's say a person does start feeling better and wants to work again. What do you tell your prospective new employers? "That gap in my resume is when I was depressed but now I have this gizmo in my chest that electrifies my brain and I'm doing much better"?

Possibilities. Shadowed by self-doubt. "Tis better to have loved and lost than never have loved at all"? Tis better to be feeling better and full of worry than to never have felt better....

We'll see.

Joe Pantoliano of movie fame (Sopranos, Matrix) has suffered from depression and has put together some great Public Service Announcements (PSA) as well as having started an organization to bring more education about the disease and to 'end the stigma'. Here's the link to the organization: http://www.nkm2.org/. Take a look at the PSAs. It might be a good starting point for those of us who have friends / loved ones who don't believe in mental illnesses. I'll be buying the DVD in the near future.

I genuinely 'hope' everyone has a wonderful 2011 and that it becomes the year of possibilities, not just hope.

PS - I have elected to remove certain phrases and comments from previous posts that could ID me. I hope it doesn't distract from the content. I've thought about putting the label/tags back in and turning Google's advertising on (hey I could use the money). But I also have promised my handlers that I'll be careful about what I reveal. I don't want someone agreeing to the surgery because my hope meter is a little higher. I do hope anyone whose hope meter is very low, can re-energize their hope that there are new treatments coming down the road that may help them. Anybody have any thoughts on it?

Heading into uncharted waters

First let me thank Rich for his comments on my last Blog. It's great that he has found some relief and has started rebuilding his life. Its fantastic that his docs are willing to try something a little different. One of my Canadian friends was that lucky years ago and is doing well. (She recently had her battery changed and things seem to be going just fine).

I'm not much different than the last time I wrote, so there isn't much of a personal update. My handlers are politely going through the protocols of adjusting meds and then waiting the 4-6 weeks for me to report back.

Depression & anxiety have some common real estate in my brain, I believe, so the Docs are trying to find the balance and get it addressed. I appreciate their efforts.

I am going to have to have a non-related surgery in the not too distant future. For anonymity I'll leave out any descriptions. I am traveling a number of hours in order to work with docs that aren't in my home town, both because of my own paranoid fear of everyone in my town finding out about my gizmo, and also because my insurance will actually pay more of it. I completely understand HIPAA rules that say no one in the office can talk about my conditions and even then it is supposed to be on a "need to know basis", but frankly, my town is so small that I doubt there is anyone who is more than 2 degrees of separation. (I know someone they know).

As for the insurance, OMG I could rant a long time about it. My fear here is that since I couldn't have an MRI done, my surgeon wants another test done and it will be my luck someone at the insurance company will say "why didn't you do an MRI?" and the answer will be "because he has a neurostimulator implant" and the insurance company will say - "we don't have that on our records - so we're dropping him". Ya, I'm paranoid about a lot of things.

I have another physical problem that has inoperable pain. I figured since I was going to meet my deductible I might as well have it explored again as well. That doc believes a certain drug, taken for 6 months, stands a real good chance of relieving the pain. But its a 6 month trial and if it works, you pretty much have to stay on it. (It coats the lining of your bladder if you must know). The only problem: $172/mo. Luckily the pain is transient and comes and goes as it pleases.

Maybe, if the gizmo and meds really start working well, I can get a job with better paying insurance. A good paying job would be a good start anyway.

Besides congratulating Rich and acknowledging that many of the "firsts" are having batteries changed, the point of my writing was this link about "Patterned Pulses". This whole DBS frontier is HUGE. Frequencies, milli-amps, volts, pulses.... Its going to take awhile to map out what modern science can and can't do inside our heads.

Which brings me to a thought I had while debating whether to have the surgery. The surgery itself will knock me down for at least a week, probably 2. Then rehab, etc. It was overnight to get wires put in my brain. When the Docs offered me the Broaden Study, I immediately had my answer, even if I did take some time to 'think about it'. That was a no-brainer (pun intended). The depression had ruined my life and trying something different than meds, was no big deal. I've thought 100x more about the current need for surgery. I can live with the pain for awhile longer - maybe. Just an interesting thought for anyone who is hoping to get in line for this gizmo. Give it more thought.

The first stage of the study was really focused on Safety, not efficacy (whether it works). Obviously if they are beginning to move ahead, they've established the safety and there had to be enough 'successes' to warrant moving ahead.

I'd still like to hear something from some Medtronics candidates. Does it seem to be working? (Or did Medtronics put a gag order on them?)

What is Success?

During the course of this study, we are given all sorts of self-report assessments, from simple depression inventories to quality of life measurements. But what defines this treatment as a success?

In basic experiment terms, you compare the results of the treatment on an experimental group and if it meets the criteria statistically, then the treatment is, or is not, a success.

So let's say a person had a quality of life 15 years ago that was at an 8 or 9 on a 10 point scale - great life. Then depression hits: fatigue, cognitive fog, isolation, relationship failure, job failure, the whole gamut of long-term, treatment resistant depression takes hold and the quality of life reaches a 2 on a regular basis. (For many of us, a 2 is a good day. I'm not sure where suicidal thoughts creep in, but I'm going to say around 3, for the sake of argument. Not full ideation - or the actual development of a plan - just some of the thoughts creeping in).

So, a great life is 8 & 9; a sucky life is below 3. What should be the 'goal' of success for an anti-depressant treatment?

For some, just the boost out of the suicidal thought area is a great success - maybe a 4. The person may still have some major dysfunctional area, like being not able to hold a job, but at least they don't ruminate only about the disease. At a 5-6 they are more like people with situational depression - having some good days, some bad. I think 'normal' would be a 6-7 on my scale. A person who enjoys most areas of their life.

So what is success? Is a 5 enough?

I ask because I have had an increase in my scale. (Gizmo or meds or life changes - whatever the cause). I am better. But I am still bitter. I want my 8s back.

I recently had a heart-felt conversation with one of my children about the toll depression has taken on me and because of that, how it has affected them. The good news is he doesn't believe I'm a bad dad. In fact he believes I'm a good dad. That affirmation meant the world to me, but with the negative self-talk still creeping in, it also pointed out the bad news which is - imagine what kind of father he would have had without the disease. As he pointed out, he has never known me any different.

I have mentioned there being other blogs by other 'subjects' for these experiments. One has had major problems but recently found a little relief. Another continues her struggle with no relief. As for some others that don't blog but do occasionally communicate with me, the person I know who has had it the longest is achieving great things. Things she didn't think possible even 1 year after her implant. Another says he believes he is doing better and has switched medications to see if it improves even more. (I haven't heard from him lately - hint hint). The woman who is doing wonderfully has cautioned me that just like having a knee replaced, it takes time and effort and to be really cautious of over-doing. She isn't back to her 8s but she is enjoying her life again.

So as an update, I will say I am in a better place than pre-treatment. Do I believe gizmo is totally responsible? Not sure yet. Do I count myself as a success? Unfortunately, I want my full life back. It's somewhat relative I'm sure. Pre-operation, I might have been satisfied to be a success with my current quality of life as compared to then. But isn't it human nature to want more?

From my limited understanding, the initial study itself has proven to meet the criteria of success to move ahead. More hospitals may be getting ready to add more subjects to the statistics pool. I think that's a good thing.

I'll admit another thing, while I'm at it. Updating the blog is a downer for me. It's reality. Although looking back and seeing my progress should give me a feel good, bringing up the page and reminding myself that this is me. This is my life. And it ain't where I wish it were. That brings me down again. So, I avoid updating more often.

For anyone getting into these experiments - keep your expectations low. I monitor my general mood, anxiety, irritation and fatigue as different columns. i.e. My mood has improved but fatigue is the same. I remain hopeful. Hope is necessary! The medical field is making progress in understanding this disease and I am hopeful that even if this isn't the cure-all for me, it won't be long before something comes along that does the trick.

Is it wrong for me to want my 8s back? Are my own expectations unrealistic? I guess I am an optimist and believe it is possible.

Still on the Roller Coaster

Interesting that a fellow depression pal entitled her blog with the Roller Coaster title as well.

I previously committed to not revealing too much about the effects in order to preserve any research boundaries. My last couple of posts had mixed messages in them so I thought I'd explain a tad more but still not go overboard on details.

I did experience some unusual emotions for me. However, I have been under extreme financial stress and the Holidays have almost always sucked. Was it gizmo or circumstance? I can't say. But I will say it wasn't something that surprised the handlers nor something that made me think about turning gizmo off. It was bearable. Uncomfortable for a time, but definitely not a show stopper. My results may or may not be typical. If someone were considering the procedure, I wouldn't let my dip influence my decision.

And yes, I had a period of time where I could feel a difference (in the positive). I even went so far as to attempt to reduce my medication. I did feel good enough to consider not making my appointment. For anyone who suffers depression and starts feeling better, no matter how much you detest taking meds - DON'T MESS WITH THEM. At least not on the most GRADUAL of scale with your handlers leading the way. LESSON LEARNED.

So a couple of caveats so far: Listen carefully to the handlers; use their resources as much as possible; expect some ups and downs (whether its working or not); don't mess with meds if you are feeling better!!!

I know different meds and different therapies work for different folks. (Because frankly I believe there are different types of depression and we aren't smart enough yet to know the difference). I went through a set of seminars and I mentioned it a few blogs back. [I've removed some references that could ID me]. There are similar ones across the nation and if someone is interested they can email me with their location and I'll try to locate one. They are NOT for everyone. This too isn't a cure all. I'm just saying I felt much better after doing them.

I have plans this weekend but just found out that Dr. Mayberg will be speaking a few hours away from where I live. There is a big part of me that wants to cancel my plans and go listen and possibly even meet her. I don't know if that would be ethical or not for her to talk with a subject. I don't know if I would have the opportunity to speak with her. And frankly, I'm not sure what I'd say. Oh well. If she happens to read this in time & wants to meet - I'd be more than happy to rearrange my schedule. LOL. Who knows. Maybe I could get a job helping her.

So... with any luck, my meds will get me back to that better place in a couple more weeks. As far as I know and as well as my Canadian connection has pointed out, there isn't anyone who has had good enough results to completely come off meds. I know a number of the original Canadians check this out on occasion and I'm sure many in the Brodman Study do too. Again, I've not heard anything from and Medtronics subjects, but I'd be extremely interested in any that were able to get off meds. Feel free to email me if you don't want to leave an anonymous post.

Speaking of comments - someone left an updated link to the Mayberg interview that seems to work better: http://videocast.nih.gov/Summary.asp?File=15724

MM - hang in there - call when you need.
Sadano - BLESS YOU
Fellow DBS followers - I think about you often. Hope things are improving.

I've added 3 new posts to the list on the right - recent articles in the news. One is a research paper which reviews the currently published findings on DBS for depression and OCD. I linked the actual pdf. The second is the 1st article I've read about Medtronic's actual trial. The 3rd, with the Warning, is about German research. Every time I pull it up my browser locks up. Might be me.

One last comment - I am TRULY blessed to have a partner who continues to put up with me. Thanks my love! (Herb, and another other caretaker/supporters, God bless you).

Roller Coaster

My last post was less than positive. The study itself shifts gears at the one year mark and it seems like either you get it - or you don't. The length of time between seeing the doctors enlongates and there isn't a lot of discussion of options.

Frankly, I was pissed.

I have plenty of feedback for the 'handlers' and we'll see if they are interested in my comments.

Along the same circuitry of depression exists anxiety and anger. Given that OCD is considered an anxiety disorder and the DBS experiments on OCD seem to plug into the same circuits makes a lot of sense. As for the anger / irritability - one has to wonder how close in the limbic system fight or flight is connected to the same areas. In my mind, I picure anger, anxiety & depression all exisiting on the same circuit board. Suffice to say, in my own experience, I've become friends with anxiety and anger.

My update consists of some more links and a VERY informative video by Dr. Mayberg. I had to download the "REAL" plug in to watch it, but its worth it.

http://www.news-medical.net/news/20100127/Testing-DBS-for-treating-severe-long-term-depression.aspx

http://www.biomedcentral.com/content/pdf/1756-0500-3-60.pdf (more of a paper review)

http://www.sciencedaily.com/releases/2010/01/100126084057.htm

http://www.elementsbehavioralhealth.com/depression/deep-brain-stimulation-successfully-treats-severe-depression/

and the most important one:
http://videocast.nih.gov/launch.asp?15608

I'll see if BLOG allows .rm files as videos: It tried but after 30 minutes of uploading wasn't done. Please take the time to go to the nih site and view the video.

I am doing quite well, after the aftershocks of the 1 year transistion. I am more positive about the whole DBS idea now than 3 months ago. I still contend the handling of the patients is not where it should be, but the medical science is advancing in the direction it should.

I am still aware of some 'bad' experiences occurring with others and extend my best wishes to those people and hope something can be done. I also find it fascinating that I've not heard from any Medtronic participants. The Europeans have a study where they're implanting 4 leads - and taking the time to test each and every node on each and every lead. (I would think that would be a pretty smart thing to do even if you fully believe node 2 is exactly placed where you want it).

I go for a checkup soon. I thought about skipping it - and I'll tell you why afterwards.

Expectations are disappointments waiting to happen

Experimental - Efficacy - Safety - Titration - Patience - Transient

I have just returned from my 11 months checkup. Although 11 months, probably I was off the first 6 months, so this is month 5.

When I agreed to this, my thinking was very simple: I'll try ANYTHING to get rid of this.

Over the past few months, I have seen some mild (positive) changes. Can I say for sure its the DBS? Absolutely not. Maybe. I'd go so far as to say probably the changes are due to the DBS. But this blog is dealing with reality. My reality.

I made a decision months ago to only report physical problems and to generalize any ups and downs because this is an experiment. My reactions may or may not be the same for anyone else. But (again another but) I feel real compelled to go off on a tangent of expectations and reality and just how new this field is.

Below is a link to a video of Dr. Mayberg discussing the first woman implanted and her reactions, which were remarkable and extraordinary - IN THE OPERATING ROOM. I apologize I wasn't able to embed it, please take the time to listen.

http://www.dailymotion.com/video/x9vgvq_treating-depression-deep-brain-stim_tech

Dr. Mayberg talks about the IMMEDIATE change in this woman.

Next is a video of Dr. Resai and a woman who underwent the surgery. Note the part where after implantation, they bring her in to modify the parameters on her device to zero in on lifting her depression. This is similar to Parkinson's implants where they may spend hours adjusting the generator and choosing which contacts on the leads to use (there are 4 on each wire - 1 wire on each side of the brain). Fascinating and it really really looks like this could be a cure that doesn't take much time.

But back to reality which has to do with bringing this product to FDA approval and that means following rigorous scientific & ethical guidelines. What the researchers actually know about how this is working is baffling little, I'm afraid. For standard FDA research and approval of anti-depressant drugs, there is a 12 week period. The experimental group is given the new drug for 12 weeks and their progress monitored and measured. At the end of the 12 weeks, the results are compared to the control group which was receiving a placebo. Using statistics, the differences are compared and it is decided whether the new drug made a 'significant' change over the control group. There are hundreds of Internet links about various studies and how strong the placebo effect is (18-22%). And how ineffective many of the anti-depressant drugs are. To generalize most studies, 1/3 get remission, 1/3 have some good progress and 1/3 don't get any help over 12 weeks. Then the process may start over at a different dosage - another 12 weeks.

One of the problems with VNS was the ability to figure out what the proper 'dosage' of current to the vegus nerve is for each person. I'm no expert on it, but I know it was controversial - I am sure Herb has plenty of articles and literature on it.

So why am I bringing all this up? As much as my team emphasized "don't get your expectations up", "this is brand new totally completely untested and may not work" it was damn hard not to get them up. And every month when I go for my 'adjustment/checkup' and run through the same questions, it reminds me how bad I have gotten over the years AND maybe this next adjustment will do the trick and next month I'll be CURED. My expectations.

Denise commented in a previous blog:

"From what I've read there seem to be about five sites which could be targeted
to alleviate depression. Therefore, if you were to participate in a DBS trial
and you don't find it of any benefit, what do you do next, opt to attend another
trial where they are targeting another site??? You could go on forever like
that.

Dr Helen Mayberg mentioned that a number of patients noticed acute affects
in the operating room, wouldn't it make sense, whilst they are doing the
operation for them to try stimulating more than one site to see if the patient
reacts better depending on the site that is being stimulated. Or is it not that
simple?

Also, Dr Helen Mayberg says that the patients in her study who failed to
respond to treatment showed no subgenial cingulate changes. I'm not sure which
area of the brain they have stimulated in your case but if it is the "Brodmann
area 25" have they noticed any changes in the Subgenial Cingulate area of your
brain?"

All good questions Denise, and I hope to find out the answers - but for now, we're following the 'protocol' of the experiment. This phase is more about safety of the device than the efficacy. I would LOVE for them to play with the settings for a few hours and fine tune the response, but that's not the protocol. (My apologies to the experimenters if this sort of stuff was supposed to be under wraps - I think the followers need to understand this is SLOW going for a reason. I don't like it - at all - but I understand it and I want to make sure anyone dreaming of having this done understands there is a LOT of work to do before it comes to market and gets approved).

Let me be very very clear - the informed consent was clear and I understood what they were saying - but my own desire kept thinking about the internet stories of miraculous change. One reader here, PsyFi, shared a little of her experience and it was nothing short of miraculous. Another reader and follower shared that though it took quite awhile to find the settings that seemed to help him, it was worth it.

So what am I going on and on about? With any luck, the FDA will approve the next steps for St. Jude's study which to my understanding will include up to 200 more implants. I'm all for it. However, for all of you hoping to get into it, or hoping the medtronics study is for you, or are just plain suffering and expecting this to come and rock your world when it is generally available - be prepared to find out there is more to the story than what the Internet videos/articles discuss. That adjustment phase is done 'by the book' on a rigid adjustment schedule. So even if this is going to work completely for me, getting it 'titrated' is taking a lot of time.

I can completely understand the necessity for a slow pace on such a NEW technology. I just didn't manage my expectations well. As it turns out, from what I've recently been told, a lot of the operating room experiences were transient. i.e. the patient still had to undergo a lot of trials and errors on getting it adjusted for them.

By what I've found on the Internet, including a new German study, there are still fewer than 60 of us. (Medtronic rep, feel free to give us a head count if you can - yes head count is a pun). The gizmo has 4 contacts on each wire - 1 wire on each side. Each contact can be negative or positive with different voltage & milliamps & frequency. Thousands of combinations. I don't know how long it took the pioneers of Parkinson DBS to hone in on their protocols, but it is going to take at least that long for us. And although the video above (where the woman is being adjusted) looks like it may be a simple procedure, remember we are dealing with emotions - not physical movements. A Parkinson patient can visibly see and feel whether their tremors are gone and the setting is working. For moods, it may take quite a bit more fine tuning.

Of course, being the optimist and willing to do my part to promote the science, I offered to take the programming gizmo home with me and adjust as necessary. Fat chance. And understandably it will never get to that. Just because someone has a bad day at work, we can't just go home and up our gizmo. But alas, I had to try.

I've added a link about DBS and rats. Interesting about serotonin being more effected than norepinephine (noradrenaline). I am not on any drugs that affect serotonin - I'm on drugs that affect norepinephine. Possibly I will see more rapid change when I'm able to switch drugs. (Supposedly after awhile, the study allows more testing of combinations etc). BUT - I'm not going to get my expectations up.... ya right.

Overall, putting my expectations rant to the side, I have had some interesting effects. Again, I wouldn't swear they're from the DBS, but probably are. Some of my 'blah' emotions seem to be shifting. I don't want too get detailed, but I am having 'some' different reactions emotionally than I was. I have been able to maintain 20-25 hours working however I did have some bad days and dropped about 5 hours at the last minute - just couldn't do it.

Psyfi, others, or the original Canadians care to comment? Or you can contact me if you want to be anonymous. Note the comments on the last post. A U.K. DBS patient has put together a group for "us". (I hate google groups, FYI, Yahoo would have been my choice). I think allowing us Guinea pigs to share may not be a good idea - but I will say - knowing there are others out there who have gone through this makes me feel wonderful. Maybe the sponsors should consider their own controlled groups - hint hint to the IP address in Plano). There is also another USA DBS person who has put up his own site. That should be interesting as well.

I hope everyone has a good turkey day and thanks for letting me vent.

10 Months

I recently returned from my 10 months checkup. As you can imagine, every visit has a battery of self-reports and depression instruments. On a regular interval there are extra "instruments" to measure cognitive ability and memory and such. #2 doc has the pleasure of going through one of the instruments that then turns into some magic number(s) that then goes to the programmer so that he supposedly knows what to adjust next. (This is my layman understanding).

TITRATION.

I've tried bribing them to just crank it up. I've tried charming them into cranking it up. I've tried begging them to crank it up. But they have their jobs to do and although I'm sure they're supposed to keep as neutral position as possible, it's hard not to like them, if nothing else because they are trying to help.

IF I was off during the first 6 months, then this would be 3 months of being on.

Being somewhat scientific minded, I hope at some point to know more of the details.

I wish I had kept count - but I'm sure there are a couple of the depression instruments that I have done nearly 20 times. And I can almost run down the page with my answers. This time though, I think I answered a couple of them differently.

Yup - I think there MAY be some difference.

The fatigue is unabated. My use of my "Central Nervous System Stimulant" (Ritalin) hasn't decreased in total, although I have had a couple of days where I used it less, I have also had a few days where I needed more.

My sleep pattern is rocky as ever. Most nights is a 1 to 2 hour ordeal falling asleep. My use of sleeping pills is unchanged. Again, I have had a few exceptions. Early on I reported it had changed some for the better - but it returned to its sucky ways.

The self-talk cycle that accompanies the depressive symptoms seems to be a TAD better. I don't know if that is the electricity zapping those bad thoughts away, or if I'm practicing more cognitive behavioral therapy and reducing those thoughts on purpose. (I have been making a concerted effort to challenge those more often).

The mental fog is hard to measure right now. The good news is that I have been working - up to 20 hours a week. The bad news is that my motivation is not internal - but external - the bill collectors. So, in order to "function", I have been heavily relying on my Ritalin. The Ritalin does a magnificent job of reducing mental fog, allowing me to concentrate, make decisions and remember things more easily. I've still caught myself with a few train of thought derailments, but again, I am functioning. (The paperwork associated with the new job is excruciating and I can fully understand how people get hooked on speed. Remember, Dr. Freud at one time was a big believer in cocaine - self prescribed in fact). I do keep that in mind and on weekends and whenever possible - don't take the Ritalin.

The difference that may be occurring is in the level or deepness of the depression "feeling". That pervasive sadness that rarely lifts. Now I admit I have a great mask for when I am in public - or even with my kids, so someone with a camera may not notice the difference. It's hard to describe exactly but the depth of the sadness doesn't seem AS deep as often. If I were graphing the level of sadness/grief/blues and I believe I was at a constant 6 with spikes to 10, I think recently I have been more at a 5. I still have spikes to 10, but I think the duration of those spikes may be a tad less as well.

But lets be fair about this. I am susceptible to situational depression on top of my melancholia. At the end of July and in the middle of August, I suffered through two "friends of friends" committing suicide. (Sad to say but it was a good reminder to me to keep those deep spikes in check). My own spikes have gone to 10 watching my friends (and family) suffer through those events. Because of those and my own guilt I decided it was time to come clean with my children. One cried. I think one knew (long story) and the rest took it in stride. I came clean with all the little family secrets as well. Ends up they asked more about the other family secrets than they did the operation.

The skeptic in me worries my current mood uplift is a rebound affect. Down with the suicides - up with the honesty.

Additionally, as I mentioned, I have been trying to self-cognitive-behavior control the self-talk. AND.... [for anonymity I've erased a couple of stories about another medical problem I have and how I've dealt with it]

Now you have to ask yourself about the irony of a man who would seek out an EXPERIMENTAL alternative treatment to depression but would scoff at a 4000 year old alternative treatment for pain. OK - I am intelligent - not smart. Got it.

Anyway, throwing into the mix: the situational depression rebound, the purposeful self-talk, & of course - TITRATION of my DBS.

To prove treatments work (using the experimental model) there is a statistical level of change and a level of confidence in that change that all has to be 'proven'. I am not ready to say anything has proven successful. I can say last month's mood was better than 6 months ago and way better than a year ago when I was considering ECT.

Do I sound skeptical? Unfortunately. Paxil helped for awhile. Wellbutrin helped for longer. Life is full of situations which lead to depression. But - I had a little improvement last month - bottom line. Additionally, my angel, my girlfriend, told me the other night that she thinks I am doing more and feeling better. (She probably is a better barometer than either me or the docs).

I've added 3 links to the side. 2 are recent about the original study participants still doing well. The third is about the type of depression 'they' believe will be helped most by DBS. I think that is my kind.

No Ritalin today and I made it through typing this up with only 1 derailment and it came back to me pretty quickly. Who knows.... something MAY actually be helping.

The next step

Thanks to all the well wishers and inquirers as to how I am doing. I've been putting off writing this for awhile because of my "skating on thin ice" feeling. I don't want to affect anyone's hopes/dreams for this technology.

With that said, I have crossed the 6 month mark and am officially on - whether I was before or not. Woo Hoo... All of the physical side of the operation and implantation has gone according to plan. I've used liberal amounts of Mederma anti-scar medicine on my generator scar and frankly - that stuff works. From 10 feet away you'd be hard pressed to notice it. [More cover story anecdotes]

As for the device itself.... with my skinny body, if I raise my arm - it bulges. I have had some interesting experiences with it. An acquaintance of mine is one of those slap you on the back, hand on the shoulder and shake kind of people. Twice he has poked the device. It is still a tad tender if you poke on it. But I'm sure the look on my face was more than he was expecting. The pain wasn't that intense or anything, but my expression definitely changed, trying to gauge whether he was going to notice. I was expecting something like "wow - you got some tight pecs" or something. (He's the body building type). But, neither time caused a reaction with him. Maybe I'm paranoid. (Ok, any of you that have read this blog KNOW I'm paranoid about the device).

In the first 6 months, I achieved no wonderful miraculous change. Now, let's set our expectations back to reality - this daunting depression took YEARS to overtake me. IF I was "ON" during the first 6 months, the only change noticed was a decrease in my sleeping pill needs. And frankly, I had another small change in my life about the same time - so my jury is still out as to whether the GIZMO helped or not. Maybe - maybe not.

The fatigue was unchanged. Amotivational. An afternoon nap was still a necessity. My insurance has denied my Ritalyn - they don't believe in Adult ADD. Another expense for a guy who hasn't worked full time in 3 years!

The mental fog was ~maybe~ slightly better. The mood - well, roller coaster is a fair description. God knows the mental anguish of "why hasn't this thing cured me" washed over me time and time again. E-x-p-e-c-t-a-t-i-o-n-s...... I do think I had that 'lump in the throat' sadness a ~tad~ less, but that has always been situational, rather than chronic.

According to my handlers, they aren't sure when / if it will be revealed to me whether I was on the first 6 months or not. It will be at least a year before they say, if they say at all. Fair enough.

I've developed a small medical problem unrelated to the surgery or experiment, but spent quite a bit of time with my family doc. He is very curious about the whole thing and as I've said before, very much in favor of me trying this. In discussing it, at first he believed I should see an immediate difference - like we've all read and prayed and hoped for. But the more we discussed it, the more he used the word 'titrate' as in "well I suppose they have to titrate it up with voltage and wave forms and such". Um , ok, that makes sense. If the range is say between 0 and 10 volts, you wouldn't start at 10 volts... you'd probably start at 1 and move up. And as I mentioned before, the medtronic version of this gizmo is rumored to have 4,000 different settings. The Parkinson's patients spend hours in their programmer's offices with minor adjustments making huge differences.

The depression 'circuit' that is the subject of all this research has a whole bunch less known about it than the movement circuits of the brain. (Heck, they don't KNOW all that much about any of the circuitry, but that's why I'm wired up!) So, back to my doctor's description, it would make sense to titrate the device. (Mess with all the parameters).

Obviously the original studies had some correlation as to the settings and efficacy - enough to convince the FDA and the internal research boards to add more subjects to the trials. One reader here told us that it took a rather high setting and quite a few months before he/she started feeling a difference.

All that to say, if you haven't already guessed it, my bet (and hope) is that I was off the first 6 months.

The scary part in saying that, is that there is a 2 in 3 chance I was on - and it hasn't worked for me. Scary? Why? Well, that means that I'm back suffering, waiting, hoping & praying for a cure. If not a cure at least a better way to manage it. And frankly, depression sucks.

But - as I have told myself repeatedly and have mentioned to a few others - we will find something. It may take a half dozen of these type studies before the intellectuals begin to understand the depression circuits, but thank God someone is working on it. (In fact 2 major players are working on it here in the US).

For those of you reading this who suffer from treatment resistant depression or know someone who does, there is hope. I'm presuming ANS is close to having all 30 of us implanted - if not finished. The way I understand it, once the safety of the procedure / device is proven, another 200 get implanted. With 200 of us to study, the intellectuals should be able to start drawing even more conclusions and get closer to finding the best way to treat each of our own depressions. Again, I don't know much about the Medtronics study, but if we presume they're banging at this with the same numbers and speed, there will be 400 wired guinea pigs shortly.

Not soon enough - I know. But - there is hope. For all of us with loved ones and especially with children, returning to the fun, productive people we once were WILL BE POSSIBLE. Soon.

I'm hanging in there and HOPING I have been off for the past 6 months. Maybe this WILL work for me. Maybe there is more to the study than on/off - as in titrate this group with these settings and that group with other settings. (Like keep some of us at lower voltage than others to measure the amount of depression being lifted as they increase.... etc). [I don't even know if I'm using the word titrate correctly but it sounds damn good]. It's possible (and makes more sense to me) that we 30 are merely to prove the safety of the device / operation and the next round are the ones that will have 50 kazillon different settings. Dunno. Just postulating. (another big word I like).

If I was just turned on, then hopefully I will start to feel the effects soon. [The programmer wasn't bribable to tell me whether I was on or not, but maybe I can bribe him into cranking it up to 10 - or whatever - to speed the process! Ok, probably not - just a random thought.]

Again, thanks to all my virtual friends who have expressed an interest. One in particular - T - hang in there. It's tough, embarrassing, sad, painful, disappointing and causes a great deal of damage. But I believe there is light at the end of the tunnel. (Hopefully with a long-lasting battery - cuz I don't want to pay to replace the one I have!) We'll definitely have to look into forming a TRD group - we are special - we've outlasted the disease. We are survivors. We can have empathy for those who've suffered a couple of years - even a few years - but until you've walked a decade or two in this black cloud, it's hard to understand and relate to us. (I'm afraid there are more of us than we even know).

[more cover story removed for anonymity]

And one last chuckle - my hair cutting friend has gotten accustomed to the mini-horns, but I was in need of a hair cut and she couldn't fit me in so I went to someone else. He said nothing as he washed my hair, but after he was done cutting, he remarked that I had one of those heads that people liked to study in years past. I asked him what he meant by that, as of course everyone in the place was now listening. He continued that I have the most unusual bumps in the front and a ridge over my ear.... I simply explained that I was from a different planet and those were necessary to convert my superior brain into working with such an inferior human body. I tipped him well and explained the cover story. (I can only imagine what he would have thought if he had followed the ridge down the side of my neck all the way to my chest - the wire leads from the generator to my brain. Now THAT could have been made into a REAL interesting story).

3 months and counting

I made it to my 3 month check up. They had a few more questions for me - but pretty much the same as the other check ups.

I found a dbs group on yahoo - they are a collection of Parkinsons & ET survivors who have had the dbs for movement disorders. There is a wealth of surgical information there if anyone is interested. Of course, the rest of the information like how they get programmed doesn't really apply. DBS group on Yahoo. You do have to be a member to read all the posts.

I've got a few more links to share. One in particular was interesting - Dr. Mayberg interview on audio. Although a bit long, it has a lot of the details about the study and the expectations etc. She talks about fine tuning this to better understand exactly what kind of treatment will work best for a person with depression. There are probably multiple causes for depression and multiple treatments. It sounds like she is trying to find a way to diagnose which type of treatment will work best for an individual patient. Will talk therapy work? How about a certain type of antidepression medicine? If they can get their fMRIs/PET scans and other assessment tools to really fine tune what will work for a particular patient's brain, it would be wonderful. Which chemicals are missing - then take XXX antidepressant. Chemicals ok but neuron firing is slow in this area - then try Cognitive Behavioral Therapy. Tests indicate chemicals ok and neuron firing is too active - then DBS is for you. It's really exciting and fascinating stuff.

Also, it looks like Medtronics has officially entered the race. Here's brainimplant's blog as well as the original press release which is buried in the OCD release as well.

Here's a link with an interview to one of the first to undergo this experiment. Pretty good stuff!

Since I'm sharing only the physical attributes of my experience so far, about the only thing I don't think I've mentioned is the lumps on my head where the holes are. For the longest time I felt like Hellboy with his horns shaved down. I'm sure 'feeling' it with my hand up there makes it seem worse than it is. Also, the wire from the scalp to the generator tends to be a little 'stiff' in the mornings. I don't know how else to describe it - but a little tender stretching makes it go away. Both of these things are very common to the DBS surgery and really have nothing unique to DBS for depression, but I thought I'd bring them up.

I'm at the halfway point in the study. Another 3 months and I will for sure be turned on - if I'm not already.

Choices

First, I apologize for messing up my 'format'. I didn't realize a lot of the blog was unreadable because I had messed with the colors of the template. Goofy. Oh well.

I've since been back to the "laboratory" for the routine checkups. Fill out the questionnaires; answer Dr.#2's questions; Say Hi to Dr.#1; Wait while Dr.#2 fills out forms for Dr.Programmer; See Dr.Programmer & listen to my implant being 'interrogated'; Answer more questions; Get my parking ticket stamped...

I am pretty sure whether I am on or not, but I'll not share.

My main reason for posting is because I'm still researching all of this and ran across a very interesting website that others may find interesting, especially Herb's friend. It's a list of all sorts of clinical trials. The Weblink below is for the 1400+ depression studies underway. Wowzer!!!

http://www.clinicaltrials.gov/ct2/results?cond=%22Depression%22

I also found a link: St. Jude Medical, Inc. (NYSE:STJ) announced it has been awarded a patent from the U.S. Patent and Trademark Office for treating depression using neurostimulation therapy in an area of the brain known as Brodmann Area 25. Cool. You have to wonder if in the future someone infringes on the patent, if the effected patients would have to have their generators removed by court order.... ???

And finally, I've been trying to figure out in layman's terms more about the device and the programming of it. I've found a couple of articles about the devices used in Parkinson's. If I understand the article I'm linking to here, each lead has 4 contacts on it. (I have 2 leads - or at least I have 2 holes in my head where the leads were supposedly placed!!). The little generator device is capable of being programmed to generate current on any or all of the leads and use the case as ground. Then there is the voltage, pulse, amplitude etc. (How much voltage, how long its on (amplitude), as well as how frequently it pulses on). 4,000 combinations for the Parkinson's descriptions. And not all programmers are created alike, so the people on the dbs yahoo group are always comparing which programmers in what areas are the best. I'll have to discuss this with my Dr.Programmer. I don't know if he does Parkinson's patients or if he is just for the study.

I haven't checked on e-bay, but by-golly if the little programming devices ever go on the 'black' market, I'll be buying one. (I'm JOKING folks). But it is fun to imagine all the possibilities for 4,000 different combinations. I'm supposing if the leads were in the right places, one could program any emotion..... Want to be in love with everyone? No problem. Woody Allen's Sleeper movie's Orgasmatron, no problem.

What we don't know about what we don't know!

On a final note - I will actually be getting a hair cut next week. Woo Hoo!!!!

Thinking

PsyFi recently added to the comments about her experience and in answering Herb's posting about a person who is suffering, posted a couple of names & numbers. I changed the names and numbers to the link where the main study is.... I did this for a couple of reasons. 1st, there is no guarantee the suffering person is in the area of PsyFi's doctors. 2nd, it's my understanding that the researchers have been getting a lot of calls - one of their comments to me about my blogging. PsyFi and I both know how rigorous their criteria are for acceptance into the program. I had originally posted a link to the study on this page, but took it off after conversations with my researchers.... i.e. they have plenty of people signing up and don't want to get anyone's hopes up or down.

On that note, just a little more detail on what I've been through..... I counted up 9 (yes NINE) different anti-depressant medicines I've been on. Sometimes in conjunction with each other. (One of them "imported" into the USA for me by a pilot friend). I've had 3 different ADD (legal speed) medicines. I've been in 3 different modalities of psychotherapy with 5 different therapists. I've had 3 different psychiatrists. And I went through and stay close to a rigorous self-help program.

I completely understand that anyone suffering from depression wants it GONE. I truly feel for the guy Herb mentioned. But I feel compelled to point out this treatment is e-x-p-e-r-i-m-e-n-t-a-l and may not work. A quick google shows there are other locations that are being considered in the brain for depression relief. My hope is that this technique is tested and refined to the point that a person who has severe intractable depression can be tested under PET or fMRI and the exact location for that unique individual can be targeted. It's almost embarrassing what we don't know about the brain.

I hope I don't come off in the wrong tone. (This isn't a "woe-is-me" or "I'm worse than you, so I get to try this").

A year from now, we'll know a lot more. To Herb's suffering friend and anyone else out there waiting for a cure - be patient. Hang in there. Try something different and vow to not give up. Between ECT, VNS, rTMS, DBS and new medicines coming down the road, you will find something that works. Don't paint yourself into a corner by thinking you've tried everything - you haven't because there are new things coming up daily.

I recently read a great book by Norman Doidge called "The brain that changes itself". You can find him at http://www.normandoidge.com/.

Along those lines, I re-read the article I've linked to on the right side - interview. I found an interesting quote that has had me thinking all weekend. This is from an interview with Dr. Mayberg:

"This brings up a critical point about this new treatment. DBS is not a cure-all, despite how robust the clinical responses appear to be. The DBS starts the process by normalizing a very dysfunctional circuit. For full functional recovery, you also need get adequate rehabilitation, as provided, for instance, by CBT. This is in many ways analogous to ensuring an optimal functional recovery after hip or knee replacement surgery by requiring a course of physical therapy. I think we are going to need to actually study the synergy between DBS and CBT in these patients more formally." http://www.medscape.com/viewarticle/520659

What kind of rehab will my brain need? (If this works, of course). On the one hand, I'd like to believe that when they switch me on, within a few weeks I'll have my life back. It's been over 10 years since I had a great life. Like the analogy above, if you replace a hip, quite a bit of physical therapy is needed before you can run again. I've changed careers twice in the past 10 years - 1 by choice and 1 by necessity. Could I go back to my previous high-profile job immediately? Probably not. It's going to be a process. Just getting out of the house, every day, would be monumental, and I'm sure it's going to have to be taken in steps.

I can be hopeful and optimistic though and dream a little. Dream about what it would be like to wake up in the morning wanting to get out of bed and go to work. Looking forward to the weekend for a little relaxation and time to clean the house and do laundry. Who knows, maybe even want to exercise!!! (Pre-depression I had a body fat index of 10%, which is very fit. Although skinny now, it ain't all muscle!) I look forward to the challenge. (It's been a long time since I've said that!)

PsyFi, you didn't do anything wrong - I'm just paranoid and don't want to muddy the waters of the research or piss-off any researchers. The next time you visit with your Doc, you might ask him about it.

But I'm staying grounded. One day at a time. No expectations. I am a firm believer that if this doesn't work for me, I will try something else.... as many times as I have to.