On and Off

I passed the decade mark just a few months ago and thought I should post.  I've been doing well, dealing with other non-related health issues (auto-immune).  That has brought it's own depression.

I think I previously mentioned I was not using the device.  I would occasionally charge it and run it for a few hours.  I found that it would ultimately bring some anxiety to the surface (the most common side-effect, I believe).

When I could feel the depression rolling in, I have recharged the device and turned it on until the anxiety build up to where I can feel it's uncomfortableness.  What I have found is that a little anxiety is good, if you want to get things done.  I have felt more productive and when the anxiety actually reaches a point it bothers me - off goes the device and I coast. I coast until I realize how difficult it is to get up in the mornings.  How difficult it is to think and stay focused.  How difficult it is to want to go out in public and mingle with friends.  How difficult it must be living with me.

That last one is a nasty thought for someone heavily depressed.  I am not - I am just pointing out the people who care about us don't notice the backslide either.  You don't just wake up one day and say, Honey, I feel depression is back.  And they don't wake you up one day saying, Honey, your depression seems to be acting up again.  No, it's a slow slide into the bad habits that accumulate and make it that much harder to crawl back to "Normal".

A friend recently asked what I knew about TMS.  Very little actually.  But I found an interesting article that recently came out about TMS that references an even better article about DBS for TRD.

Having ignored my device (denial) for months, I missed the second article (Why a 'Lifesaving' Depression Treatment Didn't Pass Clinical Trials), which points out that the longer the test subjects have the device, the better the odds for some success. (Ridding ourselves of all the bad habits that accumulate takes time!) It also highlights what Dr. Mayberg has been doing with her new funding.

My device is ON, currently, and it is the longest it has been on in years.  The anxiety build up to where it bothers me, seems to be taking a long time.  Did I let myself slide back too far?  Probably.  I am at least aware now, that I have slid backwards.  Is it my brain trying to plunge me back into the darkness or hopefully, more situational, based on my current life events? 

I am one of the lucky ones.  But after reading the TMS articles, I have hope for others.  I'm a little leery of the lack of more testing but I am also glad the FDA is not making it overly cumbersome to get this treatment to people who need it.  And at an affordable price.

Now - more coffee and a shower.  Then off to work.

Brain scans may help clinicians choose between talk therapy and medication treatment for depression

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Guess who's got a new published spin on Depression?   

Dr. Mayberg and Emory University.

And the article suggests THERE ARE WAYS TO PREDICT WHICH DEPRESSION TREATMENT WILL WORK FOR YOUR TYPE OF DEPRESSION


Well, they could have knocked me over with a feather with all that knowledge!  {In my 3rd blog after surgery, I was hypothesizing about where their research was headed.  8 years ago}

I don't have time right now, but I want to look up this reference at the end:
This study is supported by the following NIH grants: P50 MH077083; RO1MH080880; UL1 RR025008; M01 RR0039; and K23 MH086690.

Gotta run - more later (with maybe video - maybe not)

Article: Brain scans may help clinicians choose between talk therapy and medication treatment for depression

I found the article on a really cool website.

Whoa...  DARPA?????

I had heard rumors, but this seems to have all the info on the gov checking into DBS for all sorts of Brain Disorders

AND

They confirm my layman's observation that we are talking about significantly different types of disorders - 

Possibly different types of Depression (not just Uni & Bi)

Check it Out:

https://www.gizmodo.com.au/2017/03/darpas-brain-chip-implants-could-be-the-next-big-mental-health-breakthrough-or-a-total-disaster/

And Yes, I am doing fine......

A One Minute Review

I found this interesting; not conclusive, just interesting.

http://www.medscape.com/viewarticle/865384

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? 

 

Where from Here?

If anyone isn't aware, BROADEN study is closing it's doors.  The last round of participants are being implanted with rechargeable devices (BRIOs), if they want.  (This eliminates the 15-24 month battery replacement surgery cycle.  Rechargeables may last 10 years, I'm told).

There are more formal links etc at: http://neurocritic.blogspot.com/2015/03/update-on-broaden-trial-of-dbs-for.html

I've received a number of email this year including 2 in the last week asking if I am ok, since I haven't blogged.  I am pretty much in the same place I have been for the past couple of years.  I underwent my rechargeable battery replacement late last year.  Unfortunately, I was down to 0 while waiting on the approval to implant the rechargeable.  I struggled for a few weeks afterwards and my center saw me and made slight adjustments to compensate.  (Not sure everyone's center is as compassionate).

On August 11, 2014 I was texting with my oldest daughter.  She wrote that she had just heard Robin Williams died.  I texted back that he was bi-polar and I hoped it hadn't happened by his own hands.

We now know he was suffering from a number of brain issues.

I was going to dedicate a blog to him. At the time, the big ALS bucket of ice campaign was sweeping the nation.  I had hoped some of his close, famous, friends would put something together to bring as much attention to Depression as ALS.  (The father of an acquantence has ALS and it is a terrible disease, so I am not dogging that effort at all.  Just disappointed there wasn't more of a nationwide outpouring about losing Robin).

I did suffer a real ouch moment though.  Someone who I thought understood depression said something that made me realize just how difficult it is to change public perseption.  While watching a special on Robin, my friend said "I don't understand.  He had money, fame, family, love.  Why would he do such a thing?"

NONE OF THAT MATTERS TO DEPRESSION.

I was taken back by the comment.  This person knows what's in my brain.  I admit I took it a little personal since in my mind, I had money,  family & love (missed the fame somewhere).  The difference between Robin and me?  8 less ounces of PAIN.  (And now a gizmo that pumps electricity into my head disrupting the really bad thoughts).

Depending on the paper you read, there are between 125 and 300 of us with DBS for depression.  I've stated it before and will again, my center shouldn't have failed a FDA futility study.  It sounds like Dr. Mayberg's groups at Emroy wouldn't fail one.  There are a number in remission and a larger number that have been helped - enough so that they opt to get the rechargeable battery in, as ANS steps away and orphans us.  So this works - given the right conditions.  I pray the critics don't throw the baby out with the bathwater.

And I am grateful to the opportunity afforded me to be a participant.

I'll let you know what the separation papers say, when I get them.  No  need to show any particular loyalty to the cause - the cause is folding up the tent and walking away, it sounds like.

Emory is continuing as are a few other places.  I believe the disease known as depression will be divided into different parts and cures or ways to manage the different strains will be developed within a decade, or two.

As Herb, the VNS expert and advocate of participatns has warned, what will happen when the FDA doesn't approve it and ANS doesn't continue care?  I'm sure I can last 10 years with this thing - but then what?  I'm not real fond of calling up my health insurance provider and saying, "Oh, by the way, I had experimental surgery on my brain and never disclosed it to you, but now I need help seeing a specialist."  Think my rates will go up or will they just drop me?

Time will tell.

Again, if you are one of us and haven't joined our closed support group, email me and I'll let the powers that be know.  There are some wonderful people who started the group and check in on it regularly. (I'm hit or miss - but I'll get your name submitted).

More - when I feel like admitting I have this and have something of substance to say.

DBS for Depression Studies

Map of 24 studies found by search of depression and "deep brain stimulation" -parkinson -anorexia -obsessive ...  from ClinicalTrials.gov
16 of these are considered 'Open', as in either recruiting or about to be. (Map should be clickable, Click "Open" for just the open ones).

In the latest paper released with  Dr. Mayberg, Patricio Riva-Posse, MD, Emory assistant professor of psychiatry and behavioral sciences says "...results suggest that clinical outcome can be significantly influenced by optimally modulating the response network defined by tractography," [Um, that's a mouthful, but I'm going to translate in laymen: 'using the latest in neuro-imaging, there is a real good chance we can pinpoint exactly where the brain needs some stimulation']

(added... a shorter synopsis

Precise Brain Mapping Hones Understanding of How Deep Brain Stimulation Treats Depression ...>

So what do these pretty pictures and map have to do with each other? Everything for the future of DBS and mental illness (not just Depression).  In the map above, I excluded anorexia, OCD et al.  (Not all studies will proceed and I am sure not all studies are listed).

So the race is on.  The German-Bonn (Nucleus Accumbens) studies look "rewarding" and are moving to the Americas (UT Houston), but Bonn is continuing to chart new frontiers; while Emory is "focusing" in on reliable mapping.  Although I haven't heard anything lately, I'm sure the Cleveland Clinic still has their "head" in the game. (Bad puns intended.)

Locations mentioned in clinical trials:

• Nucleus Accumbens
• Subcallosal Cingulate 
• Internal Capsule 
• Superolateral Branch of the Medial Forebrain Bundle (slMFB)
• Ventral Caudate Nucleus
• Inferior Thalamic Peduncle

The studies seem to be split between the 2 major medical stimulation device manufactures although I can find fewer results from the Medtronics group.  I am not a Doctor nor Neuropsychologist so these are layman's extrapolations/interpretations/translations.

Now for my usual optimistic but caveat emptor: anyone considering being involved in one of these MUST fully understand the potential risks.  Here is a YouTube video of a fellow Brodmann participant that describes his terrible experience related to the surgery and follow-up care.  However even he verbalizes optimism for the research towards the end at 14:10; calling for more oversight, not an end to the studies.  Good luck Steve, and thanks for trying to pioneer this forward.  I hope something can be done soon for both your pain and for the depression. [Stanford - wake up! In my opinion, your inability to rectify this situation is soiling your name, the study's name (which needs no extra soiling at this point), and the worst - possibly contaminating future studies. And yes, I have seen Stanford  IP addresses view my blog, so I'll know when you see this - same for you ANS].

And though I don't like to give advice, here is my 2 cents on my study's current dilemma via a suggestion I recently had:  Get the exact details, in writing, of what happens if the study is cancelled.  Will they continue to provide replacement units if your insurance won't?  The question is NOT what happens if the FDA doesn't approve it - although you need to ask that as well, but even if the FDA approves it and your insurance company won't pay for a replacement.... 

Progress Is What We Look for

Dr. Mayberg shares more of her information in this link.  "Meet the Scientist".

On the bright side, it looks like the data from both those who got some relief as well as those who may not be responding is being used to map out new strategies. 

And more details on the Broaden study from the neurocritic blog. The Broaden study is one of many that have been going on, albeit the one that seems to be the largest. 

I am obviously feeling a little mixed. Not having answers to what will happen in the study is a bit concerning, but I am optimistic because the data is pointing to more (and more efficacious) techniques for the future of battling this ugly disease.

Hang on folks....  progress is being made, even though it may not feel that way.  A very good friend used to have the catch phrase "Progress is what we look for".

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?)

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.  https://www.facebook.com/groups/30167723077/  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).

St. Jude Medical Receives FDA Approval for Expansion of BROADEN Deep Brain Stimulation Study for Depression

July 11, 2011 St. Jude announced its approval from the FDA to expand the study from 3 hospitals and 30+ people to 20 hospitals and 125 people. Click here for official announcement.   Here is the important (to me) quote:

"pilot study which reported that at six months, 62 percent of the patients experienced at least a 40-percent decrease in symptoms of depression as measured by a standardized test called the Hamilton Rating Scale for Depression. Of these patients, 92 percent maintained this improvement at their last follow-up visit (typically at one year)."

which is similar to the study outcomes of many of the popular anti-depressants on the market today (paxil, zoloft etc).

At the end of the article it re-iterates what I had heard - eventually they want to expand to 231 people.  (See my ramblings in the last paragraph about the odd number 231).

OH - I nearly forgot & had to re-open the post... the announcement sends you to their website to see which site might be nearby.  Um - note to STJ - the map only shows Chicago and Dallas.

A few more implanted people have contacted me.  Almost all of the DBS Depression clinical trials show Active, not recruiting.

One person who knows they are "on" for sure wrote a couple of months ago, just to say hi.  I gave them my disclaimer that I'm thrilled to hear about their experiences but couldn't / wouldn't give them more info about my experience.  They wrote back (and I hope they don't mind me sharing)

"Don't worry about your results hurting my own chances to get better. It's honestly just relieving to know someone out there is getting [some] benefit. I know this is a sloooow process and it isn't a cure-all. But hope is good.

Oh, and this: "I believe the study should provide an LPC for each of us to vent with" - ABSOLUTELY! That would be wonderful."

Again being analytical and making some calculations, I know 10 hospitals were primed and ready to go in July with a waiting list.  At 1 every other week, that would be 5 more per hospital or 50 additional to the "37" (my guess) already implanted.  If we presume the other hospitals were close to being ready, that would mean by the end of next month there should be nearly 125 of us. I AM THRILLED! Move ahead with the study - help 62% more.  (I wish the percentage were higher, but if you consider some experts estimate there are as many as 1.5 million people who don't respond to antidepressants, this will be an option for 900,000 people). [And selfishly, until the FDA approves this, my insurance will not pay for my battery to be replaced!!  Ouch!]

If we consider the other international studies, and the Medtronic studies (which I haven't heard diddly about lately) there may be over 300 of us worldwide. 

Now for some food for thought and entertainment value, watch the movie Limitless.  Consider that one of the working theories on DBS for depression is that it boosts or enhances the effects of drugs in the brain.  Consider Ritalin (and other ADD type meds) boosts or enhances executive functions (thinking).  Consider the class of drugs called Cholinesterase inhibitors which can help memory and learning.  (Cholinesterase inhibitors are alzheimer medicines).  A couple of DBS nodes in the correct area added to drugs enhancing the power of memory & cognition....  The movie calls it NZT.  It won't be long before the ethics boards are screaming.  It won't be long until someone funds the idea of neurological enhancement of IQ with a DBS device. (And you think the use of stem-cells is controversial!!!)

Now I've mentioned I'm kind of analytical, and I've had my share of graduate level statistics classes so the following is nothing more than my rambling out loud about the odd number.  Why 231? Feel free to ignore the following paragraph as me trying to second guess "them".  They started with 3 hospitals and 10 patients apiece, but I suspect some were added and some were dropped.  Rumor has it that 1 was explanted due to side effects and 1 was explanted because they felt they were 'cured'.  (explanted = $64 medical term for "removed device").  Not sure the validity of the rumors, so take it with a HUGE grain of salt.  Officially, the way I understand FDA studies, both of those had to be counted in the statistical analysis of "62% achieved at least a 40% reduction"....  So, if 62% out of 30 achieved a reduction - the math says that would be 18.6 people.  Playing with Excel to try to eliminate a .6 of a person means there are either 34, 37 or 39 of us.  Throwing in the "92% maintained improvement", leads me to believe there are really 37 or 39 or they are just rounding without decimals to be polite.  But back to the odd 231.  Typically in controlled studies, there are 2 groups - those with the real treatment and those without.  Since ultimately we ALL get turned on at some point, the 231 is an enigma.  Often though, controlled studies have multiple groups - like if you were to compare a group taking paxil (SSRI), a group taking wellbutrin (SSNI), a group receiving therapy and a group receiving nothing.  To attempt to control it, one could try to have the same demographic population (about the same ages and having gone through the same background).  Again playing with excel and the number 231, that would mean there could really be 3 groups of 77, 7 groups of 33, 11 groups of 21, 21 groups of 11, 33 groups of 7 or 77 groups of 3.  When there were 3 hospitals doing it, the 3 groups of 77 made sense. But the press release says there are 20 hospitals.  I'm just saying "they" may be studying more than just the efficacy of "gizmo" on us severely depressed.  It could be as simple as patients who have attempted suicide, those who have had a plan for suicide and those who only have thought of suicide.  (Which is much more in-depth than the Hamilton Depression Rating scale suggests).  Food for thought and shows what happens when you THINK too much!  And NOOOO I have no Ritalin nor Alzheimer medicine in my brain right now... yet :)

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.