Tuesday, February 4, 2014

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".

Thursday, January 9, 2014

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.  

Saturday, June 29, 2013

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.

Sunday, April 14, 2013

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.

Saturday, February 9, 2013

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.

Saturday, June 9, 2012

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?)

Saturday, February 11, 2012

Can you believe - 3 years?

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

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

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

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

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

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

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

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

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

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

And finally, to wrap up this post, someone has created a facebook page for US.  I am joining as I read this, but since I prefer my anonymity, it will be under the 278-005 name.  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).