What is Success?

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

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

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

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

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

So what is success? Is a 5 enough?

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

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

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

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

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

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

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

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

Still on the Roller Coaster

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

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

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

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

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

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

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

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

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

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

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

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

Roller Coaster

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

Frankly, I was pissed.

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

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

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

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

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

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

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

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

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

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

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

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

Expectations are disappointments waiting to happen

Experimental - Efficacy - Safety - Titration - Patience - Transient

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

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

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

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

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

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

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

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

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

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

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

Denise commented in a previous blog:

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

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

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

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

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

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

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

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

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

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

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

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

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

10 Months

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

TITRATION.

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

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

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

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

Yup - I think there MAY be some difference.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The next step

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[more cover story removed for anonymity]

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

3 months and counting

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

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

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

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

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

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

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