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.
Sunday, April 14, 2013
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.
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?)
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).
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).
Saturday, September 24, 2011
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:
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)
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 :)
"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.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!]
Oh, and this: "I believe the study should provide an LPC for each of us to vent with" - ABSOLUTELY! That would be wonderful."
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 :)
Friday, April 15, 2011
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).
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).
Sunday, February 20, 2011
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.
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.
