The most sought after and needed word to many a soul is the word HOPE. As long as there is a small ember of hope left inside, we can carry on. I started this blog out of HOPE - hope for a lifting of the darkness of depression. I've tried very hard not to reveal too much since I am in a study for DBS and I don't want someone making decisions based on my experience.
I will go out on a limb though and say there is HOPE.
It's been quite a roller coaster of an experience. Very surreal at times. I've communicated with people who nearly have their lives back and people who were unaffected by the procedure. The trials continue and hopefully there will be some new papers out soon.
The next word after hope is restored is the word POSSIBILITIES. If we let our imaginations wander past hope, what are the possibilities in one's life if the depression lifts or even lessens? How quickly can a person rebuild their life after a decade of darkness? I've touched on this before when asking what rehab for decade long depression would look like. If I had a hip replaced, there is a standard set of exercises and physical rehab conditioning that takes place.
In this world of the "new frontier", there doesn't seem to be a rehab protocol. Since the data isn't in yet, what are the odds that a person gets to feeling better, starts to rebuild their life, and the depression returns? The person with the replaced hip is usually told at the onset what the history is for a person who is their age in their circumstances. So, since there is no data, one reverts to hope again but adds 'what if?' What if it works? What are the possibilities?
Depression is an octopus with many tentacles (symptomology). The mood may lift but the fatigue continue. The cognitive impairment & memory fog may lift but not the amotivation. One of the worst things about this disease is self-doubt. I don't know if self-doubt is truly a part of depression or if it is learned from the other disabling factors. But here's the deal, those wonderful dreams of possibilities get interrupted by self-doubt. Anyone recovering from this disease or about any other long-term disabling disease wants their old life back. Or at least a good portion of it. What can be recovered?
Another disappointing fact is still the stigma of the disease. Let's say a person does start feeling better and wants to work again. What do you tell your prospective new employers? "That gap in my resume is when I was depressed but now I have this gizmo in my chest that electrifies my brain and I'm doing much better"?
Possibilities. Shadowed by self-doubt. "Tis better to have loved and lost than never have loved at all"? Tis better to be feeling better and full of worry than to never have felt better....
We'll see.
Joe Pantoliano of movie fame (Sopranos, Matrix) has suffered from depression and has put together some great Public Service Announcements (PSA) as well as having started an organization to bring more education about the disease and to 'end the stigma'. Here's the link to the organization: http://www.nkm2.org/. Take a look at the PSAs. It might be a good starting point for those of us who have friends / loved ones who don't believe in mental illnesses. I'll be buying the DVD in the near future.
I genuinely 'hope' everyone has a wonderful 2011 and that it becomes the year of possibilities, not just hope.
PS - I have elected to remove certain phrases and comments from previous posts that could ID me. I hope it doesn't distract from the content. I've thought about putting the label/tags back in and turning Google's advertising on (hey I could use the money). But I also have promised my handlers that I'll be careful about what I reveal. I don't want someone agreeing to the surgery because my hope meter is a little higher. I do hope anyone whose hope meter is very low, can re-energize their hope that there are new treatments coming down the road that may help them. Anybody have any thoughts on it?
Friday, December 31, 2010
Sunday, October 3, 2010
Heading into uncharted waters
First let me thank Rich for his comments on my last Blog. It's great that he has found some relief and has started rebuilding his life. Its fantastic that his docs are willing to try something a little different. One of my Canadian friends was that lucky years ago and is doing well. (She recently had her battery changed and things seem to be going just fine).
I'm not much different than the last time I wrote, so there isn't much of a personal update. My handlers are politely going through the protocols of adjusting meds and then waiting the 4-6 weeks for me to report back.
Depression & anxiety have some common real estate in my brain, I believe, so the Docs are trying to find the balance and get it addressed. I appreciate their efforts.
I am going to have to have a non-related surgery in the not too distant future. For anonymity I'll leave out any descriptions. I am traveling a number of hours in order to work with docs that aren't in my home town, both because of my own paranoid fear of everyone in my town finding out about my gizmo, and also because my insurance will actually pay more of it. I completely understand HIPAA rules that say no one in the office can talk about my conditions and even then it is supposed to be on a "need to know basis", but frankly, my town is so small that I doubt there is anyone who is more than 2 degrees of separation. (I know someone they know).
As for the insurance, OMG I could rant a long time about it. My fear here is that since I couldn't have an MRI done, my surgeon wants another test done and it will be my luck someone at the insurance company will say "why didn't you do an MRI?" and the answer will be "because he has a neurostimulator implant" and the insurance company will say - "we don't have that on our records - so we're dropping him". Ya, I'm paranoid about a lot of things.
I have another physical problem that has inoperable pain. I figured since I was going to meet my deductible I might as well have it explored again as well. That doc believes a certain drug, taken for 6 months, stands a real good chance of relieving the pain. But its a 6 month trial and if it works, you pretty much have to stay on it. (It coats the lining of your bladder if you must know). The only problem: $172/mo. Luckily the pain is transient and comes and goes as it pleases.
Maybe, if the gizmo and meds really start working well, I can get a job with better paying insurance. A good paying job would be a good start anyway.
Besides congratulating Rich and acknowledging that many of the "firsts" are having batteries changed, the point of my writing was this link about "Patterned Pulses". This whole DBS frontier is HUGE. Frequencies, milli-amps, volts, pulses.... Its going to take awhile to map out what modern science can and can't do inside our heads.
Which brings me to a thought I had while debating whether to have the surgery. The surgery itself will knock me down for at least a week, probably 2. Then rehab, etc. It was overnight to get wires put in my brain. When the Docs offered me the Broaden Study, I immediately had my answer, even if I did take some time to 'think about it'. That was a no-brainer (pun intended). The depression had ruined my life and trying something different than meds, was no big deal. I've thought 100x more about the current need for surgery. I can live with the pain for awhile longer - maybe. Just an interesting thought for anyone who is hoping to get in line for this gizmo. Give it more thought.
The first stage of the study was really focused on Safety, not efficacy (whether it works). Obviously if they are beginning to move ahead, they've established the safety and there had to be enough 'successes' to warrant moving ahead.
I'd still like to hear something from some Medtronics candidates. Does it seem to be working? (Or did Medtronics put a gag order on them?)
I'm not much different than the last time I wrote, so there isn't much of a personal update. My handlers are politely going through the protocols of adjusting meds and then waiting the 4-6 weeks for me to report back.
Depression & anxiety have some common real estate in my brain, I believe, so the Docs are trying to find the balance and get it addressed. I appreciate their efforts.
I am going to have to have a non-related surgery in the not too distant future. For anonymity I'll leave out any descriptions. I am traveling a number of hours in order to work with docs that aren't in my home town, both because of my own paranoid fear of everyone in my town finding out about my gizmo, and also because my insurance will actually pay more of it. I completely understand HIPAA rules that say no one in the office can talk about my conditions and even then it is supposed to be on a "need to know basis", but frankly, my town is so small that I doubt there is anyone who is more than 2 degrees of separation. (I know someone they know).
As for the insurance, OMG I could rant a long time about it. My fear here is that since I couldn't have an MRI done, my surgeon wants another test done and it will be my luck someone at the insurance company will say "why didn't you do an MRI?" and the answer will be "because he has a neurostimulator implant" and the insurance company will say - "we don't have that on our records - so we're dropping him". Ya, I'm paranoid about a lot of things.
I have another physical problem that has inoperable pain. I figured since I was going to meet my deductible I might as well have it explored again as well. That doc believes a certain drug, taken for 6 months, stands a real good chance of relieving the pain. But its a 6 month trial and if it works, you pretty much have to stay on it. (It coats the lining of your bladder if you must know). The only problem: $172/mo. Luckily the pain is transient and comes and goes as it pleases.
Maybe, if the gizmo and meds really start working well, I can get a job with better paying insurance. A good paying job would be a good start anyway.
Besides congratulating Rich and acknowledging that many of the "firsts" are having batteries changed, the point of my writing was this link about "Patterned Pulses". This whole DBS frontier is HUGE. Frequencies, milli-amps, volts, pulses.... Its going to take awhile to map out what modern science can and can't do inside our heads.
Which brings me to a thought I had while debating whether to have the surgery. The surgery itself will knock me down for at least a week, probably 2. Then rehab, etc. It was overnight to get wires put in my brain. When the Docs offered me the Broaden Study, I immediately had my answer, even if I did take some time to 'think about it'. That was a no-brainer (pun intended). The depression had ruined my life and trying something different than meds, was no big deal. I've thought 100x more about the current need for surgery. I can live with the pain for awhile longer - maybe. Just an interesting thought for anyone who is hoping to get in line for this gizmo. Give it more thought.
The first stage of the study was really focused on Safety, not efficacy (whether it works). Obviously if they are beginning to move ahead, they've established the safety and there had to be enough 'successes' to warrant moving ahead.
I'd still like to hear something from some Medtronics candidates. Does it seem to be working? (Or did Medtronics put a gag order on them?)
Tuesday, August 3, 2010
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.
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.
Thursday, April 8, 2010
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).
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).
Monday, March 8, 2010
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.
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.
Sunday, November 22, 2009
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.
Saturday, September 19, 2009
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.
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.