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).
Friday, April 15, 2011
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.
Friday, December 31, 2010
Possibilities
The most sought after and needed word to many a soul is the word HOPE. As long as there is a small ember of hope left inside, we can carry on. I started this blog out of HOPE - hope for a lifting of the darkness of depression. I've tried very hard not to reveal too much since I am in a study for DBS and I don't want someone making decisions based on my experience.
I will go out on a limb though and say there is HOPE.
It's been quite a roller coaster of an experience. Very surreal at times. I've communicated with people who nearly have their lives back and people who were unaffected by the procedure. The trials continue and hopefully there will be some new papers out soon.
The next word after hope is restored is the word POSSIBILITIES. If we let our imaginations wander past hope, what are the possibilities in one's life if the depression lifts or even lessens? How quickly can a person rebuild their life after a decade of darkness? I've touched on this before when asking what rehab for decade long depression would look like. If I had a hip replaced, there is a standard set of exercises and physical rehab conditioning that takes place.
In this world of the "new frontier", there doesn't seem to be a rehab protocol. Since the data isn't in yet, what are the odds that a person gets to feeling better, starts to rebuild their life, and the depression returns? The person with the replaced hip is usually told at the onset what the history is for a person who is their age in their circumstances. So, since there is no data, one reverts to hope again but adds 'what if?' What if it works? What are the possibilities?
Depression is an octopus with many tentacles (symptomology). The mood may lift but the fatigue continue. The cognitive impairment & memory fog may lift but not the amotivation. One of the worst things about this disease is self-doubt. I don't know if self-doubt is truly a part of depression or if it is learned from the other disabling factors. But here's the deal, those wonderful dreams of possibilities get interrupted by self-doubt. Anyone recovering from this disease or about any other long-term disabling disease wants their old life back. Or at least a good portion of it. What can be recovered?
Another disappointing fact is still the stigma of the disease. Let's say a person does start feeling better and wants to work again. What do you tell your prospective new employers? "That gap in my resume is when I was depressed but now I have this gizmo in my chest that electrifies my brain and I'm doing much better"?
Possibilities. Shadowed by self-doubt. "Tis better to have loved and lost than never have loved at all"? Tis better to be feeling better and full of worry than to never have felt better....
We'll see.
Joe Pantoliano of movie fame (Sopranos, Matrix) has suffered from depression and has put together some great Public Service Announcements (PSA) as well as having started an organization to bring more education about the disease and to 'end the stigma'. Here's the link to the organization: http://www.nkm2.org/. Take a look at the PSAs. It might be a good starting point for those of us who have friends / loved ones who don't believe in mental illnesses. I'll be buying the DVD in the near future.
I genuinely 'hope' everyone has a wonderful 2011 and that it becomes the year of possibilities, not just hope.
PS - I have elected to remove certain phrases and comments from previous posts that could ID me. I hope it doesn't distract from the content. I've thought about putting the label/tags back in and turning Google's advertising on (hey I could use the money). But I also have promised my handlers that I'll be careful about what I reveal. I don't want someone agreeing to the surgery because my hope meter is a little higher. I do hope anyone whose hope meter is very low, can re-energize their hope that there are new treatments coming down the road that may help them. Anybody have any thoughts on it?
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?
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.