Friday, December 31, 2010
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....
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
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
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
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
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.biomedcentral.com/content/pdf/1756-0500-3-60.pdf (more of a paper review)
and the most important one:
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.