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:

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. 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:

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.


herb said...


“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).” --- 278-005

Rather than keeping me or your other readers in suspense I would think it would be kind of you and helpful if you would indicate if you perceive the therapy having improved your mood state.

In answer to your question regarding opening your site to Google and Yahoo etc. I shall presume you initiated your blog site to share your experiences and to hopefully help and inform others. With that thought in mind why would you be hesitant to expand your efforts or am I totally misunderstanding your original purpose?

As for opening the “$ google offers” why wouldn’t you also try to benefit whether for yourself or donating the proceeds to charity?

On the other hand I did not accept any advertising or promotional material or dollars for my former website as fortunately I was and am financially comfortable and I wanted to not to be accused of having my views, opinions and thoughts compromised. As it turned out even when I carefully explained the truth of certain matters there were those unaccepting of any explanation while having an accusatorial need or whatever from their biased viewpoints.

In my opinion, go for it and don’t be too proud to use the proceeds for your own needs. You’re sharing your experiences and knowledge from my perspective is all that is truly important.

As always, I wish you and yours wellness and all the good you would wish for yourselves.


Anonymous said...

Haven't gone to your links, yet. I am a little overwhelmed, but eager nonetheless, to get to them. Your blog has been invaluable.

Curious: when you say that your battery "lasted" 18 months, are you intentionally using the past tense? Or are you saying, "so far" it has been 18 months and it is still going?

Two nodules? I suspect that only one was firing during the "experimental" phase. Did "they" turn on 2 immediately after that first year was over? And, are there two on EACH lead?

Any insight you can provide is already appreciated. Write when you can. And, thanks.

Anonymous said...

Just a heads up:

- Was implanted 11/2008
- Guaranteed stimulation 5/2009

Battery just went dead, almost 2 years to the day of guaranteed, active stimulation.

Keep an eye on yours.

Be and stay well.

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