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.

8 comments:

herb said...

278-005,

Thank you very much for your introspective and very insightful reply.

I didn’t me to cause you any discomfort by bringing up the topic of periodically updating your experiences and thoughts. I do believe you offer interested and prospective patients and/or their support persons a calm, rational and perceptive intellect when considering this treatment option.

Defining words like success or the truth are in my opinion most difficult and often of one’s own making. And as we know from the nature of these disorders there are no definitive, quantitative diagnostic means and/or tests to determine the illness let alone measure it’s “success”.

I applaud you for your concerns with your son and even more so for addressing these issues with him. These mood disorders aside from wreaking havoc on the patient exact a heavy toll on one’s loved ones. Had I known back then that which I do now I would have much earlier on addressed many issues with our daughter. I do thank our lucky stars in that she has grown and matured into a wonderful human-being as well as a thoughtful, caring and doting parent to our granddaughters despite the fact I could have helped her situation more than I did.

In my role as support person and health care advocate to Joyce I don’t believe I’ve ever used the word “success”. On the other hand I’ve used words such as observed differences or discernable improvement over the past hours or days or weeks etc. I’ve gone so far as to use the word “remarkable” in terms of her therapy when comparing her MDD disorder at its suicidal worst over some three decades to this past decade and her current status or in her own words, “I’m happy and glad to be alive”. Joyce will never be quite the same individual as she was when the disorder first exhibited itself but then again neither will I.

We humans are all dynamic, unique and evolving and in my opinion we are never quite the same as we were.

I have posed the following question to another fellow DBS study subject and while I await an answer I’ll also ask you. Can a DBS patient have rTMS and have you considered and/or discussed TMS therapy with your attending physician(s) as an adjunctive or alternative therapy option?

I shall continue to read your offerings with great interest and appreciation along with wishing for you and others wellness and whatever good it is that you would wish for yourself and your loved ones.

Warmly,
Herb
VNSdepression.com

herb said...

278-005,

Thank you very much for your introspective and very insightful reply.

I didn’t me to cause you any discomfort by bringing up the topic of periodically updating your experiences and thoughts. I do believe you offer interested and prospective patients and/or their support persons a calm, rational and perceptive intellect when considering this treatment option.

Defining words like success or the truth are in my opinion most difficult and often of one’s own making. And as we know from the nature of these disorders there are no definitive, quantitative diagnostic means and/or tests to determine the illness let alone measure it’s “success”.

I applaud you for your concerns with your son and even more so for addressing these issues with him. These mood disorders aside from wreaking havoc on the patient exact a heavy toll on one’s loved ones. Had I known back then that which I do now I would have much earlier on addressed many issues with our daughter. I do thank our lucky stars in that she has grown and matured into a wonderful human-being as well as a thoughtful, caring and doting parent to our granddaughters despite the fact I could have helped her situation more than I did.

In my role as support person and health care advocate to Joyce I don’t believe I’ve ever used the word “success”. On the other hand I’ve used words such as observed differences or discernable improvement over the past hours or days or weeks etc. I’ve gone so far as to use the word “remarkable” in terms of her therapy when comparing her MDD disorder at its suicidal worst over some three decades to this past decade and her current status or in her own words, “I’m happy and glad to be alive”. Joyce will never be quite the same individual as she was when the disorder first exhibited itself but then again neither will I.

We humans are all dynamic, unique and evolving and in my opinion we are never quite the same as we were.

I have posed the following question to another fellow DBS study subject and while I await an answer I’ll also ask you. Can a DBS patient have rTMS and have you considered and/or discussed TMS therapy with your attending physician(s) as an adjunctive or alternative therapy option?

I shall continue to read your offerings with great interest and appreciation along with wishing for you and others wellness and whatever good it is that you would wish for yourself and your loved ones.

Warmly,
Herb
VNSdepression.com

herb said...

I apologize for the duplicate posting.

Warmly,
Herb
VNSdepression.com

Me said...

Just checked your blog for an update and low and behold! Alright, alright........ I'll give you a call this week. Been meaning to for a couple of weeks now...... you know how it goes.

Anonymous said...

ECT is off-limits. Therefore, I surmise so is rTMS.

There are two metal leads in your head, which are conductors to any source of electrical stimulation.

When I requested ECT, I was told I would need to be explanted (not just turn-the-device off, as is the case with VNS) because the leads are conductors.

Rich said...

278-005,

It is also good to hear from you again and finding you better than your last post.

It is not wrong for you to want the life that you want, but given the situation we find ourselves with the device and the study, it is our responsibility now to make that happen. After the initial 12 months were over it felt like I had been thrown over the side of the ship with the knowledge that the boat would not be circling back to pick me up.

During my 2 year follow-up back in June, they argued for turning my device back on with a setting of 6. I told them absolutely not, but suggested a setting of 2 divided into 1 milliamp per lead. Though "they" considered this to be a "useless" setting based on accumulated data they went ahead and did as I asked.

The next morning I awoke and the depression was gone along with my personality and most of my emotions (I still get pissed at bad drivers, but that seems more genetic than emotion).

So, I now find myself finally at peace but needing to rebuild my life again. I am unable to self trigger my depression, but I recently had a bad week of life interaction that caused the suicidal thoughts etc. to return for just a day.

I say that our lives are our responsibilites because I feel that the device will work differently for anyone who has it implanted. I also think that at the end of the day those of us who have it know more about how it works than the people conducting the study who simply compile MADRAS scores and convert them into percentages. As with the other side effects I've experienced, nobody really believes what has happened to me at the setting I'm currently at; the doctors, the study folks or my therapist.

So, I'm now embarking on yet another journey to find out who I am and what I'm capable of. I would like to have some professional help with this, but that isn't going to happen, which is fine because I'm finally at peace and playing with house money for as long as this lasts. But, I am in control now not the depression, which equates to hope (another first for me).

Wishing you the best and hoping to correspond more if possible.

To whoever inquired about rTMS, it is not possible with the device implanted since the 'M' refers to magnets. It would be the same as having an MRI.

herb said...

Dear Rich,

Thank you too for sharing your thoughts. From the standpoint of a support person I also admire your perception and introspective views of your mood state and from my vantage point you are addressing changes. Changes to my perspective are extremely important as they are an indicator that something is happening. Whether the changes are positive or negative you both seem cognitive of the situation and in your case you’ve been able to correlate parameter setting changes with mood state which in my opinion is extremely good.

To my way of thinking your attitude in knowing your own body and being assertive in your own care strikes me as being both positive and favorable attributes. Much as the medical professionals would like to think they know what is going on the fact that you live with yourself 24/7/365 gives you, in my opinion, a far better understanding of yourself and your mood state.

I find your comment about lowering your parameter setting and finding it suits you better correlates to similar experiences shared with me relating to a different neuro-modulation therapy in which the doctors and/or patients thought higher was better only to exacerbate the depression in some individuals and when decreased the depression abated and patient did better. I think the responses to neuro-modulation are no different than drugs in that each individual is unique and so to their responses.

I also applaud you for having the courage to experiment and to respectfully challenge the authorities. As difficult as it may be to state to a depression patient to have patience, I as very long time support person, encourage you to continue on your path as I see you going in the right direction. It might not be perfect, expeditious or exactly what you want but according to your writings it is better and that in my opinion represents a significant improvement. From my vantage point I’ll also share that your statement of having suicidal ideations for one day would also appear to me to be a significant improvement when compared to when my spouse experienced those similar ideations for weeks or months at a time.

I also remind myself that we humans are dynamic in nature and the aging process in and of itself are constantly changing us and that we can never be what we once were.

By way of sharing information please know that it is possible to utilize ECT as an adjunctive therapy and so to MRI under certain circumstances. Caution certainly is advised in all cases and collaboration with one’s learned attending physician(s).

I listed two links for purposes of information but would suggest the reader search “DBS ECT” or “DBS MRI” or confer with one’s physician for additional information.

http://www.prd-journal.com/article/S1353-8020(05)00086-6/abstract

http://professional.medtronic.com/wcm/groups/mdtcom_sg/@mdt/@neuro/documents/documents/dbs-2007-mri.pdf

I still have yet to come across information relating to DBS and TMS or rTMS as a concurrent therapy option and I would appreciate anyone citing information for me.

As always I wish you all wellness.

Warmly,
Herb
VNSdepression.com
vnsdepression at gmail dot com

herb said...

Dear Rich,

Thank you too for sharing your thoughts. From the standpoint of a support person I admire your perception and introspective views of your mood state and from my vantage point you are addressing the importance of recognizing changes. Changes to my perspective are extremely important as they are an indicator that something different is happening. Whether the changes are positive or negative you and 278-005 both seems cognitive of the situation and in your case you’ve been able to correlate parameter setting changes with mood state which is extremely good.

To my way of thinking your attitude in knowing your own body and being assertive in your own care strikes me as also as being both positive and favorable attributes. Much as the medical professionals would like to think they know or have a handle on what is going on the fact that you live with yourself 24/7/365 gives you, in my opinion, a far better knowledge of your bodily functioning and mood state.

I find your comment about lowering your parameter setting and finding it suits you better correlates to similar experiences shared with me relating to a different neuro-modulation therapy in which the doctors and/or patients thought higher was better only to similarly exacerbate the depression in some patients and when decreased the depression abated and the patient did better. I think the responses to neuro-modulation are no different than drugs in that each individual is unique and so to their responses.

I also applaud you for having the courage to experiment and to respectfully challenge the authorities. As difficult as it may be to state to a depression patient to have patience, I as very long time support person, encourage you to continue on your path as I see you going in the right direction. It might not be perfect, expeditious or exactly what you want but according to your writings it appears to me to be better and represents a significant improvement from suicidal ideations. From my vantage point I’ll also share that your statement of having suicidal ideations for one day would also appear to be a vast improvement when compared to when my spouse experienced those similar ideations for weeks or months on end.

We humans are dynamic in nature and the aging process in and of itself are constantly changing us and based upon nature’s process we can never be what we once were.

By way of sharing information please know that it is possible to utilize ECT as an adjunctive therapy and that MRI is possible under certain circumstances. Caution certainly is advised in all cases as well as collaboration with one’s learned attending physician(s).

I listed two links for informational purposes but would also suggest the reader research “DBS ECT” or “DBS MRI” on their search engine and confer with one’s physician for additional information.

http://www.prd-journal.com/article/S1353-8020(05)00086-6/abstract

http://professional.medtronic.com/wcm/groups/mdtcom_sg/@mdt/@neuro/documents/documents/dbs-2007-mri.pdf

I still have yet to come across information relating to DBS and TMS or rTMS as a concurrent therapy option and I would appreciate anyone citing information for me.

As always I wish you all wellness.

Warmly,
Herb
VNSdepression.com
vnsdepression at gmail dot com

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