Sunday, February 3, 2008

Bipolar Wellness Pilot Program

Dear Presidential Candidates:
One of the key issues for me in the upcoming presidential campaign is mental health. I am only interested in supporting a candidate who will establish mental health insurance parity, support a comprehensive and innovative Bipolar Wellness Program, and will listen to bipolar consumers who are not affiliated with mental health organizations that are funded by pharmaceutical companies--as well as those who are.

(As an aside, I am not anti-medication although I am medication resistant. However, I strongly believe that medication--even when it works--should only be part of a larger wellness program.)

The participants in the Bipolar Wellness Pilot Program I am proposing--which certainly could use tweaking--should be the most successful and motivated bipolar consumers. The theory behind this is that most programs are provided for the sickest people who are in psychiatric hospitals, and/or those suffering from alcohol and drug addiction and/or other psychiatric conditions in addition to bipolar disorder. So, the results are rarely valuable to those of us who are just bipolar, have been highly disciplined and have worked terribly hard to get well, and still suffer from severe depressions for months at a time.

I've spent more than 12 years researching this illness, trying to cope with the fall-out of being so ill, trying to be remain hopeful and upbeat for my son and my husband, and trying to survive when the psychic pain of these continual depressive episodes has been overwhelming. The Bipolar Wellness Pilot Program I'm recommending is intended for people like me. If you could just give us a chance to get well, then perhaps we could finally learn something significant that could help others.
Bipolar Wellness Pilot Program
1. A complete physical examination with all possible blood work to determine whether there are physical reasons for this illness.

2. A complete psychological examination.

3. Personality and temperament tests to determine whether there are common behavioral patterns that could be addressed in a skills-based class.

4. Providing a Wellness Manager (WM) to oversee each case, discuss the treatment the consumer has received, and the treatment she would like to receive. The WM will help consumers choose a counselor or a therapist, a psychiatrist, possibly a psychiatric nurse, and any other medical team members. In conjunction with the medical team and the consumer, the WM will help the consumer determine whether she needs person-to-person visits, telephone conversations, or online visits, and how often they need to be scheduled. The WM will help the consumer decide whether she wants to participate in a cognitive therapy program, an interpersonal therapy program, and or an educational skills-based program.

5. The WM will help set up adjunctive treatment options, including including art therapy, music therapy, biofeedback, acupuncture, neurofeedback, hypnosis, light therapy, writing therapy, massage, horticultural therapy, and stress management (among others), and allow consumers to participate in a reasonable number of programs.

6. Every consumers' medication history will be entered into a computer program to determine what medications she has taken, in what combinations, and what dosages, and what the outcomes have been. This data will be evaluated by a highly skilled doctor who specializes in psychiatric medication and who will make recommendations to the consumers' psychiatrist.

7. The consumer will meet with a nutritionist to determine whether her dietary needs are being met and to develop dietary recommendations.

8. The consumer will participate in a yoga program and/or meet with an exercise/movement specialist to develop an exercise program, which will be provided free of cost at a local YMCA or Bipolar Wellness Center.

9. The consumer will participate in a weekly mindfulness-meditation program.

10. The consumer will be provided with a computer generated mood chart that she will fill out on a daily basis, and which will be fed into a program so that mood charts can be analyzed on a daily, weekly, monthy, and yearly basis.

11. To launch each program, consumers will spend five days in a Wellness Center so that all the medical tests and lab work can be done, psychological evaluations can be completed, medications can be evaluated, and they can develop a relationship with their Wellness Managers, meet with medical staff members, and wellness team members, and begin participating in wellness activities.

12. The length of the program will have to be determined and a method for evaluating progress determined. As with any relationships, some teams members will have to be replaced over time, and adjunctive therapies adapted or changed. As various needs arise, new program elements including career-related advice will be provided.

I have no idea what kind of budget we're talking about but if one compares the Bipolar Wellness Pilot Program I am proposing with the $16 million National Institutes of Mental Health Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD), one would have to conclude that my program cannot help but be more effective, less expensive, and of far greater value to the bipolar population.

Begun in 1998 and concluded in 2005, the STEP-BD researchers treated 4,360 patients. In 2006, Roy M. Perlis, M.D., one of the chief investigators of the study, told Jim Rosack from Psychiatric News, "We still have a lot to do." The results he was focusing on at the time were based on 1,469 patients who participated in the program for at least two years.

Rosack reports the following, "The researchers found that slightly more than half (858 patients, or 58 percent) of this group achieved recovery, defined as having no more than two symptoms of the disorder for a period of at least eight weeks during the two-year follow-up period."

"Within that two-year window, nearly half of those who achieved recovery (416 patients, or 48.5 percent) relapsed; almost twice as many patients who relapsed suffered a depressive episode (298 patients, or 34.7 percent) than those relapsing to a manic, hypomanic, or mixed episode (118 patients, or 13.8 percent)."

As far as I'm concerned, these results are dismal. I'm hoping that whomever becomes president will appoint a blue-ribbon committee to determine the following:

1) Why the STEP-BD, the first real study to determine the "best treatment methods for bipolar disorder," wasn't begun until 1998 despite the high rate of suicide for bipolar disorder and the large quantity of psychiatric medication that is prescribed for it;

2) Why STEP-BD was such a pedestrian study and focused so heavily on medication and a "core psychosocial intervention" as opposed to other treatments options;

3) Why the researchers were so surprised to learn that the depressive side of this illness is more likely to occur than the manic side (despite the fact that you could search hundreds of online sites and have consumers tell you this without spending $16 million); and

4) Why the pharmaceutical companies have a lock on this illness and why funding is so heavily focused on pharmaceuticals rather than other treatment options. One would also have to ask why there aren't better medications with fewer side effects, and how doctors determine which medications to prescribe in what combinations and dosages. Finally, someone should be asking consumers whether the medication has worsened their condition rather than improved it.

As you can see, there are so many issues to discuss about the STEP-BD and the treatment options in general. The problem is: Who's in charge of bipolar disorder within the federal government? Who's accountable? Who decides what programs to fund?

Perhaps I would know more if I belonged to a mental health organization but I don't. The issue is that I don't consider myself "mentally ill." I believe that label is stigmatic and self-defeating. I look at illness from a mind-body perspective and don't understand why being bipolar is worse than being diabetic, having high blood pressure or heart disease, or cancer.

In closing, I guess my point is that I don't want to die from this illness, but I am finding it increasingly difficult to withstand any more depressive episodes. If 50 percent of the diabetic population tried to commit suicide, the American people would would be appalled. But manic-depressives are killing themselves on a regular basis and no one seems to care.

At this point in my life, I feel that my only legacy is the pain and suffering I have endured...needlessly. And I need someone to care. More than that, I need someone to help me implement a Bipolar Wellness Program that I believe would work--for me and for others who live with this debilitating illness.

Sincerely,

Susan Bernard

12 comments:

Merelyme said...

wow! this is so well thought out and clear...i hope someone listens.

we are talking about meds over at my place...feel free to stop by and offer your opinion.

artpredator said...

well said, thoughtful ideas; I would fit right in!

may Clinton get the message!

I am new to your blog, so not sure where or if you have discussed omega 3s. I have been using them since 2000 with great success to moderate both the manic episodes and the depressive ones. I have not had a severe episode since I started taking Omega 3s. It has also helped with my night terrors, and in fact, when the NTs occur reminds me to maintain or up my omega 3s.

Bipolar Wellness Writer said...

Thanks Merelyme and Artpredator,
I'm sorry I couldn't join the discussion about medication but today wasn't the best day for me.

And I have tried omega3s but they didn't work for me. But I do understand that they work for some people.

Susan

mylifewithbipolardisorder said...

Hi, I am also on Omega-3, very high dosage daily, as my kind friend who supplied me with them did some research and said bipolar need to be on high dosage and it can help to stabilise moods. He is very against medications because of the side effects. But while waiting for Omega-3 to work in the longer run, I am continuing with my mood-stabiliser (Lamictal) and anti-psychotic (Seroquel) as I fear my condition will worsen without medication. I also do regular vigorous exercise at the gym every morning and it helps me to be off my anti-depressant after 2 months during a relapse of depression recently. Sometimes I also go for walks at beach and garden. I enjoy photography as it gives me a sense of achievement in taking photo. Hope you feel better soon, Susan. Take care. Regards, Nancie

Bipolar Wellness Writer said...

Dear Nancie,
Thanks for your kind thoughts and for the information about what you're doing to get well. I also exercise (although not as much as I should), garden, and I've recently taken up photography.

It may well be that some people must remain on medication to control their symptoms. There are a lot of people who read this blog who are. And I imagine that had it worked for me, I wouldn't be so critical.

But I took 25 different medications in different combinations, and dosages--and was sick almost every day for six years. Then I tried once more and was sick for an additional two years.

In my case, the medication made the illness worse rather than better. And it took 25 years to get a diagnosis.

Again, thanks for sharing!

Susan

Gianna said...

Dear Susan,
If I may make a suggestion...the president is very unlikely to take up this cause. I think your program is well thought out and has many important features. I suggest you send it to congress people and senators and to SAMSHA.

For good or bad the president deals with things on a much more macro level. The smaller departments and politicos are more likely to pick up a cause.

You may or may not know that I feel medications are very much over-utilized and I would want to know that alternatives would be sought out. That is all that makes me feel a bit nervous about this program. I know you feel similarly as far as pharma getting involved, but I think that it's likely that it would indeed be very much involved.

I appreciate your hard work, however and perhaps if you do find an ally in congress you may be able to help them hold to your ideal.

Bipolar Wellness Writer said...

Dear Gianna,
Thanks for your comment. Of course you're right about the president. I just need to figure out how to find a group of consumers who would agree that the current treatments are inadequate and embrace a philosophy that's similar to mine.

I would also need to find psychiatrists, psychologists, and a wide range of people dealing with alternative medicine who would support a program like this--or one that evolves from it.

The problem is that I'm not reading about anyone within the psychiatric profession who believes in a comprehensive Bipolar Wellness Program. And I've personally been treated by so many alternative healers who are charlatans that there are few people I trust.

So...for now...I just thought I'd send this out into cyberspace and see how people respond.

Susan

mylifewithbipolardisorder said...

Dear Susan,

My heart goes out to you in your difficult situation. I know of an overseas minister's wife whose condition is similar to yours. She is still not properly diagnosed even until now though she thinks her condition is very similar to my bipolar. And her depressions are very awful and terrible ones, worst than mine. She is totally grounded for months. These episodes have become more regular, more prolonged and harder to bear for her. It usually lasted for 6 months to a year or so. She is still in the midst of one now. Like you, she has tried many type of anti-depressant and none of them help her much. She suffered terrible side-effects when on them which make her even sicker. So often she has to stop them before experiencing their good effects. Being a minister's wife, makes it even harder for her but God is still sustaining her. She recovered usually after many months even without the help of medication. I pray for her daily. I wish I know what can help you and her.

I know many people are not for taking medication because of the long-term side effects. I am researching into alternatives too and currently only trying out Omega-3 through the kind provisions of 2 friends. As of now, I know it is better for me to be on these medications which is helping me to function. I fear if I stop, my condition will worsen again. Now that I am more functional, I try to read and do more research, and learn how best to manage my condition. I hope to post more of these articles and helpful strategies or alternatives I am reading on my blogs soon.

Please take care. I will keep you in my prayers. Hope you will feel better soon.

Remembering you,
Nancie

Bipolar Wellness Writer said...

Dear Nancie,
Again, thank you! It would seem like you doing many of the right things--exercise, gardening, being with friends, praying, and maybe taking the Omega 3 Fatty Acids.

While psychiatrists tend to believe that everyone should remain on medication forever, I'm not really sure if they know that's true. However, if it's working for you, and you can deal with the side-effects, then I wouldn't worry about it--for now.

I do believe that exercise and stress management techniques are critically important. For me, being in the sun is critical--even on a dreary day. I've tried acupuncture, mega-vitamins, naturopathy and so much more. It didn't work for me but that's not to say that it doesn't work for others.

For now, you should feel blessed that your medication is working and you're feeling better.

Again, thanks for your thoughtful comments.

Susan

JayPeeFreely said...

Mere took the words out of my mouth: WOW!. I will post a link or excerpts from this posting on my blog Susan. Also, Should Be Famous put up their link to you.

We'll get the word out!

(I posted an endorsement of a candidate.)

Anonymous said...

I hope your ideas will become a reality someday. God knows I could use a program like that..

Bipolar Wellness Writer said...

To JayPeeFreely: I did see the piece you wrote for "Should be Famous." I'm not sure if I ever thanked you. What a guy! I think I'll show it on my site tomorrow.

To Anonymous,
Wouldn't it be great?