I am a 36 year old woman whose life has been a constant struggle due to the effects of bipolar syndrome. I also have tourettes syndrome and have been receiving ongoing treatment that has not adequately addressed the demons that I battle with on a day to day basis.

Could you possible direct me to a specialist in the Boston Massachusetts area, or at least a support group that deals specifically with people struggling with this disorder. My story, (and that of my family's story) was included in a book: Nothing to Hide; Mental Illness in the Family - by JJ Beard and Peggy Gillespie. Any advice would be most helpful.

-Cara

Dear Cara

It is the held at various locations including the Massachusetts General Hospital. The STEP-BD is described as “the largest treatment study ever conducted for bipolar disorder…and is a long-term outpatient study (5 years) that aims to find out which treatments, or combinations of treatments, are most effective for treating episodes of depression and mania and for preventing recurrent episodes.

As of October 2004, STEP-BD will be enrolling on a limited basis.” To inquire about inclusion the following was listed on their website:

Boston, Massachusetts
Recruiting Polina Eidelman
617-724-6545
or Andrew A. Nierenberg, M.D., Sub-Investigator

or for more information, call toll-free: 1-866-240-3250
or email: (website); 50 Staniford Street, 5th Floor; Boston, MA 02114; P: (617) 726-6188) has several services that may be of help to you.

According to their website, clinical services “range from consultations to long-term follow-up treatment. Long term follow-up treatment is usually available only to those living near enough to the hospital to make on-going assessment practical. ”The consultations they provide are “for patients interested in receiving a second opinion. If patients do not have a referring doctor, they will be offered referrals for continued services provided by other MGH units, affiliated hospitals or community programs. Some patients will be offered in applicable, a specialized structured evaluation, lab assessments, or participation in research. To inquire about consultation appointments call 617-724-6058.” As it sounds like the help you are receiving now is not enough, perhaps a second opinion could offer a new direction.

Another organizations I found was the MDDA-Boston (Manic-Depressive and Depressive Association of Boston, ; ), “a nonprofit, self-help organization run by and for people with affective disorders such as depression and manic-depression. MDDA members come together to share support and information with others in similar situations.” It appears the MDDA has a Boston support group that meets from 7:00 to 9:00 pm every Wednesday night at the deMarneffe Cafeteria, McLean Hospital, 115 Mill Street, Belmont, MA.

In BC we have a similar association, the Mood Disorders Association and in Calgary, this site and organization: OBAD, both of which have support groups for those experiencing mental illness. I often attended the support groups not only for the empathy I received, but more to network with others about doctors and resources I might not find on my own. The MDDA-Boston website offers in-depth information and resource links as well. For further information call the MDDA-Boston at 617-855-2795. Their hours are: Tues-Wed-Thurs, 11:00 am - 4:00 pm.

Another group you are probably aware of is the Massachusetts Alliance for the Mentally Ill (AMI), Boston . Reach them at 1-800-370-9085 OR 617-350-3191 or find out more information about the groups at . Apparently their support group (NAMI-CARE for consumers) is “currently in transition and seeking a new meeting location”. But you can contact Alison at 617-669-2920 or at for more details.

I'm sorry I don't know of resources for Tourettes syndrome. However, when contacting these other organizations, explain in addition to dealing with bipolar disorder, you also are learning to manage Tourettes. Because the people at these organizations are in the health field they may be able to quickly refer you other places.

I found and still do find the more I seek help, investigate different agencies and ask various people, I begin to put together new avenues for my treatment. Unfortunately I can't guarantee the chances of intake. I wish I could. But one of the most helpful actions I took is one you are already taking: asking, asking, and asking some more. Ask people who you think might have access to the information you want. The more proactive you are, the more likely you will find what you need.

The help of a friend or family member who can advocate for you is also extremely valuable. My father was instrumental in helping me articulate to my psychiatrist what was still not working in my recovery. Prior to my dad's help, I was out of the manias but the depressions were still very present. I thought because I was able to function during the depressive episodes, that it was a good as it gets. My father believed otherwise. We went to my psychiatrist together and he explained to the doctor what he saw. It helped the physician understand what kind of behavior I was exhibiting that perhaps I could not explain on my own. My father's actions resulted in a change in medication that helped alleviate the long-standing but subtle depressions.

I wish you a clear route to the information and assistance you need. It sounds like you are extremely involved in your treatment program which increase your chances of health enormously. Many warm wishes, Victoria