Below is an article that appeared in the Vero’s Voice, a Vero Beach, Florida newspaper
Alzheimer & Parkinson Association opens doors to Essential Tremor
By Joan Marie Barringer, MEd, CHT
Last year, I phoned the Alzheimer & Parkinson Association of Indian River County and asked if I could start an Essential Tremor Group there. After explaining the need for help for those individuals who have been diagnosed with the tremor disorder that affects more than 10 million Americans, the answer was affirmative. I explained Essential Tremor (ET) and my personal story.
When I was a child I was bullied. Kids made fun of me even though I was smart. Remembering comments like, “You are so nervous,” and, “Why can’t you stand on your own two feet?” would bring tears to my eyes. My friend, Bob Votruba of One Million Acts of Kindness, knows what I mean as he speaks to teens about the pain of bullying and the need to be kind. I felt so alone back then. Speaking in front of the class was terrifying. Rhett Palmer asked during a radio interview, “Didn’t it give you compassion?” I had to answer, “Yes.” “You aren’t shaking much now,” he mentioned. I had to admit that he was right. My body, mind and spirit remedies have enhanced my quality of life. I am now content as a motivational speaker.
I have my days. That is my need for the support group. I have a Master’s in Agency Counseling and I am working on a PhD in Holistic Life Counseling. I help a variety of individuals now, but ET is close to home. I started the first ET support group for the International Essential Tremor Foundation (IETF) in Washington, DC at Georgetown University Hospital. When I go to a doctor’s office, writing can still be a challenge for me. I ask for help. I teach others to open up and tell people about their tremor. So many keep it a secret and have expressed feelings of shame. In the DSM, the book of diagnoses, it states that those with tremor can have “social phobia”.
Many are misdiagnosed. One twelve-year-old boy was diagnosed as bi-polar and was prescribed Lithium, which has tremor as a side effect and exacerbated his condition. His parents considered putting him up for adoption. In my research, I noticed that The Washington Post had reported that Katharine Hepburn died of Parkinson’s, but she had recently spoken to a few thousand in California about her ET. These misconceptions are all due to lack of information.
I am on the board of HopeNET, headed by CEO Peter Muller, a non-profit organization comprised of physicians, clinical researchers, counselors and nurses. NET stands for “No More ET”. Organizations are continuing to work with doctors and speak to school children about ET. I went to Congress with the IETF, not to ask for money, but we asked for a month of ET Awareness. The month of March became official in 2010. We are now attempting to spread the word. Unlike what some people, even professionals believe, ET can be be disabling with emotional ramifications. Individuals with ET can have difficulty maintaining jobs or functioning in general. This condition has not gotten the support or financial backing it deserves. Research for the only medication for ET, 1-Octanol, was discontinued due to lack of funding. In the magazines of the American Academy of Neurology, ET isn’t mentioned on the list of neurological conditions, even though it is the most common movement disorder.
The good news is that Peggy Cunningham, Executive Director of the Alzheimer & Parkinson Association, is hosting the first Essential Tremor Awareness Day in Vero at the Northern Trust Bank on February 7, 2013. Neurologists specializing in ET will speak. Call the Association at 772-563-0505 for reservations. The ongoing ET Support Group meets on the first and third Wednesday of the month at 2:00 pm.
Thank you to Vicki Suplizio, Vice-Chair of the Alzheimer & Parkinson Association of Indian River County, for your support.