Atlantic City OT Meeting October 12-13-14-15 2010
Mike * from Spain, opened the meeting on Wednesday, October 13, welcoming everyone and stating the purpose which is to meet others who have OT, share histories and coping strategies. “We will not leave here with a cure or answers, but we will have a better understanding,” he promised. Mike has had OT for 13 years and was only diagnosed two years ago.
Mike’s doctor thinks Mike is “rare and interesting” unlike, according to Mike, how his wife sees him! Of all the disabilities on the movement disorder spectrum (MS. CP, ALS, and other motor neuron anomalies) OT is probably the least restrictive, but also the least easy for others to understand. It is also the least studied because there are so few of us. So far, it has been up to us to find our own accommodations. “I absolutely milk this!” Mike continues, “I use a wheelchair whenever it is to my advantage and I push the chair the rest of the time!” Mike’s father had Parkinson’s. Mike’s doctor told him to look up all the meds and choose one but essentially, there’s no cure, no meds that work.
While in hospital for heart surgery, and on oxygen last year, Mike’s tremor disappeared for about two weeks. He plans to explore this oxygen phenomenon further.
Mike thanked Gloria for starting the OT website that has brought us all together and has provided a forum where individuals and medical professionals can share information. He has had cards made that explain OT in the briefest, most succinct way which he gives to people he interacts with in his travels,m and he generously handed them out in quantity to everyone at the meeting.
Gloria* from New Jersey recalled how for many years doctors thought her symptoms were related to back problems. When back surgery didn’t help, she searched an additional 12 years. When finally being diagnosed at Columbia Presbyterian Hospital in NYC with OT – her son Jeff* encouraged her to start a website and within two weeks, she heard from another person with OT. After many changes in meds, Gloria takes neurontin which calms the anxiety that triggers adrenaline and aggravates the tremor.
“OT is not life-threatening, but it is life-changing and we have to learn to live with anticipating how to accommodate for not being able to stand,” said Gloria. She urged people to stay active and involved and “not to worry if you totter at bit.”
“Don’t be afraid to focus on yourself,” she continued, emphasizing that we can all raise awareness of OT by explaining it to family, friends and medical professionals. There are 7,000 orphan disorders according to NORD, only 200 of which have treatment. The rest including OT are not being researched. More government funding is needed for rare disorder research. Gloria thanked Peggy Whitta and Mike Senker for organizing the meeting and all the other program options for participants.
Rita, from New Jersey, has had OT for 12 years, was initially diagnosed with “gait” problems and exonal neuropathy. Recommended B12 shots did not seem to help and she was eventually diagnosed with OT at Columbia-Presbyterian. Her current neurologist sees five patients who have OT. Rita continues to take B-12, Co-Q10, and Vitamin D. She spent six months in Bali prior to having OT and wonders if something there might have started it.
Helen* of Toronto, CA, knows of no other tremor disorders in her family. Diagnosed in 1999, Helen decided not to take the recommended clonazapam. She began exercising with a personal trainer and found relief and pleasure through walking. She has completed three half-marathons (walking) and works on body core strengthening exercises and walking about an hour each day. Helen feels that our state of mind—how relaxed, calm and confident we are in any given moment— affects the tremor. Her best strategy is to make the most of the situation and she continues to feel better since increasing her exercising. She also continues to work two days a week doing play therapy with children.
Pat* from New Hampshire was diagnosed in 2000 and has had OT for 14 years. Pat continues to work full time in development for a large Rehabilitation Center for children and adults who have multiple disabilities. “At home, my best accommodation is a drafting chair on wheels that I use in my kitchen. I love to cook and entertain and continue to do so.” Pat has tried a laundry list of meds, but currently takes none other than multi vitamins and extra B12. She uses a folding stadium seat for traveling and a wheelchair in museums and finds that a glass of wine is the best medication. There is Parkinson’s in her family.
Peggy* of Ontario, CA, is in her seventh year with OT. She was diagnosed at the Mayo Clinic in Rochester, MN and was instrumental in setting up our meeting there two years ago with Dr. Matsumoto with whom she has stayed in touch. Peggy has tried clonazepam, lyrica and primidone but does not take any meds now. She is active in curling, kayaking, cross-country skiing and this summer completed a five-day, 122-mile bike trip in VT which she said she will definitely do again! Peggy thinks a sense of humor is the best coping skill!
Cindy and her husband, Richard are from Pennsylvania. Cindy is an RN who trains terminal patients to use home dialysis equipment. She was on call 24/7 and doctors thought it was stress at work that affected both her arms and legs. Since she was 11, she has had migraines and during recent years has dealt with the deaths of several people close to her including her only son. Her sister, also an RN, set up an appointment in Michigan that led to Cindy’s OT diagnosis. Currently on family leave, Cindy is taking klonapin.
Rosemary and her husband, Daud, live in London where Rosemary works in the court system. She first noticed the tremor while living in the Philippines, some 20 years ago. She finds it now impossible to do standard social gatherings, shopping or even to change direction suddenly while walking. Rosemary continues to work as a magistrate. She entertains by having cocktails at home and then walking her guests to a nearby restaurant. Her sister-in-law, a radiologist, diagnosed the OT. And finding the website was a huge relief. Although she still takes lorazapam, Rosemary finds that none of the meds have worked.
Maggie and her husband Buddy came from Oklahoma. Maggie first noticed the OT 12 years ago while playing golf. Her father had Parkinson’s. In 1993 she diagnosed herself through the website. Her doctor’s response was “You can’t believe everything you read on the Internet!” She now goes to the Baylor Movement Disorder Clinic and takes neurontin daily and sees a difference if she doesn’t take it. Maggie stays active. She was a gymnast in high school and balance beam was her event. Now she rides a bike and recommends a cane with a laser beam that shows where to step.
Stella traveled from Winnipeg with her daughter, Sharon, and friend, Gloria. She has had OT for 12 years and her doctor who diagnosed her told her about the website. Stella worked until three years ago. She uses a walker with a seat and brought her traveling, light-weight model (one of three) with her. The walker enables her to shop and travel. “My husband, daughter and friends are wonderful,” she shared.
Morris and his friend, Barbara are from Florida. Morris is 85, and retired seven years. He finds walking very difficult and uses a wheelchair in airports. He is still undiagnosed but both he and Barbara are sure it’s OT. Barbara noted a number of recurring themes: people with OT seem to be very active, especially before the onset of OT, most first noticed the symptoms in the 1990s and many doctors are not at all comfortable about something like OT that they know nothing about. Some even suggest it’s in your head.
Gloria explained that the website is tracking age of onset and is seeing people registering from their 40s to 70s. She has had emails from people in their 20s and 30s and related one case history of a young girl who is 11 but whose symptoms have since disappeared. All walks of life are represented and even though at first the respondents were mainly women, the numbers are beginning to even out.
Buddy noted that Maggie was “an island” for a very long time. “Hope is important. Don’t give up!” He admitted he might have been a skeptic early on and that it was good to hear everyone’s stories.
Stella’s daughter, Sharon, has seen her mother make progress. “It’s very exciting to see my mother cope with this. No one in our family is giving up!”
In the afternoon session on Wednesday, the group asked a lot of questions.
Are Parkinson’s and OT derived from the same gene?
Would cold water and ice packs eliminate the tremor and why?
Would oxygen eliminate the tremor and why?
Do most OTs have family members with Parkinson’s or other movement disorders?
How many OTs handled mercury when they were children?
Ways to help other people understand this disability?
Could OT be caused by Dioxyn? Pesticides? Flu vaccine? Aluminum (some of us drank from aluminum glasses)?
Are we pre-disposed to getting OT and might it be triggered by something environmental?
Will Dr. Russotto at the University of Nebraska be doing OT clinical trials any time soon?
Would Dialectic Behavior Therapy (DBT) which helps people learn new brain pathways work for OT?
Would hypnosis work?
Peggy reported that she had received an email from Dr. Russotto which she forwarded to people prior to attending the meeting. The email detailed some of his plans once the research is up and running.
We decided as a group that we will wait and see what happens with Dr. Russotto's planned research projects. He has indicated that he is still working on the budget and he will be applying to NORD for some funding also. Peggy will keep us informed about further developments with Dr. Russotto.
OT appears to be progressive, advancing to plateaus. For those who have been measured with electrodes, the tremor seems to begin around 14 hz, advancing up to 19 hz. In order to be tested, those already taking meds would have to stop their use—not always advisable.
Peggy suggested sending the MS survey to everyone as a means of gathering general information about potential causes and connections. The group can take the survey and keep it for now to share with their own physicians. It may be helpful to update it annually. If it appears that this information would be useful to Drs. Russotto or Matsumoto, Peggy will advise us.
Gloria explained that the website cannot offer lists of doctors or clinics but you can SEARCH through the website for information of this nature.
Rosemary, Peggy and Helen noted that in Canada and the UK, doctors (neurologists) routinely test for the intensity of the tremor and order an MRI for every movement disorder patient.
It has been documented that the incidence of tremor-type disease is higher among people who have lived or work on a farm where pesticides were used. In fact, Gloria grew up on a farm. But then, we must look at all the people who farm and who don’t have OT!
The group was asked how they handle the chance meeting where someone stops them to chat. Answers ranged from “I have a neurological disorder and I can’t stand” to handing out the OT card that Mike devised, to saying “I have balance issues” or “I have back problems.”
Helen, who explored DBT to improve sleeping, said that while she is not sleeping better, she is feeling better about it!
Acupuncture has been tried with results in one case and none at all in others, proving only that we are first and foremost individuals. Four of those people attending also have Restless Leg Syndrome. Again, is there a connection or not?
And lastly (but not least) is the consensus that a glass of wine or a gin and tonic or two can sometimes make OT much more manageable!
Led by Peggy, the group paid tribute to Jeff* for designing the website and his constant dedication of his time spent in its operation. Jeff knew the power of the Internet for communication and with help from Beth* encouraged Gloria to go public at a time when people were just beginning to connect on the Internet. We are meeting today and sharing all this information because of their work and foresight.
The group discussed various ways to raise awareness about OT. We agreed that FaceBook would probably undermine the credibility established by the OT website. The writers among us could create articles even for our local newspapers and Pat agreed to contact Oprah to see if she might be interested and having a segment on OT with Mike and Gloria.
Peggy shared with us how she organized a fundraising dinner and quilt raffle for her family and friends that involved 70 people and raised $14,500 toward our goal of $35,000 at NORD. Peggy is hoping that others will follow her lead and do their own private fundraising within their own comfort zone. She emphasizes that fundraising on any scale is important and to please not be intimidated by the amount.
NORD (National Organization of Rare Disorders) is the umbrella 501(c)(3) nonprofit that enables us to raise money for research. Our OT Fund is currently at $25,770. When we reach $35,000, NORD will send out Requests for Proposals (RFPs) to various research entities. This will help to create awareness of OT in a range of medical communities. We have been told by NORD that we will have a say in the final decision and we would like to keep that decision "open" to all possibilities. NORD’s Medical Advisory Board will evaluate the proposals and award a grant of $30,000 for OT research to the best candidate. At that point, we will begin raising another $35,000 which is the minimum amount that can be awarded.
At the end of our day-long meeting, it was agreed by all that Mike could do stand-up comedy if only he could stand up! For his part, Mike was content to be in front of a magistrate without being sentenced!
At dinner on Wednesday evening, Beth and her husband, Brady, joined us. Beth is in her 40s and has had OT for several years. She works full time, has two young sons and they are in the process of adopting a daughter.
Venues for the next meeting (2012) included hospitals where there are doctors actively treating people with OT-- Dr. Matsumoto at Mayo Clinic, MN; Dr. Russotto at the University of Nebraska and Dr. Alder at Mayo Clinic, Scottsdale. We are open to other suggestions where we could meet together again, have a session with a medical professional and then update each other on our own findings/progress.
On Thursday morning, several of us met to talk about exercising. There’s no doubt that strengthening our leg, core and arm muscles is very important. Helen demonstrated several of the exercises she does – stretching first thing in the morning while still in bed, using an exercise band to strengthen the core (abdominal) muscles and walking, walking, and more walking!
Thank you to Gloria, Mike and all who contributed to making our 2010 meeting very enjoyable and especially to Peggy who organized, informed and welcomed everyone! The rooms were comfortable, the meals very good and the company the best! Together we can stand up to OT!
* indicates those attending the Mayo Clinic Meeting in 2008