Joe Bremhorst & Sharon Alexander
For some, those “limitations” are anything but. Instead, they’re actually motivation to live life on their terms and, in some cases, limitations actually encourage people to act…to do more. They understand the power that one dedicated person can have and are willing to harness that power. And when two such people get together, they can do some truly amazing things!
The proof: IETF Ambassadors Sharon Alexander and Joe Bremhorst from the East Bay ET support group in San Ramon, Calif. These two know all about the power of joining forces to raise ET awareness among the general public, educate their local and state officials on how this condition affects so many of their constituents and offer support and compassion to people who live and cope with essential tremor every day. With similar goals and a passion for educating, Sharon and Joe are the perfect team. They are so perfectly matched they both say that “what one of us doesn’t think of, the other one does.”
Joe first noticed his ET when he was in his late teens, but never saw it as a problem. “Basically, I could ignore it or cope with it through my twenties and thirties.” In fact, he had no choice but to cope given that he was a naval aviator. “My tremor during these years was mild enough that it didn’t impede my flying ability,” he says, “but it certainly made the pre- and post-flight paperwork difficult!”
He made his first neurologist appointment when he was in his mid-thirties, when the tremor could no longer be ignored. When the diagnosis came back he wasn’t at all surprised. “My mother had been diagnosed with ET in her later years, and my own tremor was identical to hers,” he notes. “I knew I must have the same condition, especially when I learned it was often hereditary.”
As is typical with ET, the condition worsened as he aged. Joe was in his mid-50s when the condition became too bad to simply ignore any longer. It became impossible to just cope. “My inability to drink from a glass or cup, or put food in my mouth, had become intolerable. Frustration and embarrassment ruled my emotions with every cup of coffee and every meal. I became reluctant to eat out at restaurants, especially with others.”
“I didn’t control my ET symptoms,” he says. “They controlled me.”
No amount or combination of medications seemed to help, so in August of 2008, Joe underwent Deep Brain Stimulation (DBS) surgery. Now, five years after the procedure he still finds it to be a great help. “I’m amazed every time I turn it on…I call it my morning miracle.”
DBS works incredibly well at controlling his ET symptoms, and Joe’s work with the support group and as an IETF ambassador helps him give back to those still going through ET’s day-to-day challenges. “I’m privileged to help with the support group. To the see the camaraderie develop among the members as they support each other, sharing their ET experiences, is incredibly rewarding.”
Sharon’s life with ET began at age 15, when it “seemed to appear overnight.” She can even remember the exact moment she noticed. “I was standing in line to purchase my favorite drink: a steaming hot chocolate,” she says. “As I left the window and began the short walk to the table, my hands began to shake and the beverage sloshed all over my hand! My best friend made light of it, but we were both worried.”
Having ET made it difficult for her as she got older, especially always being asked if she was cold or nervous. So for her 30th birthday, she gave herself a gift: she made an appointment with a movement disorders neurologist. When she was diagnosed, she had already been married for some time and had two adorable children. In her spare time, she ran a successful home-based business. But yet she wanted to do more. And neither a busy life nor having ET was going to stop her.
She decided to go back to school, which opened up a whole new world of possibilities—and quite a few challenges. Going back to school as an adult was intimidating enough, but speaking in front of the class was a nightmare.
“My worst memory is from an oral report I had to give in front of the class,” she notes. “The shaking in my hands and head made holding and reading my notes nearly impossible. I held on and finished, to my great relief. I felt so proud of my effort.”
When she got back to her desk a fellow student made a comment about her shaking, just like everyone with ET has probably heard at one point or another. “Why do you let this stuff throw you so much?! Look—even your head is shaking!” She didn’t say or do anything, despite wanting to. Instead, she cried all the way home.
But (as she so often had done back then and still does today) she turned that difficult experience into something positive, something to learn from. In this case, the topic of essential tremor would serve as her thesis. “If only to educate that one classmate!”
The Partnership Begins
Joe joined The East Bay support group in 2004. “I found the group thanks to the IETF website,” he says. “I thought it would be worthwhile to see what an ET support group was all about.”
After attending a few monthly meetings, Joe was impressed beyond measure with the support group leader’s knowledge of ET, and “Sharon’s extraordinary ability to share her knowledge in easily understood bits and pieces and, most of all, I was impressed with her empathy toward each and every member of the group.”
Sharon was equally impressed with Joe. He listened carefully to the guest speakers and group members and always commented thoughtfully. After retiring from the Navy, Joe had worked in the information technology field. “Joe’s skills are very different from my own,” Sharon notes, “including his understanding of the business world and modern technology.”
Sharon knew she would need help running the group. She became the leader in 2003 after the previous one had moved on. At the time, “I also needed to maintain my counseling practice,” she says, “so I asked IETF Executive Director Catherine Rice if I could bring Joe on as my Co-Ambassador and Co-support group leader, to split some of the duties. The rest is history!”
The two have spent a lot of time working with other support group leaders in their area. As IETF Ambassadors, they ensure that IETF support group leaders are well educated and prepared for their leadership role. They offer suggestions and support to new support group leader volunteers, turning what could be an intimidating process into a simple, well-planned routine. They attend most meetings in their area and are always willing to step-up and fill-in when needed. Because of their efforts, they have increased the number of active California support groups to
Another Ambassador duty is to spread the word about the need for more ET research to those who can influence research funding opportunities, including their local Congressional Representative, Eric Swalwell (CA-15). They met with him on two seperate occations, to discuss what essential tremor is and how it affects thousands of people in his state each and every day. They shared their own personal stories of embarrassment and frustration. They opened his eyes to the ugly reality of essential tremor and made him realize that a significant number of his constituents are most likely affected. It was a very emotional and enlightening meeting.
Near the end of their visit, they presented Rep. Swalwell with a Shaking up Awareness about ET bracelet. “As he slipped it on his wrist right away,” says Joe, “I suggested he hang a National Essential Tremor Awareness poster in his D.C. office, and he promised he would!”
One of their best ideas for spreading awareness is setting up booths at local farmer’s markets. “We only had to fill out a simple application form, speak briefly with the market’s manager, and provide a table and chair for the booth. Otherwise, the only ‘cost’ is our time.” This efficient and affordable way to share information about ET has had a real impact. At every market, inevitably, they meet someone new who either has ET themselves or knows someone who does. It is a perfect place to make people aware and offer top-quality education and support.
“Whatever challenges you are facing with ET,” Sharon says, “it’s a likely bet that someone else has not only faced it, but overcome it.”
Sharon and Joe have both traveled different roads to get to this point in their lives. They followed different career paths and even their personalities are very different. But together they make a formidable team, whose passion for educating shows in everything they do.