{"id":11735,"date":"2015-08-10T04:48:54","date_gmt":"2015-08-10T11:48:54","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11735"},"modified":"2025-12-30T04:50:11","modified_gmt":"2025-12-30T12:50:11","slug":"trust-comes-strength","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/es\/family-stories\/trust-comes-strength\/","title":{"rendered":"With Trust Comes Strength"},"content":{"rendered":"
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Mike Hamlin learned that he has DM1 in 2007. After retiring from a career at the Environmental Protection Agency in 2013, Mike worked with members of the local DM community to launch a DM support group in the Washington, DC area. The group is going strong, now led by one of its original members. Mike recently relocated to Key West, Florida, to follow his dream of living life creatively and with purpose. We asked Mike to tell us about the experience of launching a DM support group.<\/div>\n<\/div>\n
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How did you decide to become a support group facilitator?<\/h2>\n

I went to the 2010 MDF Annual Conference\u00a0in Minneapolis, never having met anyone with DM before. At the conference, there was a whole room full of us. For the first time, I knew I wasn\u2019t alone. Later, I realized there were no DM support groups in Washington, DC. I contacted Leslie Krongold, who formerly ran the MDF Support Group Network, to talk about starting one.<\/p>\n

I have a wonderful family and was in a relationship that was very fulfilling. But still, I have this difference on chromosome 19 that I carry around. I ached a little bit inside from the loneliness that difference can cause. My personal motivation came from a desire to connect.<\/p>\n

How did you begin?<\/h2>\n

The first step was to find a suitable space to meet. When I approached Sibley Hospital, they were very receptive to hosting our group. So we had an accessible, private, pleasant place to meet.<\/p>\n

Were you nervous about anything at the start?<\/h2>\n

I had a long career as a human resources manager. That\u2019s unusual perhaps because I\u2019m a big time introvert. I\u2019m shy. I wondered if anyone would come to our meeting. And I was uncertain about the questions people might pose. Not the medical questions so much, but the personal questions that we hold inside and that don\u2019t have answers. How long am I going to live? What are my expectations of my husband, wife, kids? How am I going to raise these issues with them? How do I get around? Can I live by myself or not? DM affects the most important things in your life. As one of our participants puts it, \u201cThere are so many uncertainties, how the hell do you plan?\u201d<\/p>\n

As a support group facilitator, what do you set out to accomplish?<\/h2>\n

The facilitator needs to set up a format where people can connect — to provide structure so that the time is well managed. But not tightly managed. It\u2019s important for the group to own the meeting. We decide together what we want to talk about. I want to provide a place where people who have DM can bring up anything they want to and talk about it, anything at all.<\/p>\n

Do you talk about medical issues?<\/h2>\n

We build in a knowledge period, time in the agenda to talk about medical or scientific topics or recent research. For medical questions, we go to the MDF\u00a0website and their\u00a0Toolkit<\/a>. We are in touch with specialists at Johns Hopkins Medical Center, as well as\u00a0Kennedy Krieger Research Institute, one of the sites for the Isis Pharmaceutical drug trials. We email them with specific questions and requests for referrals.<\/p>\n

What surprises you about the dynamics of the group?<\/h2>\n

In the work world, organizations engage in team-building activities, common experiences that help staff trust each other and become supportive teammates. Everybody that\u2019s in a DM support group comes with something in common already. It\u2019s in their DNA! From the start, there\u2019s a level of trust that takes other groups or teams a long time to achieve.<\/p>\n

How do you spread the word?<\/h2>\n

MDF is indispensable when it comes to using their database to publicize the group. They refer people from our area to us. We started out with 5 or 6 people. At the last meeting we were up to 14. Our DM community includes caregivers, moms, dads, sons, daughters and good friends of people with DM.<\/p>\n

What has surprised you about your group?<\/h2>\n

The silence. The thing I\u2019ve had to get comfortable with is managing the silence. When there is silence, the answer that there is no answer starts to sink in as it never has before. And from that comes strength, the strength to accept uncertainty and not let it be a barrier to living fully and seeking out relationships with others.<\/p>\n

What\u2019s on your horizon now?<\/h2>\n

I\u2019m living by myself now and my son tells me I\u2019m nuts. It can be scary. I\u2019ve had to invent ways to open a car door or to open a jar of pickles. My right hand doesn\u2019t work well anymore, so I have to work hard not to make a mess when I\u2019m dining with other people.<\/p>\n

But it\u2019s also wonderful. I wouldn\u2019t be in Key West right now if it weren\u2019t for the emotional connection to wellness that I came to understand in our support group. It was in the stillness of that silence that I arrived at a new sense of freedom and purpose.<\/p>\n

In a DM support group, each person benefits from the emotional strength you get from knowing that you\u2019re not all by yourself. That helps you build your strength inside.<\/p>\n

Interested in finding a support group\u00a0or becoming a support group facilitator?<\/h2>\n

Facilitators are needed in New York City, Boston, Chicago, Southern Florida and many other places.\u00a0For more information, please contact MDF at\u00a0info@myotonic.org<\/a>.<\/p>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11736,"template":"","class_list":["post-11735","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories\/11735","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media\/11736"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=11735"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}