“The Myotonic Dystrophy Foundation (MDF) is the leading global advocate helping patients and families navigate the myotonic dystrophy (DM) disease process, and is often the first resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world. For many international patients, the Myotonic Dystrophy Foundation is often the only resource they are able to locate, and MDF has provided assistance and support for people living with DM in more than 139 countries around the world.
Currently tens of thousands of people living with myotonic dystrophy, their families & friends make up the Myotonic Dystrophy Foundation community.
The mission of the Myotonic Dystrophy Foundation is Community, Care, and a Cure.
We support and connect the myotonic dystrophy community.
We provide resources and advocate for care.
We accelerate research toward treatments and a cure.
Individuals diagnosed with myotonic dystrophy (DM) and their families can sometimes feel overwhelmed, isolated, and in need of support. The Myotonic Dystrophy Foundation (MDF) support programs create safe spaces to network, learn, and share.”
The above was taken from myotonic.org
When I first learned of my family’s genetic condition, myotonic dystrophy (DM), I didn’t know of anyone else that had it except for some extended family. The diagnosis started me on a journey of seeking out why my family had experienced isolation and feeling so different.
We did learn something about DM from our first few neurology appointments, but nothing about the unique behavior of our disease. The doctors took time to learn about it and explain it to us. But we still were alone and isolated.
I read an article by a pulmonologist in California. I reached out to him and he connected me with Alice Gunderson. Alice had started a support group in California. I flew with my two youngest sons, Michael and Chad, to LAX to go to our first support group. It was quite a feat taking two sons with disabilities to such a large city. After maneuvering the large airport and streets of LA we found the fancy hotel where the conference was going to be held.
I can still remember very clearly walking into the conference room for our first meeting. I was very taken aback with what I experienced. It was a roomful of people with similar traits to my family. Many were slack-jawed like my sons. Some were asleep. Many were soft-spoken and gentle, unassertive people. Many had a loved one assisting them. It was so affirming to feel so at home. People just like my family. Never before had I felt so accepted.
After that experience we went to every conference/support group that we could get to. At that point they were all in California and we were coming from Utah.
A couple of years later our local MDA started a DM support group. We attended it regularly and found connection with great, like-minded people. It meant a lot to us. Especially to me. My family wasn’t as concerned about their unique behavior as I was. Because of the way that the DM affects my family they struggle to be self-aware. They don’t notice that they are different, they just aren’t interested, due to fatigue, lack of motivation and initiation, in outside groups and activities. I felt so isolated. None of my family were interested in attending any activities. It also felt like others looked down on us and extended family and our local religion weren’t very patient with our lack of interest in gatherings.
So, going to support groups where most everyone behaved as my family did provided me with important connections. What I find in DM support groups is Common Unity - Community. I finally found my community.
The lead facilitator of the local DM support group was transferred to another city for her employment so it looked like the support group might collapse. I decided to become the facilitator. I loved it. Of course, it was one more thing to do but there was no other place where I felt so accepted. I continued that support group for about 7 years until my husband’s cancer got too aggressive and I needed to withdraw. No one took over my role of facilitator so the Utah DM Support Group disappeared.
As Kent stabilized I was contacted by the Myotonic Foundation about creating a virtual support group. I was interested. I loved having connection and with the support group being virtual I wouldn’t have to leave my home. I started being a virtual support facilitator just before Covid hit. MDF called it the Mountain West Myotonic Support group since that’s where I am located.
The Mountain West Myotonic Support group has now been up and running for about three years and we have a great group of people. People join us from Arizona, New York, Canada, etc. Interestingly I am the only one from Utah. It heals my soul to connect with people that relate to what our life is like due to the effects of DM.
There are many Myotonic Support Groups and new ones are starting regularly. Most are virtual via zoom. You can find one that fits your time availability by going to myotonic.org, select “Get Involved” and then select “Go to the Calendar” to find one that will work for you. There are also many people that attend multiple support groups, feel free to do that too.
My meetings are the third Tuesday of the month at 1 pm ET. Feel free to reach out to me if my time works for you.
Also, almost 2 years ago we started a JOA (Juvenile Onset Adults) support group. Carolyn Valek and I facilitate it. This group is held the third Tuesday of the month at 5 pm ET. We are always excited to have new JOA participants. If you or anyone you know are interested in joining us, please let me know.
There are many support groups to serve everyone’s needs that live with DM. Check out the link on myotonic.org for “About Us” and then select “Our Support Group Facilitators” to connect with support group facilitators and find one that works with your time availability.