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Support Groups by Myotonic Dystrophy Expert Ann S Woodbury

What is a support group? What are the benefits of attending one? How do I find the right group for me? Will people think less of me if I attend one? Will the other people in the group judge me? What if they do not understand my situation? What if….?

A support group is a “group of people with common experiences or concerns who provide each other with encouragement, comfort, and advice”. Those who attend a group for the first time often feel nervous and uncertain—it is the natural response to being vulnerable and sharing what matters most in our lives in front of others. And yet, the first time a person hears the words, “I feel that way too” or “I seriously understand what just said”, we understand why a support group is valuable.

Support groups are found in a variety of locations, in person, and virtually through your phone or computer. They are most often offered by disease associations and other groups that focus on groups of individuals who share a common concern or focus. For example, the Alzheimer’s groups focus on individuals who have or who care for those with some form of dementia. The Caregiver Support Program focuses on individuals who share the challenge and responsibility of caring for others. Others have groups based on common behavioral needs, such as addiction and recovery, anxiety, anger, or stress management.

Finding the right group for “you” can be done by using a few essential steps.

  1. Accept and respond to your need to find a place to share with and learn from others.

  2. Ask yourself what you want from a support group. Do you want to relieve the stress on your heart?

  3. Research a wide variety of groups. Groups are found on hospital websites, social media pages, disease association websites, or by looking on websites like 211utah.org. (put your own state in 211…..org.), your individual county aging services, and others. Call or e-mail a support group leader and ask questions from your list in step 2—do they feel their group would work for you, or can they make a recommendation for another group? Ask for help.

  4. Try a few different groups. One group may be better for you than another based on the personalities and needs of the group. You might also like the sharing style of one group more than another.

  5. Trial and error works in all aspects of life. If you attend a group and it is not working, stop going and find another one. If you find two monthly groups you love, attend both. Be true to your needs.

(Taken from Salt Lake County Caregiver Support Program mailer)

Support groups are how I have maneuvered the journey of caring for my family with a rare disease. When my family was first diagnosed the only Myotonic Dystrophy (DM) support group that I could find was in California. This was in 1998 and we didn’t have the ability and convenience of zoom. So, I traveled to California for their annual conference. The experience in California of being understood and finding a group of people with the same life experiences as me and my family was very powerful. I was forever changed in my ability to understand and adapt to what we were experiencing.

The first time that I connected with an online group was through facebook in 2004. This was a national chat group. The first question that I asked was “Tell me about the fatigue”. The answers came back in rapid fire succession. Every response expressed that the fatigue was the worst part of the disease. I no longer saw my family through the eyes of non-acceptance. This validation made our experiences normalized. It helped remove the shame that we had been experiencing. We now had a way to talk about our unique behaviors.

There was only one book about DM at the time. It was Myotonic Dystrophy: the Facts by Peter Harper that came out in 2002. Of course I read it and it definitely referred to the extreme daytime sleepiness but it was written from a medical perspective not the perspective of someone living with the disease. Thank goodness Peter Harper wrote his book, it was so helpful to have documentation of the facts about the disease. This was the beginning of DM being understood. But the things that I learned from support groups proved to be equally as important as the facts. Living with and learning to adapt to DM on a day to day basis requires lots of adaptability and awareness. Other families living with DM gave me so many tools for adapting to the consequences of living with DM.

In 2007 I had the opportunity to become a support group facilitator for DM in the Salt Lake City, Utah area. I was passionate about this community which included my family. We learned so much from each other at these monthly gatherings. We brought in specialists about nutrition, sleep neurology, adaptable exercise, etc. My family was learning right along with the rest of the community. I retained this role for 8 years and loved every minute of it. But then my husband got a serious recurrence of his cancer and I had to withdraw.

Towards the end of 2020 I was asked to start a zoom support group. I am now one of the many DM support groups that The Myotonic Dystrophy Foundation (MDF) has established across the country. You can go to their website at myotonic.org to find the listing. There are support groups for all DM, also for DM1, DM2, congenital, caregivers, a happy hour, etc. Check them all out and find which ones look like they might work for you. You are welcome to participate in one or multiple support groups. They all have a different flavor and one may appeal to you more than another. Check them out. Support groups are one of the most powerful things that you can do to care for yourself. Your participation will benefit you and the rest of your family by your efforts to understand your unique life situation.




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