One of the most meaningful parts for me in writing From My Mother was meeting others like my family. Before researching for From My Mother, I had never met another woman affected by adult onset myotonic dystrophy like my mother. The first time I did came the year after my mother passed away. I wrote an article for the nationally muscular dystrophy related Quest Magazine and one of the readers contacted me on Facebook after commenting on the article (http://quest.mda.org/article/beyond-willpower-caring-brother-and-mother-mmd). She was a mother who recently had her child diagnosed with the disease. When she added me on Facebook, I looked through her pictures and gasped “Oh my God, her facial structure looks just like my mother’s. She carries the gene.”
We dialogued on Facebook. The doctors who recently diagnosed her son had never dealt with the disease prior to him. They didn’t know. She asked how doctors knew my mother was the carrier. I told her the doctor shook my mother’s hand and mom couldn’t release the grip completely on her own. Myotonia, or in this case trouble fully releasing muscles after gripping, is a symptom of myotonic dystrophy in adults. She told me a doctor shook her hand and told her to see a specialist who might be able to tell her more. I was in awe of the situation, and I hoped down the road that she would find others like herself who would understand. I hoped she would have someone to talk to that knew.
Since then, I have found and joined numerous online support and awareness groups for MMD. Even now I find comfort in talking to others who know what it’s like, even as one in the family with healthy genetics. I can’t imagine the benefits my mother would have had if she knew how to find others like her online to share stories with. She lived in a town of 4000 people, and no one there really understood. The internet would have been her only link to another woman like her. She didn’t know how to find those links though, so today I want to share a list in case it helps any others like her. Most of these are closed groups so you will find only people who want to and have a reason to be there.
Myotonic Dystrophy Support and Information – https://www.facebook.com/groups/150128601730709/
Congential Myotonic Muscular Dystrophy Network: – https://www.facebook.com/groups/CMMDN/
Myotonic Dystrophy (All Types)
Myotonic Dystrophy Awareness in Canada
There are also some cause pages or pages families affected by MMD build awareness with like these:
Congenital Myotonic Dystrophy Fight Fund
Standing Strong for Spenser
At the risk of sounding odd, I find great comfort in seeing pictures on facebook of families like mine. I love watching videos of Spencer because he reminds me of my brother. It fills my heart with joy to see Spencer’s joy. I reminisce of the beauty of having someone so pure and beautiful as a young child with MMD, and it helps balance the pain of loss to remember the good. I don’t love the disease, but I’ve felt love for more than just two people with the disease thanks to Facebook and these connections.
Hope this helps! Finding others like you is a great outlet that might not be accessible in person or in your hometown… Try to find someone and make a connection!
Here’s my album on facebook for my brother! https://www.facebook.com/darcy.leech/media_set?set=a.508093112430.6432.225900418&type=3
It doesn’t hurt to know other people who’ve had an infant experience like this in the family