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Reality Check by Myotonic Dystrophy Expert Ann S Woodbury

I had quite the reality check this morning. For my part-time job I work in Salt Lake County advising consumers of safe food preservation guidelines. I also test pressure canners that are used for home canning. This morning I needed to go to the home of a consumer (I’ll call her Judy) to pick up a part of my equipment that I had accidentally left attached to her canner after I tested it.

Judy and her family were exactly who I expected to be when I started having my family. She had 10 children (I wanted 12 after reading Cheaper by the Dozen). She had raised her children and grandchildren to be devout Mormons. They bottle large quantities of meat, 100+ bottles at a time. They raise their own beef and sheep so that her family can be as independent as possible with healthy grass-fed meat. Being self-sufficient is very important to Mormons as well as many other people.

Now that Judy is older she and her husband are retiring and leaving the house to one of their children. They are now planning on going on multiple Mormon missions (volunteers who spread the Mormon religion to the world).

I grew up in a conservative Mormon culture when my family moved to Utah when I was 11. We were already Mormon but we hadn’t been immersed in Mormonism before we moved to Utah. My dad was in the military so before I was 11 we were surrounded by many diverse peoples and cultures, having lived in Japan, Mississippi, Hawaii, etc. After moving to Utah we started practicing Mormonism regularly. There were 3 or more meetings a week that we attended.

When I married Kent it was in in the Mormon temple. Kent’s family had many extended family members in influential positions in the Mormon Church. We started our life together with many Mormon ties and commitments. I put my heart and soul into our religion, reading scriptures every day and attending all of our meetings, wore the standard Mormon underwear and proceeded to raise our children immersed in Mormonism.

I was a devoted mother who believed that I needed to be a stay-at-home mom. Kent had a degree in math/statistics and got a job with the local power company. We pinched pennies to make ends meet on Kent’s income. We didn’t hurt for the basics but we never had the extras of life. And yet we still gave 10% of everything to our church. This all fit in with my Mormon teachings, to be in the world but not of the world.

Unbeknownst to us Kent had Myotonic Dystrophy (DM) as did several of his brothers and his father. Kent and his father didn’t show any of the physical symptoms of DM but they had cognitive effects manifesting as flat affect and rigidity of thinking. But, of course, we didn’t have a diagnosis yet so I didn’t know that Kent’s thinking was impaired, I thought that I was the problem.

Kent had many church leadership callings (sometimes as many as 5) that took him out of the home when he wasn’t at work. It was my job to get the children ready for the multiple church meetings, make sure meals were planned at home and try to be fugal with our income. When I would approach Kent with issues, like getting the kids a hamburger because we had been out all day running errands and the kids were hungry, he said that they could wait until we got home to get something to eat. I thought that he was just a tight wad and insensitive.

As I have struggled with the many effects of DM in my family, and especially the cognitive effects on my loved ones I have learned to understand that Kent is not insensitive. He does care, but he can’t show it. I have learned to reflect and verbalize back to him what he might be feeling and coming from the approach of sensitivity and compassion for his situation. We have a kind, loving relationship as long as I remember to not take his apathy personal. I believe that if he didn’t have the cognitive effects that he would be the person that I want to believe that he is. As long as I not only give him the benefit of the doubt but also gently coax and remind him we have a good life. Of course, I do need inner strength and I make many decisions that he isn’t fond of. I have learned how to be happy even if he isn’t happy.

I expected my life to turn out like Judy’s life did. After visiting with her this morning I breathed a deep sigh of relief. If it hadn’t been for the Myotonic Dystrophy that limited our family’s ability to function in our Mormon community I would have followed all of the Mormon axioms and I would have required our children to be devout also.

How can I be thankful for such a horrible disease? I definitely wish that my family didn’t have to endure DM. Everyone in our family has paid a big price because of DM. It has limited our children (now adults) and their ability to be independent successful adults. They also have many physical ailments ranging from GI issues to needing pacemakers and lots of extreme fatigue and issues with poor judgement.

But, what I realized after leaving Judy’s house was how proud I am of our family and our ability to adapt and survive in spite of such difficult limitations. I would take my family and our reality over the alternate reality that I was headed towards when I was starting out my family.

There is not enough awareness of DM and its cognitive effects and the science to back it up is slow in coming. I am available for individual or group mentoring. I am also available for giving speeches in professional settings to educate about this very misunderstood disorder. You can sign up for a 15 minute call to discuss my availability by going to I look forward to hearing from you.

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