Myotonic Dystrophy

What is Myotonic Dystrophy? The web states:"Myotonic dystrophy is a part of a group of inherited disorders called muscular dystrophies. It is the most common from of muscular dystrophy that begins in adulthood.

Myotonic dystrophy is characterized by progress muscle wasting and weakness. People with this disorder often have prolonged muscle contractions(myotonia) and are not able to relax certain muscles after use. For example a person may have difficulty releasing their grip on a doorknob or handle. Also, affected people may have slurred speech or temporary locking of their jaw.

Other signs and symptoms of myotonic dystrophy include clouding of the lens of the eye(cataracts) and abnormalities of the electrical signals that control the heartbeat(cardiac conduction defects). In affected men, hormonal changes may lead to early balding and an inability to father a child (infertility). The features of this disorder often develop during a person's twenties or thirties, although they can occur at any age. The severity of the condition varies widely among affected people even among members of the same family. "

Four wonderful people I am related to have been diagnosed with MD. My Dad, My Uncle Collin, My uncle Kirk, and lastly my brother KC. Two have passed away (Dad, and Collin). This has been a trial for all my family including myself, however there have been some huge lessons that I have learned from this disease and from the people who carry it.

#1-You can't live in fear. You can't worry where your life will take you and you definitely cant worry about the things you can not change. Fear is a far worse disability then MD. Fear disables you to not live your life while MD does not. You simply can not let fear take over.

The best way to remove that fear is to replace it with faith. Faith that things will be alright. Faith that things will work out the way they should. Faith that the Lord will take care of you. Faith takes action and it enables you to live your life happily.

#2- Time is precious and family is everything. There is nothing more special or sacred then that we call our family. Life is too short !! Enjoy it with the people we love. Try not to argue with one another. Try not to criticize others faults. Engage is good conversations and acts of kindness. Compliment and uplift each other. Learn from each other! Have family night, and family get togethers as often as possible. Respect each other. Your family members can be some of your best friends :)

#3-Develope a good attitude. *All* of my family members with MD or without have a positive attitude and it constantly inspires me. To be specific however there are 5 people I want to single out who's positive attitudes have changed my life.

*My Dad. It was until I was older when I found out he had MD, and for several years it didn't affect him (that I could see very much at all) however the last 5 or so years, he had trouble talking and especially walking. Although these things were difficult for him, I always remember him going up to the pulpit on Sunday and bearing his testimony. Not everyone at church could understand what he was saying because a lot of his speech was slurred, but I could and I was proud that he didn't stop that from letting his family know he had a testimony of the gospel. The other thing that I remember about him is that he couldn't hardly walk, he'd fall a lot and yet that didn't stop our family from traveling or getting around place to place, and it didn't stop him from mowing our lawn either. The remarkable thing about this was not only did he mow the lawn sometimes he would be on his knees (literally) by the time it was done, but he never let it go unfinished. His actions taught me a lot. I love you Daddy!

*Uncle Collin. He and my uncle Kirk worked and also lived together. They were each others best friends. Kirk is very talkative and outgoing and Collin always stood by him and listened to him. He was soo loyal. He was not as talkative as Kirk is, but he sure did have a big heart. He always gave me hugs (never went with out), and always very complimentary. He knew how to be a good uncle and even better brother.

*My Brother KC. He is very quiet and soft spoken, but he too is like my uncle Collin. He has a heart of gold, and will do almost anything for you. KC puts me to shame in a lot areas. He really has been probably the biggest blessing in my family's life than anyone else. I think he is a angel and perfect. I don't ever see him getting angry or say unkind things. KC takes care of all my brothers and sisters and drives them and my mom anywhere they need. He always does what he is told, and even though there are some things he can't do, he doesn't let that stop him. KC too like my Dad has a strong testimony of the gospel of Jesus Christ, and even though his health wouldn't permit he be far from home, he served as a missionary locally for 18 months.

*My Uncle Kirk. Kirk has been one of my best uncles I have ever had. Over the years I've really gotton to know him. We have had great conversations in person and over the phone that have lasted for multiple hours! Kirk loves to talk, being a talker requires you to have a lot of knowledge and he does. He knows family our family history better then anyone else in the family. He also seems to know a lot about history in general. I've learned a lot of things from him. He is a great talker and teacher but I think what he is even better at is smiling and making people laugh. Kirk has a smile and a laugh that is contagious. There hasn't been a time that I can think of where he has not cracked a joke! And after years and years of talking to him, ironically I don't think I have heard the some one said twice! There are two people in this world: People that can make jokes, and others who can't. HE CAN. It doesn't matter how cheesey the joke may be, he just has a way of telling it that make its funny! Kirk hit a great milestone this year December 27 when he turned 50. His health is not perfect but I can honestly say that laughter really is the best medicine. He told me on yesterday his lifes purpose in life is to brighten others peoples day by saying something funny, and I can say so far he has passed with flying colors :)

*This picture was taken yesterday at Kirks surprise 50th Birthday party! I love you Kirk!*

*My Grandma Shirley. I can't imagine how it might feel to have 3 sons with MD. I can see some people being bitter, and others helpless but my Grandma shows and exemplifies so much strength that I didn't even know was possible for just one person to have. She is so STRONG, that most lean on her for support. She carries and uplifts everyone. She has gone through many trials and I can imagine her having a lot of heart ache, but I have never seen her down. Even at funerals she displays peace and comfort and is able to provide the words that we all need to hear at those times. She is vibrant and very much alive. Growing up I had two grandmas my "sweet grandma" aka Grammi, and my "Fun Grandma" aka Grandma Shirley. Grandma Shirley was a kindergarten teacher for years, and so she is awesome at entertaining and grabbing your attention. EVEN NOW! She has shown me that happiness is a choice and that it is what you make of it.

Anyone out there who is troubled with the sickness, depression, pain, or disease such as Myotonic Dystrophy.. I just want to post that you can overcome any challenge that is placed upon you and be Happy!

That is what the Atonement and the Gospel of Jesus Christ is about- it's not just our sins. Please have hope and take comfort in the fact that the Lord will take care of and provide for you. If you are broken, you can be mended and even healed. It is possible, and it happens every day.

I know, because I've witnessed it in my life and the life of others. That can also true be in yours as well.