Part I: Lives Lost to Myotonic Dystrophy

Myotonic dystrophy is not a widely known or acknowledged disease.

In the medical history of our family, it seems likely that my grandmother’s brother carried the gene. He died around the age of 28; however, he did not marry and did not have children. Nevertheless, it appears his sister carried the recessive gene. It skipped his sister’s children (one of whom was my Dad) but did manifest itself in five of my eleven siblings, varying in degrees of severity. It also appears to manifest itself in greater severity with each successive offspring that carry the gene. Two of my nephews manifested the disease. Jimmy has already passed away from the disease at age 39. As it has become better understood, and after a personal survey of my own, I have come to discover that there are 16 people among my siblings and first cousins on my father’s side that have the disease. There is NO cure for this disease.

Our family learned of it about thirty years ago, even though my brother and sister each had symptoms of the disease manifested in their early days as children. The disease seems to accelerate around the late twenties of individuals who carry the gene, and it became more obvious in the health condition of my brother, Bill, at the age of 28, and my sister, Barbara, in her 30’s. Bill died at the age of 61 and Barbara died at the age of 63. Considering the advance of the disease in their bodies, it is amazing that they survived as long as they did. Both had strong, independent spirits, which I think gave them an advantage in sustaining their respective lives.

1arobin21My brother and sister did not receive much understanding regarding their disease when they were young children, because no one knew they had it. Their symptoms, unfortunately, were looked upon as being lazy and only interested in staying up late at night. Allow me to clarify.

Both of my siblings, in a family of eleven children, tended to slur their speech and were constantly admonished by my parents, my teachers, my siblings, and myself (regretfully so) to please make the effort to speak more clearly and this was not always communicated in the most kind way. Neither would wake up in time for school, and though we lived one block away, were late almost daily in getting their little feet to carry them up the street. Neither could fall asleep at night and would be awake all hours! Both ate very slowly, and were the recipients of frustration and anger that their eating slowly was just a means of avoiding helping with the dishes! (No automatic dishwasher in our home, though my Dad sold them in his plumbing and heating business.) Both of my parents were industrious people and work was a natural to them. We were of German heritage and to work showed character. Neither Bill nor Barbara could maintain a job for very long, not because they were lazy, as they were often admonished for, but because they lacked the physical strength, which at the time, no one seemed to understand.

Life went on and both suffered needless misunderstandings about their lack of energy and inability to articulate clearly.

My brother, Bill, was about 28 years old when he received an honorable discharge from the Army, and it was indicated he had a muscle disorder, after being in the paratrooper division. They attributed his muscle fatigue to the parachute drops. However, as he continued his medical visits at the VA, it came to light that the muscle weakness was of another origin–myotonic dystrophy. Meanwhile, my sister, Barbara, who was five years older than Bill, also learned that she had the same disease.

When I think of the hurtful remarks both received from so many over a health condition neither could control, it is a guilt not easily removed and a regret I feel badly about. It is has made me more careful about the judgments I lay upon others. Many people suffer from “invisible diseases,” such as depression, chronic fatigue, psychological difficulties as the result of assaults, etc. I think how often we misjudge others…and how it is important “not to judge” but to be compassionate and understanding, for as the saying goes, everyone is suffering from some type of battle, so be compassionate.

This disease is called myotonic, because it attacks the autonomic systems of the body—the nervous system that controls the muscle contractions, the respiratory system, the circulatory system, the digestive system.  For example, my brother and sister had difficulty swallowing their food, hence, they ate more slowly than the rest of us and they had to have a glass of water or milk handy to help the swallowing. The swallowing mechanism did not function optimally for them. The muscles that control the movement of the vocal cords also were affected, hence their difficulty in speaking clearly.

As their disease progressed, they could not swallow their food, and each had to be tube-fed to maintain their lives. Eventually, the muscles in the diaphragm no long functioned, and they each had to be placed on a respirator. So in their final years, speaking was extremely difficult for both my brother and my sister.  Eventually, when my sister accepted the ventilator, she  could not speak at all.  My brother used a machine that would suction out the mucus so he could breathe and say a few words.


My sister, Barbara, lingered in the nursing home for two years, on a ventilator and tube-fed. She was on a great deal of pain medication. She weighed about 60 pounds when she died. I was working full time and caring for my Mom in the evenings, who suffered from a stroke and was living with me. During the day, I had home health help for a year and then eventually, my two daughters took turns during the week days to help care for my Mom.  As a result, I could only visit my sister once a week. It was painful and difficult to see her suffer as she did. I did what I could to help her but I have never felt it was enough. I think that is partly why I am writing this piece. So that if there are other people out there in the world whose family members are suffering from this disease, that more understanding and patience is given to those who need it.  I tried bringing her a word processor, but she could not bend her fingers to type. We spent much of the visit time guessing what was being said. I must have caused her great frustration for all the repetition of what she was trying to communicate to me.  I left a notebook for visitors to write in, NOT to check up on who visited or who did not—as I was accused of that very thing—–but so that it would aid in Barbara’s memory and give us a topic to speak about and enhance her memory and that I would have a more clear idea of what she was trying to communicate with me.  Unfortunately, I was not there the day she slipped away. I had visited her two days previous to that, and though she asked me to come that Saturday, I didn’t. I felt much guilt about that for some time now. I did go to her immediately that Sunday morning, when I was phoned and told her condition had worsened, but by the time I had arrived, I felt she was already somewhere else. Her body was cold. I went to the nurse’s station, and they said the doctor couldn’t be called until the evening because it was Sunday. This did NOT give me much comfort.  I returned to her room, and sat with her for another hour and said my goodbye…though I think she was already with God.

I will continue the saga of my brother’s struggle with the disease in another segment.  I am now feeling very overwhelmed.


SYMPTOMS of Mytonic Dystrophy:


REFERENCE MATERIAL concerning Myotonic Dystrophy:

Click to access myotonic.pdf

20 thoughts on “Part I: Lives Lost to Myotonic Dystrophy

  1. Lisa Mari says:

    Reblogged this on Myblog's Blog.


  2. Yoshiko says:

    It must be hard to go through this. Isn’t it?


  3. Eliza Waters says:

    Wow, what a harsh reality to live with and test of faith. One has to get beyond the ‘why?’, but moving to acceptance must be so hard. Please be compassionate with yourself, the things we do in ignorance cannot be blamed. The quote you included reminds us all to be kind and understanding when we feel compelled to judgment. Heartfelt and moving, thanks for this post, Johann. Blessings.


  4. says:

    I know this was hard to write…..


  5. Jan says:

    Thanks for sharing this. Be well. Jan


  6. What Angels you have in your family Johannis… All part of your BIG heart… What experience we all give ourselves in the name of LOVE… Now they are at peace… I resonate with your sister Barbara… And know how brave she was… Your brother too… But the bravest is you who sees it all and can do nothing but be present. And dear Johannis that is enough… And that is how you are an example to others… Thankfully the energies are changing now and we no longer have to suffer, but choose how we want to live our life… We can override our ancestral linage, by simply claiming our own being… Remembering the experience of our loved ones are carried on in our human wisdom and never lost… Barbara and bill thank you for your gifts of love… You are both flames of eternal light… Much love Barbara


  7. Clanmother says:

    A moving and profound reminder that we MUST remember that there are many who experience difficult journeys. It is very hard to see those we love experience pain and suffering. I think that you were there at the right time. And while you would have liked to do more, we all have physical limitations. I have tried to be in two places at the same time, I have found that it really doesn’t work in our existance. Take good care of yourself. ❤


  8. Trina says:

    We discovered that my daughter has Myotonic Dystrophy (and my husband) last year. She is now 24. It explained a lot of what she has experienced in life since childhood. The struggles are many, but God really does help us and gives us many evidences of His care and provision. Thank you for taking the time to write about your experiences.


    • dear Trina,
      I am so sorry for your daughter and husband and the struggles that accompany the disease. However, knowledge and understanding and a great deal of faith is very supportive for all concerned. There is a national organization where you can register if someone from your family has the disease. The site offers many insights and support ( ;; I am sure that you are a very supportive Mom and wife. The worse pain is not being able to do anything to change the condition. My sister and brother were very courageous and I think their determined spirit to keep moving and to do as much as they could, sustained them and lengthened their lives. I wish you and your family many blessings and love!


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