Friday, March 30, 2012

Beginning with Knowledge - Part 2

Together We're Stronger

Our story-continued:
When our second grandson was born, he had some problems early on. For privacy purposes I'll call him 'Brian'. He spent a few extra days in PICU (Pediatric Intensive Care Unit) because he had difficulty breathing on his own and had to be monitored. This resolved itself quickly. Brian was also, what they referred to as a 'floppy' baby, meaning he didn't have the usual drawn up arms and legs of a newborn.
He had difficulty latching on for breast feedings, so had to be changed over to a bottle. He was late achieving the usual milestones of holding his head up, sitting up, walking and talking.
Even with all this, there was no official diagnosis. He had Physiotherapists, Speech Therapists and Occupational Therapist and Early Childhood Educators, working to improve his 'symptoms'.
 With no diagnosis or prognosis it was frustrating, but we were happy to have the assistance of these professionals, to help him and his family out, however they could.

To learn  more about this disorder, please go to:Muscular Dystrophy Canada
 Who can be affected by Myotonic Dystrophy?

Anyone can be affected my myotonic dystrophy. It is a genetic disorder passed on to children of either sex by one parent who has the disorder.
Myotonic dystrophy can affect people at any age. The majority of people are diagnosed by the time they reach their early twenties. With each successive generation, the symptoms of myotonic dystrophy seem to get more severe, and the age that they appear gets younger. This phenomenon is known as anticipation.

Common symptoms in the adult form include:

- Myotonia that results in a delay in the ability to relax the muscles after a prolonged contraction,
- muscle weakness of the voluntary muscles, starting gradually and progressing slowly,
- muscle stiffness,
- drooping eyelids,
- unclear pronunciation of words,
- difficulty raising the head when lying,
- difficulty holding and object firmly or lifting it,
- a shuffling gait when walking,
- difficulty climbing stairs or getting up from a seated position,
- a long, rather expressionless face.
People with myotonic dystrophy may also have symptoms affecting other parts of the body


The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.


  1. Kathy, thanks for all the great information. I was aware of some of these symptoms but not of others.
    I'm so glad you've decided to document your family's journey and share it with us.
    I look forward to your next post.

    1. Thanks for your comment, Monica. It was a learning and awakening for us along the way, too.

  2. You are doing a good thing with the information you provide. The more we understand, the more powerful we become. All my best.

    1. Thank you Wendy for your kind words. I agree that the more we understand a disorder, the less scary it becomes.

  3. Hi Kathy. I'm Andrea. I have DM1, adult onset. I'm 47, and things are progressing... Lately I've been having breathing problems, so I'm trying to get some information on what doctor to see in order to diagnose and treat this particular symptom. It's unnerving.

    Thanks for your blog, and I hope you continue to write.