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
  

Disclaimer

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.

Sunday, March 25, 2012

Beginning with Knowledge - Part 1

Together, we're stronger!




Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin. 


There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts.


As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition.


All comments and thoughts are my own. Resource information will be  linked to it's source.


To start I'll include a definition of Myotonic Dystrophy from the Let's Make Muscles Move site, here in Canada.


To learn  more about this disorder please go to: Muscular Dystrophy Canada



Myotonic Dystrophy, also known as Steinert's disease, is the most 
common form of muscle disease, affecting approximately one person in 
8,000 worldwide. It is a disorder characterized by progressive muscle 
weakness and wasting and by myotonia (difficulty in relaxing the muscles 
after they have been contracted). It is  a multi-system disease, typically 
involving a wide range of other tissues as well as muscle.





Disclaimer

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.