Everyday life with Myotonic Dystrophy - Jan 20, 2013

Together we are Stronger

Starting at the Top

David, the grandfather of the boys has been down with a common cold. You or I would shake it in a few days, but for him it takes longer. For one, he's unable to give a good cough due to decreased muscle tone. Then, even with cold medications, one has to be careful that the medications are not too strong. They seem to effect people with Myotonic Dystrophy harder. So striking a balance between keeping him comfortable and the symptoms at bay without causing harm can be difficult.

So in Winter the things he'd usually be doing, like snowblowing our driveway after a storm, just don't happen. Thank the Lord I'm healthy enough to be able to shovel, some. But in those times, we need to rely on a neighbour to plow us out.

It also means that I don't venture out much, because I don't like to leave him when he's not well. But this too shall pass and our grandparenting lives will be back on track soon.


Christin, the Mom of the boys, had her work cut out for her over the Christmas break, because neither of the boys likes to go out in the snow and cold, more specifically it's the wind that upsets them and seems to take their breath away. So, for the most part, she was housebound along with them. There were times she managed to get out when her husband could stay with them.

Now the boys are both back in school and Christin can get out more, but only between the hours the boys leave in the morning for school and the first one returns home around 2:00PM. She's happy to be able to get out when ever she can and always very grateful for some adult company, besides her husband, of course.

Brian, the eldest of the boys is 16 and in High School, in a modified program. He's finding it a little easier, this his second year in the same grade, but being a teenager, he typically doesn't like to study. This, combined with the fatigue and cognitive delays, it's still a rough go for him and his parents. His Dad is super in helping him with his studies, so that has been a blessing for them.

Aiden, the youngest boy is loving school as long as things don't change. He fixates on things, until a new  interest comes along. Since Christmas it's been a new digital camera. Rather than discourage him from this, his parents let him indulge in one of the few things he 'can' control. It's as simple as keeping the rechargable batteries charged and downloading the photos he takes when the batteries run out, which is usually every day. His Dad does a quick 'look through' the downloaded photos and usually deletes most of the pictures, keeping very few from each group.
As long as the photography doesn't interfere with his regular routine; meals baths, after school work, etc, Aiden's allowed to continue.

That pretty much covers how our family is dealing with Myotonic Dystrophy to date. Please feel free to comment or to tell us your own story.

If you'd like to ready more about this condition, please go to Myotonic Dystrophy.  

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.