This page contains information and support for people with Myotonic Dystrophy in Canada.
Canada is a country with a centralized medical system. There is additional support for people with myotonic dystrophy in Quebec, as there is a high incidence of Myotonic Dystrophy in this Country. There is also a center for Congential Myotonic Dystrophy research and Dr. Craig Campbell is an expert in this disease. His contact information is at the end of this post.
Many of us in the Myotonic Dystrophy World find that among the most significant factors affecting us are related to brain function. Depression, Lack of Motivation, Apathy, Indifference, and Loss of executive function makes living much less tolerable. In a nutshell these changes create Terrible problems socially and emotionally. Now researchers have identified the issue that they think causes the disease. The good news is that the mechanism for the brain looks like the mechanism for many of the other issues as well. It’s the same as for muscle and other tissues. So if a cure is found in the future it will not just help with heart and muscle it may help with the most devastating issues that of the Brain as well. At the Recent MDF conference in San Fransisco one potential therapy in early stages may work not only in muscle but if injected into the Spinal fluid might help with brain issues.
The conference in San Fransisco was awesome. Loved every minute of it. Met some wonderful people. I got to the conference on the Thurs night. It was an awesome night. Saw Molly white the new executive director she and Amy were running ragged trying to keep everything together. Had a chance to talk with a number of families that night you had come across country for the conference.
Unfortunately I came down sick that night. maybe some food I should not have eaten. I went to an Afghan Restaurant and maybe that did it. Anyway I was able to come and see the first session Cardiac issues which was a lot of fun and very informative.The next session was DM Care and the Advocate’s Role, Dr. Cynthia Gagnon. This was an excellent presentation. She at the end went over the importance of a nurse advocate in working with DM patients. Cynthia is from Canada and they have many resources available in Quebec to help. They are working on the new checklist for management of myotonic dystrophy which is part of an international consortium. Some thoughts here:
Activities That Children Like
So what kind of things do kids with CMD like to do? I am basing this page on my son, Christopher. You may want to consider some of these activities for Children with CMyD.
Computer
Computer games and video and movement in general seems to keep these kids interested. Christopher uses both a MAC and a PC computer. Early on he used an Edmark Touchscreen but later graduated to a mouse after he hit and damaged the touchscreen. He uses most software that has an age equivalent of about 3-8 years old with most of his skills in the 4 year old range. Some software:
Behavioral Problems
Both the Roig Study and some personal correspondence have indicated that older children with CMyD have some behavioral issues that might evolve. I only have very scant information on this subject but here are a few behaviors that have been seen:
Oral Fixation: Children or young adults become quite oral and will suck on hands or clothing.
Spontaneous Laughter: Will laugh to some internal thought for no external reason.
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