Wonderful Conference in San Fransisco

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:

  • There are over 54 (FIFTY FOUR) concerns that your doctor needs to look at with Myotonic Dystrophy
    • A new Checklist for the above is in development (2013)
    • Each case of DM can have a different clinical presentation
    • Its a rare disease one of thousands that a Doctor needs to know
    • Patients have to repeat over and over info to doctors and nurses
    • The sample of people here at conference is biased and very motivated
    • (42,500 with disease in USA and Canada 300 at conference!)
    • Most individuals have reduced social network support
    • There is a lack of targeted health care initiative by government
    • Nursing case Manager is critical. Recommended

Need to get pneumonia vaccine every 5 years
Flu Shot every year

Muscle strength loss about 1% per year with variations

After this first day there was a great reception and I got a chance to speak with a number of people with DM. The Myotonic Dystrophy Foundation does a great job with the conferences. They make sure there is a lot of time to talk with others.

They also had a number of vendors. The best one for me was one by Hillrom. They had a booth featuring the Vest. This is a great product if there is any risk of coughing and pneumonia. I ordered one up but it was too late for my sons latest bout of pneumonia.


This was a day where there were breakout sessions. These sessions were quite a few so I went to two of these. Cynthia Gagnon had a great one on occupational therapy. Some take aways here:

Everyday activities
GI tract involvement with pain and elimination
Dysphia is present in 45%
Coughing during meals a warning sign
sit in upright position while eating
stay upright for 20-30 minutes after eating
eat small meals often versus a big meal
dressing (15%) hve to adapt clothing to dress themselves
Falling is 10X more prevalent with DM. Implement fall prevention program

Items to help
There are a lot of them. Your senior center can help too
Raised seat or power seat and chair
shoe Handle
zipper puller
2 handed cup
Dycem placement mat
swing up grab bar
Raise toilet (tolietevator)

Key take away here was ===> GET A Occupational Therapy evaluation every two years to that you can keep on trucking!

Second session I attended with John Day and he took a lot of questions from Audinece about cardiac issues

The general session in the afternoon is very complicated subject but critical to the financial health of people living in the USA and that is Social Security and SSI. Great presentation by Understanding SSI & SSDI, Daniel E. Fortuño, President & CEO, Benefits Education Center. Money and financial issues are critical. You must properly plan on how to get benefits and when to apply and how to qualify. You may need a professional here to help!

The last session is about research and we will handle this with a separate blog post



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