FSH Conference

I would like to take a second to let everyone know about the FSH conference- which is next weekend!  I truly wish I could go.  Info from fshsociety.org to follow...
 
2014 FSHD Connect
The FSH Society's Biennial International Network Meeting for FSHD Patients, Clinicians and Researchers
Saturday-Sunday, August 16-17, 2014
The Westin Boston Waterfront, 425 Summer Street, Boston MA 02210
The 2014 FSHD Connect Meeting will bring together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. This year's meeting will feature talks by leaders in the field of FSHD, including reports from major clinical and research centers, question-and-answer panel sessions, and educational workshops. Popular breakout sessions include topics that members have requested, including teenagers and young adults, caregiving, traveling and sports.

View the tentative Program and Agenda HERE
See faculty and breakout speakers HERE
Info and Online meeting registration HERE
Mail-in / fax meeting registration HERE

Visit: http://fshsociety.org/ for more info (info is on the homepage under News and Events).

Support Group Meeting

On Monday night, I attended another support group meeting.  The group meets once a month, and depending on the day there can be anywhere from 3-10 people there.  Individuals who have a muscle disorder, those who are care takers, or those who have family members with a muscle disorder often attend the meetings.  At this meeting we had a very good discussion about the challenges we face as individuals who have muscle disorders.  One main concern mentioned was, that doctors don’t tell us what’s going to happen to us.  This is not a concern of mine- as you will read in my book- I am quite certain that I have been better off and had more will to keep pushing forward because I ignore what is “supposed to happen.”  I will continue to do this for as long as possible.  Additionally, doctors can’t always tell us what to expect.  The disorders vary so greatly, and even within a specific muscular dystrophy the symptoms can range significantly.

The other major concern noted was, not knowing how much we should exercise.  It is true that vigorous exercise can damage muscles which, in our case, may not recover.  Several types of exercise were encouraged from other group members.   Some of these included: working out with a personal trainer/physical therapist, doing aquatics therapy, and practicing hot or warm yoga (this is a favorite of mine!).  One gentleman shared that when he was first told he had MD, he was afraid to exercise- he thought he would damage his muscles.  Because of this fear, he developed illnesses like diabetes and high cholesterol.  The body is meant to be in motion, it’s meant to move.  For those of us with muscle disorders, loss of strength, and loss of coordination, this can be a serious challenge.  To the extent that we can, though, we should all try to do some physical activity.  

One important point we kept coming back to at the support group meeting: even though we all have different muscle disorders, our experiences are so similar.  We experience challenges in daily functioning, we often experience depression, anxiety, and there’s always worry… even if we can keep the thoughts it the background most of the time.  The future is the hardest thing to think about because we really can’t know what to expect.  We don’t know what our lives might be like, we don’t know what other functions might be lost, and we don’t know how bad it will get.