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NDF Third Annual Symposium, My Exercise Routines, Presentations at the International Congress for NMD, New Advocacy Site And GNEM Newsletter in Many Languages

  The Neuromuscular Disease Foundation will be hosting its third Annual Symposium at the University of California, Los Angeles, on August 31 and September 1.  This event will focus on celebrating GNE Myopathy patients, increasing awareness of this disease, and it will present the most  recent developments in GNE myopathy by speakers from the National Institutes of Health, Ultragenyx, and Emory Labs. There will also be a session on nutrition and exercise.  I look forward to seeing many of my friends.  Here is the link to register:  http://events.r20.constantcontact.com/register/event?oeidk=a07ecuiyp8578ca192b&llr=5ukeofsab
My Exercise Routines
I have been intending to post a few of my exercise routines for a long time as many friends and patients have asked me what kinds of exercise I practice.  I know that as GNE Myopathy patients, we are quite diverse in the degree of our progression of this disease, and at the same time limited as to what exercises we can do, due to our physical condition. Therefore, some of us can still run or climb stairs or walk without a cane, whereas others need to use leg braces (afo’s), a cane, or a wheelchair. 
When I was first diagnosed with a muscle disease, my doctor advised me to not exercise because that would hasten muscle weakness.  I spoke to many patients in the GNE Myopathy community, and also to others who have various subtypes of muscular dystrophies, they - like me - were told as well not to exercise.  
Currently, however, I think many in the medical field are looking at what exercises that those with muscle diseases would find most appropriate. More and more the advice of those in the medical field has shifted towards various forms of functional exercises to maintain/improve quality of life for patients.  I believe that the effects of exercise on those with neuromuscular diseases should be examined more completely by the scientific community.
Throughout my life I have never not exercised so when my doctor advised me to discontinue exercise, I continued nevertheless to exercise, knowing that I absolutely needed to pay attention to how my muscles felt.  Specifically, I needed to evaluate how sore, how exhausted or how much pain I felt after my exercises.   As my disease progresses, I continue to tailor my exercises to fit my physical abilities.  I used to dance, jog, and do aerobics. Then I gradually had to change to yoga and tai chi, and now I have to switch to adaptive PE and water aerobics. I am also very attentive and “tuned in” to how my body feels as I begin and end my exercise routine.   If I feel energetic or if I feel any sign of pain or exhaustion I adapt to my new condition. I feel quite weird and funny saying this -"I feel as if my muscles contain memory and are able maintain the memory of my particular daily movements, and they tell me what I can do and cannot do" (LOL).  
At times I compare myself to a younger version of myself - the invincible who has no limitations!  I invariably wish I could muster up the muscle strength to be and look a little more graceful in walking.  This disease has continued its weakening effects on my muscles and has rendered my gait somewhat clumsy, waddling, and slow.
For me, walking feels like I am living in an alien body.  Recently, I looked at a video of me walking. Oh my! I am saddened and have become quite self-conscious, and have stalled in my thoughts - I have even cried! Truly, I mourn daily in very moment of my conscious awareness of how I was once physically capable.  Then I remind myself of a quote by Oriah Mountain Dreamer   "I want to know if you can see Beauty even when it's not pretty, every day, and if you can source your own life from its presence."


Using a hand control vehicle to get to my exercise class:

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