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."

     **  PLEASE CONSULT YOUR DOCTOR BEFORE  STARTING ANY EXERCISE REGIMEN

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

This video shows "sit-to-stand".

Using a Nu Step. I use a yoga strap to keep my knees from splaying out.                                  

Here I am using a leg press to target my lower body - quadriceps, glutes, hamstring, and hips.              

 

This one shows my instructor explaining the techniques and purpose for this exercise.              

Postural chain with seated rowing using a theraband.                                                                              

Here is a link to one of my previous blog on exercise.                                                                           http://taratalksgnemyopathy.blogspot.com/2012/12/keeping-pace-with-adaptive-exercises.html
  
 Here are some  links on suggestions for appropriate exercises for those with neuromuscular diseases.
1.  Dr. Vissing's presentation.  http://content.iospress.com/download/journal-of-neuromuscular-    diseases/jad169001?id=journal-of-neuromuscular-diseases%2Fjad169001 (page 52)
2.  http://www.treat-nmd.eu/downloads/file/registries/GNE_HIBM/GNEM-         DMP_Newsletter_April_2015.pdf (Scroll down to page 4)
3.  http://www.musculardystrophyuk.org/app/uploads/2015/05/Exercise-advice-for-adults.pdf
     http://www.musculardystrophyuk.org/app/uploads/2015/05/Exercise-advice-for-adults.pdf

4. http://www.myositis.org/storage/documents/General_Research/2016/Physical_exercise_as_a_treatment_for_adult_and_juvenile_myositis_Alexanderson_2016.pdf

Presentations at the 14th International Congress for Neuromuscular Diseases
Here are two (abstracts presented on GNE Myopathy at the muscle conference recently held in Canada.  I have copied parts of the abstracts that I found interesting and pertinent to GNE Myopathy. Please refer to the links below.

1.  GNE MYOPATHY: MILESTONES AND DISEASE PROGRESSION BASED ON PATIENT SELF-REPORTED DATA COLLECTED THROUGH THE GLOBAL PATIENT REGISTRY by Oksana Pogoryelova1, Phillip Cammish1, Supriya Rao2, Ed Conner2, Alison Skrinar2, Hanns Lochmüller1

"However, significant differences in speed of the progression highlight the importance of studying factors which can influence the severity of the disease and its course, e.g. concomitant diseases, lifestyle and underlying genetic variability".http://content.iospress.com/download/journal-of-neuromuscular-diseases/jad169001?id=journal-of-neuromuscular-diseases%2Fjad169001  (page 151)

2.  PHENOTYPIC CHARACTERIZATION AND PATTERN OF MUSCLE INVOLVEMENT IN GNE MYOPATHY byVeeramani Preethish-Kumar1, Oksana Pogoryelova2, Kiran Polavarapu1, Narayanappa Gayathri3, Seena Vengalil4, Judith Hudson5, Chandrajit Prasad6, Hanns Lochmüller7, Atchayaram Nalini4

"Conclusion: The clinical features of this large cohort of GNE patients from India is similar to those reported elsewhere with different founder mutations. This suggests that GNE myopathy is a more homogenous disease unlike other distal myopathies. The study also provides the base for using MRI as important tool for diagnosis of clinically suspected cases".http://content.iospress.com/download/journal-of-neuromuscular-diseases/jad169001?id=journal-of-neuromuscular-diseases%2Fjad169001 (page 152)

Here is another passage from an abstract discussing vitamin deficiences.
"Vitamin deficiencies may be an important unrecognized contributing aetiology in neuromuscular disorders including various myopathies. Vitamin B12 and Vitamin D deficiencies are most frequently identified in neuromuscular patients. Vitamin D deficiency in myopathies seems to exceed the reported frequency in general population in Canada. We are currently analyzing Vitamin D levels in patients with myopathies seen from 2010-2015".  
http://content.iospress.com/download/journal-of-neuromuscular-diseases/jad169001?id=journal-of-neuromuscular-diseases%2Fjad169001   (page 96)
Additional updates:
Ultragenyx has created a a site focussing on patients advocacy and ways to help the patients community:  http://ultrarareadvocacy.com/patient-advocacy/

The  GNEM newsletter is now available in many languages:  http://www.treat-nmd.eu/gne/patient-registries/international-registry/newsletters/
And now for William Wordsworth

“Though nothing can bring back the hour
Of splendor in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be...” 

** It takes a village - video credit - Hyunseung, Mark, and David.