Nutrition and Healthy Eating While Living With a Neuromuscular Disorder


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mini-food-processor-and-resultsWe all know that getting the proper nutrients is vital to maintaining energy and overall muscle health, when affected by a neuromuscular disorder.  This is scientifically proven.

Rather than getting into science, this story is about sharing some personal experiences and useful hints to maintain healthy eating habits.

Having Spinal Muscular Atrophy (SMA) for over 40 years has created many challenges in my life, two of which are chewing and swallowing because of muscle weakness.  My first experience with adapted food consistency was when I was twelve and in the hospital.  I was provided with a pureed pizza, which came like a milkshake and totally grossed me out!  However, not being one to judge on first try, I kept trying different things and today eat most of my meat and vegetables in a modified texture called mechanical soft.  Basically the food is not pureed or liquefied, but minced in a food processor to a pâté like consistency.  First point of advice, try different techniques and consistencies until you find something that works for you.  Most food works well, except for potatoes, pasta and pizza (too bad).  I also find it helps with swallowing to have some form of sauce to help get the food down.

Sauces can pose another problem – calorie intake, which is very important when living with a neuromuscular disorder.  Without physical activity, weight gain is very easy and can pose significant concerns for both breathing and movement.  Therefore, ensure that you are getting all the nutrients you need without a lot of extra fats, sugars and salts.  High protein also seems to work for me when it comes to energy and weight loss.  I’m the last one to say this, but staying away from junk food and late night eating also are keys to success.

On the opposite end of things, due to difficulty eating, the energy it takes and the time involved in eating, we also need to ensure that we are getting all of the nutrients that we need and finding that balance is hard.  Everybody thinks I eat a lot, but it’s because I eat small amounts very slowly and frequently.  I recently started taking a nutritional supplement (Boost or Ensure for example), after being told that I shouldn’t be eating after having failed a swallowing test.  Not that this is the right thing to do, but I eat for pleasure and have chosen to keep eating based on what I know I can and cannot do.  Furthermore, I now know that I have the supplement to get my nutrients if I am too tired to eat or have a cold or flu which affects my ability to eat.

Hydration is also extremely important.  Once again, it’s tiring due to the energy it takes to swallow and often causes bloating because of lack of movement, not to mention creating challenges due to the amount of work involved in getting to and from the washroom.  The benefits for breathing, organ function and maintenance of weight far out weigh the cons mentioned above.  Try, try and try again!  The more you drink the easier it gets.  Find something that you like to drink if water isn’t your thing, such as caffeine free herbal teas and other low calorie beverages.

Finally, we all like to eat out in restaurants and when traveling.  Here are some helpful tips to consider when planning these activities:

  • Call the restaurant/venue to ensure they can accommodate your request
  • Tell them exactly what you need
  • Let others in your network know your requirements
  • Have list of preferred foods, ones that work well for your requirements and any additional requirement, such as straws or certain utensils that work better for you.  Maybe even bring your own just to be safe?
  • Perhaps consider eating before going out, if the social activity is the primary purpose and you find difficult to eat, breath and speak at the same time.
  • Bring a mini food processor with you if you need to have a different consistency.  You would be surprised how many restaurants do not have one. From my personal experience, I have gone from having a steak that looks like a milkshake to one that someone tried to cut with a knife and fork.

Nutrition and healthy eating are so important, so try your hardest to get what you need to live healthy, while still enjoying your food.  It is recommended that you speak with your own nutritionist to find out your ideal calorie intake and what food options are best for you.

Read more: Nutritional basics for SMA Kids


Jeff Sparks is the National Director of Volunteer Engagement and Organizational Development with Muscular Dystrophy Canada. He is a quadriplegic and relies on 24 hour attendant care, which he manages himself, for all physical activities of daily living. Diagnosed at 10 months of age with Spinal Muscular Atrophy Type 2, he was not supposed to live past the age of 2 years old. 39 years later, there is no slowing him down.


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2 Responses

  1. Tracy Edwards says:

    Great article Jeff! We are having success with tube feeding. It has really helped to take the stress away of trying to get enough calories in by mouth with chewing and swallowing difficulties.

  2. Louise Hellyer says:

    I am very interested in your nutritional articles. Would you be kind and share with me how you became interested in nutritonand what your background is? I am a nutrition co sultans. I attended a technical school in Calgary during the late 80′s.

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