The Art of Chewing and Swallowing with SMA

If you’ve lived with spinal muscular atrophy for any length of time you expect to have weakness progress in your body. However, one area I was never prepped for weakening was my swallowing.

A change in my ability to swallow

Around the age of 16, I really started noticing a difference in my swallowing. I had always had my swallowing monitored for safety reasons but it wasn’t until my late teens that I started personally noticing the differences and difficulties. I had my share of swallow studies. You know the kind where they make you eat certain foods and drinks with the odd chalky consistency and they watched on the machines as you swallowed.

Austin, my brother who also had spinal muscular atrophy, had the same procedures done as well. He began to have some issues swallowing, so we were going to figure this out together.

A change in jaw alignment

Around the same time we noticed a big change in our jaw alignment and how wide we could open our mouths. Dentist and doctors didn’t have great explanations as to why. We had tried a few procedures to help open the jaw up more but none were successful.

Food was not something I was ready to give up so I needed to find a way to safely enjoy my food!

How to still enjoy my food

I have now had to learn to function with a limited jaw and a weak swallow muscle. I would say I found it most helpful to understand what food and consistencies worked for me.

We have found that cutting up our meat to small bites were the safest. I found that I did much better swallowing a variety of foods as long as I used as many dipping sauces as possible. The more lubrication on even softer items such as french fries the easier it goes down.

I would also say to always, always, always have a drink readily available. I have noticed that sometimes small pieces of food can get stuck in my throat and having a drink to wash it down has always been beneficial.

My top 5 tips for safely and successfully eating are:

• Select items that work for you - I have recently completely eliminated red meats from diet as I found it to be too chewy and difficult to break up no matter how I prepared it. I now consume much more fish as the toughness is very mild. Which brings me to my next point
• Prepared the items how YOU need them. - I known most people don’t prefer soggy veggies but that’s the best way for me to enjoy them without any issues.
• Don’t be afraid to make special requests in restaurants as well! I always order my sushi in 10 pieces instead of 8 just to make it a bit easier.
• Chew thoroughly! - don’t try to rush it. It’s not a race and never worth trying to swallow something that could potentially get stuck!
• Use sauces to lubricate the foods. - ranch is my best friend for many burgers or extra salad dressing! Always have a drink on hand!

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