What I wasn’t expecting: A diagnosis of type 2 diabetes

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by Kevin Schaefer |

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My life often echoes the absurdity of a Monty Python sketch. When my primary care physician called me on a Friday night in early May, I wasn’t thinking about my health. I hadn’t experienced any unusual SMA symptoms that week, and thus wasn’t expecting the urgency in his voice. I’d just gone in that day for routine bloodwork in advance of my next Spinraza (nusinersen) injection.

“Your blood sugar levels are abnormally high, and unfortunately this is consistent with a diagnosis of type 2 diabetes mellitus.”

At first, the words didn’t quite register with me. Surely, this finding was just a fluke and I’d be fine within a few days. Still, my doctor wanted to see me as soon as possible and told me that if I did feel anything unusual in the meantime, I should go straight to the emergency room.

I must say that I didn’t expect to see a new diagnosis on my 2024 bingo card. Maybe the powers that be thought I was bored with what I already had in my medical history documents.

Alas, my doctor’s suspicions turned to confirmation when I saw him a few days later. I am diabetic.

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Managing my new condition

The diagnosis has had a major impact on me mentally and emotionally. I openly talked with friends and family about how anxious I was, and I had difficulty thinking about anything else for several weeks. Whereas SMA is something I’ve lived with my entire life, I wasn’t prepared to enter new disease territory as a 30-year-old.

Reflecting on it, things such as my increased fatigue in recent months make more sense. While I’m glad that my doctor caught it early and took immediate action, I knew that this condition would require daily management and significant lifestyle changes. The reality of having one more health component to deal with hit me.

These changes include dieting, new medications that I take twice a day, and monitoring my blood sugar every morning. I’m eating low-carb foods, not drinking regular soda, and finding alternatives to snacks I used to eat. The positive is that I’ve fallen in love with the brand Catalina Crunch.

Exercise, however, is harder to increase for a wheelchair user with limited upper body strength and range of motion. While I still do aqua therapy several times a month, I’m limited in what I can do daily. Fortunately, my doctor understood this and didn’t instruct me to start lifting weights.

Since implementing these changes, my numbers have steadily improved. Eating a healthy diet isn’t just providing me with physical benefits, but it’s also helping me feel more confident about my future. While I’ll need to be especially careful in the next couple of weeks as I travel to Austin, Texas, for the annual Cure SMA conference, it’s comforting to know that type 2 diabetes is manageable.

My hope now is for researchers to explore if there’s a correlation between diabetes and neuromuscular disabilities such as SMA. That could pave the way for more support and resources that are specific to our needs. And for those in the SMA community who are diabetic, know that you’re not alone.

Living with SMA is about constant adaptation. That’s especially true when another diagnosis comes into play. The past month has been an unexpected whirlwind of emotions and drastic changes, but the only thing I can do is keep rolling along.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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