Free Advice Worth Paying For

I go to my family and friends for advice before anyone else. They’ve always given me tremendous input, but how is that affected by SMA, if at all?

In the following interview, the first in a series, I’ll explore how SMA impacts the way people perceive me, as well as share valuable advice for families with a loved one newly diagnosed with SMA.

My grandmother, Krystal Brown, is the wisest, most selfless person I’ve ever met. I consider her the glue that holds our entire family together. She puts the needs of her family above her own on a daily basis. That said, who better to start this series with?

RB: If you could only give me one piece of advice about life, ignoring that I have SMA, what would you tell me?

KB: Always do the right thing. There’s never an excuse to do the wrong thing. So, no matter what your circumstance in life is, do right. Yes, that is biblical, but it’s also really good advice for life. Do what’s right, and that’s not determined by the circumstances.

Would you tell me something different if you took SMA into consideration?

No, I wouldn’t tell you something different. That would be the first thing I would tell you. Nothing matters more than that in my opinion, and this is my opinion.

What counsel would you give a family with a new diagnosis of SMA?

It’s hard, but there’s lots of hope now. There’s every reason to be optimistic because there’s treatment. Get your child the treatment as soon as you can. Not only that, but there’s so much new in technology from what there was, and doctors are more knowledgeable about SMA now. So, it’s not a death sentence by any means. …

Because of the internet, you don’t have to try to remember a doctor’s number that you met once. The [SMA] family is very helpful, and you do need to listen to people who have gone before you, because sometimes they’re the experts more than the doctors are. You’re the expert on your SMA child, and you need to study up and be ready.

What would you say is the most important thing someone with SMA can do to improve their physical health?

In our experience of 22 years living with SMA, hydration is a huge priority. For individuals who have difficulty with the physical aspects of drinking enough fluids daily, a G-tube can literally be a lifesaver. Our experience with this procedure, done at age 6, is that it was a simple surgery and there have been zero complications over the years. Previously, there were chronic bouts with dehydration, serious enough for hospital stays.

If you could only give me one piece of advice for good mental health, ignoring SMA, what would you tell me?

Avoid comparing yourself or your situation with anyone else’s. The only time comparison is healthy is if we compare ourself now to ourself a year ago, or even compare ourself now to what we aspire to be in future years.

Would you tell me something different if you took SMA into consideration?

I would say the same thing because I feel like, more so now than ever due to social media, it’s all too easy to compare our lives with people we don’t even know. We compare looks, marital status, vacations, possessions, etc.

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I expected this kind of advice from my grandma. Even though “do right” is unspecific, I understand and appreciate the wisdom. We have a strong moral compass in our family, and she’s simply urging me to be true to it. The other answers are consistent with my life experiences.

What advice can you give? Share in the comments below.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.