What’s something you wish doctors knew about your life with SMA?

[deann-r]

Ugh, my primary left, so I’ll be doing this soon. Honestly I never know what to tell them. What’s the most important thing you bring up?

[alyssa-silva]

Oof. Not a fun transition. Because I have a full SMA team of doctors in Boston, I’m not too concerned with my PCP. If you have specialists, definitely let your new doctor know. That way, they can communicate with each other if needed while he or she is learning your case.

Another tip I have is to write everything you want to say in the weeks before your first appointment. Otherwise, there’s always something you’ll forget.

When are you meeting your new doctor?

[mike-huddleston]

Hey Alyssa –

To me, it boils down to making sure the doctor doesn’t look at you as an SMA patient disguised in a human body, but rather a person living with SMA (among many other things). Just like interactions with folks who don’t, won’t, or can’t see beyond our condition, especially if you’re using a wheelchair, it’s the lazy view or discomfort that results in such a definition. It’s up to us to help them overcome that.

I had a PCP that had nothing to do with my SMA related care. I should preface this by stating I NEVER went to the doctor unless it was absolutely necessary. But, he was my wife’s PCP so after we married, she encouraged me to start going annually. I gave him the usual rundown, but also note that I was ambulatory at the time and not even using a cane or other assistive device. But obviously, my SMA was progressing (more labored walking, difficulty getting out of chairs, etc.). For my annual visit, the diagnosis code every time for over 15 years was, “Spinal Muscular Atrophy”. I dismissed this as either ignorance or just a need for insurance billing purposes. He had another doctor in the office I saw once for the flu or similar issue and I saw him as I was leaving. He said, “Hey Mike, how are the muscles? Still getting weaker?” I was astonished, angry, and so disappointed. I said, “Gee, doc, after being my PCP for almost 20 years, I would have thought you’d have pulled the PDR just once or Googled SMA. That’s kind of how this condition works. How can you not know that? I will never be back.”

I found another PCP and have been seeing him since 2015 when I started using a power chair. That means I went over 10 years without a PCP. The experience has been much better, but I took the time to lay out basic SMA related info on my first visit and he’s actively engaged and treats me like a person.

And I know we’re discussing PCPs, but just to show it’s not all been negative, while I was still ambulatory, I tried acupuncture with a traditionally trained acupuncturist. She and her husband had moved here from China and were both medical doctors. At the time (not sure if it’s different now) the US had requirements of several additional years of medical training to practice here in the States, but they had started a family, so they opened an acupuncture clinic (it was part of their medical training in China). Between my first and second appointment, she had done a ton of research, reached out to several former colleagues in China about SMA, and developed a comprehensive treatment plan for me. What a great experience!