As I’m sure most of us can attest, the world is a messy place right now. It is impossible to ignore.
While I have never experienced anything as unprecedented as these times, I have experienced the messiness of life with SMA. I’m finding myself leaning on past experiences to help me get through these days, which according to social media, I have been dealing with for over 100 days.
Doing so has helped keep my head above water when it feels like I’m being engulfed by a wave. Yet, with every different mess that found its way into my day, there has been one nugget of hope that has held true throughout: Regardless of the mess I’m in, joy can still be found.
My past experiences have always led me to the conclusion that there is joy everywhere if I truly take the time to find it. So, that’s what I have been up to lately — sorting through the mess and carefully picking out my joys or silver linings. And one of those silver linings is the emergence of telemedicine.
I have utilized the convenience of telemedicine several times these last few months, thanks to recent health issues, and I must admit I am a huge fan. Someone who has no need to see doctors regularly may not understand the deep-rooted joy I feel to finally have this manner of communicating with my specialists. But as someone who attends more doctors’ visits than she can remember, telemedicine has made my life incredibly easier.
Cutting down on travel time alone is enough cause for me to jump for joy. While I live precisely 56 minutes from the hospital, I must contend with the never-ending Boston traffic. There have been instances in which my mom and I have booked a hotel room next to the hospital for the simple reason that an 8 a.m. appointment means a three-hour commute.
Albeit expensive, staying the night before is more convenient and less taxing on my body since I eliminate having to sit in a car that long. However, with Zoom and Boston Children’s Hospital’s virtual visits, my family can save some money and stress from the commute.
Aside from the long drives, the amount of time spent at the hospital becomes a long day. It is exhausting. I don’t eat properly. My body starts to ache after a while. I begin to dread another long commute home. I get increasingly cranky, and the list goes on. Truth be told, the only aspect of the hospital I ever look forward to is the macaroni and cheese I get at Au Bon Pain on my way out. But with the opportunity for telemedicine appointments now available, I am happy to go without.
Of course, there will be cases when I will have to go to the hospital for tests and procedures, such as with Spinraza (nusinersen) treatment. And I do encourage in-person visits to give doctors a chance to do physical examinations if necessary. I actually would highly encourage it if a person’s symptoms persist after several video calls.
When dealing with something as serious as health, there are many ways to observe the pros and cons of virtual visits. That said, my virtual visits have been of great benefit to me and have met my needs. The convenience and comfort of having these appointments in my home truly have made a difference when factoring in my overall well-being. I have waited for this day for too long, and I hope it’s here to stay.
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.
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