A father’s perspective: Our journey to finding a treatment
When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.
For today’s Motivation Monday post, I want to talk about employment. October is National Disability Employment Awareness Month (NDEAM). Though there are still plenty of stigmas about those of us with disabilities and our ability to work, there are plenty of employment opportunities for us. I know people with SMA who are entrepreneurs, engineers, writers, computer scientists, lawyers, and more.
For me, my job is a big source of my motivation. I love what I do, and the people I work with (even though I work remotely). One of my colleagues who writes for our Muscular Dystrophy site echoed these sentiments in his latest column.
Do you find work to be a source of motivation in your life? If you are unemployed, do you have any questions about seeking employment?
Work is a huge part of my daily motivation. It is hard to overcome the fatigue and the general challenges associated with navigating SMA and work (EX: a 2.5 hour wheelchair clinic this morning), but 98% of the time it’s worth it!
Totally understand the fatigue aspect. Spinraza has helped a lot in this regard, but I still have to be careful not to burn myself out. But like you, I find that the joys of working outweigh the negative aspects.
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.