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Time Is Motor Neurons

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.


This topic has 2 replies, 2 voices, and was last updated 1 month, 3 weeks ago by Alyssa Silva.

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    • #22933
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all living your best quarantine lives.

      Check out my latest column here. As I think about how we’re all homebound until further notice, I’m reminded of past times of self-isolation. Unlike times when I was sick or injured, I’m healthy this time around. It’s pretty surreal, and I reflected on my lockdown thoughts in this column. Hope you all enjoy!

      Do you have any takeaways from this piece? How are you all coping with self-isolation?

    • #22944
      Tracy Odell
      Participant

      When I retired, I made the deliberate choice to stay at home as much as possible during the winter. I only went out for important medical appointments and delayed the rest of them until the spring. Christmas Eve enticed me to go to my sister’s where several family members were gathering.

      So the COVID-19 crisis has made it easier for me to stay home because even my medical appointments are switching to virtual, online appointments – I wish they had done this sooner! and I hope this continues.

      With spring coming, I was looking forward to going out again because I could do so without getting unbearably cold. My best friends and I had made a deal to get together at least once a month for some social time. Now, that is on hold. I feel a little sad that I can’t come out of hibernation yet. At least, I am lucky to live in a house with wheelchair access to the backyard, so I will be able to enjoy sitting outside and reading. And I will continue to stay in touch with family and friends by phone, text and online.

    • #22952
      Alyssa Silva
      Keymaster

      My feelings fluctuate hour by hour honestly haha. I definitely think that SMA and social distancing myself every winter has made me more prepared to handle this isolation.

      However, being isolated can get discouraging. Like I’m literally seeing no one but my parents as we’ve canceled caregivers. Absolutely no one is allowed in our home a right now. Plus, now is usually the time I make my way into the world again, but thanks to coronavirus I’m on house arrest until further notice.

      That being said, yeah it’s tough. Yeah, I miss my caregivers and friends and my old life. And, quite honestly I miss NOT being a ball of anxiety. But if isolation means that’s my highest chance of staying healthy, I’m going to make the most of it knowing I’m (hopefully?) safe and sound.

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