New pALS

[Amanda]

COVID-19 has been disrupting our lives in countless ways. For our new members who have been recently diagnosed or are in the process of ruling in/out ALS, how have your appointments changed or been impacted? Has anyone been able to continue to keep thier appointments? Have the doctors and clinic staff been taking extra precautions? What have you been doing to stay safe and healthy if you have bee able to attend your appointments.

[Cate]

Covid has required me to work from home full time, which is great because I don’t have to commute and get to keep working. But I now realize how much more active I was at the office–walking to and from the car, to the conference room, the lunch room, etc. Now I’m more sedentary than ever, and that’s not good! So I walk up and down my ramp, “dance” while I’m waiting for the microwave or coffee maker (holding on to my rollator), and so on to keep active.

Most of my appointments have been rescheduled, but my speech therapy is going to be done via Zoom, which is great. Otherwise, I’m staying in, washing my hands, and not having guests–including my (grown) children, which is very hard.

[Dagmar Munn]

Cate – – Bravo to you for being able to keep your body moving during your change of now working from home! That commitment will help maintain your mental energy and, your mobility.

I have been “working” from home way before COVID hit, but find all the email suggestions to “read, watch movies, etc.” pulling me into sitting & watching more than “doing.” I combat this by playing a mental game: designating certain areas of my home for specific movement (like your dancing at the microwave 🙂 )

If anyone needs easy ideas on how to build more movement into your day – – check out this column I wrote on the topic.

On the topic of ALS appointments, I luckily haven’t had any scheduled during this time. My next ALS Clinic visit is in July – – fingers crossed the crisis will be over by July!

 

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