The pandemic continues

[Amanda]

In January I had barely heard of COVID-19. Then, by mid-March, my world changed dramatically. At that time I falsely presumed life would be back to “normal” by now.  I had a visit to the ALS clinic in Miami scheduled for June but with the COVID rate soaring in Miami I opted to postpone the research visit. It has been very disappointing because many of the articles I’ve been reading about ALS seem to be included in the research study that I volunteer for in Miami (one of many participating clinics).

Is COVID still impacting your clinic visits? What advice do you have for pALS and caregivers living in COVID “hotspots?”

[Dagmar Munn]

I live in a hot spot – – Arizona, and just had my “ALS Clinic” visit… it went OK (although I had lots of anxiety about it!). In fact, I’m writing my next column about the experience 🙂 Bottom line: in-person is far better than online, medical centers are following all guidelines and, it’s good to be able to touch base and talk with your neurologist.

[Veronika Wuyts]

here in Belgium Covid is living its second wave. We just continue going to the neurologist and the physio sessions that are held in the hospital. Washing hands regularly and masked we just go for it.

[Susan Gray]

I live in central NC which is not considered a hot spot but the virus infections continue to slowly increase.  My clinic visit was last week, and I too was anxious about it.  It all turned out fine as everyone was required to wear a mask while in the clinic.  I observed services being constantly wiped down.  All in all it felt very safe.  I much prefer in-person visits than TeleHealth.

[Cindy]

I’m in The Philadelphia area.  Clinic visits are virtual. However I’ve been told that they are working feverishly to open a new clinic space. I’d much rather be seen in person.
I go to an infusion center for Radicava and feel perfectly safe. I’m sure every precaution will be taken at clinic.

[Dagmar Munn]

Here’s what happened to me last week at my ALS Clinic visit 🙂

Taming My Runaway Thinking

[Amanda]

Rates are continuing to climb in Florida as of yesterday’s news. I heard something today suggesting that the new case rate and death rate had held steady (as if that was good news).  I can’t help but think that since they closed a lot of the testing sites because of the hurricane that the numbers aren’t accurate. I still need to visit the clinic in Miami, but I’m not sure when.

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