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    • #22343
      Dagmar Munn

      I’m currently recovering from having COVID. Ever since it first appeared in our lives I thought if only I followed all the guidelines, I could avoid it. But the variant that’s been circulating this summer seems to have found me.

      I’m fully vaxed and boosted so I believe that contributed to keeping my symptoms on the “mild” side and with my ongoing recovery. But having COVID and living with ALS symptoms sure is no fun! I know I will go back to being super diligent about masking and keeping my hands clean.

      So, how are YOU doing? Have you avoided COVID this summer, or have you had it too? If you are a caregiver or a pALS, are you continuing to do anything differently as the new variants spring up? Will you be getting the new booster? Do you have any helpful tips to share with fellow forum members?

    • #22358
      Ralph Morelli

      I had a mild case of covid in mid January. It only occurred to me recently, but my FRS declined more than it’s usual rate over the past 6 months. I asked at my ALS clinic if they had seen any other cases where a patient’s declined seemed more rapid after covid. The reply I got was “yes” — a couple of other patients had experience similar declines. Of course, there’s no way to know at this point whether that’s just coincidental or not. Has anyone else experienced a more rapid decline in FRS after covid?

    • #22370
      Dagmar Munn

      Ralph, I’m still in my 2nd week of recovery but am noticing that the previous week of bed rest and minimal physical movement had a negative effect on my overall strength. It’s an example of “disuse atrophy” and boy, does it happen quickly!. I am slowly getting back to doing my various movement routines… but having to start with lower reps and shorter time periods. Maybe it’s also the lingering covid fatigue. But I hope my diligent attention to getting back to my pre-covid strength levels will prove to be OK.

      We pALS fight not only the ALS progression but that sneaky disuse atrophy as well.

      Ralph, are you doing any movement routines?

    • #22373
      Maggie Broeren

      Fortunately. my spouse, Michael and faithful caregiver have avoided Covid. We are all Vaccinated and boosted! Prayers for all pALS w Covid – such a scary time.
      maggie B

    • #22402
      Ralph Morelli

      <p style=”text-align: left;”>Dagmar, I’m happy to hear you’re recovering from covid and getting back to your exercise routines. It sounds like your case was much worse than mine. At this point I’m doing some range of motion exercises mostly while in bed, trying to strike that balance between keeping moving and not exhausting myself. I do still get in a little walking with my rollator in the house. And so it goes.</p>

      • #22408
        Dagmar Munn

        Yes, Ralph, range of motion exercises are a great start to help with recovery.

        My update – – it’s been 2-1/2 weeks since the onset of my covid, and, I’m finally not coughing (yay!). Still sleeping a lot, but have to say, I do feel better.

    • #22399
      Kathleen B (Katie)

      I don’t think I’ve had COVID so far (2vax, 2boost), but I do stay in a small bubble too so can see grandkids ages 1 & 4 (who are now finally able to get vaccine protection).   My question tho—what is FRS?  (I know FVC for breathing)— what does the next acronym involve?  From Dagmar’s response, I’m guessing it is movement issues?  Thanks for help —always hope to learn new things in timely manner.


      • #22407
        Dagmar Munn

        Hi Kathleen, I think Ralph meant “FVC” – – forced vital capacity. Or… maybe he meant FRS-R (Functional Rating Scale-Revised). It’s what they use in the ALS clinics to gauge the rate of progression of our symptoms.

    • #22422
      Trevor Bower

      Had all the shots, including a booster. Going for booster #2 soon.  Mask up!

    • #22416
      Pete Caluori

      I’m sorry to hear that some of you had COVID.  Fortunately my wife and I have steered clear of this horrible pandemic.  Everywhere we go we wear a mask even to the dismay of others, but with that said we don’t go out much and when we do we take all precautions.  We especially avoid crowds and avoid social contact with those we don’t know. We are both fully vaccinated and fully boosted.  Personally I’m terrified of getting this horrible disease, because I’ve had breathing issues my entire life!

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