Tagged: ALS and COVID-19, living with ALS, quality of life
- This topic has 8 replies, 5 voices, and was last updated 1 year, 8 months ago by Jim Conner.
February 20, 2021 at 11:07 am #17840Dagmar MunnKeymaster
Right now, the highest priority in everyone’s life is avoiding the COVID-19 virus (and its variants) – – especially for those of us living with ALS. But the virus is strong and has infected even the most careful among us.
Have you had COVID? What was your experience with the illness and recovery? Do you have any recommendations to share for our members (pALS and caregivers)?
February 21, 2021 at 10:17 pm #17852Len JaxParticipant
Thanks for the setup Dagmar – as I said I had Covid in mid December. I had continued with my PT appointments twice weekly throughout the Pandemic as I felt I would lose what little ability I had to walk if I didn’t. A calculated risk I know, but one I was willing to take. At any rate therapy was the source of the virus. The symptoms initially were classic starting with a fever that would be 101 degrees and then be normal an hour later. Mobility was quite impaired. That, extreme fatigue and just a general feeling of malaise continued for about 36 hours. During this time I lost my sense of taste and smell. I also developed a strong distaste for oranges or citrus. I tried eating an orange thinking that would be good for me. I had to spit out the first bite as it was the most sour thing I had ever tasted to the point it brought me to tears. Couldn’t taste the orange just sour. Evidently losing the ability to taste did not include the part of the tongue that reacts to sour. Thankfully I had a mild case and after the first two days I had no symptoms except being a little more tired and I still could not taste or smell. An interesting observation I had from day three to fourteen of the quarantine is that my mobility improved quite drastically. I was able to bend my legs much better and my steps were about 50% larger and much more fluid. Sideways movement and ability to spread my legs was noticeably better also. My spasticity had been reduced a great deal. I hadn’t been able to move this well in probably six months.
I was encouraged. Sadly, since I have recovered from Covid my movement and spasticity have returned to their previous levels. It was very good while it lasted though. My neurologist did not have an explanation for it. I did regain my ability to smell and taste after four weeks. Amazingly my wife did not get Covid even though she is my caregiver and I could not isolate from her in a separate room. We have just completed our second shot of the Pfizer vaccine and have not had any side affects to the vaccine beside a sore arm at the injection site with the first shot. Maybe this was all a quirk of nature but I was wondering if any others in this ALS forum have had Covid and what their symptoms were like? Did anyone have positive ALS outcomes for awhile? I did have difficulty breathing a month earlier from pneumonia and was tested for Covid then but was negative. It is a bit scary when you read your test is positive! Len
September 13, 2021 at 5:54 am #20457
I now have Covid. My son, Joe, went to an ‘outdoor’ folk festival with friends two days after his second Pfizer jab. He & others came back a week ago with cold symptoms. One tested positive for Covid, then Joe did too. Now my whole family have it.
Luckily I have a blood oximeter on my smart phone & a doctor friend, so now two blood oximeters. I’m ticking over at between 93% & 99%. Below 93% it’s blue lights time. I’m rather short of breath.
My brother-in-law, a top UK general practitioner (don’t know what the US equivalent is), tells me the symptoms are no longer mainly loss of taste, persistent new cough & high temperature. The Delta variant now has symptoms including a bad cold. Our government has failed to update the symptoms list.
Turns out the folk festival was a super-spreader event. Two bands who played now have numerous Covid cases. Their parents are equally rather unimpressed – the bands were playing in a packed marquee.
September 13, 2021 at 8:29 am #20459
An ambulance is on its way to take me for chest x-ray and blood oxygen monitoring.
September 13, 2021 at 9:43 am #20462
My sister, a retired doctor, called. She had the same symptoms and took amoxicillin to hit the chest infection. So let’s hope.
September 13, 2021 at 11:21 am #20464Dagmar MunnKeymaster
David – – we are so sorry to learn that you have covid. Stay strong… we are sending you wishes for resilience and recovery. Please let us know how you are doing along this challenging journey.
September 13, 2021 at 1:48 pm #20465Kathy stitzParticipant
David, sorry to hear you have covid and best wishes for a speedy recovery.
September 14, 2021 at 12:06 pm #20475
Phew! Thank goodness I was double vaccinated. I had my blood pressure, temperature & blood oxygen checked every hour through last night and a chest x-ray. Blood ox back to a steady 97%, all else good too.
I could see the screen showing x-rays from my room (no details). Many showed completely blocked lungs. The hospital was our new regional emergency hub – that’s their sole purpose. It was FULL.
Ambulance got me home at 6am.
Thanks for your concern.
September 14, 2021 at 7:38 pm #20480Jim ConnerParticipant
I had it in mid Dec., last year. Got up with splitting headache, nausea and feeling like I was run over by a small car, worse than any hangover! It was a Sunday therefore the ER was the place. They gave me a bag of fluids, a shot for the nausea, a short nap and I was gone. (My old Lab was sick the day before and had bag of fluids and a shot too!) I felt better in a couple of hours and was quarantined for a few days, got released on my birthday.
Now there are 16 folks in our extended family, only one other person has knowingly gotten the bug. No one else. We have never gone hard on masking or social distancing. We have all been exposed and only 5 of the 8 adults have gotten the shot. My wife and I got it in April and May. The second shot had more side effects than the bug! No more shots for me.
Personally I am not scared of covid. I come from a medical family and SINCE the chances of dying from Covid are 100 TIMES less than the crap we all have. I am NOT DAMM WELL spending my last few months and years hold up and losing out on my last chance to LIVE LIFE.
The outrageous hysteria on Covid makes my blood boil. It has become political and made things worse. I am a man of science and this is loads of bilge.
I will get off my soapbox.
LIONS NOT SHEEP!
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