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    • #14822

      We are paying close attention to the CDC and keeping an eye on the latest information about COVID-19. Florida, Maryland and several other states have closed their public schools. Most community events such as fairs. parades and festivals have been canceled. National Sporting events have been canceled. Are the COVID-19 closings impacting your appointments at the ALS clinics or for other related appointments?  Are the clinics providing any information or recommendations to their pALS? Is everyone keeping up with the CDC recommendations?

    • #14918
      Susan Gray

      I have my next appointment on March 31 at Duke.  I haven’t heard anything to the contrary yet.  I check their website regularly.  I have only received general alerts from Duke Health Care………..

    • #14937
      Susan Gray

      I have received reminders for my clinic appointment on the 31st so it appears that a my clinic is open.

    • #14943

      My appointment was scheduled for March 18th. The Friday before that I received a reminder and I confirmed the appointment. 36 hours before the appointment I was told not to come. Luckily that occurred before we started the 10 hour drive. So far, no news on when it might be rescheduled. As it turned out,  Salt Lake City had a major earthquake the morning of my scheduled appointment, so even if it had not been cancelled due to COVID-19 it might not have occurred anyway and we would have driven there and back for nothing.

    • #14944
      Marianne Opilla

      I had just completed my screening visit for the Oral Radicava Phase III trial. My follow up to start the medication on 3/30 was cancelled. Probably have to start the process over since it is part of a study and timing of visits is important. Very disappointed, but cannot be helped. Waiting to hear back.


    • #14949
      Susan Gray

      Update on the Duke ALS Clinic. My scheduled appointment for March 31 has been cancelled as the clinic is not open. I will have a Telemed call on that day with my neurologist. I am comfortable with that as I was feeling apprehensive about going in. Luckily I live nearby and don’t have to worry with long travel times to get there.

    • #14953
      Dagmar Munn

      Hi Susan – – great news that they will be “seeing” you! Let us know how the tele-visit goes… is this a good substitute for in-person visits? Etc.?

    • #14954
      Susan Gray

      I’ll let you know how it goes. I don’t know that it’s a good substitute for in-person visits but during this time of COVID-19 it may be the better option, at least for the time being. Personally, I’m doing OK health-wise right now, so I feel OK about doing a tele-visit.

    • #14968
      Diana Belland

      My ALS clinic rotates full clinic visits with one-on-one neurologist visits every three months.  I was scheduled to see my neurologist on March 23, but my daughter, Laura, a geriatrics and palliative care physician in New York City, advised me to cancel so I did.   She is on the front lines in NYC, seeing patients both at a nursing home and a hospital and is keenly aware aware of how deadly covid 19 can be.  She doesn’t want me going out at all.

      I then learned from an email sent by the ALS clinic’s social worker two days ago that all ALS clinic visits and support groups have been canceled at the hospital I attend.


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