• Posted by Amanda on April 8, 2020 at 10:48 pm

    For the research study I participate in, the pre-fALS study, I have in person visits twice a year and remote visits quarterly. During the quarterly visits they draw blood and do a urinalyses and they host a phone call where they track symptoms and environmental factors. For pALS or potential pALS, have you been able to do any of your appointments or part of the data gather portion remotely? How does that look? Can you zoom or hold another virtual meeting with your team of medical professionals? What services do you think the medical professionals could conduct virtually?

    Dagmar replied 4 years, 1 month ago 4 Members · 5 Replies
  • 5 Replies
  • Dagmar

    April 9, 2020 at 11:50 am

    Good question, Amanda! Over the past few (home-bound!) weeks, I’ve been hearing from several of our pALS forum members that they’ve communicated with their doctor and therapists via phone and Zoom. I invite them to share their experiences here and tell us things like: did you feel you got your questions answered, where there technical difficulties or were you comfortable doing a visit this way….??

  • Diana Belland

    April 23, 2020 at 4:55 pm

    My ALS Clinic alternates full clinic visits with a one-on-one visit with my neurologist every three months.   I was due to see my neurologist on March 20 but all in person visits were canceled, so I scheduled a phone call for April 15.  The app my doctor’s office wanted me to download to do Zoom was for Iphone 11 or later.  I have an Iphone5 and was unable to download the app.

    I can easily do Zoom on my laptop, but was told that the only choices were Iphone or Ipad.  To be completely honest, I was relieved not to have to demonstrate my walking which I felt had declined since my last clinic in November.  My neurologist asked me some standard questions (which were by no means comprehensive) and then asked me to count to sixty on one breath (which he does at every appointment). He then indicated he was happy to hear my short list of questions about drugs and trials.  He told me I was a “perfect candidate for any trial.”   Hearing that triggered a burst of hope and gratitude, followed the next day by feelings of guilt that I had not disclosed to him the fact that getting in and out of bed was harder than it used to be, and that I’d had to drop some exercises because I couldn’t do them anymore.

    But in that 30 minute phone call, there was only time, it seemed to answer his questions while he typed the answers and to ask for advice about two trials I was interested in.   On the whole, despite my feelings that perhaps my doctor might not have gotten a full picture of my physical state, I was very comfortable doing my visit by phone and felt that I did get my questions answered.    I had been tempted, frankly, to put off the remote visit but am very glad I went ahead and had the phone call.   I like my neurologist very much, and always enjoy talking with him.

  • Dagmar

    April 24, 2020 at 12:32 pm

    Diana – – thank you for sharing your experiences with this new thing called “tele-medicine.” I’m glad you had a good visit.

    However, I think we’re all still on a learning curve on how to best utilize it. Doctor’s need to develop their online “bedside manner” and we patients need to avoid getting intimidated by all the technology.

    I’m not inferring anything about your visit Diana 🙂 Just expressing what I hear from other pALS….

    Remote visits will probably become a permanent part of our ALS medical landscape 🙂

  • Susan Gray

    April 25, 2020 at 12:00 pm

    My ALS clinic visit was supposed to have been on March 31 with the team as well as my neurologist.  Since being diagnosed in November I’ve only seen the team one time and was disappointed to not be able to see the therapists.  I was to begin participating in a respiratory study with my SLP and that has been put on hold for the time being.  I hope I continue to be a good candidate for the study, since it will now be a few months before we start on that.

    I had a phone visit with my neurologist who asked me the questions from the ALS Functional Rating Scale and we talked about supplements.  The phone visit was OK, but being still early in my diagnosis I really want my therapists to see me.  Every now and again I feel like I’m in a canoe without a paddle in the middle of the lake.  At the end of the visit my neurologist announced that I would be seeing Dr. Bedlack next time because she was moving.  So now I’ll be starting with someone new yet again.

    Thanks for listening.  I do think remote visits can be a good thing when all the kinks are worked out, but I’m not sure phone calls are the answer.

  • Dagmar

    April 25, 2020 at 12:19 pm

    Susan, yes the “kinks” have yet to be worked out to help make remote visits go a little smoother. I think everyone is trying to match what happens in-person, (square peg in a round hole) and we’ll hopefully come up with a new paradigm, or way to do these visits to everyone’s satisfaction.

    However, being transferred to Dr. Bedlack in my opinion will be very beneficial. He is highly regarded in the world-wide ALS community and, I hear he has a good rapport with all his patients. 🙂

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