Telemedicine Appointment today

[blitzc]

I was scheduled to have my quarterly Clinic appointment next week. But my doctor cancelled clinic for all of us for the next couple months. He called me using video conference app, Doxy. It worked great. He was able to see some basic, simple tasks and lots of discussion walking through the rating scale. I was able to show him my livingroom setup. Obviously no additional personel, other than his resident, were there and he couldn't check out strength, but it was an acceptable alternative to an in person appointment.

I would reccommend this for all of us if available! It keeps us safe. ☺

 

[Nikki J]

Mass General has had televisits for a while. My sister used them later in her illness as she lived a distance away. I had one once for a followup from a recent visit. I agree that now it is absolutely what we should be doing. Generally I think they should be used more liberally. Dr Berry from MGH talked about this at a patient event last year. His example was ” if you tell me you can’t turn a key to open your door it doesn’t matter what my hand exam shows it matters what we can do to solve the problem”

if you are diagnosed you need problem solving and support which you can get with telemedicine. What you can’t get right now unless you have equipment of your own, is respiratory monitoring and hands on equipment assessment and ordering ( afos and wheelchairs for example)

 

[blitzc]

I agree, Nikki. It really doesn't matter what all those assessments determine. Ask me what I cannot do anymore. Ask me what I need. Ask me what my concerns are. Talk to my caregivers about their concerns.

 

[blitzc]

What you can’t get right now unless you have equipment of your own, is respiratory monitoring and hands on equipment assessment and ordering

I'm still waiting on a cough assist. At least my neuro now knows about this issue, so he will hopefully make something happen. Nobody else has determined this important...been waiting since middle of January.

 

[Nikki J]

That shouldn’t need you there in person.

one thing to consider , as with in person visits, is making a concise list of concerns/ issues/ questions. For televisits see if you can email it so the provider has it at the start of the visit

 

[Clearwater AL]

Had my televisit... it went well. Hope it doesn't become the the thing of the
future. They will charge you for the Televisit. Nothing is free.

Did enjoy the lunch they provided and seeing other ALS patients but...

My old saying from months ago concerning PALS and CALS....

"Nothing stays the same anymore." Back to being recluse. Later.

Hope all are doing as good as good can be for you.

 

[Jleblanc]

I had a virtual visit with my Mass General neurologist last Christmas Eve. I wish I could have seen what it looked like when I had to put my open mouth up to my laptop’s camera so he could see if my tongue was twitching.

 

[Clearwater AL]

As I wrote above I did my my televisit with Wake Forest. Three days later I got a call
from the NC ALS Association for a phone follow up call. Apparently Wake relayed my
Televisit with NC ALS. Pretty much the same questions which I gladly participated with.
They were eager to help with anything I needed.

Wrote all that to say I hope other regional/state ALS associations are doing the same
for others.

Again, I hope these televisits don't become the thing the future. I enjoyed the lunches
and seeing others. I doubt they can do the pulmonary tests and etc over the the
phone. We'll get past this someday. I hope some of us make it that long.

 

[Nikki J]

Your clinic is so different than mine. No food or drink. No fraternization. We obviously share a waiting room but no one ever exchanges more than a rare polite word in passing

re respiratory. A study I was in gave us small handheld devices they checked something other than svc but it must have been an adequate proxy as we would report numbers in phone follow up. I doubt telemedicine will fully replace in person but it is significantly less expensive than an inperson clinic visit. Dr Berry gave numbers for this in his presentation. I could see alternating

 

[BlsdMama]

I was scheduled to have my quarterly Clinic appointment next week. But my doctor cancelled clinic for all of us for the next couple months. He called me using video conference app, Doxy. It worked great. He was able to see some basic, simple tasks and lots of discussion walking through the rating scale. I was able to show him my livingroom setup. Obviously no additional personel, other than his resident, were there and he couldn't check out strength, but it was an acceptable alternative to an in person appointment.

I would reccommend this for all of us if available! It keeps us safe. ☺

Thank you for posting. My first ALS Clinic with Mayo was scheduled for this coming week and is now tele-med. I'm not very enthused - I've been going to the U of Iowa ALS Clinic previous to this and had hopes for discussing things like trials... But, I appreciate that you shared it had value for you! That's encouraging - thank you!

 

[Clearwater AL]

Nikki, I wish your clinic was different than Wake. There is one other PALS who goes to
NC Wake who also complimented on the lunch and such. Wake is like a big open room
except for individual testing such as pulmonary and other.

The point I was making above was NC ALS following up with a call 3 days later which
I appreciated their concern too, hoping other regions and state ALS Chapters (If that's
the right designated description) do that for their PALS.

Whatever.... maybe I didn't compose it right.

Best to all.