What do your typical ALS clinic appointments consist of?

[Carol]

I was diagnosed with PLS in May 2020 and ALS in May 2021 during the peak of covid so I have nothing good to say about ALS clinic.  Had 2 hour waits, my Palliative Care physician constantly canceled due to childcare reasons. The only test results that were shared with me was the EMG that said ALS.  I had my first respiratory function test in August 2021 which ordered NIV but no one told me my results until I saw it posted in my chart in May 2022. By fall 2022 I learned about the Facebook groups and started getting educated.  I then went on hospice and have never regretted it. My ALS medical team was in a beautiful new facility built in 2017 in a neighborhood that my cardiologist says is a cancer cluster.  Every family I grew up with (Boomers) uses that facility or has cancer or both.  I speculate that the FDA can’t approve ALS drugs until we have the medical teams to administer them.

[John]

I just finished one up at Mayo Clinic last week. My ALS Clinic typically consists of meeting with the Nurses, OT, PT, Neurologist, Social Worker, Speech Therapist, Dietician, Psychologist, and complete a PFT. My ALS Clinic typically takes about four hours or so to get through starting around 9am.

Each discipline involves a discussion and ideas to help me as well as getting data to compare against past ALS Clinic results.

The OT goes through a series of strength tests for upper body to include a grip test with a dynamometer and a pinch strength test with my thumb and index finger.

The PT gets me up on my feet and I generally walk to the door and back starting from a seated position and ending with a seated position with my rollator. They time me for this test. I use to do the Sit/Stand/Sit test for number of repetitions in 30 seconds but I can’t stand without assistance any longer. PT also checks leg strength from my feet to my hips.

Speech Therapist has me do repeating melodies mimicking the speech therapist and then I read a passage for clarity, tonality, inflection, and speed. They also watch my swallowing and listen to my speech in conversation.

The Social Worker and Psychologist talk about life in general and how I’m coping with ALS as well as discussion about my family and friends coping with my ALS. Occasionally they will bring in someone from Palliative Care for end of life discussions.

The Dietician discusses my eating habits, protein intake, weight, etc.

The Neurologist does an exam to include strength tests from feet to head, checks my peripheral nerve sensations, conducts an ALSFRS-R as well a the El Escorial exam. Then we talk about possible treatments and clinical studies. I am just wrapping up with the AO4 Oral Radicava Study and looking to get into the TARGET ALS Study.

Then there is the PFT to determine my lung volume, my MEP and MIP for lung strength. Occasionally, blood draws are a part of the clinic for AST, ALT, B12, CPK, and the new one; NfL or Neurofilament Light Chains.

And then, about 1-2pm I get to go home…Yay!

[Dagmar]

I would be interested in hearing from our members who live outside of the U.S. Does the medical care for ALS patients differ from what is described as happening in a typical ALS Clinic visit? What ongoing tests or therapies does your doctor offer?