Marianne Has ALS

The following is the basicis of our last ALS Clinic visit:

• Neurologist
  • Confirmation that I do have ALS.
  • Currently taking Riluzole. Have submitted authorizations for Radicava and Relyvrio.
  • Talked about clinical trials.
  • Was told my outward expression of emotions (laughing or crying) might become exaggerated, if I find this happening and find it distressing then there is a medication I can take.
  • I specifically requested to NOT talk about timelines. He respected this request.
  • Being fat is statistically better for ALS patients!
• Genetic Counselor
  • We reviewed that there is no ALS on my dad’s side (though she did say my dad should get some genetic testing done due to the cancer clusters in my family).
  • Mom’s history is unknown so we are testing to see if this is genetic.
    • ~10% of ALS cases are genetic, 90% are sporadic
• Case Manager
  • Talked about short / long term disabillity, medicaid, and FMLA.
• ALS United Rep
  • Recommended multiple support groups via zoom (individual, family, caregiver).
  • Will help with finding equipment when the time comes.
  • Recommended speech banking apps.
• Social Worker
  • Recommended a therapist for me, a family therapist, and for the kiddo.
  • Talked about the anxiety / sleeping meds I’ve been taking and if I am depressed (I’m not, just appropriatly sad).
• Occupational Therapist
  • Talked about energy conservation. My battery drains quickly, so look for ways to conserve energy during boring stuff (showering, dressing) so that I have more energy for fun stuff (family time, walks, etc.).
• Dietician
  • Maintain my weight.
  • Don’t skip lunch.
  • Get back to homemade meals.
• Speech Therapist
  • Everything is good!
  • Talked again about voice banking.
• Respitory Therapist
  • Everything is good!

Next appointment: June