Cyndi Zach

I will be starting Radicava in oral form this month as part of an efficacy and tolerance study through my ALS clinic.  The drug will be new for me.  Same schedule as the iv form.  I’ll keep you updated.

I laugh at myself every morning when putting a bra on; I can really work my way into some pretty funny positions.

I also had a good laugh with myself one day trying to pull a hooded sweatshirt on.  It was like being in a straight jacket!  I really thought for a few minutes I was going to have to call 911 to rescue me.  My arms were caught ha…[Read more]

I have had ALS for 1+ years; have 95% disability in my non-dominant arm, and am now experiencing weakness in other arm and one leg.  I can still walk and no vocal, breathing loss yet.  I work full time and have a 100+ mile commute round trip; also work 12 hr days w/commute, 4 days/week.  I plan to retire next month due to concerns regarding dr…[Read more]

Thank you all, especially Wendy for your words of wisdom.  As many have experienced, after many not-helpful MD assessments, I was diagnosed in 08/19; onset 02/19, limb onset.  After reading Dagmar’s story and column contributions, I am convinced attitude has the biggest impact on longevity.  And I as every other PALs truly struggle with that.  I t…[Read more]

Bob, while you are not in the recommended age group for the pneumonia vaccine, you do qualify with an underlying medical condition.  Walgreens would not be able to make this determination; however your primary care provider or your local health department can.

I was diagnosed in August of this year, and immediately started acupuncture,  most often twice a week.  Being newly diagnosed i can’t say whether or not disease progression has slowed, but i do notice less frequent and less intense muscle twitching.   Unfortunately insurance does not cover the cost.