Cyndi Zach
Forum Replies Created
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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.
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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 halfway in the sleeves, but I couldn’t get the shirt to move down past my shoulders, and of course, the hoodie was caught over my head and face. All the while, I was standing in a bent over position trying to work my way into it. Even in my feelings of desperation I had to laugh at myself. Needless to say, no more hooded pullovers.
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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 driving. I can still function in my job and enjoy it very much (a great diversion from ALS). Working from home is not an option d/t poor internet connection. Too bad! I fear I will struggle with depression without something active to occupy my time. My advice: if you enjoy your work – stay with it as long as possible.
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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 try very hard to live in the moment, but anything very trivial triggers thoughts of what was and what will be.
I am still very physically active and continue to work full time. My husband is my greatest coach, but also understands my momentary fits of anger and despair. Working in healthcare, one of my biggest frustrations is seeing all of the remarkable accomplishments that are being made in other disease research, yet ALS continues to be stagnant in treatment and no foreseen cure. Yes, there is hope on the horizon; however the disease process continues.
I will keep your advice in mind:Â get as much out of every moment; surround yourself with positive, understanding people; and keep moving.
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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.
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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.