Despite the complete craziness of this year, the effort to find a cure for ALS continues and needs your help now more than ever!
I am Beth Wright and I was diagnosed with ALS in 2013. This will be the sixth year that my team, The Wright Way, will be participating with the ALS Association of Greater New York to raise the awareness and funds needed to eradicate this disease. Science has been steadily chipping away at the mysteries behind ALS and has made more progress in the last three years than the combined 78-year total since Lou Gehrig was diagnosed in 1939.
As for me, here is a quick update on this past year with ALS. Last year I had had my first ALS clinic visit in which the final verdict was that I had essentially had no change in my condition in the past six months. That by itself is a miracle for an ALS patient and I’m happy to report that nine months later at my next ALS clinic visit (which was over zoom with my neurologist) I had essentially the same report: no significant change in my condition. For 15 months the progression of my ALS had slowed to almost nothing, another miracle that I believe was made possible by my use of the new infusion drug, Radicava. I have had some small health decline as this year has progressed though. Weakness in my neck muscles are now making it difficult for me to hold my head up and I am starting to rely on the use of neck braces. And even though it was determined, last year, that I was in need of 24-hour continuous care (and was beginning to cover that time with new aides), I had to immediately halt my recruitment with the advent of Covid19. Fortunately, Jeff was able to work from home and my primary aide, who was self-isolating at home due to having a husband also at high risk, agreed to work solely for me Monday through Friday. I now feel relatively safe within our little Corvid free bubble. But as you can imagine, it is very difficult for all three of us (Jeff, Fe and me.) I am much more tired and frustrated with how little I am able to get done, to say nothing of the strain it is placing on Jeff and Fe.
However, I do count my blessings (and there are many) in this time of unrest and uncontrolled spread of a virus that would be sure to end my life. I am acutely aware that many are facing unimaginable losses and hardship now. So, I will be very grateful for anyone who is able to join this cause with a financial donation to my team and will also be grateful to those of you who support “The Wright Way” team with your heart, prayers and awareness that a cure for this dreadful disease MUST be found!