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Hello
Hi I also am a slow progressor, diagnosed 7 years ago , after 2 years of tests to all other sources of my symptoms. I feel very fortunate as I am now 72 and I’m starting to believe it won’t be the ALS that will be my demise. I am very similar to John walker with energy yo yo’s changes in saliva, talking , facial muscles weakness, constant coughing, occasional swallowing issues with, hand and leg weakness . I am very active still play golf, walk, swim, and up to this year was still skiing, but unfortunately I feel it’s time to retire the boards. I’m feeling less stable and getting concerned about a big fall , which would set me back tremendously. I have been involved in about 7 studies and I believe I have blood and spinal fluid , samples distributed around the world. I have been on Radicava for 5 years, and I believe that this drug and my resistance to slowing down have been the reason I’m still ticking along. The challenge is that friends and family believe I am a fraud… or am a miracle as I am in better shape and more active than 80%of males my age. I know they don’t see the days when I’m in the down cycles as on those days I am home alone going through a period of power resting. I am a retired physiotherapist, so I understand the need to manage your energy , yet , on the good days I tend to overdue it and eventually pay the price…
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