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“I grew up a New York Yankees fan, so I have known about Lou Gehrig most of my life. When I was eight years old, in 1956, my dad took me to Yankee Stadium for the first time. After the game, we walked out to center field where I saw Lou Gehrig's monument. A quote that speaks to me is one I have known most of my life: "I may have been given a bad break, but I have an awful lot to live for." A preliminary nerve study suggested I had ALS in October 2017 and a more extensive nerve study in January 2018 confirmed it. My wife, Kate, and I have been married for 41-plus years but were never fortunate enough to have children. Our nearest and most supportive family is Kate's brother and his wife and family who live in Georgia. Three words that describe me are ‘determined,’ ‘grateful,’ and ‘faithful,’ but ‘determined’ describes me best because, from the day of my preliminary diagnosis, I was determined to keep living my life as normally as possible. Of course, with ALS, what's normal can change daily, so I've had to adapt to that. I used to play golf, target shoot, go for long walks with Kate, and work in our vegetable garden. ALS has limited my ability to do these activities, so I have a lot more time for reading. But I recently got my power wheelchair and it allows me to do things that I didn't have the strength to do anymore. Kate and I can take our Golden Retriever, Links, for ‘walks’ together again. What I most want people to know about ALS is, while ALS changes us physically, we are still the same people. Please do not abandon us, because we need your friendship more than ever now. And we still like to do things.” — Don B., New Mexico
#ALS #MND #ALSAwareness #OurALSCommunity #PortraitsofALS
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“I’m determined and grateful, and one of my favorite roles is ‘Grandma.’ I have a wonderful husband, two wonderful children, four adorable grandkids, and an amazing son-in-law and daughter-in-law. I’ve been married for 32 years. I also have very supportive and loving parents and an amazing circle of friends. I was diagnosed with ALS in May 2013. The disease can affect anyone at any time. We need an effective cure or treatment. A lyric from the song ‘Black as Night’ [by Nahko And Medicine For The People] really speaks to me. It says, ‘I believe in the good things comin’.’ My daily mantra is ‘I am forgiven and free.’ For me, the most important things in life aren’t things. It’s about relationships and connecting with other people. My girlfriend drove me to the mall a few weeks ago. We went shopping and out to lunch. Later, I watched the grandkids at gymnastics, had dinner with the family, and [then spent] a quiet evening with my husband. It was a good day because I spent time with people I love. The innocence and laughter of my grandchildren made me smile.” — Shelly H., California
#ALS #MND #ALSAwareness #OurALSCommunity #PortraitsofALS
