As someone who was diagnosed in 2002 with Amyotrophic Lateral Sclerosis (ALS) or (Lou Gehrig’s Disease), I appreciate and thank those who have become aware of this progressive neuro-muscular degenerative disease that affects nerve cells in the brain and the spinal cord and who are willing to participate in the Ice Bucket Challenge for awareness. Last year’s unexpected viral awareness campaign raised more than $100 million in charitable donations for the ALS Association who vowed this year that the campaign would return every August until there is a cure.
Up until 2002, I was a very active man involved in the community, church, and with my family. At the onset of my disease, my left foot began to drag causing me to fall on separate occasions. Since that time and as the disease progressed, with the support of my family, friends, and community, and through my strengthening faith, I have lived each day with a positive outlook working as though nothing is wrong. I have always been one who is content with whatever situation I am in.
As the disease progressed even more, I turned to my computer to research and to write so the world became my community. One thing I’ve learned is working by computer does not require much energy, which due to ALS becomes less and less, yet I have covered more meetings and learned more than ever before. The Internet connects me with more than I ever thought possible. My cable television gives me access to more public meetings than I ever thought possible. I have become the family researcher for anything they can think of and nothing is off limits. I have found joy in helping my family do what they want to do and it is fun. I know my limitations so even though I may not get out as much I still meet with friends and community members at the house from time to time.
With this disease I need assistance with personal things such as grooming, I have difficulty trying to walk, stand, talk, and eat. That is where my caregivers, my wife Cheryl and my brother Vincent, ensure that someone is always nearby. My other family members fill in from time to time to make sure they have help. I have a power chair to allow me mobility and a power lift chair at home because I need assistance getting up and down.
One thing I know when you have family and friends who support and believe in you, it gives you strength to live and push through any negative thoughts that may creep into your mind. This is one reason I recently traveled to North Carolina for our family reunion and why I am so thankful to my friends in California for supporting me in the Ice Bucket Challenge.
But this week, I want to thank some of my local elected officials/friends in the 47th Assembly District who took time out of their busy schedules to stand in a recycled pool of water at San Bernardino City Hall while a cold bucket of water with ice cubes was poured over their heads to raise awareness for ALS:
Assembly Member Cheryl Brown, Supervisor Josie Gonzales, Colton Mayor Richard DeLaRosa, Grand Terrace Mayor Darcy McNaboe, Fontana Mayor Acquanetta Warren, Rialto Mayor Deborah Robertson, and San Bernardino City Clerk Gigi Hanna. San Bernardino Mayor Carey Davis could not get out of a doctor’s appointment in time but I know he sent encouragement and well-wishes. Again, I thank ALL of my friends for their support. #EveryAugustUntilACure
Hardy L. Brown