Two years ago the ALS Ice Bucket Challenge swept the world. It was particularly meaningful to me because my brother had been diagnosed with ALS just 3 years earlier. I felt like no one had heard of the disease, let alone, know what it does to the body. Suddenly big name actors and sports figures were taking the challenge and posting it on social media. Finally, I thought, finally, people will understand just how awful ALS is.
This was not necessarily the case. The challenge brought the name of the disease to everyone but do you, you who are reading this right now, do you, know what happens to someone with ALS? This disease is not for the faint of heart.
ALS can manifest itself in multiple ways. For my brother Christopher, it was in his leg. He felt like he could not stretch out his leg and felt like he was stubbing his toe all the time. Eventually his leg would just give way and he would fall without warning. His balance was off. He began to lose grip strength in his hands. Then he could no longer raise his arms. He fell more regularly. He could no longer drive a car; his independence was gone.
And as if all the above wasn't awful enough, it continues. Today Christopher lives with 24 hour / 7 day a week assistance from our mom, and people who were virtually strangers to us not long ago. He has a full-time caregiver, a part-time caregiver, and 3 personal support workers. Really. This is what it takes to help him live day-to-day. He can no longer speak. He cannot walk. If he sneezes, someone has to wipe his nose. If his head drops forward, someone has to lift his head.
Did I mention that the for 90% of people who live with ALS, the brain is left in tact? Christopher has complete brain function. He is completely coherent, yet, as you can imagine, without being able to speak, participating in conversation can be difficult. We use a whiteboard to communicate; spelling each word letter by letter.
The recent finding of gene NEK1 is important. But this is not a cure; nor is it an effective treatment. This is why we are taking the ALS Ice Bucket Challenge #EveryAugustUntilACure because it is important to us to make a difference. It is important to never lose hope and it is important to DO SOMETHING. We hope you feel the same way also.
Check out our 2016 ALS Ice Bucket Challenge Page here!