Mark Carr would have told you he's a fortunate guy. Mark would have also told you he had a terrific upbringing and that along with his wife Margaret, he created a wonderful family.
Mark would also tell you that he was a stay-at-home parent to their three kids. That after he graduated from law school, he and his wife decided to start a family and he wanted to be their family's primary caregiver. And that his loving wife supported that choice and their family from day one.
Mark would also tell you that the pattern for diagnosis of ALS first starts with a seemingly innocuous event, nothing major. Just enough to get your attention and say, "That's odd." But soon you go from thinking, "That's odd" to saying, "I need to get this checked out."
ALS is not even on the radar.
A diagnosis of ALS is reached by a process of elimination.
So now you are given multiple prescriptions, physical therapy regimes, MRIs or CT scans are ordered and you're frustrated because nothing is helping. Despite all your effort, you continue to get worse.
Then you're referred to a neurologist and given a thorough examination. The neurologist tells you they have a pretty good idea of what is going on. They may or may not tell you they suspect ALS. They tell you that EMGs and nerve conduction studies are the best tools for making a diagnosis.
And now you are trying as hard as you can to not let your fear overwhelm you. Because now ALS is on the radar. When the EMGs and nerve conduction studies are done, they are unpleasant but not unbearable.
What is unbearable is the wait before the neurologist comes back to discuss the results.
What is unbearable is hearing, "You have ALS."
What is unbearable is having your spouse, who is the strongest person you know, collapse in your arms, sobbing uncontrollably as she hears the diagnosis with you.
What is unbearable is telling your children that you have a disease for which there is no cure.
What is unbearable is that every person diagnosed with ALS has to deal with their own torturous version of the fallout from this horrible disease.
Mark would tell you the "battle" against ALS is really more of a slaughter, as we are currently defenseless against this disease. Every family who has a member afflicted with this horrible disease faces a harsh reality: someone they love is going to die, and there is nothing anyone can do to save them.
But Mark also never gave up hope. It was his hope that he could motivate people to take action. It was his hope to move people to contribute in any way they can to the struggle to defeat ALS. And it was his hope that those contributions would ultimately turn the struggle against ALS into a true battle that banishes this ruthless disease. Mark Carr would tell you all of this; unfortunately Mark and his family lost their battle to ALS on September 30, 2015.
ALS is a brutal disease that robs patients, like Mark, of all muscle and body control. Eventually every patient diagnosed with ALS loses the ability to walk, eat and even breathe. Despite advances in treatment and therapies, ALS is still fatal. There is no cure. Yet.
Your donations to ALSA Wisconsin directly help ALS patients and their families who are fighting this disease in Wisconsin. Donate this Giving Tuesday because families shouldn’t be left behind by a father who loves them above all else.