PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness. Read his full interview below.
What was the first thing that went through your mind when you were diagnosed with ALS?
After the initial shock came a phase of denial and anger. Like many people with ALS, I had seen a number of doctors over a period of two years and had received several diagnoses ranging from a pinched nerve to benign fasciculation syndrome. Feeding the disbelief was my anger at the neurologist who, after performing a minimum of tests, told me I was dying and to come back when I needed a wheelchair. Since he was a jerk he couldn’t be right, right? Soon my wife and I felt a profound loss for our 4 children and for all the milestones we wouldn’t share like graduations, weddings and grandchildren.
How did your diagnosis change your everyday life?
My diagnosis brought clarity and focus as the realization set in that wallowing in fear gave ALS a victory it didn’t deserve. I am living, not dying, and we live as normally as we can while being proactive about planning for my future needs.
Looks like you’re very active on PatientsLikeMe – what tools do you use the most, and what have you learned about your condition?
I really love tracking my condition and I use the charts to help keep friends and family updated on how I’m doing. The most important thing I have learned is how different and intensely personal everyone’s journey is. Just because something works for me doesn’t mean it is right for others. The forum allows us to share experiences and build supportive relationships.
We see your daughter just got married last autumn – congrats! How did technology help you participate in the wedding?
The wedding of our oldest daughter was one of milestones I didn’t expect to witness. It was a beautiful day. The most obvious technology I used was my standing powerchair that allowed me to “walk” my daughter down the aisle and dance with her. Equally important, though, were my VPAP, Diaphragm Pacing System and PEG feeding tube, all combining to give me the strength to participate, not simply observe. We’ve also recently been blessed with our first grandchild, a girl, whom I talk to with my new eyegaze communication device.
If you could share one thing with the greater ALS community, what would it be?
Don’t let fear for the future ruin the beauty and gift of today.