By Paul Holler, Allentown, PA
My journey with ALS has been relatively brief. What started as calf pain in March of 2016 ended with a suspicion of and confirmation of ALS in August-September. A little over a year ago I was running 3–5 miles several times a week. Now I struggle to walk to the bathroom with a cane and a walker. I sit on a chair in the morning and at night to brush my teeth. I have difficulty leaning over a sink when standing. This is my life.
This isn’t how it was supposed to happen. I lived a healthy life, gave back to the community regularly and was planning for retirement. That all came crashing down. After ALS entered our lives, I wouldn’t be going on any more mission trips to rebuild after hurricanes. I wouldn’t be making breakfast for the homeless and impoverished on Sundays in Allentown. I will never run that ½ marathon that I planned to run that summer. I wouldn’t be hiking or biking or simply enjoying life with my wife, my 4 kids, 2 grandkids and parents the way I had always done. I may not see my daughter graduate from her Ph.D. medical physics programs or my 3 younger children get married.
I remember when the first potential diagnosis was raised. Though I had heard of the Ice bucket challenge and knew of the Lou Gehrig story I wasn’t prepare to see the statistics and know that they could apply to me.
I’ve cut my hours back at work from 60hrs/week to 10–15. I’m fortunate to have a boss that has given me that space to do what I need without jeopardizing my income. I spend a lot of time planning for the future. A friend at church recently told me about voice banking after she saw a story about Steve Gleason. Fortunately my speech has been unaffected and I’ve started working on that. I have completed recording 1,600 sentences and have received “my voice.”
But all of that may be wasted if I can’t afford a speech generating device. I’d like to be able to talk with my wife, my kids, my grandkids (those born and those yet to be conceived) in my own voice.
I plan to go on short term disability in July and then long term disability after that. I’m fortunate enough to work for a company that has a good healthcare plan and disability. I don’t know what I would do or where I would turn if I had no income or insurance for 5 months.
While we’ve been saving for retirement my entire career, Nancy and I had started official retirement planning last spring. We had a plan and were told that we were solidly OK. Now I don’t know if we’ll have enough to cover the costs to come, particularly for home health care. I can only hope that there’s enough left for Nancy when I’m gone. I can’t imagine what someone who has been less fortunate would do.
That is why we will do what we’ve always done, and that is give back to others. Awareness of ALS continues to grow and the community continues to rally. My wife and I are members of the Mug Club at The Allentown Brew Works. We’ve been going there regularly for years and despite mobility challenges, ALS has not stopped that. During their 10th Anniversary celebration in June they held a charity event specifically for The ALS Association and raised $288 . We had over 20 friends and family join us. My family hopes to participate in the Lehigh Valley Walk to Defeat ALS, in Allentown on Saturday October 7th.
This past May, Nancy and I visited Washington, DC to share our story with elected leaders, including our Congressman, Charlie Dent. Congressman Dent lost his uncle to ALS and he understood our issues well and we are grateful that he and others are listening to ALS families.
People will only listen if you share your story. In our experience, people want to help. Sometimes you just need to show them how. Please find your own way to get involved. Maybe we’ll see you at the Walk to Defeat ALS, or at Advocacy Day, or at a local fundraiser. Whatever you choose to do, it will make a difference for the next person who said “This wasn’t supposed to happen.”