My ALS Story

My ALS Story: William E. Croy, Jr.
Powell, Ohio


I am a: Husband, Father, Grandfather, Son, Brother, Uncle, Pastor, Friend, and Coach.

My life changed on August 13, 2010, when I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. It actually had begun to change at least 14 months earlier, we just didn't realize it yet then. The first symptom that caused me to think something was going on happened while we were on an adult mission trip with members and friends of Maple Grove United Methodist Church in June, 2009. We were on the Lakota reservation near Ft. Thompson, South Dakota. It was my third mission trip to that site and I was ready to do my part to improve the lives of these wonderful people. The only problem was my body, especially my legs, kept urging me to rest much sooner than I ever had to on past such trips. At first I attributed it to being another year older, although deep inside I must admit I suspicioned it was something more.

Then came a family vacation to Myrtle Beach and Oak Island near Southport, North Carolina in July, 2009. We would start to walk the beach and I would have to stop, again much sooner than on past vacations. I began to be concerned although still rationalized another year of age or perhaps some developing heart issues. It wasn't until I was seeing a physical therapist in the early fall for a nagging shoulder injury that something more serious was suspicioned. She asked if I was on a statin and hearing from me in the affirmative suggested that I go see my family doctor immediately for the lack of muscle tone in my neck suggested I might be having a reaction to the drug.

After being off the statin for a few months and the symptoms continuing to worsen and the addition of some others, the doctor and I agreed that more testing should be pursued. The "probably ALS" diagnosis followed an unbelievable array of tests including trips to the Cleveland Clinic where the diagnosis was finally made.

Some of the symptoms that surfaced during the 14 months (and we now believe perhaps several months prior) included a feeling of exhaustion in my legs after a minimum amount of exertion, a raspiness in my voice (at first only detected by me), it becoming a strain to lead a whole worship service resulting in my remaining seated for most of the service and no longer singing with the congregation. I early on suspicioned what it was but my medical doctor and others remained hopeful that it was something else - a reaction to being on a statin, lyme's disease, some chemical imbalance caused by .... anything but ALS. I had read the Lou Gehrig story as a young boy and remembered commenting to myself after reading it: "boy there's a disease I hope I never get!"

ALS is an ugly disease! Once we knew what we were dealing with my wife, Dorothy, and I decided that I would retire: 1) because we knew I could no longer do the work of a pastor, and 2) because we wanted to spend as much time together, with family, and traveling as possible with the limited projected life expectancy. Thanks to the wisdom and alertness of representatives of the United Methodist Church I was advised to go on long-term incapacity leave as a better option for my care. I knew that I was facing getting progressively worse and that would include possibly losing the ability to walk, talk or even breathe. What I didn't know was that the normal life expectancy was two to five years following diagnosis. That news hit us like a ton of bricks! Of course, on this journey we've met people who've lived much longer than that and some who were diagnosed after me who are already gone. It just doesn't work the same way in every person which is part of the frustration of dealing with it and receiving treatment.

Besides causing me to give up a very satisfying career as a pastor, this disease has robbed me of the active life I led prior to its working its mean way through my body. Just to give a glimpse of what that life was like:  I was a high school and college athlete participating on the Ottawa-Glandorf basketball, football and track teams; and the Ohio Northern University football and track teams. I was a United Methodist Church pastor serving churches in Miamisburg, Urbana, Lima, Columbus and Worthington for 38 years. Much of my ministry included being an active youth minister. I helped found and coached age-group track and field teams in Miamisburg, Urbana and Lima and I helped develop two day-care centers in Urbana and Lima. I was the first chairperson of the Downtown Lima, Inc., a revitalization effort; served as a trustee at Ohio Northern University for 19 years; taught a youth ministry course at ONU; and was a strong advocate for the needs of the poor and disadvantaged wherever I served. I loved to hike and work out! I was an active and enthusiastic guy!

But most importantly, I was a husband, father and grandfather with lots of energy - the one who often led the way on hikes, family vacations, boating, and working out. How I am able to fulfill those roles is pretty messed up today as a result of my fight with ALS. We still go a lot, but I do a lot more observing from my wheelchair. It's hard for me to eat very much and to even carry on a conversation. That is especially hard not to be able to do with your spouse, children and grandchildren. I have spent all day, every day in a power wheelchair for the last year and a half. I can still transfer to a chair, toilet or shower but every movement is extremely exhaustive. Let me say it another way: it takes real effort every morning to get up, shower, get dressed and eat breakfast! It's hard and exhausting! I sleep with the aid of a bipap machine and as of a few months ago am using it as well several hours a day depending on what else I try to do. I also spend a great deal of time on my iPad blogging about ALS and its effects on my life as well as posting sermons, reading, catching up with people on Facebook and by email, and yes, I play some games.

A year and a half ago I heard of a fairly new procedure providing some help for persons with deteriorating diaphragms called a Diaphragm Pacing System. I went to the Cleveland Clinic in June, 2012 to be tested as a candidate for the procedure. Even though the tests did not suggest I was a good candidate, the doctor felt that it might be worth a try since I looked so good. In surgery it was determined that my diaphragm was not working good enough to benefit from leaving the system in. While disappointed I learned much from Dr. Onders about how I am able to still breath despite the lack of a functioning diaphragm. He explained that my neck, back, stomach and thoracic muscles were compensating. This also helped explain why I was in so much back and neck pain and was the beginning of my increased use of the bipap during the day.

I am very thankful for the power wheelchair, our handicapped accessible van, new handicapped accessible home, the iPad, and the new eye-gaze communication device that I will use when I can no longer type with my hands. Most of all though, I am appreciative of all my wife, Dorothy, does for me to keep me sane, fed, clothed, showered, and functioning. I am also thankful for my son, Jeremy, daughter, Megan, daughter-in-law, Meladie, grandchildren (Evan, Corinne, and William) and our brothers and sisters and their spouses, nieces and nephews, cousins, church members and friends who support us emotionally with their encouragement and offers of help. Many more people are effected by the progression and lack of understanding of this disease than just those of us who must cope with and fight the physical realities of it! The evidence is in the multitude of people who send us encouraging notes, sign letters of support to our politicians, make donations for ALS Walks, organize high school baseball benefits and other kinds of benefits to help spread the message of what can be done and needs to be done.

I hope for a better understanding of the causes for ALS! I am hopeful that cures will be found that will at least help PALS (People with ALS) live a better and longer life! Over 370 of our friends and family have sent letters with us to present to Senators Brown and Portman. Many of those same people and many others have helped us raise over $67,000 in the last two Walks to Defeat ALS! But with all that, we know it will take a lot more to successfully change the effects of this deadly disease.

I believe we can find an effective treatment and cure but we need your help to continue the progress we’ve made over the past few years at CDC and DOD.  Please support our 2013 public policy priorities:

Appropriate $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention.
Appropriate $10 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD).
Cosponsor the MODDERN Cures Act


Thank you for your time and for listening to my ALS story.


Sincerely,

William (Bill) E. Croy, Jr.

William (Bill) E. Croy, Jr.