The ALS Association

The Hardest Thing Is to Receive Help from Others

Tony C. Greentown, Indiana

My name is Tony Critchley, and I have ALS. It all started on a cool day in October 2012. While enjoying one of my favorite past times, fishing, I suddenly got a backlash in my fishing reel, and when I went to pull my reel, my fingers didn’t want to grasp the line. It was as if my fingers were frozen, and I could barely move them. After about five minutes of working with the line, I finally got the backlash out. Shortly after, I tried to zip my coat up and had a hard time zipping it. I was concerned and didn’t really understand what was happening, so I loaded my boat and went home. By the time I got home, my hands warmed up, and my fingers were fine. Then, a couple of days later, I noticed my muscles twitching. This concerned me, so I called my family doctor. I went in for a visit, and my doc said I had muscle fasciculation and then referred me to a neurologist. A couple of weeks later, I had an appointment with the neurologist. He ran a number of tests on my nerves as well as a MRI of my neck. On November 26, 2012 the neurologist ran some more tests and said my MRI was okay. After reviewing the tests, he told my wife, Barb, and I, “I believe you have ALS, and I want a second opinion”. What a SHOCKER! I had heard of ALS, but I didn’t know what it actually was. On December 14, 2012, I had an appointment at the IU Neuroscience Center to get a second opinion, and they confirmed with “You do have ALS.” This is when you think your life is about to end, but not me! This is the beginning of a new journey! I can’t say that I didn’t cry when the doctor told us the news, but I felt at peace in my heart. The Scripture Philippians 4: 13, for I can do everything through Christ, who gives me strength, came to my mind. I am a Christian, and I know God has big plans for me. So, I am putting my trust in Him to carry me through this disease. I never even asked Him, “Why Me?” So, the next several weeks Barb and I began telling family, friends, and co-workers the news. I found that it was a lot harder sharing my diagnosis with others than it was hearing those words, “You have ALS.” Everyone had the same reaction… crying! I explained the disease to them so they understood there was a two to five year life expectancy. The crying continued! In January 2013, I had to tell my employer, GMCH, that I needed to go on disability. After working there for 20 plus years, it was a hard pill to swallow. I’ve always been a worker, loved helping people, and now this chapter of my life is coming to an end. The people of GMCH have been so supportive and loving. To date, they have had three ALS fundraisers for me as well as another gentleman who was diagnosed with ALS in February 2013. I try to visit with everyone at GMCH at least two or three times a month, because I believe surrounding yourself with loved ones takes your mind off the disease. Besides, I enjoy their compliments, “you sure look good!” Crossroads Community Church of Kokomo is my other support group. They are very supportive of mine and my wife’s needs. The prayers are endless! ALS has even brought my wife and I closer than ever. My 2013 Walk to Defeat ALS Team had 83 walkers, and I believe 50% came from Crossroads Church. It brings great joy to have so many people who love and support you when you are going through a disease like ALS. The hardest thing for me is to receive help from others, because I was always the giver… but I am working on that. It is very hard to give up my independence, even if I struggle to do something. My ALS is basically in my arms and hands. It is hard for me to raise my arms up from my shoulders to touch my head unless I use my other hand to assist the arm. My muscles twitch 24/7 throughout my body, but my legs are still strong. So when somebody asks me how I’m doing, I tell them “I’m still kicking but not punching!” The muscles in my left hand have deteriorated and the fingers have curled under a little. With this disease, I have had to make a lot of adjustments. I have had to change my hairstyle, switch to glasses, and adapt to new ways of dressing. I don’t get angry about the things I can’t do, I’m just thankful for the things I still CAN do! I am still independent, but I am doing things at a slower pace. I have met some wonderful people the past 15 months because of this disease. Earlier I mentioned, “Why Me?” I met a pastor in Ohio last summer, who knew me less than 15 minutes. He told me that my smile and positive attitude would carry me through this disease along with the Lord. He proceeded to tell me “Why Not Me?” He knew that God was using me to help further his kingdom, because of my faith and attitude! I may not be able to help physically but I can still use my voice to help inspire others. The IU doctors, nurses, and therapist are amazing people, too! Every three months, at the ALS Clinic, you can feel the love and passion these people have for their jobs as well as the disappointments for not having a cure. You can feel that they are not giving up on hope! The ALS Association has a wonderful staff. They are helping patients have better care at home or whatever they need. They are fighting to create more awareness of ALS in the community and around the world. The ALS Loan Closet is a store that loans patients with equipment such as wheelchairs, utensils for eating, bathing needs and whatever else we (PALS) may need. I am just Thankful to God for placing these people in my life to help me so I don’t have to worry about all of these things! My mom always told me to stay positive, because I could accomplish anything! I believe one day there will be a cure for ALS, but we must remember, that it is God’s timing and not ours! Trust in Him!

 
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