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The ALS Association

I Promised My Husband I Will Help to Find a Cure

Karen S. Orlando, Florida

Several months later in 2007, Roger was having problems coordinating his right side. He barely could lift his right arm to comb his hair, drink his coffee, or write. In November he was watching a TV documentary on Steven Hawking who had Lou Gehrig’s disease (ALS). I had never heard of this devastating disease. After the program was over, he told me that’s what he had, and he wasn’t going to be here next Christmas, 2008! I told him he was crazy; you haven’t even seen a doctor yet. He went through a series of tests that came out normal; however, the symptoms continued to worsen until we ended up seeing a neurologist in 2008. After listening to Roger’s self-diagnosis, the doctor ran blood work and did a spinal tap, which confirmed Lou Gehrig’s disease and told him he probably had six months to live. We were in total shock. That night Roger attended the Hotel Awards banquet where I was one of the nominees, and everyone said a special prayer for Roger. How does one go about planning for their last months here on this earth? Life went on as usual, but differently. Roger continued working until April, and when I got home from work I spent many hours on the computer looking up information on ALS and ways to make Roger’s life easier. Roger had gone from a cane to a scooter within 3 months, and his mobility was very unsteady. My parents had paid for a family cruise a year in advance, and in June we went and had a wonderful time because we knew this would be his last vacation. When we returned, Roger could not be left alone while I worked, so my parents, sister and brother-in-law co-coordinated a schedule to care for him. We purchased a cemetery plot in the spring, and at the end of June, Roger had the funeral director and music director in one room and the hospice doctor in another, and when he was finished, he told everyone he had his “one way ticket to heaven all set.” (James 1:12). By July his disabilities had increased to the point that he was no longer mobile, and a special wheelchair was ordered so that he would be able to live in it all day; however, he never received it until 6 weeks before he died and was only able to operate it for 3 weeks. Without God’s help, I don’t know how I would have survived (Philippians 4:13). Being a working caregiver and then taking care of Roger’s everyday needs and basic care was extremely stressful, but God gave me excessive strength to endure this tribulation. One month before his death, his estranged children and sister came to visit and heal past wounds. By this time Roger could no longer speak and his requests were more challenging on our part to interpret what he wanted. The day Roger passed away on Sept.17, he held on until his two brothers and a sister drove fifteen hours straight to see him and then I held Roger in my arms and told him that he was the love of my life. Although being selfish, I didn’t want to let him go, but I had to tell him It’s okay you can go home now. That was the hardest thing to say to him. I kissed him, and he had a little smile as he took his last breath. Now I was alone, and all future financial responsibilities were on my shoulders, but I promised my husband I'll help find a cure. I'll fight till the end.That way I'm involved with The ALS Association to make a difference.

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