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| The Crook kids, Washington D.C., summer 1981 (Gary, 2nd from left) |
The last time I felt normal was when we were at General Butler State Park, summer of 2012. After that I was beginning to feel very tired and Karen would make fun of me for falling asleep on the couch after the kids would go to bed. Also, after eating lunch I would get very tired where my head would droop and I needed to take a nap. We chalked it up to working too much since it was the holiday time. Plus, once the New Year started we were busy starting our wholesale line manufacturing and restocking the shelves with products. During that time, the product buckets were starting to get heavy and my back was always hurting from standing all the time.
The next issue was Derby weekend. I was cutting firewood and got overheated and dizzy. Karen made me sit down because she thought I was having a stroke. Soon after my speech was starting to be slurred, especially my “s” and my vision was getting blurry. We joked about turning 44 and needing reading glasses.
Another significant date was June 24th when Jordan threw out the first ball at the Bats game. During the game there was a line drive that came into the stands and I had to duck to get out of the way. In doing so, my arm gave out making my roll out of my chair and onto the steps. I remember thinking at that time that was very odd. June was also the last month I completed a painting. It was getting difficult to control a paintbrush so I started painting abstractly for art therapy.
Next, was July 4th and I started getting very nervous and startled a lot. It was during this time our family doctor started treating me for anxiety and depression, because I was jumpy and was having emotional mood swings-extreme laughing and crying all at the same time. It was getting so bad that customers coming into the store would startle me all the time to the point I would throw my tea or whatever I was holding up into the air (or all over the wall). At this time, I starting choking on beverages and even gagging just brushing my teeth.
Then in August I noticed my walk was feeling weird and my legs were killing me all the time-like I just worked out all day and it was the following day where your muscles are sore from all that lactic acid build up, but I wasn’t working out and it was every day that my legs were feeling like this. I started icing and heating my legs thinking they were sore because my legs were working all the time from twitching. Karen says it was like seeing an alien under my skin-and it felt like I wanted to jump out of my skin, but my muscles would roll and twitch all the time. Also, it was in August that I looked at myself in the bathroom mirror and looking at myself I felt that something was up- I knew something was wrong at that very instance.
By October all hell started breaking loose. I was driving to the store to pick up a cake for Karen’s birthday and I remember it was getting difficult to drive: controlling the pedals and was hard getting in and out of the car, it was even hard getting my wallet out of my back pocket to pay. By the end of the month I stopped working the store (October 26th to be exact) and Karen took away my driving privileges, which I did not see it as a bad thing. I knew I needed to stop driving...
Thanksgiving was spent at my sister's house and one of the nephews asked Karen is Uncle Gary was Ok, so others were seeing a difference. Just two weeks later, I needed help walking and Karen took me to the doctor for a sore back—I had pulled it three times in one week and she was hoping for a cortisone shot, but it was here that everything came to light. We didn’t see our normal doctor that day, but we saw the nurse practitioner. She got the ball rolling and instructed us exactly what to do that night after the first MRI came back negative for a brain tumor. She had even tried to get us an appointment at a neurologist, but couldn’t with it being the week before Christmas. So Karen took me to the ER and said what we were supposed to say to get me to see a neurologist - I was admitted that afternoon. The next day I was diagnosed with ALS - Karen and I were floored! - a day I will not forget, December 20, 2013. That day that changed my life.
Then in August I noticed my walk was feeling weird and my legs were killing me all the time-like I just worked out all day and it was the following day where your muscles are sore from all that lactic acid build up, but I wasn’t working out and it was every day that my legs were feeling like this. I started icing and heating my legs thinking they were sore because my legs were working all the time from twitching. Karen says it was like seeing an alien under my skin-and it felt like I wanted to jump out of my skin, but my muscles would roll and twitch all the time. Also, it was in August that I looked at myself in the bathroom mirror and looking at myself I felt that something was up- I knew something was wrong at that very instance.
By October all hell started breaking loose. I was driving to the store to pick up a cake for Karen’s birthday and I remember it was getting difficult to drive: controlling the pedals and was hard getting in and out of the car, it was even hard getting my wallet out of my back pocket to pay. By the end of the month I stopped working the store (October 26th to be exact) and Karen took away my driving privileges, which I did not see it as a bad thing. I knew I needed to stop driving...
Thanksgiving was spent at my sister's house and one of the nephews asked Karen is Uncle Gary was Ok, so others were seeing a difference. Just two weeks later, I needed help walking and Karen took me to the doctor for a sore back—I had pulled it three times in one week and she was hoping for a cortisone shot, but it was here that everything came to light. We didn’t see our normal doctor that day, but we saw the nurse practitioner. She got the ball rolling and instructed us exactly what to do that night after the first MRI came back negative for a brain tumor. She had even tried to get us an appointment at a neurologist, but couldn’t with it being the week before Christmas. So Karen took me to the ER and said what we were supposed to say to get me to see a neurologist - I was admitted that afternoon. The next day I was diagnosed with ALS - Karen and I were floored! - a day I will not forget, December 20, 2013. That day that changed my life.
You pretty much know the details after this because soon after Karen started the Gary’s Progress page.
Note to carry forward: If you know something is wrong, keep asking and get another opinion - go with your gut. We went through three doctors and no one saw anything until we saw someone that recognized the symptoms for what they were. After the diagnosis Karen talked to that NP and her first thought was ALS after just seeing me walk down the hall and 5 minutes in the exam room. Keep going until you get an answer.
~ Gary Crook | artist, Louisville, Kentucky 2014
Note to carry forward: If you know something is wrong, keep asking and get another opinion - go with your gut. We went through three doctors and no one saw anything until we saw someone that recognized the symptoms for what they were. After the diagnosis Karen talked to that NP and her first thought was ALS after just seeing me walk down the hall and 5 minutes in the exam room. Keep going until you get an answer.
~ Gary Crook | artist, Louisville, Kentucky 2014
> If you’d like to donate directly to Gary Crook’s ALS Fund, please go to: http://www.gofundme.com/60j52k
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