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Mike and Cathy, part 3
What gives you hope?
“Well, I guess the only thing that would give me hope is if they come up with a new drug to help me stay right when I’m at. I’m not sure they will ever develop something that will get me all my strength back, but if I could just maintain what I have now, that would be great.” What would you want other people to know about living with ALS?
“ALS is a terrible, nasty disease. It takes away your freedom, it takes away your dignity, and most of all it takes away your independence. It’s just a terrible, terrible disease.” Driving awareness, like what you're doing Larry, is key for understanding this disease and finding a cure.
@ALSA_MNNDSD @twins
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Mike and Cathy, part 2
What do you think is the biggest challenge with ALS?
“Thankfully for me, the first couple of years, wasn’t that big of a challenge. Like you [Larry], you’re still walking around and you still have your independence, but as you get further into it, you lose that independence. I was always a huge outdoorsman, I played sports, hunted, fished, I did all that stuff. As you get further into it, your going to lose your independence, you will be totally dependent on your caregiver, 100% dependent. It’s about where I’m almost at. I live in this chair 18 hours a day. I cannot get up, so for me the biggest challenge is the stress that I put on my wife. I accept that I have this disease, I accepted it a long time ago, but it's hard for me to watch my wife, my caregiver, suffer through this. I have seen the pictures of your family, your sons are young. We have 3 daughters, they’re grown and they have kids. What will happen to me is I’ll most likely miss the weddings of our grandsons, and how their lives progress. We used to have a lake house, but we had to sell that because I couldn't maintain it anymore.” What do you think is the best thing to happen to you since the diagnosis?
“Yeah, that’s a good question. ALS does suck, but I would say my wife and I have become much closer. We’ve always had a good relationship, but we are much closer now that she has to take care of me all the time. She’s okay with it. She doesn’t see it as a burden. You ask anyone with ALS, I think a majority of them would think they are a burden. I know I do, but she doesn’t see it that way, which I’m very grateful for.
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Mike & Cathy Bennett are Twins fans who joined me for game 18 at Target Field, and they were kind enough to share their story with me. I really enjoyed getting to know them and we had a great time at the game - even though the Twins lost. Here’s Mike’s journey with ALS.
Tell me about your diagnosis?
“I was diagnosed 5 years ago. It started with my hands. I’ve always had trouble with my hands being cold anyway. I was trying to clip my fingernails, and I was having a lot of difficulty, but I contributed it to my cold hands. I didn’t really think a lot about it. Then when I tried to use my credit card to pay for gas, I was having a lot of trouble. I could put the card in, but I didn’t have enough grip to pull it out. So, I’m thinking to myself, something is up here. I was a gymnast for many years and I kept myself in great physical condition. I worked out 4 days a week. Now all of a sudden I was having trouble with pushups and pullups and my bench weight was going down. Then my body started twitching everywhere. Then I said, ‘OK, I’m going to the doctor because there is something wrong here.’ I sort of self-diagnosed myself. I went directly to a neurologist because I knew this was bad. I was waiting for the doctor to use those 3 letters, and sure enough it happened. I was diagnosed in May of 2014, but the problems started in the fall of 2013.” @ALSA_MNNDSD @twins
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