John & Denise's Story - ALS Association WI Chapter Virtual Symposium 2020

See full video transcription below: J: My name is John Fried. I’m here with my wife Denise. I was diagnosed in August of 2014. D: This is August of 2020, six years. Quite a bit of a change. Quite a bit of a journey. J: We never expected to have it this long and we’re so grateful that we have had this time together. D: We are. So, in August of 2014 we were slammed. It was incredible. Everybody who has received that diagnosis and everybody who loves someone who’s received that diagnosis knows exactly what I’m talking about when I say we were slammed. It was not just a matter of John being sick, it was about, we needed to change our whole life. We needed to do things to react to this diagnosis that would take into account that he wasn’t going to be able to walk. We’ve got a two-story house with a basement. We had a big decision to make. We had big changes to make. Luckily, we were in a position, we were close to an ALS Clinic, we were close to the ALS Association. We were able to make good contacts right away and get a good start on putting the things into place that we needed to have happen. J: I was still working at a successful job and I had to stop that. I was engaging in leisure activities like racing cars, I had a race car and several other vehicles. I had to turn over those things and my financial arrangements completely to Denise. I had to give up driving. All of those things created a lot of stress, for both of us. We had to modify the house, so construction added to it. Somehow, we didn’t kill each other! D: Not yet! There were a lot of changes for John, personally of course. For both of us it was the decision on where to live, which was a crazy decision to have to make. We literally got a piece of paper and drew a line down the middle and said reasons to stay in our house and reasons to try to find someplace else to move. It came down to staying in our house. We contacted the ALS Association and found out who did that kind of work. Who had the experience to do that kind of work to make our house a livable place for both of us? For a guy in a wheelchair and for me. So, it was right away, literally within a couple of months of the diagnosis that we had a plan in place, and they started work on changing our house, doing that kind of work that needed to be done so that we would be able to stay in it and we’ve been able to stay for 6 years. That was huge and we’ve always been glad, we’ve always been very glad that we made that decision. If we had decided to change, I’m assuming that we would have been glad about that too. We’re surrounded by good friends, we’ve got a lot of resources close to us and we feel very, very lucky. We know that not everybody that has this diagnosis, or a similar life changing illness has those kinds of options and we know we’re luck when it comes to that. One of the first things that we did after the diagnosis was, umm, we’re not from Wisconsin. We went on a tour to family around the country. I don’t know if that is something other people have to do. You have to somehow let people know so we started catching airplanes and hitting the road to tell the people that we love the situation. So, that was hard, that was difficult, but it was also good. You know there’s that opportunity for everybody to say how much they love each other. We had that sort of a thing happen without it being…people said what they felt right away. It wasn’t a, you get down to the last minute and oh, yes, by the way I love you. It was right away, and we get lots of support from that family even though they’re far away. Luckily, we have developed quite a circle of friends who are very supportive here and we have some children who are still in the neighborhood so that’s good too. One of the big things that we had to do, John already alluded to, was assess to our financial situation. There is no doubt about it that any time a serious illness is diagnosed people have to do that, any serious illness, I’m sure they have to do that. In our situation it wasn’t so much we had to do that because we had to cover the cost of drugs and doctors or things like that because insurance covers a lot of that but remodeling a house insurance doesn’t cover. That’s a big one, assessing that and just diving into whatever resources we had. We look back and we are just amazed that at some point in our 30’s we bought, maybe even in our late 20’s, we bought a disability policy. We bought it ourselves. We had a friend who sold insurance and he needed to sell things to make a living, so we bought a disability policy and that thing kicked in, it’s just amazing. Please see the comments section for a continuation of John & Denise's story.