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My name is Arlee Titel; I was diagnosed with ALS July of 2018. I was diagnosed with upper and lower motor neuron ALS. I did go down to the hospital when I found out I couldn’t write or anything no more so I went down and was checked out. It didn’t take too long and they diagnosed ALS. Here at two years I’m still fairly active. I can’t use my right hand or arm or shoulder any more but I can pretty much do everything except I do have balance problems. Otherwise everything seems to be OK. I went on Riluzole from Day 1. I’m now on a trial at Froedtert for liquid Radicava. I’ve been on that two months and there hasn’t been any side effects at all so I’m kinda happy about that. And I’m kind of excited about a couple of new things that are coming up. Especially Nurown because they’re in a Stage 3 trial. I did volunteer for it but it was full. That should be done in October or November this year and I can’t wait to see the results of that. That looks pretty promising. Otherwise, not too much has changed. I did fly for 50 years, smaller airplanes and I was a commercial pilot. I had to give that up when I was diagnosed because I couldn’t use my right arm any more. So I switched to working on tractors and doing that type of stuff because we have a lot of property to cut and stuff like that. I don’t know what else to say.
My name is Sharon; I’m Arlee’s wife. I think the easiest way for me to talk about the journey that we’re taking together is how I felt those first few days. Personally I’m someone that has a glass that’s half-full. Unfortunately after the beginnings of the journey to find out what the diagnosis was for sure, I didn’t have a glass. It was broken. Things that seemed like the future…it wasn’t there anymore. The future was tonight or in the morning. I’ve been a self-sufficient and fairly competent individual and immediately you start feeling zero; you’re neither one. I feel OK in a technical competency; I’m a Registered Nurse. I practiced for 50 years, all the time Arlee was flying I guess. The component that I did not have any apparent competency in was the emotional journey. It was just fear of the unknown. I found out that I was reaching for another glass the night that I went to our first ALS Support Group and I started to fill it with water again. This was a place, as I will always think of it, a place for a soft landing. Thinking of how Arlee and I always wanted a soft landing when we landed that plane. The journey itself is like a roller coaster, you’re up and down and it’s a real ride. But I also think that it has a lot of blessings in it. We get such an amount of support that we’ve never needed before, didn’t know it was possible to have it there. The world, it seems right now, looks a little dark with everything that’s going on. But what also I think is happening is there’s so many people that shine a light on us. We don’t probably realize it at the time and probably don’t have an appreciation all the time. What I look toward is there are 5 things, not in an order, there are 5 things that are part of that light. Part of it is the researchers looking to find therapies. Another part is people working to move the research system ahead so that more help can be available. There are a lot of people raising the awareness and money to help defeat the disease. We also have so much support from our ALS community. You learn there’s a whole community out there. And then, as I said not in any order, but there’s all the support we get from family and friends and those we haven’t met yet. The world changed for us when the diagnosis of ALS came through. And now when we look outside, the world has changed for everybody. And even though everybody doesn’t know us, we are aware of what is happening and we’ll all get through it.
Негізгі бет Arlee and Sharon's Story - ALS Association WI Chapter Virtual Symposium 2020
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