Interview by Myles Robinson
“Living with ALS”- Senior Class Project
1.What was it like the day you found out you had ALS: how did you react and feel?
It was a complete shock; I had no idea that the weakness in my left hand could be anything so serious. I was in disbelief that there was nothing that could be done.
2. How did this disease change you, and how did it impact what you want to accomplish with your life?
I have become significantly more patient with everything, and also anxious to do everything right away. If I plan on doing several things during the day, I am happy to get one thing done, whereas before I wouldn’t relax until I get them all done. I used to work 60 hours a week, and now my whole life is devoted to having fun. I have waited until now to answer these questions because it is like work. I want to have a wife and have a new family. I want to make legendary accomplishments that will inspire people in my situation to find new things. The people that are experimenting on how to make their life better the better my life will become. Right now, if certain sources are correct only 2% of people with ALS choose to have a tracheotomy if that number increased the plight of all ALS patients would improve based purely on the number of living ALS patients.
3. What adversities do you face daily with ALS? It takes me a long time, about 3 hours when I am in a hurry, to get out of bed and get ready each day. Having to rely on someone else to do everything for you is a total pain in the ass.
4. How, or is it, painful both physically and emotionally?
There is very little physical pain, almost always there is some level of discomfort that you get used to…I get pain in my throat from time to time because of my trach. The area around my stomach tube is sensitive because of all the nerves that surround it. Emotionally, it was most difficult to gradually give things up, like running and playing golf. But I never got to upset because I found new things to do instead like fishing.
5. What has been the most difficult part of living with ALS thus far?
The most difficult thing is finding good help, people I can rely on and trust.
6. What is the most rewarding part of the day?
There are small rewards everyday, like trying something new and seeing it work out, also watching people around me enjoy themselves.
7. What is the most difficult/frustrating part of the day?
Relying on other people to do everything for me, or waiting is still very hard for me even thought I have gotten a lot more patient.
8. Do you see a difference in how people react to you?
Initially when people see me there reaction is different, after they have been around me even for a few minutes that reaction goes away. And they seem to see and treat me as they always have. Some people can’t understand what I am saying, no matter how hard we both try, and those people certainly treat me differently because we can’t talk like we used to
9.When you watch someone doing an activity do you wish you could participate as well?
occasionally…when I see people doing that I will never be able to do and I would like to do, like playing video games, it would fun be able to play games that have come out in the last few years, I know I would be good at it if I could play. Also going places, that either I can’t go or would be incredibly difficult. I would love to see mom on a trip somewhere that we have never been, but we have always wanted to get to. I don’t find it difficult to resolve that fact that some things are undoable. Or impractical to attempt. I also think it would be fun to do the Bocca Bop and I would win.
10. What are the little things that nobody thinks of but you find to be of great importance?
There are personal things that you do for yourself that are natural and easy that sometimes a few caregivers find doing these things difficult, or while doing them it causes me discomfort.
11. If you could teach the world one thing about living with ALS, what would it be?
ALS is not a fatal disease.
12. How id you acquire your daily needs such as food and water?
I have a tube in my stomach called a g-tube. And I get all my food water and medicine through the tube.
13. What advice would you offer people newly diagnosed with ALS?
Never stop trying to do the things that you enjoy doing. Figure out a way to keep doing them. If you can’t find a way then find something else that you enjoy doing. Don’t let your physical changes ruin your life.