Living With ALS
This is my first blog post. I have been wanting to do a blog for a very long time and for some reason I procrastinated. I guess I feel that I would be writing and no one would be reading. But maybe that's not the point in that I just want to express myself in a way that may resonate with a few or maybe I'll just blow off some steam.
In this first post I want to get something out the way and it's related to my health. I was diagnosed with ALS or Lou Gehrig's disease in 2009. Since this diagnosis many people ask about how I'm doing. Maybe this blog will be a place that I can give some updates periodically, however; I can assure you that I will not talk about it much. In fact this may be my last post ever about it, but I think it's worthwhile in saying something about it at least one time.
As you can imagine with a diagnosis like this it's a horrible feeling. As of today July 4, 2012, it is very difficult to walk (I use a walker), it is getting harder to talk, and my upper body strength is essentially gone. I use dictation software for writing however my hands still do work a little, but I don't type 90 words per minute anymore.
The physical toll that this disease takes is devastating. I cannot ride a bike, or throw a softball, frisbee or anything with my kids. I can't take them fishing or golfing or anything that is physical. With this illness it is very hard to travel. It's embarrassing when I go to a restaurant and I have to have help eating because my upper body strength is weak. The total dependency on others especially those closest to me is the hardest part to take with the disease.
There is a financial toll. I have to invest significantly in assistance devices at home to help me. I have a lift chair for our stairs. I have rebuilt our stairs into the house so that the steps are smaller. I am in the process of buying a new handicap van and I will have to be doing more as time goes on in the house. Insurance does not pay for these things and our insurance continues to rise and there is less coverage for many things that are needed.
I'm not here to write and have a pity party. In general I want everyone to know how extremely difficult it is to deal with the illness. It is certainly not fun.
The good news is I have a wonderful job and a very understanding boss Chris McCarty with Cheap Cycle Parts. I love my job and my team and they have been very supportive of me and all of my professional and personal endeavors. I go to work every day and I'm very demanding professionally of those around me. I don't expect to be treated any differently than anyone else. I am very lucky and blessed that I have a good job so that I can provide for my family and have the ability to manage my illness.
I strive with the will to live. I am living with the disease and my plan is to be around for a very long time. I pray every night for a miracle and pray for a cure. Every wish I make is the same. I know now that there is more progress in ALS research than ever before. All we need now to solve this is funding, it can be cured and it will be cured.
To all those that want to help, all I asked for are prayers, love and friendship. On occasion I may ask for a little help pushing in my chair, straightening my tie or handing me something.
I have many dreams just like everyone. One in particular is to buy an RV that is equipped with everything I need to travel across the country with the family. This is something I really want to do and I'm trying to figure out how I can do that.
This blog will not be about ALS. I hope you find the things I write about in issues of public policy, public safety, science and business to be interesting. These are the things that interest me most other than my wonderful wife and children who support me every day.
As a footnote, If you want to donate to the ALS Association you can go to the site and donate anything that you can.
