halfin
Senior member
- Joined
- Jun 29, 2009
- Messages
- 540
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- CA
- City
- Santa Barbara
. . I have been not too active on the forum lately. It has become hard for me to type more than a sentence or two. I mostly find myself offering condolences when people have passed, which is always sad. But at one time I was pretty active here so I thought I'd post an update. Also I'm trying Dasher again for the first time in a while so this is a test of writing longer messages.
Basically my progression has been average. Diagnosed in August 2009, got my wheelchair in January 2010, although I was walking a little through most of 2010. My speech declined pretty steadily until I finally gave it up this past summer. I had to stop typing a few months earlier. Luckily I got my Dynavox in December of 2010, so I had plenty of time to practice before I needed it. If I had one piece of advice for people who intend to live with this disease, it would be to look ahead and prepare early.
I have never looked on my ALS as a big tragedy. To me, it is a challenge. I've done my best to ignore it. I kept working at my software job until February, 2010, when my speech and typing got too bad. That led to an extraordinary strokeof good luck, when my employerwasacquired by a much larger company in mid2010, and we were allowed to sign up for full benefits. I was able to get a great long term care insurance plan even though I knew I would be needing it soon. As a result we get 4 hours of in-home nursing almost every day, and our nurse is a real gem.
So now I'm mostly paralyzed. I can move my arms an inch or two, and my neck works okay, but that's about it. I've still been able to swallow some ice cream, but I'm giving it up because of aspiration concerns.
A year ago I had a tracheostomy -- way too early. I still use the vent only at night. My breathing is fine when I'm awake, even lying on my back. And the trache has been nothing but trouble, coughing, suction, and scar tissue. At least I was relatively strong for the surgery and hospital stay, and it's a relief not to struggle with the blpap mask.
I spend my days browsing the web, reading ebooks, listening to music, watching TV and movies -- pretty much what I used to do when relaxing at home. Of course, this idyllic existence is only possible because of the enormous sacrifices of my wfe Fran, who is far less sanguine about our circumstances. I wish I could do more to comfort her. And then there is our son, who has put his life on hold for me. I am under no illusions about how lucky I am in the midst of catastrophe.I have always been lucky; and aside from a small misfortune that hardly bears mention, I continue to be.
Basically my progression has been average. Diagnosed in August 2009, got my wheelchair in January 2010, although I was walking a little through most of 2010. My speech declined pretty steadily until I finally gave it up this past summer. I had to stop typing a few months earlier. Luckily I got my Dynavox in December of 2010, so I had plenty of time to practice before I needed it. If I had one piece of advice for people who intend to live with this disease, it would be to look ahead and prepare early.
I have never looked on my ALS as a big tragedy. To me, it is a challenge. I've done my best to ignore it. I kept working at my software job until February, 2010, when my speech and typing got too bad. That led to an extraordinary strokeof good luck, when my employerwasacquired by a much larger company in mid2010, and we were allowed to sign up for full benefits. I was able to get a great long term care insurance plan even though I knew I would be needing it soon. As a result we get 4 hours of in-home nursing almost every day, and our nurse is a real gem.
So now I'm mostly paralyzed. I can move my arms an inch or two, and my neck works okay, but that's about it. I've still been able to swallow some ice cream, but I'm giving it up because of aspiration concerns.
A year ago I had a tracheostomy -- way too early. I still use the vent only at night. My breathing is fine when I'm awake, even lying on my back. And the trache has been nothing but trouble, coughing, suction, and scar tissue. At least I was relatively strong for the surgery and hospital stay, and it's a relief not to struggle with the blpap mask.
I spend my days browsing the web, reading ebooks, listening to music, watching TV and movies -- pretty much what I used to do when relaxing at home. Of course, this idyllic existence is only possible because of the enormous sacrifices of my wfe Fran, who is far less sanguine about our circumstances. I wish I could do more to comfort her. And then there is our son, who has put his life on hold for me. I am under no illusions about how lucky I am in the midst of catastrophe.I have always been lucky; and aside from a small misfortune that hardly bears mention, I continue to be.
