I thought I would share what I am living with. ALS is a tough disease that kills everyone that gets it, and has an amazing array of different symptoms.
For me it attacked my legs first and removed strength in them so I could not run any longer, nor walk up mountains, or even walk up stairs easily. It has now happened to my arms and hands. This means I need a lot of help to do things like cut my toenails, or carry laundry or empty garbage or open bottles. And if I go up the stairs a few times I will be so short of energy. I just sit and watch TV. I also get something I call constriction pain which is when a muscle constricts unexpectedly. Some doesn’t hurt and some hurts a lot. I also get a lot of random pain lately but it is slowly stopping.
The worst part is the doctors cannot tell you much. Other than you will likely end up in a wheelchair, and die sometime after that.
You have to start thinking differently. I cannot rescue people drowning in a river - which I have done before. I stopped a robbery once, but cannot do that any longer. I cannot hike or climb mountains any longer.
I forgot to mention that when you have ALS less alcohol impacts you more. So you cannot drink like you used too.
I have started to learn that ALS impacts the brain too. I have trouble focusing on things for any amount of time. I used to be able to read a book while flying across the Atlantic. Now I can read maybe 10 minutes and have to do something else. Which is why I am not doing technical articles any longer.
However, even with all that I cannot do, and the pain, I still can walk, talk, eat on my own and even drive so it is not all bad.
If you would like to donate to ALS research I would most appreciate it - find it here.
14 thoughts on “Living with ALS”
Micheal I’m so sorry. I wish you all the best to overcome this disease.
We do not meet, but I sad as if my brother. Greetings from Turkey.
Thanks very much, and I love your country, I hope to visit again.
I had no idea you have ALS. One of my colleague’s father had it. We walked in their annual fundraiser. I will add you to my daily prayers and will ask that the symptoms stay mild as long as possible. I believe in the power of prayer and will use it to lift you up.
Best wishes for extended relief,
Thanks Steve, I appreciate your thoughts, prayers and comments. Thank You!
Really sorry to hear this! I have been a follower of you for a long time. And this will not stop now! I hope you get into vExpert so you can have some fun 2021 in your home lab. If they put the same amount of effort (money) in ALS as they do to defete Covid, they will have good medicine soon. My thoughts are with you and your family! //Roger
Thanks Roger I appreciate your comments! Thank you,
I’m so fortunate to have met you in person, and I quite enjoyed our hallway conversation at VeeamOn Chicago and at VMworld. I so cherish those memories. I wanted to take a moment to let you know just how much it meant to me that you spent time with me at those events, nerding out about tech topics for sooo long, and I loved every minute of hearing your wisdom. I’m so grateful for that, and for the huge volume of spectacular newsletters that I’ve so enjoyed ever since. My heart is with you and your loved ones, thinking about you a lot lately. Let me know if there is something I can do. Hopefully making peace with the restrictions gives you brighter days, letting go of the stuff that doesn’t really matter, focusing on you. I really appreciate you having the courage and candor to be so open about this, and I’m sure many others are too.
Thanks very much Paul. I enjoyed very much chatting with you too. Thanks for the nice thoughts.
I miss ya Michael… I’m feeling anger though. Why do things like this happen to such good people like you? I’m really questioning “Why???” Thanks for sharing so openly, which is the Michael I know! You mention being advised likely a wheelchair at some point, then death. Coincidentally, I watched a movie called Breathe (on Netflix) over the weekend, which is a real life story about a man falling ill who was told similar by his doctor, but there were no wheelchairs for him at the time and they invented one - and he lived for another 35 years. I can’t imagine what you’re going through with Mrs. but I imagine perhaps a story like that may provide some inspiration. Thank you for always being kind and making time for me (and others) when we worked together here. Best wishes and my heart is sending good vibes to overcome any physical and emotional pain that comes your way.
Hi Tommy, Thanks for the good words and thoughts! Much appreciated.
Michael, I deeply appreciate what you have done for the entire community and I look at you as someone who has always GIVEN without ASKING. While we can’t experience your pain, we stand by your side and pray for you and wish that things change for better.
Thanks Sunny, I really appreciate your kind words!
So sorry to read this news… I sincerely hope you’ll always have the strength, support and love you’ll need to fight this hard battle. I’ll continue donating to research, one day - hopefully sooner rather than later - we’ll defeat this nasty foe! 💪
Thanks Danilo, I appreciate your kind words, and I will try and fight as hard, and as long as I can. And thank you for donating to research as it is really needed.