Jeff Long
Distinguished member
- Joined
- Jul 21, 2011
- Messages
- 254
- Reason
- PALS
- Diagnosis
- 10/2011
- Country
- US
- State
- NC
- City
- Raleigh
I thought anniversaries were supposed to be happy occassions?!?!
I can say it wasn't a bad day, and I tried not to get weighed down by the reminder of the diagnosed but at the same time I couldn't help thinking how blissful I was in my ignorance of all things ALS! On a mutiple guess test, I would have chosen "C"; 'Bulbar' is a light fixture on the Starship Enterprise. And 'bye Pap' was a farewell greeting to a grandparent. And who knew that 'peg' wasn't just a knock-off candy dispenser in the shape of your favorite cartoon character?
One of the things I repeatedly saw during my search for info was that "50% of ALS patients die within 2 years." Well there's a fine pick-me-up!
So at the half way point of that timeline, does that mean I'm half way to being half dead?!? Let's hope not!
My speech is getting more slurred and my breathing more difficult; however, these are minor by degree. I also cramp up more than a Sumo wrestler wearing a fat-suit in the Sahara Desert but realize that too could be worse. By all accounts, I am grateful for a slow, slow progression.
I am sad for those whose progression is faster, more evil and more debilitating and I pray that things would slow for them.
My wife and 4 kids are great about letting me deal with this using morbid humor at times, and I think we are all at peace with the end game. Don't like it and pray it wasn't so, but you can't really pray for or about something and then grumble to God about it too. So we don't!
It's been a busy year with ALS; celebrated 30 years with my bride, saw one child graduate from college, one from high school and walked my oldest daughter down the aisle at her wedding to a great young man. Rode the Harley to Daytona Beach to spend Bike Week with my son (and leaving this week for Biketoberfest with him too!) and enjoyed an amazing trip to Canada with the Mrs. and our good friends. Re-established better relationships with extended family that I'd ignored in the past and met some great, great people who work in the business of treating this nasty disease. I quit worrying about the return rate on long-term bonds (I do still check the expiration date on food before I buy it!) and things I cannot control.
I wish I'd had this perspective before I had ALS, but better late than never! I don't fear dying; I fear leaving what is a very blessed life that is more than I dreamed of. So I will continue to 'die slowly and with great resistance!'
For those who post here regularly to provide insight into life with ALS, I appreciate your wisdom. Many of us who 'lurk' here are better informed because of you.
I can say it wasn't a bad day, and I tried not to get weighed down by the reminder of the diagnosed but at the same time I couldn't help thinking how blissful I was in my ignorance of all things ALS! On a mutiple guess test, I would have chosen "C"; 'Bulbar' is a light fixture on the Starship Enterprise. And 'bye Pap' was a farewell greeting to a grandparent. And who knew that 'peg' wasn't just a knock-off candy dispenser in the shape of your favorite cartoon character?
One of the things I repeatedly saw during my search for info was that "50% of ALS patients die within 2 years." Well there's a fine pick-me-up!
So at the half way point of that timeline, does that mean I'm half way to being half dead?!? Let's hope not!
My speech is getting more slurred and my breathing more difficult; however, these are minor by degree. I also cramp up more than a Sumo wrestler wearing a fat-suit in the Sahara Desert but realize that too could be worse. By all accounts, I am grateful for a slow, slow progression.
I am sad for those whose progression is faster, more evil and more debilitating and I pray that things would slow for them.
My wife and 4 kids are great about letting me deal with this using morbid humor at times, and I think we are all at peace with the end game. Don't like it and pray it wasn't so, but you can't really pray for or about something and then grumble to God about it too. So we don't!
It's been a busy year with ALS; celebrated 30 years with my bride, saw one child graduate from college, one from high school and walked my oldest daughter down the aisle at her wedding to a great young man. Rode the Harley to Daytona Beach to spend Bike Week with my son (and leaving this week for Biketoberfest with him too!) and enjoyed an amazing trip to Canada with the Mrs. and our good friends. Re-established better relationships with extended family that I'd ignored in the past and met some great, great people who work in the business of treating this nasty disease. I quit worrying about the return rate on long-term bonds (I do still check the expiration date on food before I buy it!) and things I cannot control.
I wish I'd had this perspective before I had ALS, but better late than never! I don't fear dying; I fear leaving what is a very blessed life that is more than I dreamed of. So I will continue to 'die slowly and with great resistance!'
For those who post here regularly to provide insight into life with ALS, I appreciate your wisdom. Many of us who 'lurk' here are better informed because of you.