- Joined
- May 9, 2016
- Messages
- 1,529
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
I just wanted to say that I am grateful. At the eight month mark on February 28th, Brian's "only" impairments are weakening in his left hand and left foot/leg. He walks, talks, eats, drives. He goes to swimming and adaptive yoga. His blood 02 is 98% and his capacity is normal. He still climbs stairs, though he walks with a cane and leg braces, and says there has been some weakening on his right side too (just very marginal compared to the left).
I DO check in all the time on the driving. I am NOT saying we have not had loses. The man who made me breakfast every morning, did my wash (he is retired) and ran around like a squirrel all day on projects is no more. The energy, strength, and coordination is not there for all of that. He still does things around the house but they are ever so slowly less all the time.
I am 100% aware this can all change on a dime, but even if it did we would be very lucky next to so many people who are facing the beast. What grabbed me was a thread I was on here recently. So many people who were diagnosed in early to mid 2016, like us were facing faster progression, more issues, more loses.
I hurt a lot sometimes, I won't lie. I probably spend too much time dreading the future and not enough appreciating the present. I get caught up, still in those 15 or so years we have in all reasonable probability lost. I look at the boundless optimism of people like the author of "Until I Say Goodbye" and no, that is not me...
I just wanted to say I feel for everyone who is facing a faster progression, and I want to be careful not to burden those who are with a bunch of complaining without at least acknowledging that in ALS world, if not the "regular" world, we are very lucky so far with this, and we know it.
I DO check in all the time on the driving. I am NOT saying we have not had loses. The man who made me breakfast every morning, did my wash (he is retired) and ran around like a squirrel all day on projects is no more. The energy, strength, and coordination is not there for all of that. He still does things around the house but they are ever so slowly less all the time.
I am 100% aware this can all change on a dime, but even if it did we would be very lucky next to so many people who are facing the beast. What grabbed me was a thread I was on here recently. So many people who were diagnosed in early to mid 2016, like us were facing faster progression, more issues, more loses.
I hurt a lot sometimes, I won't lie. I probably spend too much time dreading the future and not enough appreciating the present. I get caught up, still in those 15 or so years we have in all reasonable probability lost. I look at the boundless optimism of people like the author of "Until I Say Goodbye" and no, that is not me...
I just wanted to say I feel for everyone who is facing a faster progression, and I want to be careful not to burden those who are with a bunch of complaining without at least acknowledging that in ALS world, if not the "regular" world, we are very lucky so far with this, and we know it.