We Are Lucky!
I was out on the ALS Forum tonight and in a single thread I noticed something.There were four people in that thread who had been diagnosed on or after 3/1/16 (or their spouse had been diagnosed) and they had all had much faster progressions of their ALS than Brian.
One woman was using a hoyer lift, just started this week. One man had not been to bed for months, sleeps in a recliner because it freaks him out he can't get out of the bed. Another woman, her husband diagnosed in April of 2016 is already a widow.
Brian drives still, goes to pool exercises on his own, goes to adaptive yoga, does things around the house. He walks with a cane and wears his leg braces and there are of course the long slow changes. The man who made my breakfast every morning and ran around like a squirrel all day, lifting and fixing and painting and obsessing on the yard is no more. It's just not possible, that old level of activity and that strength and coordination. I opened a pill bottle the other day because he couldn't get a good grip on it. He tripped and fell on his own cane twice, so had to adjust movement for that too.
What he CAN do, including get up stairs at this stage, eight months after diagnosis is great, wonderful. We don't know the future. I planned a trip up North for us in May but I took out travel insurance on it, because it can all change in a blink.
I DO feel so incredibly blessed though that we can still do so much and he is in the shape he is in now. Brian I think is not entirely aware of how this can go, how it really moves in a lot of people at this stage. Then again, maybe he knows that better than anyone and just does not speak of it. It's like that sometimes. When you get where we are, you don't always share everything.
So, tonight, this moment, this is my hallelujah. So very glad to have now.
One woman was using a hoyer lift, just started this week. One man had not been to bed for months, sleeps in a recliner because it freaks him out he can't get out of the bed. Another woman, her husband diagnosed in April of 2016 is already a widow.
Brian drives still, goes to pool exercises on his own, goes to adaptive yoga, does things around the house. He walks with a cane and wears his leg braces and there are of course the long slow changes. The man who made my breakfast every morning and ran around like a squirrel all day, lifting and fixing and painting and obsessing on the yard is no more. It's just not possible, that old level of activity and that strength and coordination. I opened a pill bottle the other day because he couldn't get a good grip on it. He tripped and fell on his own cane twice, so had to adjust movement for that too.
What he CAN do, including get up stairs at this stage, eight months after diagnosis is great, wonderful. We don't know the future. I planned a trip up North for us in May but I took out travel insurance on it, because it can all change in a blink.
I DO feel so incredibly blessed though that we can still do so much and he is in the shape he is in now. Brian I think is not entirely aware of how this can go, how it really moves in a lot of people at this stage. Then again, maybe he knows that better than anyone and just does not speak of it. It's like that sometimes. When you get where we are, you don't always share everything.
So, tonight, this moment, this is my hallelujah. So very glad to have now.
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