BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Nancy ... you made me stop and think, "How AM I coping?" I think I have had a complete change in mindset since I finally gave in and admitted I have ALS. All my life, I have lived in the future ... when I retired in 2002, I was thinking, "How can I possibly retire? I still haven't decided what I want to do when (if) I grow up."
As John Lennon said, "Life is what happens while you're making other plans." ALS plunks you down right in the middle of "now." It's a waste of precious time to worry about the future or dwell on the past. I know what's coming down the pike, but it isn't here yet. And it turns out that "now" is a great place to be. I really feel that I am being showered with gifts from the universe. This is the most beautiful spring I've ever seen. Right now the mockingbirds are singing their little hearts out and baby mockingbirds are practicing a few phrases at a time, the orange tree just finished its bloom, the lilacs are still in flower and the jasmine is opening up. I take all this personally.
My husband is not doing well, but we are working on it. He is sleeping many, many hours a day, but I just learned that is a symptom of his Parkinson's and there MAY be a treatment that will help. At least, he has finally gotten a sound diagnosis, and I trust his neuro. True, I spend half my day coaxing him (my husband, not the neuro) to eat and the other half coaxing myself to eat, but it keeps me busy.
So far, my ALS is mostly a huge inconvenience ... it takes a lot of time and effort to live "normally" without speech and swallowing, and you lose a lot ... when people misunderstand you, you have to decide if it is worth the energy to explain further or if it's better to just let it go. So verbal communication shrinks to the basics. This is hard. But you can carry on with all the gizmos and create a new normal.
Last night I got a sales pitch call from someone who was bound and determined to talk to Paul, who cannot hear well on the phone and would just hand it back to me. I didn't bother do my usual phone warning, "I have a speech problem so I am using a computer to talk." After a couple minutes of his insisting and me deflecting him with mostly yes'es and no's, he said in an awestruck voice, "Am I talking to a computer?" And I said "Yes," in my robot voice, and he said, "What kind of program is this? How is this working?" and I messed with his mind a bit before hanging up. :lol: (I was tempted to say, "Want to play some chess? I'm pretty good.")
So there are benefits. Screwing around with unwanted callers is just one of them.
I'm thinking of programming an explanation of ALS into my DynaVox so when salesmen call, I can push a button and give them a lecture about MND. Carry the message one phone bank caller at a time. In fact, I think I'll do that today.
It sounds like you're coping really well, Nancy. We all have our moments. But taking it one day at a time really works. Sometimes one minute at a time.
Speechless in L.A.
As John Lennon said, "Life is what happens while you're making other plans." ALS plunks you down right in the middle of "now." It's a waste of precious time to worry about the future or dwell on the past. I know what's coming down the pike, but it isn't here yet. And it turns out that "now" is a great place to be. I really feel that I am being showered with gifts from the universe. This is the most beautiful spring I've ever seen. Right now the mockingbirds are singing their little hearts out and baby mockingbirds are practicing a few phrases at a time, the orange tree just finished its bloom, the lilacs are still in flower and the jasmine is opening up. I take all this personally.
My husband is not doing well, but we are working on it. He is sleeping many, many hours a day, but I just learned that is a symptom of his Parkinson's and there MAY be a treatment that will help. At least, he has finally gotten a sound diagnosis, and I trust his neuro. True, I spend half my day coaxing him (my husband, not the neuro) to eat and the other half coaxing myself to eat, but it keeps me busy.
So far, my ALS is mostly a huge inconvenience ... it takes a lot of time and effort to live "normally" without speech and swallowing, and you lose a lot ... when people misunderstand you, you have to decide if it is worth the energy to explain further or if it's better to just let it go. So verbal communication shrinks to the basics. This is hard. But you can carry on with all the gizmos and create a new normal.
Last night I got a sales pitch call from someone who was bound and determined to talk to Paul, who cannot hear well on the phone and would just hand it back to me. I didn't bother do my usual phone warning, "I have a speech problem so I am using a computer to talk." After a couple minutes of his insisting and me deflecting him with mostly yes'es and no's, he said in an awestruck voice, "Am I talking to a computer?" And I said "Yes," in my robot voice, and he said, "What kind of program is this? How is this working?" and I messed with his mind a bit before hanging up. :lol: (I was tempted to say, "Want to play some chess? I'm pretty good.")
So there are benefits. Screwing around with unwanted callers is just one of them.
I'm thinking of programming an explanation of ALS into my DynaVox so when salesmen call, I can push a button and give them a lecture about MND. Carry the message one phone bank caller at a time. In fact, I think I'll do that today.
It sounds like you're coping really well, Nancy. We all have our moments. But taking it one day at a time really works. Sometimes one minute at a time.
Speechless in L.A.
Bubbles couldn't pronounce "Google," so I had to go with "the Internet."