Sad to be here, happy to know you are here
- Status
andirai
Active member
- Joined
- Jun 22, 2017
- Messages
- 33
- Reason
- PALS
- Diagnosis
- 08/2017
- Country
- US
- State
- Tennessee
- City
- Clarksville
Ted,
Welcome and thank you for the lovely introduction. I feel quite a bit like you right now. I just found out officially on Tuesday but I have been in mourning for months. When I received the second opinion, I didn't cry and still haven't. I want to enjoy the time I have as best I can and hope for a miracle in the meantime. Welcome aboard
Welcome and thank you for the lovely introduction. I feel quite a bit like you right now. I just found out officially on Tuesday but I have been in mourning for months. When I received the second opinion, I didn't cry and still haven't. I want to enjoy the time I have as best I can and hope for a miracle in the meantime. Welcome aboard
Tedstehr
Distinguished member
- Joined
- Aug 25, 2017
- Messages
- 199
- Reason
- PALS
- Diagnosis
- 08/2017
- Country
- CA
- State
- BC
- City
- New Westminster
Andirai,
Best wishes of a slow progression to you. I suppose we have to accept our fate and hope for small victories. A long life with ALS but worrying everyday doesn't seem like a prize to me. I will be ordering Edavarone from Japan any day now (waiting for respirology report.) Learning about this drug has given me hope - hope that I did not have a few weeks ago. I have been careful to not set my expectations too high. In high School I was in a play called "A Village Wooing" by George Berhard Shaw. One of my lines was "I have learned not to expect too much from life, that way I am always getting agreeable surprises rather than desolating disappointments."
I was almost more at peace with no hope than with it!
Thank you for your welcome,
Best wishes of a slow progression to you. I suppose we have to accept our fate and hope for small victories. A long life with ALS but worrying everyday doesn't seem like a prize to me. I will be ordering Edavarone from Japan any day now (waiting for respirology report.) Learning about this drug has given me hope - hope that I did not have a few weeks ago. I have been careful to not set my expectations too high. In high School I was in a play called "A Village Wooing" by George Berhard Shaw. One of my lines was "I have learned not to expect too much from life, that way I am always getting agreeable surprises rather than desolating disappointments."
I was almost more at peace with no hope than with it!
Thank you for your welcome,
chally
Very helpful member
- Joined
- Apr 23, 2015
- Messages
- 1,265
- Reason
- PALS
- Diagnosis
- 02/2015
- Country
- US
- State
- wv.
- City
- renick
Ted, welcome to the forum hope your dx goes slow. Get out there and do stuff that's where hope lies.
Live in the moment and let all things be even the tough stuff cause it's out of our control. Live BIG!
Love ya chally
Live in the moment and let all things be even the tough stuff cause it's out of our control. Live BIG!
Love ya chally
TomSanti
Active member
- Joined
- Sep 8, 2017
- Messages
- 62
- Reason
- PALS
- Diagnosis
- 07/2011
- Country
- US
- State
- California
- City
- Mariposa
Hello Steve, I am also sad to welcome you here, but glad you found this place.
After six years of living with ALS I thought I knew quite a bit, could Not have been more wrong. The people here are wonderful, and I have learned a lot in a very short period of time.
Here are my rules that I try to live by.
#1. Don't stop doing anything until this damn disease forces you to.
#2. Attitude can take you far, I love yours.
Good luck and God bless,
Tom
After six years of living with ALS I thought I knew quite a bit, could Not have been more wrong. The people here are wonderful, and I have learned a lot in a very short period of time.
Here are my rules that I try to live by.
#1. Don't stop doing anything until this damn disease forces you to.
#2. Attitude can take you far, I love yours.
Good luck and God bless,
Tom
- Status
