georgifisher
New member
- Joined
- Oct 11, 2008
- Messages
- 1
- Reason
- CALS
- Country
- US
- State
- Virginia
- City
- Richmond
My partner was diagnosed with ALS 2 weeks ago. We are both very young (she is 27, I am 28) and we never even suspected that the diagnosis would come back as ALS. She underwent hand/arm surgery after starting to experience palsy in her right arm. The ortho doctor told us that she had a pinched nerve. After surgery, the palsy continued to get worse and spread into her left hand.
I'm trying to digest what ALS will mean for our lives. We recently bought our first home, a beautiful 1900's row house, which we are now in the process of selling because it is not able to be transitioned into a wheel-chair friendly place. We are getting married next week and decided to continue forward with that. I'm having a hard time knowing how to continue to move forward with life and not spend every moment of every day dwelling on the fact that I may be living life without my partner one day. There have been many nights since her diagnosis that I'll wake up and put my hand on her stomach to make sure she's still breathing. Its totally rediculous because she has no problems with breathing/swallowing and has just been diagnosed, but the fear is ever present.
I guess I'm just wondering how other folks managed this time right after diagnosis. I'm also curious to know how you continue to live life, make plans, and live without fear after receiving this diagnosis. My partner is a nurse and I am a social worker - we've always felt incredibly prepared for anything that would hit us in life. This diagnosis has left me very fearful and helpless feeling.
I'm trying to digest what ALS will mean for our lives. We recently bought our first home, a beautiful 1900's row house, which we are now in the process of selling because it is not able to be transitioned into a wheel-chair friendly place. We are getting married next week and decided to continue forward with that. I'm having a hard time knowing how to continue to move forward with life and not spend every moment of every day dwelling on the fact that I may be living life without my partner one day. There have been many nights since her diagnosis that I'll wake up and put my hand on her stomach to make sure she's still breathing. Its totally rediculous because she has no problems with breathing/swallowing and has just been diagnosed, but the fear is ever present.
I guess I'm just wondering how other folks managed this time right after diagnosis. I'm also curious to know how you continue to live life, make plans, and live without fear after receiving this diagnosis. My partner is a nurse and I am a social worker - we've always felt incredibly prepared for anything that would hit us in life. This diagnosis has left me very fearful and helpless feeling.