- Joined
- May 9, 2016
- Messages
- 1,529
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
We were diagnosed this morning. As I think some part of me has actually known since April 2nd when he came and showed me that his left toes did not rise up as high as his right (drop foot) my husband was told he has ALS.
We had a whole clinic day actually, and Brian is very interested in clinical trials and discussed some today at the clinic. We are getting genetic testing, saw the social worker, scheduled our next appointment, got info on the ALS registry and the ALS association. We had very frank discussion of this disease, what it means, and how it progresses.
Brian is very convinced he will be a slow progressor. I know his age mitigates against that, but it could just be. Or not. Either way, we will cope. People say ALS means no hope. I disagree. We can hope for slow progression, hope for staying financially intact, hope for the best quality of life for both of us as we deal with this. WE can even hope to help others through participation in clinical studies.
Don't get me wrong. Today is the day we lost a near perfect life officially. It has been a dream in so many respects, we have been so blessed. As I said though we knew it was coming. In some ways the day the Dr. first said "maybe", May 17th was the worst. I was in so much pain and shock then. I am in some pain and shock now, but it is different.
I am glad also that we can be confident in the Dx. We went to Dr. Walk at the University of Minnesota, and the respect and kindness we were shown today was wonderful.
I started reading stickies here on planning etc and will go back to them as I am able/ready.
Thank you forum friends, I am glad I found you,
Oh, and to the DIHALS who may be reading please, please, please remember this is in all probability not ever going to be you! More on that later. Love and blessings to all.
Lenore
We had a whole clinic day actually, and Brian is very interested in clinical trials and discussed some today at the clinic. We are getting genetic testing, saw the social worker, scheduled our next appointment, got info on the ALS registry and the ALS association. We had very frank discussion of this disease, what it means, and how it progresses.
Brian is very convinced he will be a slow progressor. I know his age mitigates against that, but it could just be. Or not. Either way, we will cope. People say ALS means no hope. I disagree. We can hope for slow progression, hope for staying financially intact, hope for the best quality of life for both of us as we deal with this. WE can even hope to help others through participation in clinical studies.
Don't get me wrong. Today is the day we lost a near perfect life officially. It has been a dream in so many respects, we have been so blessed. As I said though we knew it was coming. In some ways the day the Dr. first said "maybe", May 17th was the worst. I was in so much pain and shock then. I am in some pain and shock now, but it is different.
I am glad also that we can be confident in the Dx. We went to Dr. Walk at the University of Minnesota, and the respect and kindness we were shown today was wonderful.
I started reading stickies here on planning etc and will go back to them as I am able/ready.
Thank you forum friends, I am glad I found you,
Oh, and to the DIHALS who may be reading please, please, please remember this is in all probability not ever going to be you! More on that later. Love and blessings to all.
Lenore
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