njk0407
Active member
- Joined
- May 10, 2016
- Messages
- 84
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- NC
- City
- Holly Springs
Hi Everyone,
It's been 13 month's since my husband's diagnosis. It's been a really long time since I've posted on here. I just wanted to update everyone on how everything is going, but first I would like to THANK ALL OF YOU
You were my support system with your encouraging words of wisdom during the horrifying shock of diagnosis. Thank you all for being here for me. As you promised, there was still life to lead, memories to make, and love to share. You all were spot on
Over the last 13 months our kids have turned 2 and almost 6. We've taken many vacations which have included the beach, the mountains, Disney World, Washington DC, Sesame Place, and most recently an Alaskan Cruise (just the 2 of us on the cruise
.
As of now my husband is still working full time. He is still taking part in the 1 year Tirasemtiv Trial (he'll be done in August). He's had some progression....both his hands have weakened and atrophied, his speech is slightly worse, but still intelligible, he's starting to choke on liquids more frequently, he's still walking, but his balance is not 100%, he's had some falls. Our Dr. has repeatedly told us that he is definitely progressing slower than most of his other patients, which makes things a little easier emotionally, especially since we have young children.
He maintains a positive attitude and loves life, which helps my mood tremendously. Overall I'm thankful for what he still is able to do and the memories we've been making. There are still times where it is so overwhelming that I want to lose it, but I'm at a point now where I've had to "accept it". It's made things a little easier I guess. Thank you all for always being here and listening.
-Nikki
It's been 13 month's since my husband's diagnosis. It's been a really long time since I've posted on here. I just wanted to update everyone on how everything is going, but first I would like to THANK ALL OF YOU
You were my support system with your encouraging words of wisdom during the horrifying shock of diagnosis. Thank you all for being here for me. As you promised, there was still life to lead, memories to make, and love to share. You all were spot on Over the last 13 months our kids have turned 2 and almost 6. We've taken many vacations which have included the beach, the mountains, Disney World, Washington DC, Sesame Place, and most recently an Alaskan Cruise (just the 2 of us on the cruise
. As of now my husband is still working full time. He is still taking part in the 1 year Tirasemtiv Trial (he'll be done in August). He's had some progression....both his hands have weakened and atrophied, his speech is slightly worse, but still intelligible, he's starting to choke on liquids more frequently, he's still walking, but his balance is not 100%, he's had some falls. Our Dr. has repeatedly told us that he is definitely progressing slower than most of his other patients, which makes things a little easier emotionally, especially since we have young children.
He maintains a positive attitude and loves life, which helps my mood tremendously. Overall I'm thankful for what he still is able to do and the memories we've been making. There are still times where it is so overwhelming that I want to lose it, but I'm at a point now where I've had to "accept it". It's made things a little easier I guess. Thank you all for always being here and listening.
-Nikki
