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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 makes me happy to read so many positive things in your post. We can't change the reality of the disease but we can certainly change how we react to it.
 
Nikki - I'm so glad you've stopped by and left an update. It truly sounds like you are making some great memories, that's wonderful. Keep up the good work!

Hugs,

Sue
 
Nikki, so glad you all are making memories and that your husband has slow progression. Glad you dropped by and gave us an update. We don't hear nearly enough good around here. Enjoy everything you can!
 
Thank you all! This disease is so devastating. I can only accept it and make the best of it. Some days SUCK, but others are pretty good. I know we have a long road ahead of us so I'm really trying to enjoy everything we are still able to do. I think of you all often.

-Nikki
 
Hi Nikki, Inremember you. My husband was diagnosed the same month as yours, and is also a slow progressor. Glad you are lucky in that way. Our thought about all of this are so similar.
 
Thanks Lenore! I'm glad your husband is a slow progressor too. Makes things a tiny bit easier.
 
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