One Year Ago Today

[Lkaibel]

Brian was diagnosed with ALS.

We had known for since 6/15/2016, when suddenly one day his left hand could no longer do what his right hand could. Added to the foot drop, the dirty EMG, the clean MRI and blood work I knew for sure there was no other explanation. He still held out a little hope for another Dx.


It seemed honestly at that point to be moving on the faster side. It had taken us just three months for a diagnosis.

The good news was it has not been fast at all. Brian talks, breathes normally. He uses a Walker as well as a cane now a but can still walk. He can still feed himself and write too. Dr has cleared him to keep driving short distances til something changes.

Just now we are installing a stairlift and mods for the tub. SO gratitude here for sure.

What can I say though I miss our old life. My birthday is tomorrow. Glad we can spend it together, sad I am helping him in the tub tonight. I did that for the first time last month and I cried when he could not see me. I am sure happy he is here though.

 

[soonerwife]

I understand perfectly Lenore! It is impossible to not miss our old life together. Everything is different... Our 20th Anniversary is one week away. It is hard to not think about what we would be doing if ALS had not come into our lives. HUGS!

 

[affected]

Wow Lenore one year.

Hard to believe isn't it? I just want to say I'm so sorry this monster has chewed its way into your lives. Fast or slow we had our lives stolen and that is the fact.

We make the best of what we have and that is important, but acknowledging your loss is just as important.

I'm so glad you joined here and that I have had this past year knowing and sharing it with you xx

 

[Erika]

This monster really does suck. Having to continually readjust and and say bye to the person t hey were a year ago, or even last month is so hard.
I'm so happy that it isn't going to fast. Enjoy those drives while he can drive and keep on keeping on. You are one strong woman doing the best that you can with what you got.
Here's to many many good days in company of your PAL and much rest and health for you as well! Happy birthday Lenore!!
-Erika

 

[Manhattanite]

Happy Birthday! I hear you completely about missing your old life. The 15 years we've been together we've spent every Fourth of July in Cape Cod and this is the first time we won't be able to. Instead I have spent my holiday weekend cleaning poop. What can I say.

 

[Lkaibel]

Thanks everyone. It's true, the drawn out, heartbreaking loses are so hard. I have a feeling this will be our last 4th together for several reasons. I decided to just appreciate the day.

Maybe the hardest loss is that in some way at I can't even define, were it not for all of you and my remaining real time friends, I would already feel alone. Brian loves me but he in some ways already is no longer a partner as much as someone who needs me. That gets hard.

 

[Jrzygrl]

Ditto on the constant losses, Lenore. Hugs.

 

[KateEmerson]

Thinking of you Lenore. I think you described the hardest loss well, I feel the same way and totally understand how you feel. Thank you sharing your life and feelings with us, it has been so helpful to me emotionally. Wish there was something I could say that would help. Kate

 

[Lkaibel]

Thanks Kate. You did just now say something that helped

I don't know much, but I know this has to mean something. If it somehow helps others, what has happened to us it means something.

 

[vltsra]

Dear Lenore, happy (late) birthday. I understand how you feel. I miss the hope we used to have for our later years.

V