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Very helpful member
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May 29, 2014
Lost a loved one
From time to time, one of you reaches out to say, "Hey! Where are you?!" This time it was Cheerleader. Thank you for reaching out to get me to check in. I don't mean to not participate here... but free time to share sometimes seems as if it is just beyond an easy reach.

Three months ago I checked in and told you about our March ALS Clinic visit. Our neuro told us that he'd normally recommend hospice be contacted at this point of 6 or less months remaining... but he was conflicted recommending such to us based upon demonstrated "disposition and attitude". Instead, he said, "Hospice is available to you when you need it." How quickly 3 months have sailed past...

In that time, our son has been back from Brooklyn to visit... and then back again when Darcey's Dad was showing signs of reaching life's end. On May 11th, at 89 years of age, Darcey's Dad slipped peacefully away from us. His wife of 62 years, was holding his hand as he moved on. It was a death without pain and at the right time for him and all of his loved ones. Darcey was glad that she survived her Dad.

We moved on from that and had our next ALS Clinic visit a couple of weeks ago. Our neuro anticipated severe weight loss and having to instruct Darcey on how to use her feeding tube to supplement for calorie gain. Instead, she arrived having gained a few pounds and still as feisty as ever. He shook his head and said, "I just don't get you. You continue to defy all expectations". The funny part of this is that our son, Jim, did an ALS walk in New York City and named his group "Defy All Expectations". Darcey now has a sticker on the back of her power wheelchair that says "Defy All Expectations" and "Kick ALS". Where she was at in the room prevented him from seeing those stickers. LOL

This weekend we participated in the rehearsal, wedding and reception for our niece Kimberly. We had out of town guests to entertain and closed the business on Friday to have time enough to do all that we needed to do. My poor business... it takes a secondary place to my wife... and has shrinking hours associated with it. :)

I've moved Darcey from the Tobii... what a poor excuse for a computer... to one of my own builds with Dragon Naturally Speaking. She still has some voice left... especially when on her BiPAP with nasal pillows (it gives volume to her voice)... and she's have great success with voice dictation. Her world has opened up again for social media (Facebook and email)... and it has given her a new purpose and life. Honestly... I wish I had granted her this gift much, much earlier.

Having made it through our niece's wedding, Darcey is now looking ahead to a last summer visit at our beachfront condo in Nags Head, NC. We have not been back in a year... as the last visit was extremely disheartening due to her inability to sleep in the wonderful bed there. We no realize that she can get better sleep in her wheelchair... and that this is good for two or three days, at least. So end of August, we're headed back to the beach. That, then, puts us about 2 months out from seeing Joe Bonamassa.... and his wonderful bassist, Carmine Rojas... in Roanoke, VA this November. And as long as she's targeting November, she's decided to stretch it out to my birthday in January.

So... when does it end? We honestly don't know. We are simply taking life one day at a time and loving it to the best of our ability. We both wish it were other than it is... but we also take pride in our ability to accept that this is what life has twisted for us and that we can still twist it enough to look forward to what each tomorrow brings.

Know that I come in here often and read... but have become so emotionally filled that I find it hard to comment on all the beautiful new souls that find themselves here and the many good folks who lovingly remain here. I am not done... and will give back tenfold when I can. My best wishes follow each of you daily. You are awesome for who you are. Grab life and squeeze everything you can from it. It is the one thing we all have available to us... in spite of what this nasty disease tries to take from us. Be good to yourself. And thanks for being here with us...

Much love,

Jim and Darcey
As always, Jim, when you share you inspire all of us with the love you and Darcy share, and your positive spirit in the face of adversity. Thank you for enriching us all. As always, you schedule great things to make Darcy know how loved she is! Hugs to you both. Donna
May God continue to bless you and Darcey on this journey.
Janelle x
Jim, you and Darcey are my heroes (all of you here are, but you will all agree you know what I mean!)

I can't explain after the rapid progression and FTD what it has meant to me to know so many here that have always lifted my spirits as they find so much quality of life no matter what this monster does.

We miss you here daily, but we rejoice it's because you are making your life with Darcey count every single second and that's the important stuff!
Thank you bless us...and we grasp on to that blessing!
I love Nags Head! I am hoping for a September visit.
Thanks for the uplifting update Jim. Prayers for a continued abundance of grace and joy for you and Darcy.
>As always, Jim, when you share you inspire all of us with the love you and Darcy share, and your positive spirit in the face of adversity. Thank you for enriching us all.

Ditto that!
Jim, you and Darcy are an inspiration. I hope that I can do as well for my love as you do for yours! Enjoy, my friend. Squeeze every wonderful moment that you can out of this life that we live. We'll be here when you have time!
well thanks jim and darcy for your wonderful inspirations . i am really just new to this nightmare and i am learning on the run, so any and all info helps as my body changes daily. so much love to you on your journeys. 1love chally
Thanks for posting, my heart is always a little lighter after reading your posts, continued blessings to you and your love!
<3 grace
looking forward can do wonders! glad all is well with the two of you
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