Road Tripping With ALS

Moments: Why We Fight to Live

I was reminded yesterday why so many pALS fight so hard to continue living, given the hell that is ALS. A friend and fellow pALS shared that his eldest child married recently. Something he feared ALS would rob from him. Yet by refusing to let ALS dictate his life, he sets the course.

Moments create memories, memories are the building blocks of our lives. We build our lives by being present, sharing our time with others and being there for their moments; so we fight to be present. To have our life’s moments witnessed, and to witness others moments.

We can’t take our physical possessions, our wealth and who knows if we take our memories beyond. But moments, moments are the legacy we leave for our loved ones, so we fight.

We fight to build memories from the moments that we are present in.

On this RV trip we are on, Meg and I are creating memories out of the crazy moments encounter or get ourselves into, lol. However it’s not like that for everyone. Some simply want to be present for that next birthday, anniversary or their child’s wedding. The memories you create are special to you and your family, even if it’s just sitting in the sun.

I want to take a moment (see what I did there), to share a few organizations that were started by individuals and their families. These amazing organizations make it possible for individuals with disabilities to create memories of their own.

Jeramey’s Journey MS/ALS and Other Neurological Stuff. (Don’t let the name fool you, it’s a reflection of Jeremey’s humor)
https://www.facebook.com/groups/217070585556351/?ref=share

Jeramey offers families an accessible Class C RV to travel in, details can be found at the link above. If not for you, perhaps for someone you know. Give it a look and see if you would like to support this worthy cause.

Next I have, Compassionate Care ALS (CC-ALS)
https://ccals.org/
“We offer an innovative and holistic range of services tailored to meet the needs of individuals with ALS and their families. The services we offer are typically not covered by insurance. CCALS works with families in New England, across the United States, and internationally. The organization provides resources including equipment, educational workshops, Medicare/Medicaid assistance, guidance and awareness in living with ALS, caregiving, and end-of-life issues.”

Located in Falmouth, Massachusetts is CC-ALS’s retreat. Details available at the link below.
https://ccals.org/retreat/
Meg and I were introduced to Chris Curtain , Senior Family Care Coordinator. He then shared the history of CC-ALS it’s mission and purpose. We were in awe with the heart of CC-ALS’ core mission. However the native New Yorker, Chris, availed an accessible van and personally drove us around in New York. Then much to our surprise Chris treated us to lunch. His true New Yorker surfaced when, shall we say, an overly opinionated, very cosmetically enhanced woman sitting next to our table, injected politics into “our” conversation…bless her. I digress, sorry. Please check them out and support CC-ALS if their mission touches you.

Last but not least is, John-boys’ Place!
https://windchimeresources.com/
“Our Mission
Windchime Wishes Limited will create a safe and accessible space for patients with progressive paralyzing conditions such as ALS, MS, CP, TBI…to spend a week at a vacation home with family and friends for the sole purpose of making memories.”

Just for John-boy
In memory of John Porter Gafford who bravely fought ALS for over two years…Help us create John-boy’s Place, a fully accessible and equipped home where all details are geared toward getting families together, making new memories, and easing caregiver concerns…with a view.
I had the pleasure of meeting John’s wife Leslie at the Christopher Reeve Foundation Summit in DC last month. She shared her vision and some of her challenges of this monumental undertaking. Her determination and commitment were visible in her eyes and exuberance, as she shared.

I’m appealing to anyone who is willing to give Time, Treasure or Talent to help Leslie, please reach out to her. If you’ve been looking for an opportunity to make a difference in others lives join in creating John-boys’ Place. Help her create moments for families, moments that will build Memories!

J Reyes