Category: Uncategorized
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Mile 26
A flicker of hope. My phone chimed, oh it’s messenger — Grace Colette: You’re near us do you have a chance to visit? Here’s our address… I turned to Meg to let her know, Jill was still with us so we checked with her also. We all nodded, we have to! We program the GPS,…
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Mile 25
The hardest most intense role you never wanted… Dear cALS(An open Letter to Caregivers of ALS) I know cALS is a silly moniker, and one you never wanted or expected, but here we are. You are my cALS, my connection to the world at large. If a simple thank you could suffice, I would yell…
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Mile 24
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,…
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Mile 23
In the company of Superman… At the end of August, Meg and I attended the Paralyzed Veterans of America Health Summit. We met some incredible people, who we now consider family. Regina Blye, Kim Beer and John Davis. Regina and Kim are with the Christopher and Dana Reeve Foundation: https://www.christopherreeve.org/When we shared about our trip…
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Mile 22
I Am ALS (IAA) is family! And when family comes to town you gather. When my friends in the IAA community that live in the DC, Maryland and Virginia area heard our trip would lead us there, they jumped into action! They organized a get together at a restaurant. Thank you Juliet Taylor for arranging;…
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Mile 21
Of Mice and Fish… zebra fish. After spending the night at the Hanscom AFB RV campground, which by the way is located adjacent to the runway, we woke for a field trip. Where are we going today Mrs. Reyes? Well class, since you have behaved very good recently, you get to tour a very special…
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Mile 20
Quest for the Cannoli… Mendy mentioned Mike’s Pastry and their famous cannoli’s on the way into Boston. Meg, who is a fan of the pastry, said she’s heard of it. But what she actually heard in her mind was… “we must have some. The quest has begun”! Oh magical GPS locate the nearest Mike’s Pastry…
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Mile 19
Da Meg strikes again! So far the record stood at Meg: 2 — Major City Center 0. You can now make that Meg -3 – MCC – 0! Still undefeated at navigating past the “don’t do it” sign. Yes, she drove Big Blue deep into the heart of Boston! Boston is beautiful and buzzing I…
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Mile 18
An Unexpected Friendship Juan, do we have anyone in Philadelphia to visit? Meg asks this as we approach every major location on the trip. Yes I respond, I’m getting the details. Meg asks me “do you know them, and how”? Nope! Only through Facebook, other than that I know she has ALS. Here’s the beauty…
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Mile 17
An Open Letter to ALS: Dear ALS:May I introduce myself, I am one of your afflicted, and I simply wish you to know that I don’t blame you. You are in fact not a being, but you do have a presence that is palpable. I don’t believe I am able to forgive you at this…
Road Tripping With ALS 