We’re leaving today for our annual family Sanibel Island trip! I vacationed here my entire childhood and adult life — my third visit since ALS invaded my body. This annual adventure will likely be my last…not because I think I’m gonna die anytime soon, but because traveling is getting more difficult, especially my breathing. Plus the growing amount of equipment I need is ridiculous! It was bittersweet reading my sanibel post from last year.
Honestly, I’ve had enormous anxiety about traveling this time (sorry fam) — which is crazy considering I just went to Mexico two months ago. But with ALS, I’ve gotten worse, not better.
My family and caregiver have gone to great lengths to make sure I have everything I need to be comfortable and safe:
✔️Trilogy breathing machine, backup chargers and masks
✔️Wedge pillow, horseshoe Pillow, small pillow, neck pillow — heck, two suitcases full of pillows
✔️Portable threshold ramp
✔️Feeding tube supplies
✔️Diaphragm pacer and batteries
✔️Power wheelchair and charger
✔️Manual wheelchair neck support
✔️Handicap accessible van rented
✔️Mac daddy beach wheelchair rented
✔️Elevated toilet seat rented
✔️Manual wheelchair to hoist me up the steps rented
✔️Shower chair rented
✔️My caregiver Suzy hired
…… Plus my normal beach vacation packing list!
ALS is trying to crash our party, but we’re not gonna let it happen! Sanibel 2016, I’m happy to meet you!