I absolutely hate this fucking disease! Today I’m speaking for myself and maybe some other people that have this dreadful disease. Today my Rosemary-colored glasses are nowhere to be found.
This disease sucks the life right out of our bodies at a very slow pace and only the tough or the lucky ones weather the storm, but only temporarily. It strips us of the use of our arms, legs and neck muscles and then, as if that’s not enough, it takes our voices and our ability to swallow away.
Ironically, ALS doesn’t mess with our minds so we are fully aware of everything that’s happening to us. But then again being fully aware can be one of my worst enemies so I try to calm it with my own problem-solving tactics and most of the time they work but today they aren’t.
Stay tuned for tomorrow because I should have a much happier post because I am one of the lucky ones.
Walking in the woods in the fall is so much fun especially if you’re surrounded by people you love. Last weekend while Chad and Devin were visiting from Dallas we were able to fit in a family hike by Lost Lake. It was a beautiful day for a hike with the trees starting to turn from green to bright orange, yellow and red.
Bryan pushed me in the Chairiot most of the way but when we were on the cross country ski trail we came to a hill and Mark offered to relieve Bryan for a while. As we started up the hill Chad thought he would help by taking hold of one of the handles then Bryan decided to push on Mark’s back to be helpful also. The result of their teamwork was that we all ended up on the ground and my Chairiot was on its back and I was looking up at the sky. It was all somewhat graceful and no one was hurt so we all laid there laughing. Thankfully my head was securely supported by my recently donated head rest which held my head firmly in place. As we continued our hike we talked about how grateful we were to Chip and Colleen VanderWier and all the people that contributed to the Chairiot project. I would not be hiking in the woods without this chair.
So I want to thank you all again.
Transferring me from my wheelchair to the couch can look very different depending on the person transferring me. Mark has the transfer down perfectly. He lifts me up, guides me to the couch, sits me down and with one single swoop he lifts my legs onto the couch with his right arm and with his left arm he supports my head and neck and gently lays my head on the pillow. Kelly and Bryan are pretty good at the transfer but Chad and Corey still need some practice because sometimes they miss my pillow and then we start laughing as they tug and pull my body to the pillow.
Laughing is a bad way to start the transfer because my legs always buckle when I laugh. One evening my friend Cindy was visiting while Mark was gone. For some crazy reason Cindy and I thought we were strong enough to do the transfer ourselves. Cindy is very strong but also very short. We formulated a plan but our first two attempts didn’t work because we were laughing too much. Our third attempt was successful but it wasn’t perfect. After leaving my wheelchair and heading for the couch I fell and landed on the opposite side of the couch that we were aiming for and Cindy landed on the floor. We were surprised that we didn’t hurt ourselves but it made for a great laugh.
My sister-in-law Janet thought I should have something pretty to lay my head on since I take a lot of naps, so she designed and made five beautiful pillow cases for my pillows.
Thank you Janet for your beautiful and thoughtful gift.
We recently received a package with a very beautiful note enclosed but the sender did not reveal their name. Inside the package was a black headrest which I can use on my wheelchair or my Chairiot. This headrest will work great when my neck muscles become weaker and I’m no longer able to support my head.
Mark installed my new headrest before taking our two-mile walk the other day and my head was well supported over the uneven sidewalks. This headrest will work great on the trails in my Chairiot. I’m not sure who sent this useful gift but I am grateful they did. Thank you.