Every time I go to a doctor appointment – my main reason for getting out of bed and into my uncomfortable wheelchair – I blink at the brightness of day. The blue summer sky is blinding, and it always takes a minute to adjust. Once my eyes accept the sunshine, I immediately wonder how I’ve been living without it.
I’m always aware of the difference between me and those who enjoy sun-kissed lives; every time Evan or a caregiver touches me, I am jarred by the contrast of my unnaturally pale skin and their healthy tans and gold tones. I do envy them, but I have been too sedated to venture outside.
My insurance finally approved a medicine called Provigil, which will help me stay awake for four plus hours! I tried it out today and was amazed by how alert I felt. I was even able to talk to my mother-in-law about books like we used to do!
I can’t wait for my experience of sunshine tomorrow when I go to yet another specialist. I HIGHLY recommend this drug to anyone who has also been missing out because of sedation or ALS fatigue. Ask your doctor about it.
I may still have spasms, but consider my hope for a few hours of normalcy renewed!
2 thoughts on ““And I Think to Myself, What a Wonderful World!””
So happy to hear! Love Dad
I can empathize with you. I try to get outside as often as I can. Keep fighting! From a fellow pALS and new blogger, thank you for sharing your story.