The clock is ticking, which is both good and bad. While I am still wrestling with the idea of having a piece of silicon dangling from my gut, I am looking forward to spending far fewer hours of my day trying to expel food and phlegm from my airway with the cough assist machine. I am employing the concepts that I write about so often in this blog on a daily basis in order to adjust to this upcoming intrusion to my body. Every day I envision what it will be like having this new appendage, carefully focusing my thoughts on the gratitude for the increased time and comfort it will bring to my life.
Recent weeks have been filled with the details of my exit from hospice. We have been busy replacing equipment to reduce costs, learning more about the tube, and searching for a new afternoon aide. As January 19th draws closer, I wrestle not only with anticipation of the procedure, but also with the loss of my friend and aide, Lloyd, as a daily presence in my life. While I know he will continue to visit now and then, it won’t be the same as having his reliable support every Monday through Friday. For me, this is the most difficult part of the transition. His caring service and his unwavering belief in my ALS recovery have been an important contributing factor to my successes in living with ALS.
The search for Lloyd’s replacement is ongoing, but so far with no results. With less than a week to go, the pressure is on to find someone, and to remain calm in the process. Stay tuned! Meanwhile, if anyone knows any good jokes about feeding tubes, please share them.
Friday, January 14, 2011
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Love you Dad...
ReplyDeleteZsa zsa Gabor has one... Michael Douglass is getting one... some say Kirstie Alley uses one from time to time... Dave says Marlon Brando didn't need one, he just wanted one...
ReplyDeleteActually, my dad says it will be great. He says you'll gain weight, feel better, rest your throat.
It's such a tiny thing that you won't have to find shoes to match (like you would with a colostomy bag).
You just have to worry about curious children wanting to drop in nickels to see if they get shiny... (Do your research on Alexis St. Martin...)
Dave says you can switch to helium for the town parades...
-Kristen
Joe,
ReplyDeleteYou are truly an inspiration to all and I know you will be able to overcome this new challenge with all the enthusiasm and positive energy that you bring to each hurdle.
It has been far too long since our last visit. Please know that Vivian and I think of you often, and hope that we can get together again soon.
Best of luck today in surgery - we are wishing and praying it's successful and helpful in your fight.
Warm Regards,
Jason Brock
I would like to thank Ultimate Health Home for reversing my father's Amyotrophic Lateral Sclerosis (ALS). My father’s ALS condition was fast deteriorating before he started on the ALS Herbal medicine treatment from Ultimate Health Home. He was on the treatment for just 6 months and we never thought my father will recover so soon. He has gained some weight in the past months and he is able to walk with no support. You can contact them at ultimatehealthhome@gmail.com
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