It was SO appropriate to come across that surreal urban mural in San Francisco the night before my diagnosis. There have been several surreal moments since I saw that mural.
One surreal moment came when the respiratory therapist brought my durable medical equipment: bipap machine, suction, and cough assist.
Having these machines in my home makes my ALS and the path I am on much more real. I really will need a machine to make me cough when I can’t do it myself. I really will need a suction machine to suction phlegm out of my throat when I can’t clear it myself. And is my breathing already compromised such that I need a bipap?
I watched the ALS Association’s patient DVD about breathing and was surprised to learn that use of bipap for at least 4 hours a day lets the diaphragm relax and it functions longer as a result. So I am happily putting on my bipap mask each night.
A lot has been learned since my mother was sick with ALS. She didn’t benefit from all the research in the last few years like I might.
ALS is a strange disease. It can be caused by a known gene mutation or can be sporadic (unknown cause). The particular gene mutation that my mother had causes ALS or dementia or ALS and dementia. And even if you have the same gene mutation it can start at any age and it can start in any motor neurons in any part of the body. My mom’s started in her arm when she was 59.She soon lost use of her arms and had to go on disability from her job as a hospital dietitian.Soon after that she was in a wheelchair. Then she lost her speech but she could still swallow liquid nutrition until she died at age 62. I am going to lose my speech and swallow first, and we don’t know how soon it will spread, but often it doesn’t spread rapidly when it starts in the mouth.
I have a friend from high school whose niece got ALS at age 33. Her name is Sarah Coglianese and she also writes a blog and she is a phenomenal writer.She is also a fundraising champion for ALS research.http://speed4sarah.com
She created the #whatwouldyougive fundraiser last year. https://als.net/whatwouldyougive The 2nd annual one starts today.
From the #whatwouldyougive website:
CHALLENGES (pick one):
During the week of Aug 1-8, pick a day and…
GIVE UP YOUR ARMS/HANDS
- Have someone wash your face and brush your teeth
- Have someone feed you meals
- Have someone dress you
GIVE UP YOUR VOICE
- Type on your phone to communicate
- Write on paper to communicate
EXTREME CHALLENGE! GIVE UP YOUR LEGS
- Use a wheelchair all day
- Have someone lift you from a chair to the toilet every time you have to use it
- Have someone lift you in and out of bed
Start Now: Join the team! Create your fundraising page and reach out to your network to start raising money.
During the fundraising period: Post photos/video of you holding your #WhatWouldYouGive poster (provided by ALS TDI) on social media, using text like “I’m giving up my right arm for the day.” “I’m giving up my legs.” “I’m giving up the ability to feed myself on [date].” #whatwouldyougive #letsmakeALShistory
Day of the Challenge: Keep it respectful. You don’t have to be sad and depressed all day! Sometimes when people help me with my basic needs, it can actually be funny. Just keep in mind that the videos and images you post should reflect the purpose of the campaign: to share your experience and educate your social network.
After the Challenge: Feel free to share any thoughts or experiences on social media with hashtag #whatwouldyougive. Continue encouraging your network to donate! The fundraiser is live through August 31.
…………………………………………………..I am participating in this fundraiser. You can visit my fundraising page here. Reno friends can borrow a #whatwouldyougive poster for photographs of your challenge for social media.
If you decide to do the challenge you can join my team here. Sorry for the short notice!
My husband and I went to the Ritz Carlton Tahoe on the 4th of July. I decided to practice for my upcoming loss of speech.
I took this note to the front desk and the guy actually walked all the way outside with me to show me where the trail was. I was rather surprised by how easy it was. I have not run since that day – I find I really need to heed my instructions from UCSF to conserve my energy. They’ve advised me to not lose weight so I am reevaluating my running routin. I can’t imagine what it will be like to lose the use of my arms or legs, and I don’t mean this story to be insensitive to those with ALS who can’t run. My heart goes out to everyone with ALS who is doing the extreme challenge every day, being lifted in and out of bed and on and off the toilet, like my mom was.