This my last "educate it forward" and ALS Awareness post for May. I'll never stop educating ALS forward until there is a cure. ALS is is only a part of my life and I will never let it define me. I have lived most of my adult years living with ALS. 19 years to be precise and with this gift of time I must be a voice for my fellow ALS warriors, keeping my own voice, mine.
I walk with a walker due to bad balance and I have tight leg muscles (spasticity) which creates a gait. My gait, after 19yrs, has worn down knees so I use a cute scooter for stores and walks. My hands are curled like claws, leaving one finger left to type. Pincher's don't work but I still have a grip. My torso cannot help my weakened arms to lift me out of bed. Arms shake when lifted up, making it hard to get food in my mouth. I can't get too hot or too cold and my tongue muscles make it hard to speak so I sound drunk. I do not suffer at all compared to most ALS warriors.
Next comes choking and aspirating on food/saliva. Then I will be sentenced to an electric wheelchair. My neck will need a brace and I will need to be bathed and wiped on the toilet. I will over salivate needing suction and must be fed through a stomach tube. Sounds easy but it can get infected or leak stomach acid burning your skin. I will gradually become paralyzed and unable to speak. I do have a computer that is banking my voice now and will speak for me using my eye's. My mind will remain sharp but 10% will get frontal lobe dementia. Lastly my diaphragm will weaken, needing a bi-bap mask to help it function. This is when I will choose to die or allow a ventilator to breath for me.
I will struggle with not feeling like a woman, feeling like a burden and being abandoned. These feelings are ways ALS weakens your defenses, so I raise my shield and fight these emotions because I can. I will not give in to ALS until my last breath.
Now you know what it is, how many suffer and how they suffer. Educate it forward! Thank you!
Wednesday, May 26, 2010
Sunday, May 23, 2010
Created by Tammy Brierly at 1:07 PM
Wednesday, May 19, 2010
If I were a month, I'd be May which speaks of renewal and it's ALS Awareness Month
If I were a day, I'd be Monday because it's the start my week after a hectic weekend. I love beginnings.
If I were a time of the day, I'd be 10am because that's when I awake and have my coffee, in the fresh mountain air.
If I were a season, I'd be fall because my muscles have been worked in the summer and I'm strongest in fall. Bonus is the tree colors.
If I were a planet, I'd be Saturn because it's unique and beautiful.
If I were a direction, I'd be north keeping me close to God and I love Northern California where I live.
If I were a drink, I'd be a glass of ice tea w/no sugar. Gives me energy when my ALS tries to steal it away.
If I were a tree, I'd be a redwood living long and strong.
If I were an animal, I'd be a dog. They need you and give back unconditional love.
If I were a musical instrument, I'd be a guitar. It's held and strummed with passion.
If I were a fruit, I'd be a passion fruit. Sweet and colorful.
If I were a food, I'd be a pasta. Very versatile and energy boosting.
If I were a celebrity, I'd say Hugh Lorie because he's sarcastic and his mom died of ALS. He could really impact awareness.
If I were a color, I'd be red because it looks good on me, my hair and ALS color.
If I were a book, I'd be a romance novel because I'm a true romantic.
If I were a song, I'd be Stairway to Heaven, a high school fav sung by a crush.
If I were a movie, I'd be Pretty Woman or Dirty Dancing.
If I were a flower, I'd be Jasmine for the sweet smell and climbing vines.
If I were a facial expression, I'd be wonder. I'm in awe of nature and love.
Created by Tammy Brierly at 7:12 PM
Created by Tammy Brierly at 1:04 PM
Monday, May 17, 2010
Created by Tammy Brierly at 5:08 PM
Created by Tammy Brierly at 11:27 AM
Saturday, May 15, 2010
Created by Tammy Brierly at 2:04 PM