This was written by my sister, Linda Kay McFarland, in 2017. It tells her story of living with ALS. Sadly she passed away in 2018. She is missed by family and friends.
I have been living with ALS for 9 years. Thankful for the longer than average life, for still having my voice, for still eating normally. But it is not easy. And that is why I "walk". We need the cure: money for research. We need the help: money for the association for support groups, loan closets, education, advocacy. Our caregivers need stuff too: money for respite help. Starting in my left leg, the ALS weakness progressed to my thumb and index fingers, then to the right leg, back to the upper arms, back to both legs, and then the diaphragm, back to upper arms, and last year, most of my hands. Every PALS's symptom start differently and there is no rhyme or reason to where it goes next. Each change stayed a few months, allowing me to get used to, and find work-arounds, to the new normal.
I still live alone at my beautiful, peaceful acreage with huge windows looking over the bird feeders and flowers. I have caregivers around the clock. It's the itch that needs scratching, the hair that drops in my eye, the blanket that needs adjusting, the drink when I get thirsty, the fly buzzing and landing on my arm. I had a diaphragm pacer placed so that muscle gets exercise, and I am breathing easily with constant assist of my BiPap.
Each day from bed to chair and back, someone else does it all to and for me. The loss of control started gradually, first driving, then my kitchen, and so on, but as with everything else, taken as, "this is just how it is". My days go too fast. Personal cares, AM & PM and eating are time consuming; Computer for financials, email, social media, INA business, Skype, TV, movies, reading, playing games. I am never bored.
Why We Need Your Help
Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.