Help us raise money to find a cure for ALS!
|Date:||August 14, 2021|
For anyone who knew my mother knew she was the life of the party, she never met a stranger. She was crazy fun. Would do anything for a laugh. She was a friend to so many. She would cook her heart out and there was usually more than just our immediate family at Thanksgiving dinners. She was a tiny woman but feisty. She would take on anyone, even men twice her size.
In 2007 shortly after my wedding, she started to loose her ability to talk. Strange. Doctors told her it was chronic laryngitis. Then maybe a nodule on her vocal cord. Still it kept getting worse. Then she started to have problems swallowing. Back to the doctor. They stretched her throat so she could eat. Still it got worse. Finally a doctor said, I think it is a stroke. Lets send you to a neurologist. Well that makes sense. Thats when they discovered it to be ALS. Of course we had no idea what that meant. At that time there was no ice bucket challenge for awareness. It quickly progressed, she could no longer talk, so we did our best to get by with what little sign language we knew. They gave her a machine to talk for her. Push the button and it would talk. Her favorite thing was to tell my dad he was a filthy bastard. Like I mentioned before she was crazy fun. She could no longer eat so they put a feeding tube directly into her stomach. She would pour a can of food into a funnel and it would go straight to her stomach. Yum. Then came her arms and legs. No longer able to walk she had to resort to a wheelchair. Not being able to use her arms and hands, signing was out. Next came a giant board made out of foam with basic sayings that she could point to. As you can imagine, her bodily functions were gone. Now we are in diapers, sorry mom. My family did they best they could to take proper care of her. My dad and sisters did amazing. My sister and I with newborns. A child and mother both needing to be changed. Well the disease progressed and we needed help so next is the nursing home for around the clock care. By this time my mother, who was probably a little over 100 pounds is now 80 pounds soaking wet. She is so small she had to use something like a child's pull up instead of a grown womans diaper. Part of the disease is uncontrollable crying. You don't know when or for how long but you do your best to get it to stop. You are terrified she will choke. But its a daily thing now, and why not? I would cry to if I was paralyzed and in pain. If all I can do to communicate is use my eyes to try to tell my family whats wrong. She slept on a mattress filled with air so they could roll her over when she needed to be changed. They had to use a hoist at first to lift her from her bed to give her baths. That of course was when they were able to still give her baths, later there would only be sponge baths. I visited her every day in that horrible place. That place where she was the only one with that disease, the only one with a full head of beautiful long brown hair. I know that sounds strange but when you brush her hair all you can think is why is this happening, her hair never even had the chance to go grey. You do whatever you can, keep them comfortable. Rub lotion on her legs which are so thin her shins are like razor blades. Clip her nails and paint them, maybe she would like that. She can't tell you if the color you picked is her favorite. Put her chap stick on because her lips are dry. Check her oxygen tube to make sure its not pinched anywhere. And brush her hair, her beautiful brown hair. Then you wait, because you know its coming. We spent the holidays there, no big feast this year on Thanksgiving, just immediate family. A tiny tree for Christmas. A small wooden sign that says hope above her sink. You have nightmare at night, nightmares you are paralyzed. Nightmares she is paralyzed and has fallen out of her wheelchair and you can't get her back up. You have horrible thoughts, you don't want them to leave but you are so tired of them suffering. So tired of not being able to help. So tired of the crying. And then she is gone. So this is the disease. This is the horrible truth of it. This is why I'm fighting. Because no one should have to go through this. But everyday someone new is diagnosed. Because every day someone loses a mom, dad, friend, family member. Because my mother is no longer paralyzed. She can fly. That is why I need her angels her on earth to walk so someday they have a cure, so no one else has to go through this.
Thank you for helping us reach our fund raising goal! Together we can make a difference in the lives of those affected by Lou Gehrig’s Disease. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS® or choose a team member from the list and donate to our cause.
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.
This crippling disease can strike anyone. Presently there is no known cause of the disease yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join a walk today.