I read this from ICI/PRO member Bill Jenks and clicked the donate link when I got to the end.
A few weeks ago I shared a bit of my history with you. I wrote about meeting Laura, getting married and having a wonderful life together. I wrote about being each others best friends. I wrote that things changed last December. I wrote that on January 22, 2014 Laura was diagnosed with Amyotrophic Lateral Sclerosis (ALS). I shared our love for each other and our commitment to each other. I mentioned our marriage vows "to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part". Today I am writing to tell you that Laura passed away on Monday, June 16 at 7:00pm.
Today I am writing to tell you about the disease that progressed through Laura's life and how it caused her death. In December we new something was wrong. Laura began to stumble a bit when she walked and her beautiful handwriting became sloppy. In January the doctors told us Laura had Amyotrophic Lateral Sclerosis. ALS is also known as Lou Gehrig's Disease.
So what is ALS? The definition of Amyotrophic Lateral Sclerosis, or ALS, is a "progressive disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement".
But what does that mean? It means that when you want to pick up a glass of water your brain sends a signal down a nerve telling your arm, hand and fingers to move. To reach for the glass. To wrap your fingers around the glass. To pick up the glass. Someone with ALS wants to pick up a glass of water too but their nerves are failing and over time those nerves loose the ability to transmit the signal to the arm, the hand and the fingers. Someone with ALS can no longer pick up the glass of water. They progressively become paralyzed.
By mid January the nerves controlling Laura's tongue began to fail and her speech became slurred and she began to have difficulty chewing and swallowing food. The nerves controlling her legs and arms continued to deteriorate. In March she lost the ability to take even one step and the ability to even reach for the glass of water. In April she lost the ability to stand - to support her own body weight. By May she could no longer move her arms, her legs, speak or swallow anything solid. The nerves controlling her core muscles were failing too and she could no longer hold her self upright in a seated position.
Some other nerves were progressively failing too. As time passed Laura had a harder and harder time breathing. To inhale we use a muscle called the diaphragm. The nerves controlling the diaphragm progressively lost their ability to transmit the signal telling the diaphragm to move. Laura's body and brain continued to have the same need for oxygen that it had before ALS but now her failing nerves were starving her of that oxygen. For the last couple of days of her life Laura's breathing was labored and difficult. For the last 12 hours of her life she was gasping for air. She was unable to take in enough oxygen to sustain her life -she was suffocating. At 7:00pm on Monday, June 16 she died of respiratory failure caused by ALS.
ALS is a cruel disease. It takes your ability to move, to talk, to eat and even to breath. Through it all Laura kept smiling. She had ALS but it did not define her. She was always Laura with the beautiful quiet smile and big brown eyes. She made the most of her time. She spent time with friends. Time helping others finish some of her quilts. Time attending quilt classes. Time playing Canasta. She spent time with her family. Her sisters. Time with me. She will be missed.
Through it all the Evergreen Chapter of the ALS Association was there for us. When we needed information they were a phone call away. When we needed equipment it was there for us. When we had questions about how to manage some part of the disease process they had answers. They helped both Laura and I be less afraid. The Evergreen Chapter of the ALS Association provided the help and support we needed when we needed it. They were instrumental in Laura's comfort and happiness. They helped me to take the best care of Laura that I could. They provide that information, equipment, answers and support at no charge. They do it because the care. In order for the Evergreen Chapter of the ALS Association to continue to provide the support to families like Laura and I they need our help.
The Evergreen Chapter of the ALS Association holds the DoubleDay Bike Ride To Defeat ALS each July. The DoubleDay Ride is a two day non competitive bike ride on Saturday and Sunday, July 26 and 27. The ride will help raise funds to support people like Laura and I and to raise awareness of the need to find a treatment and a cure for ALS.
Laura and I rode in the Double Day Ride to Defeat ALS last year. That's us in the attached picture. We rode to honor Judy Marshall, our Team Captain Bob Vincent's sister. We rode in memory of Dr. Gene Berg (Laura's Dad) and for our friend Bob Ross. All three were taken by Lou Gehrig's Disease. This year we ride for Laura. Please join me and Team One Love to raise money to support people in our community with ALS and to spread awareness of the urgency to find a treatment and a cure.
It is easy to help the Evergreen Chapter of the ALS Association support families like Laura and I. Please follow this link to my personal page and click on "Donate To William" and follow the instructions. If you would like to join our team follow this link to the Team One Love page and click on "Join Team" and follow the instructions. In honor of Laura and to help other families like mine I will match, dollar for dollar, any donations made to Team One Love (up to $5000.00). Together we can make a difference. No donation is too small. Please follow the link to my personal page to donate today.
Together we can make a difference. Join us for the ride of someone else's life.
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