Help us raise money to find a cure for ALS!
|Event:||Orange County Walk|
|Date:||November 13, 2021|
|Team:||Walking for Annette|
The Long Goodbye -The Bravest Person I Ever Knew
This is the story of the bravest person I have ever met in my life, my wife Annette Elaine Shook. After Annette’s diagnosis of ALS on July 31, 2014, we tried to think back in time as to when we noticed the first symptoms. It was when Annette accompanied me to my running club’s weekly run/walk workout at the Grass Valley, California fairgrounds in March, 2013. The team would meet there when the surrounding trails became too muddy and treacherous for running. Annette couldn’t run because of her knees but she loved to walk. She thought that she could walk with some of the ladies in the club and get some exercise. The walk was just a mile and very flat. It should have been a piece of cake for her. I remember meeting her after her walk and she was almost in tears. She said that she could barely finish the walk, that something was wrong. She said that she had to stop many times just to “catch her breath.” When we were younger (in our 50’s) we would travel to 5K road races together and I would run the 5K road race and Annette would walk the 5K course, and many times she would finish ahead of some of the runners in her age group. After the breathing incident at the fairgrounds, we tried to think when the shortness of breath possibly started. We realized It began very slowly in the previous year (2012) when we would go on walks together around the area where we lived. She would have to stop more often for rests. We just attributed it to getting older. Soon after that we noticed other symptoms. Annette started tripping on the carpet and even falling a couple of times, injuring herself. Shortly afterward she acquired a noticeable limp.
A month or two later she developed a condition called “a floppy foot.” We then made an appointment with our primary care physician in September, 2013 and he prescribed an orthotic device to keep her from tripping and referred us to a local neurologist who later referred us to USF Medical Center in San Francisco. This was the start of several MRI’s (eight total) over the following months. The only thing that could have been a problem was a small cyst near the tibial nerve in the affected leg. The doctor at USF Medical Center performed surgery to remove the cyst. I remember how our hopes were very high that the problem was going to go away but it became progressively worse. Many doctors say that ALS is the worst of all diseases. It robs you of your body and dignity but leaves you with your mind. You are unable to communicate, use your limbs, eat, swallow your own saliva or even hold up your head yet you know exactly what is going on around you. There is no cure and no fast death. I cannot imagine a worse disease. Before diagnosis Annette had an electromyagram ( EMG) test performed which measures the tiny electrical signals in muscles. A specialist inserts a needle electrode into the muscle to be tested and an instrument records the electrical activity in the muscle at rest and when it contracts. If the sensory nerves are normal but the motor nerves aren’t functioning, it is a sign of ALS. This is done over the entire body to rule out other possible diseases and also to make a correct diagnose of ALS. A diagnosis of ALS is more of an elimination process, until ALS can be the only disease remaining that it could be.
Most of Annette’s tests were performed at the USF Medical Center in San Francisco which was about a four hour drive each way from our home in Nevada City. I’ll never forget the day she was diagnosed and we were on our way back home from San Francisco to Nevada City. We were about an hour on our way home and Annette said “Oh well, knowing when you are going to die isn’t so bad. I now have lots of time to tell all the people that I love how much I love them.” This was the kind of person that she was, always thinking of someone else. On the way home we also talked about our life together and how we were blessed with three of the finest children a parent could wish for. They grew up to be independent, caring and loving. because of her influence. She always stressed education in their lives and how important it was. Our oldest son became a medical doctor, our daughter a K-12 teacher and our youngest son a military pilot. A healer, a teacher and a defender. Annette never complained. Lou Gehrig said that he was the luckiest person on the face of the earth. I think I am the luckiest person to have had Annette in my life. She was my wife, lover and best friend. After diagnosis, doctors say that you have approximately 2 to 5 years to live. Annette passed away 1 year and 4 months after diagnosis.
During the latter months of her illness, the disease seemed to progress rapidly. She was on the Bipap machine 24 yours a day in order to breathe. She stopped eating soft foods because of choking problems. She developed rashes on her legs and was given antibiotics. This, I believe, was a mistake, because her immune system was already compromised and she started getting “thrush” in her mouth and throat. She had more difficult breathing even with the Bipap machine. Soon afterwards, she contracted a bacteria or viral infection that caused phlegm and stomach discomfort. She slowly passed into a painless coma, probably caused by carbon dioxide poisoning. She passed away peacefully in the early morning hours. I was sitting at her bedside holding her hand when she passed away but I am not sure if she knew it. I prayed that she did. A few weeks before she died, the family was gathered at our house to celebrate our 55th wedding anniversary. I knew right away that I truly knew what love was. Love was having family to gather around you when you needed it most. I loved Annette more than anything in the world. I would have traded places with her in an instant. She was taken from us by a horrible insidious disease called ALS. Seeing someone that you love so much slowly die before eyes when you can’t do anything about it is devastating.