My name is Kelley Patterson; I am a 38-year-old wife and mother of two beautiful daughters living with ALS. In January 2009, my health began to deteriorate. This was not only a lifestyle change for our family; it was the beginning of a new journey of our life. Now five years into my illness, I am 100% dependent on my family. The easiest way to explain my condition is that I am paralyzed from the neck down; however, unlike paralysis I still have feeling in my body. In August 2011, my lung capacity was at 28% and my doctor had given me 4 to 6 months to live. I am currently at 14% lung capacity and I am enjoying every day I have with my family. Between our camping trips and school activities my girls are involved in, we are enjoying life. ALS has altered our life but I am living and enjoying every minute I have.
My name is Jim Daniele, and I am 70 years old. Born and raised in Burbank, California, I worked in the aircraft industry until retirement. I was diagnosed with ALS in January, 2013 after experiencing weakness in my legs and arms for two years prior. I have become completely dependent on my girlfriend for all my needs, and am almost completely paralyzed from the neck down, but feel lucky I still have a little movement in my legs and right arm. This disease has completely changed the active lifestyle we once enjoyed, since I was an avid bicycle rider, camper and fisherman. When I began falling off the bike, I had to give it up. Even the simple things we take for granted, like drinking a glass of water, or making a phone call are gone. It is hard to feel that everything I would like or need to do requires me to ask someone else to stop what they are doing and help me. Despite my disease, I still try to enjoy myself. My electric wheelchair allows me to get out to see movies or visit the harbor. I appreciate the time spent with family and enjoy my granddaughters, as they help me and cuddle with me. Physically I am limited, but I am blessed to still remember all the good times I have had.
I was born in Germany in 1954, and migrated to the United States the next year courtesy of the United States Air Force. Like many immigrants, my family’s dream was to come to America because they believed that the streets were “lined with gold” and you can be whatever you want to be. We settled in Norwalk, CA.
I found the love of my life, Sandra Califano in 1975 and we were married in October 1977. At that time Sandra had two girls, Lisa 4 and Colleen who was 14. I worked in the aerospace and manufacturing arena until my retirement in 2012.
My ALS symptoms began to emerge in late 2009, when I kept tripping while on vacation in Las Vegas. The tripping became worse as the months went on. In February of 2010 I made an appointment to see my doctor. Months and many tests later, I was diagnosed with ALS. My reaction was like an out of body experience. I told myself that it can’t be true, they made a mistake or maybe they have someone else’s chart.
My life changed quickly, but not in regard to my family. To this day they support me 110 percent and I couldn’t ask for anything more. On weekends, my wife and I go to San Diego or Palm Springs to just get away. Soon after my diagnosis I joined the Orange County ALS chapter support group and truly appreciate the wonderful people we’ve met and their continued support. Right now I’m able to work, but the disease is making it more difficult for me to do so. Although I may have to quit my job, I certainly won’t give up on life. I love my wife and my family and am very lucky to have them.
Johanna van Egmond
My name is Johanna van Egmond; I first began exhibiting ALS symptoms in August, 2012, when my speech subtly became more nasal. This change, coupled with a sudden overproduction of saliva, prompted my primary care physician to send me to an ENT specialist, who prescribed several medications, as well as speech therapy sessions. When these avenues failed to produce results, I was referred to a neurologist, who made the ALS diagnosis following multiple tests. At that time, only my speech was affected. Now, 18 months after the initial symptoms presented, I am unable to talk, have trouble swallowing, and lost a significant amount of weight and I am experiencing reduced strength in my hands and legs. Although I am still able to drive and live independently, I do require and appreciate assistance from my daughters and friends.