My name is Jennifer Lange, my husband Bert was diagnosed with ALS or Amyotrophic Lateral Sclerosis better known as Lou Gehrig's disease in November 2013. Bert is 43 years old, we have two children Sophia who is 11 years old and Alex who is 9 years old. Bert is an athlete, competing in track and field in high school and college, he ran the hurdles and was an all american at the division ll national level. Bert mountain biked, adventure raced and competed in Tang Soo Do. He is a soccer coach for our son's soccer team Panther Claws with Panthers United Soccer Association. Bert has worked for Office Depot in sales for the past 15 years. He is an amazing husband and the best father ever! We were like any other family, living our lives going to work, school activities, sports, and family time and then ALS came into our lives.
In the fall of 2012 Bert started to notice his legs feeling stiff, it would come and go and he didn't think much of it. Gradually it became more bothersome, we went to the doctor and were told maybe it was his back. Soon he was unable to run, could not jump and was having difficulty walking correctly. Then came muscle twitching and then trouble doing things with his hands like buttoning a shirt, many doctor visits, tests and procedures brought us to Johns Hopkins in October of 2013. After some more poking and prodding and some more tests we found ourselves in the office of a Neuromuscular Specialist (a Neurologist that specializes in neuromuscular diseases) on November 12, 2013...in that cold office I sat with my hands in the pocket of my hoodie holding my prayer stone and a small rosary given to me by my grandmother praying with all my might for the doctor to tell us that my husband of 15 years did not have ALS. She listened to his story, his symptoms, reviewed his medical record, she had him sit on the exam table and started her exam. First she began checking his reflexes which I had seen done a hundred times by now, they were abnormal, hyper and with clonus present (clonus is a rapid succession of alternating contractions and partial relaxations of a muscle occurring in some nervous diseases). Next, she examined his hands (I was sweating and praying hard...holding my prayer stone and rosary tight) she looked at his hands and asked when did you start to lose this meaning the muscle bulk...I knew then what was coming. She watched his muscles twitch and had him walk across the room. She sat back down and said I think you have ALS. She left the room to go get another doctor and Bert and I just sat there waiting...we already knew he had ALS even before that exam but we were holding out hope that maybe it was something else. The doctor reentered the room this time with another doctor who did a quick exam, had him stand up and asked him to walk on his toes which he awkwardly could still do and then he too said we believe you have ALS. They were kind and explained what we already knew from months of Google that this disease is terminal, life expectancy 2-5 years, no treatment at this time, no cure, no known cause...no answers. A prescription for Riluzole (a drug used to delay the onset of ventilator dependence and may increase survival by approximately 2-3 months) was written and a few more tests scheduled just to be sure...then we were given the number to the ALS clinic and sent on our way.
I could have imagined almost any other scenario, maybe cancer or a heart attack...but I never imagined that I would sit in that tiny office that evening at Johns Hopkins Outpatient Clinic and hear those words that Bert has ALS. In a way it was almost a sort of relief for us, we had so many months of worry and panic, finally what we already knew was real...at least now we knew we weren't crazy. It was a difficult ride home, our family impatiently waiting for news, my sister who was so sure it would be something else texting us wanting to know how things went. We called my sister, then our parents and remained calm explaining the news. Then we had to decide what to tell Sophia and Alex. Our children new something was wrong with their dad, they knew he had trouble walking, they were already used to helping him...they had heard me crying and us talking behind closed doors. We needed to explain this without scaring them. We are honest, our family is close, we never hid from them that there was a problem. I was crying softly and I remember Bert saying that even though we couldn't choose whether or not ALS came into our lives we certainly could choose how we would deal with it. He said we needed to set an example for our children, show them even when something bad happens we can choose how we handle that and we both agreed that we would handle this how we handled everything so far...with determination, a positive attitude and hope. When we got home my parents had dinner ready, sloppy joes and fries:) My daughter was excited to show me her Biz Town project from school her job was a Scientist and she was studying motor neurons, she had a print out and was telling me what motor neurons were, so ironic. That night we had a family meeting in our bedroom and told Sophia and Alex what was wrong with daddy...he had a disease that made his nerves not work, and when nerves don't work, muscles die and daddy would eventually not be able to walk or move or eat or even breathe. They had a few questions, like how will he eat and what will we do when he can't walk and then jumped right back into talking about video games and being silly. A child's ability to worry one minute and talk about Sponge Bob the next is comforting. Not that we hadn't already been thinking about the possibility of ALS for many months because we had, but after November 12, 2013 ALS would be part of me; in my mind when I went to sleep and there when I woke up and 24 hours a day every day from then on.
Bert is an easy going man, a happy person, relaxed and genuinely positive. I have always admired him for his ability to always look on the bright side. He is funny, not romantic but sweet in a best friend kind of way. You can count on him, he is a problem solver and he makes me feel safe. I met him when I was 17 years old, a freshman in college. We met on the track and became fast best friends, we soon fell in love and have been together ever since. We were a team from the beginning, we could figure anything out together. He makes me feel like nothing is impossible. When I graduated I was a Social Worker, I really wanted to be a Nurse, Bert said go to nursing school you can do it, so I did and I am an RN. He gives me confidence. He is an amazing father, funny, loving, and the kind of dad you can count on. Family always comes first. Bert is a good friend, an amazing athlete with a natural love for exercise, so ironic he got a disease that takes away your muscles. Bert is positive, he is a fighter, he doesn't let things stop him from finding a way to do what he loves. He continues to work out, not the same as before but he can still ride a bike on a trainer, he still attends karate certainly not the same as the Tang Soo Do he used to do but still he pushes on. Bert is an inspiration to me, he makes me believe. I believe that there will be a treatment discovered, that there can be a cure that is found. I have hope, that Bert will follow the rules our daughter Sophia came up with 1. Her dad can be the exception to the rule. 2. Things might not turn out how you think. 3. Safety (that's so Bert remembers to be careful:).
Almost everyone if not all the people who get ALS were living their life, they have people who love them, they are mothers and fathers, sisters and brothers, aunts and uncles, grandparents and friends. They are working and active, they are good people who have happy lives and are blindsided by this disease. ALS doesn't care if your male or female, it doesn't care what race or religion, it just happens. The frustration is that many people have never heard of ALS, and if they have heard of it really don't know what it can do to it's victims and their families. We strongly feel there needs to be more awareness of this heartbreaking disease. There needs to be more research and funding to find a treatment and eventually a cure. Our family wants to join the others who battle this disease and help to raise awareness. Hopefully by telling our story and sharing Bert's progress we can bring some awareness to ALS. We want you to join us to Believe and Hope for all the people who have ALS.
My little niece Hope was born the same month Bert received his diagnosis. I felt that she came at just the right time, to bring our family Hope. My sister said she chose the name Hope because of a quote she had found that she felt was so true and meaningful ~ Hope is that little voice that whispers maybe when the whole world is shouting no.