My ALS Story
By Kimberly Mattson-Hansen
A physician, his wife, and their three children are climbing the steps at the Journey of the Falls tour in Niagara Falls, and the physician realizes how much trouble he’s having lifting his feet up onto the deck steps and keeping his balance. He says to his wife that he’s going to forego steps for the rest of the trip. This is the beginning of our family’s journey with ALS.
The physician at the heart of our story is my husband, Scott. ALS came crashing into our lives in September of 2015. Our trip to Niagara Falls was only about 6 weeks prior. For months before his diagnosis, Scott had warned me that something very bad was happening to him. I was optimistic and didn’t quite get the enormity of what he was preparing me for. He knew he had ALS independent of the diagnosis because he had been having fasciculations, clonus, and muscle spasms, but kept it to himself. He didn’t want to worry me – worry our children. He finally couldn’t protect us any longer.
It is so difficult to describe the fear and hopelessness that an ALS diagnosis has on a family. No cure? Are you kidding me?? Scott is in his mid-40s. He’s the breadwinner of our family. We have 3 young children, all of whom need their father. How do we tell our children?? How do we tell our families? Friends? Overwhelming. The look of shock and awkwardness that accompanies every person’s response to our news over the next few months is heart wrenching. We apologize to everyone we tell about Scott’s diagnosis, saying “We’re sorry to have to tell you this. We know how shocking it is. No, there’s still no cure for ALS. Yes, the kids know, but they don’t understand how their lives have just changed.”
ALS is a cruel disease. There’s no way around it. Some cancers are swift and take people away too fast, tragedies and accidents are horrible, but ALS is cruel. As his muscles have deteriorated because they aren’t getting nerve signals from his brain, Scott struggles to do even the smallest task independently. My strong, ex-football player husband has to be fed now. His arms are too weak to pick up the fork. He needs his arms propped up so he can scratch his nose or take care of an itch on his head. Imagine that for a moment. That your arms aren’t strong enough to rub your own nose – and you are in your mid-40s. Horrifying.
I want everyone to think of ALS patients as having a family and being trapped in a body that won’t work. I want everyone to know how frustrating it is for an ALS patient’s family and children to see that person suffer so much physically and emotionally – to have that person’s life turned inside out, to have to stop taking care of patients and become one themselves, to have to depend on others for the most basic of needs. Scott can’t even grab a tissue to wipe his nose when he sneezes. It is a ton of work to take care of an ALS patient. We have taken care of elderly relatives and babies, but we are all suffocating sometimes from the amount of work and worry that goes into taking care of Scott.
Our kids have had to watch their father go from a strong, vibrant man who used to swing them and catch them, hike, bike, and camp, to their dad who has to use a powerchair to muddle around. No more sports, no more hearty hugs. Scott is now losing his voice. He can’t sing any more, and laughing is getting harder. It is difficult for our oldest son to reconcile the changes in our house. He says that it’s depressing to have to feed his dad. He’s right. We used to leave for the weekend on a whim, picking up the kids from school and bringing them on surprise trips. Now, we bring ALS and all of its baggage with us.
Our oldest son is a junior in high school. We’re pretty sure that Scott will see him graduate. We’re not so sure about our other kids. Girlfriends? Weddings? College graduation? Moving into their first home? Grandkids? All gone. My life partner is wasting away in front of me, in front of our children, and it is the most frightening thing I’ve ever watched. Scott and I were supposed to travel all over when our kids grow up, camp on their front lawns for weeks at a time just to annoy them, laugh a lot. We still love to laugh. Our dreams and plans are all gone now, though. Our beautiful family is being ripped apart by a very cruel disease.
Our oldest son is planning on doing his senior project for school next year about ALS so that he can educate his classmates about the disease. Our middle son, who is in eighth grade, wants to follow his father’s footsteps into medicine and work on a cure for ALS and other motor neuron diseases because “this is one messed up disease.” He can’t do that without a well-funded ALS Research Program.
Our 10-year-old daughter has this to say about ALS:
“My dad got ALS when I was in second grade. Now I wonder if he will always be able to laugh and if I'll always be able to talk to him. Each time he gets new equipment it's harder and harder for me to take personally. Right now, he is using a power chair and is deciding on which eye technology system he likes better. Sometimes, I just want to video him walking so that I'll always be able to see him, but he would not like that. Sometimes, I just want to cry. It is very hard to take in. If I could have one wish, it would be to have a cure for my dad. My dad's voice is getting weaker and weaker. His voice used to be lower, but now it's higher pitched than it was. Our dog, Cletus, can barely understand that it's still my dad. Each time I see my dad try to call for Cletus, it gets sadder and sadder. Cletus does not understand. He's used to my dad's old voice. All I wonder is will I always have him with me in my lifetime or will I lose him?”
She just gave a presentation about ALS to her grade at school. Why? Well, none of her friends knew what ALS is and she was tired of explaining it. So, she put together a slideshow and taught her classmates about our nervous system and what we know about ALS research. She talked about how her dad is still the same on the inside, but his body can’t work. One of her classmates said “that’s mean.” They get it. At 10 years old. Our daughter’s classmates and teachers were upset that there is no cure and that research funding is so limited. One of the girls in her class has juvenile diabetes and said that ALS should get more funding that her disease gets because parents should live. Yes, ALS needs more funding.
Additional research funding for ALS and other neurological disorders should be a priority. If we don’t continue research to find a cure, ALS will become more prevalent. According to NIH, people are being afflicted with ALS at a higher rate than in the past - especially those in the military. Researchers are in the process of finding genetic markers for ALS, but the next step is determining the role these markers play in preventing nerve signals from working correctly. I am asking Congress to ensure additional funding for both military and non-military ALS research funding.
When Scott was diagnosed, he immediately registered with the National ALS Registry in hopes of being in a clinical trial. This underfunded gem has not had the resources to support its intended uses. A lack of resources has prevented research on the data from being done. If there are commonalities in the life history or genetic markers of ALS patients, the registry is our best hope in finding those. Please continue funding this important resource.
Taking care of an ALS patient is a 24/7 job. Every time I leave the house, I have to make sure that Scott isn’t thirsty or cold, and that he has access to his phone. He can’t even lift his arm to scratch his head, so that makes a quick trip to the grocery store quite stressful. Medicare funding of personal care attendants would be so helpful in our daily lives. The service is essential with ALS patients, not a luxury.
We are very appreciative of the fact that Scott has Medicare. This has helped us tremendously with medical services and equipment. Unfortunately, Scott was not in the armed services, so many of the benefits that are available to veterans with ALS are not extended to non-military ALS patients. We would like to see that changed. Although his powerchair was covered by Medicare (which we so appreciate because it was expensive), we can’t get a ramp for our home. I would like to see other equipment covered under Medicare, as well. These include beds and Hoyer lifts with electronic controls instead of hand cranks.
As you vote on funding in the next term, our family would appreciate if you would consider ALS families and their needs.
Written by Kimberly Mattson Hansen