A Father's Life, Love, and Legacy: Living with ALS
A Father's Life, Love, and Legacy: Living with ALS
Rooted in Family
My name is Matt Klingenberg and I grew up in north west Iowa. I attended Iowa State University for horticulture and worked for Pioneer Hi Bred for ten years. I’m married to my best friend Kelly and we have three children. Mason is ten, James is eight, and Aubrey is six. We live in Brandon South Dakota where my wife grew up and we have a lot of family here.
I was diagnosed with ALS about eight years ago at the University of Iowa, after about six months of testing. After my diagnosis I was fortunate to get enrolled in a clinical trial at Mayo in Rochester, Minnesota. During the trial I was able to get nine injections of Nurown, which is a stem cell treatment that really helped me maintain function for a few extra years. Since the trial ended my health has slowly deteriorated.
My treatment journey has been long and ever changing. The first three years after my diagnosis I was fully functional. I worked and lived a pretty normal life. The next three years got more complicated as I started to lose function in my arms and legs. Daily things, like tying shoes, went from hard to impossible as my hands stopped working. Just about every task becomes harder and harder until you just lack the strength to do them.
There are many challenges living with ALS. I think that the biggest challenge is the lack of hope. Having an incurable fatal illness is really hard to deal with mentally. Like others with a fatal illness, I just try to take one day at a time and be a good person.
As life has gotten more difficult I have had to rely more on other people and technologies to help with every aspect of my life. Throughout my journey, I have had great doctors and therapist and my wife and family hav always been there for me.
Rooted in Family
My name is Matt Klingenberg and I grew up in north west Iowa. I attended Iowa State University for horticulture and worked for Pioneer Hi Bred for ten years. I’m married to my best friend Kelly and we have three children. Mason is ten, James is eight, and Aubrey is six. We live in Brandon South Dakota where my wife grew up and we have a lot of family here.
I was diagnosed with ALS about eight years ago at the University of Iowa, after about six months of testing. After my diagnosis I was fortunate to get enrolled in a clinical trial at Mayo in Rochester, Minnesota. During the trial I was able to get nine injections of Nurown, which is a stem cell treatment that really helped me maintain function for a few extra years. Since the trial ended my health has slowly deteriorated.
My treatment journey has been long and ever changing. The first three years after my diagnosis I was fully functional. I worked and lived a pretty normal life. The next three years got more complicated as I started to lose function in my arms and legs. Daily things, like tying shoes, went from hard to impossible as my hands stopped working. Just about every task becomes harder and harder until you just lack the strength to do them.
There are many challenges living with ALS. I think that the biggest challenge is the lack of hope. Having an incurable fatal illness is really hard to deal with mentally. Like others with a fatal illness, I just try to take one day at a time and be a good person.
As life has gotten more difficult I have had to rely more on other people and technologies to help with every aspect of my life. Throughout my journey, I have had great doctors and therapist and my wife and family hav always been there for me.
Speaking Beyond Words
As my disease has progressed, my dependency on devices has changed. In the beginning I didn’t need anything special. As I became more disabled I needed more assistance from devices. The first device that I became dependent on is my power wheel chair, for obvious reasons. The other device that I rely on is my eye gaze computer. With these two devices I am able to move around and communicate. The other therapy that has always helped is getting physical therapy. My wife, Kelly, is a physical therapist so I have in-home therapy.
My aac system has been really nice and has a great impact on my daily life. As I have lost the ability to talk and use my phone I have become more dependent on technology. The aac system is really easy to use and it can basically perform all the same functions as a phone and normal computer. People have a very hard time understanding my speech so having the AAC allows me to communicate with family, friends, and caretakers. I have also used it to write books for my daughter and letters to all of my children for future birthdays that I will miss.
Stories for Aubrey
The story creation process started in a simple, unexpected way. One day, Aubrey went to school dressed as an old lady for her 100th day of school celebration and proudly gave herself the nickname “Granny A.” After she came up with the character and name, I decided to try writing a short story just for her. I usually begin by outlining the story and then use ChatGPT to help write the final draft. From there, the real work begins, bringing the story to life through images. I use a software called OpenArt for image generation. It took some time to learn, but once I got the hang of it, it became a fun and powerful creative tool.
After I wrote a few stories, Aubrey asked me to include everyone from her class in the books. Which made the stories a little more complicated, but also more meaningful. I love watching her reaction when a story is finished, and I enjoy challenging myself to learn more about AI and improve with each book I create. When you’re mostly paralyzed, days can get pretty long, so having a project that keeps you engaged is incredibly important. In the end, I think Aubrey truly enjoys her stories. Like most kids, she loves being the main character, and she’ll have these books to remember me by for a long time.
Speaking Beyond Words
As my disease has progressed, my dependency on devices has changed. In the beginning I didn’t need anything special. As I became more disabled I needed more assistance from devices. The first device that I became dependent on is my power wheel chair, for obvious reasons. The other device that I rely on is my eye gaze computer. With these two devices I am able to move around and communicate. The other therapy that has always helped is getting physical therapy. My wife, Kelly, is a physical therapist so I have in-home therapy.
My aac system has been really nice and has a great impact on my daily life. As I have lost the ability to talk and use my phone I have become more dependent on technology. The aac system is really easy to use and it can basically perform all the same functions as a phone and normal computer. People have a very hard time understanding my speech so having the AAC allows me to communicate with family, friends, and caretakers. I have also used it to write books for my daughter and letters to all of my children for future birthdays that I will miss.
Stories for Aubrey
The story creation process started in a simple, unexpected way. One day, Aubrey went to school dressed as an old lady for her 100th day of school celebration and proudly gave herself the nickname “Granny A.” After she came up with the character and name, I decided to try writing a short story just for her. I usually begin by outlining the story and then use ChatGPT to help write the final draft. From there, the real work begins, bringing the story to life through images. I use a software called OpenArt for image generation. It took some time to learn, but once I got the hang of it, it became a fun and powerful creative tool.
After I wrote a few stories, Aubrey asked me to include everyone from her class in the books. Which made the stories a little more complicated, but also more meaningful. I love watching her reaction when a story is finished, and I enjoy challenging myself to learn more about AI and improve with each book I create. When you’re mostly paralyzed, days can get pretty long, so having a project that keeps you engaged is incredibly important. In the end, I think Aubrey truly enjoys her stories. Like most kids, she loves being the main character, and she’ll have these books to remember me by for a long time.
Moving Forward with Purpose
Right now I am focusing on getting more stories written about Granny A and a few for my nephew and niece. I’m also getting ready for a busy summer of soccer and baseball for all of my children.
I am looking forward to this summer and having my kids at home. The summer is full of life and energy. We will have soccer and baseball games, pool parties, and building projects around the house.
ALS is not very fun. I 100% do not recommend. People with ALS have all of their mental capacity but lose their physical abilities. There is no reason to avoid us or talk differently to us. It is okay to ask about our disease and what we are going through. We are just like everyone else, we have good days and bad days. Except a bad day for us is in a different category than a bad day for an able-bodied person. The last thing I wish people understood is that what some people complain about I would give anything to do. Do you hate shoveling snow? I would give anything to be able to shovel snow for an hour.
If you’re considering an AAC device you should go for it. I was resistant to it at first because it felt like I was giving up, but when I finally started using it the technology opened up doors that had been shut. I never would have been able to create the Granny A stories without my AAC device. My daughter may not remember me very well but she will have the Granny A stories for a long time to remember me by.
Moving Forward with Purpose
Right now I am focusing on getting more stories written about Granny A and a few for my nephew and niece. I’m also getting ready for a busy summer of soccer and baseball for all of my children.
I am looking forward to this summer and having my kids at home. The summer is full of life and energy. We will have soccer and baseball games, pool parties, and building projects around the house.
ALS is not very fun. I 100% do not recommend. People with ALS have all of their mental capacity but lose their physical abilities. There is no reason to avoid us or talk differently to us. It is okay to ask about our disease and what we are going through. We are just like everyone else, we have good days and bad days. Except a bad day for us is in a different category than a bad day for an able-bodied person. The last thing I wish people understood is that what some people complain about I would give anything to do. Do you hate shoveling snow? I would give anything to be able to shovel snow for an hour.
If you’re considering an AAC device you should go for it. I was resistant to it at first because it felt like I was giving up, but when I finally started using it the technology opened up doors that had been shut. I never would have been able to create the Granny A stories without my AAC device. My daughter may not remember me very well but she will have the Granny A stories for a long time to remember me by.
ALS Awareness Month is a time to build awareness and deepen understanding. Matt's story reminds us that while ALS may take away the ability to move, speak, and interact without support, it does not take away thoughts, memories, or love. Speech-language pathologists and communication supports play an essential role in making this possible, ensuring that even as abilities change, connection and self expression remain. During ALS Awareness Month, we honor the strength of those living with ALS and the professionals who help ensure their ability to connect and share is not lost.
ALS Awareness Month is a time to build awareness and deepen understanding. Matt's story reminds us that while ALS may take away the ability to move, speak, and interact without support, it does not take away thoughts, memories, or love. Speech-language pathologists and communication supports play an essential role in making this possible, ensuring that even as abilities change, connection and self expression remain. During ALS Awareness Month, we honor the strength of those living with ALS and the professionals who help ensure their ability to connect and share is not lost.