The ALS Association has served more than 20,000 people with ALS and their families this year, and that number continues to grow. Many of these families want to help spread awareness of the disease and share their stories with the community – share the many faces of people living with ALS, the caregivers, friends, and family members fighting every day. Although there may be some commonalities at times, no two stories are ever the same. Inspiring stories of love, support, perseverance, and hope.
We recently spoke with Amber Letters - daughter, wife, mother, and part time caregiver of a person living with ALS. Amber and her family live in Pittsburgh and have been very involved with The ALS Association Western Pennsylvania Chapter. Here is what Amber had to say about her family’s journey with ALS in her own words.
Tell us a little about yourself and your family.
My name is Amber Letters. I am a (gulp) 38-year-old wife, mother of two, teacher, singer (true story), and a part of one of the most amazing families on the face of the earth.
My parents are Bob and Patty Letters, and they have been married for 30+ years. My mom is a special ed assistant in Fox Chapel School District. My dad owned a roofing business, passed down from his father, and he passed it down to my youngest brother, Nicholas.
Nicholas is 30, and he and his wife Erica welcomed twins (Nicholas Jr. and Laken) in 2019. Nick now is the owner of Letters Roofing, which is over 80 years old. Erica is a nurse and they met back in high school. Nicholas is a skilled worker and the family business has flourished under his ownership. He is also a fabulous artist.
My middle brother, Brian, is 32, and is a police officer in Pittsburgh. He is currently a county sheriff for Allegheny County. Brian’s claim to fame is that he was an avid wrestler in both high school and college, winning major tournaments across the county. Brian is the greatest uncle to his nieces and nephews, and also my favorite person to read/talk books with.
But back to me. My husband’s name is AJ and he works for a great health care company in Pittsburgh. I am a teacher in Pittsburgh Public Schools, and until this year, was also adjunct faculty at Goucher College, but life got in the way! My son Jett just turned five and our daughter Rory will turn 2 in October. We are currently in the process of adopting Rory, and we were blessed with her last August. And, that singing I mentioned? I was part of a great band when I lived in Maryland, and my parents LOVED to come see us perform.
My family spends a lot of time together, and shockingly, we get along pretty well (when we’re together - we are a hot-tempered Italian family who yell and scream behind closed doors). My dad built the home I currently lived in (I was the girl who moved away, said she would never move back to Pittsburgh, had a baby, and bought her parents’ house). He also built us a beautiful home on Pymatuning Lake, where we enjoy fishing, swimming, having fires, and having cocktails!
We love to dance, tell jokes, laugh, eat, drink, and just be together. Our family bond is easily one of the things that has helped us all get through this difficult time.
When was your father diagnosed with ALS?
In January 2018, my dad was diagnosed with ALS when he went to a follow up visit at the Cleveland Clinic. However, we believe his journey started (possibly) years before. He started having trouble walking so he had both of his knees replaced AND a surgery on his back, all from symptoms that may have been caused from ALS.
It was a super tough day. My brother Brian went with my mom and dad, and throughout the day, continuously messaged us saying that the doctors “did not seem” to believe it was ALS, only to call us at the end of the day to deliver the terrible news.
My dad is loved by so many, and the news travelled quickly and with great sadness. We all met for dinner that next night.
How have friends and family supported you through this journey?
Unbelievably. The amount of support we have received has been a silver lining during this devastating time. For me, personally, working with The ALS Association and finding ways to support others is a saving grace, as it helps me feel like I have control over an uncontrollable situation. We have raised over $40,000 in three years and have surpassed our previous years’ amount each year.
Friends, family, coworkers, and more have donated, showed up, made meals, etc. and fortunately, 95% of them have never had a loved one affected by ALS, yet they still find empathy and compassion and support us, all the time.
One thing my family is learning is that not everyone understands. Some people have been silent. Some people have judged us on our decisions, or don’t agree with my dad’s care. And we have to remember that they may not know how to support us, and that is okay.
Outside of the walk, we have had happy hours (shocker, right?), Italian Nights (we made meatballs and shocker again, had some Italian drinks), and a Zumba class in my backyard! Because both of my brothers were big time wrestlers, the wrestling community has been such a great support as well, and my dad thrives when they are around.
So, between physical and emotional support, monetary funds, and people just reaching out to see how we are, we are nothing but blessed.
What methods have you and your family used to stay positive?
Drinking. Next question.
Just kidding… kind of. We love to be together. My brothers and I have started having dinner with my parents every Wednesday. We rarely spend time with just the original five, and my parents have truly enjoyed this new tradition.
Lake house trips are also something we enjoy doing. Although my dad can only stay for the day, we make the most of our time.
COVID has thrown us for a loop when it comes to our socialization, because we are (were) always the hosts of major parties (Halloween, Christmas, etc.) so we are trying to hold on to those traditions as much as possible.
What are some ways COVID-19 has affected you and your family, and living your life with a person with ALS?
Boy oh boy, has this been a hot topic for us.
When COVID first began, I tried to stay away, as even my mom is highly susceptible. That didn’t last long. But my parents made it very clear: they did not want to social distance, and my dad did not want to die alone. From that point on, we social-distanced from everyone except my parents.
People were not happy about this, however, and we were judged harshly. Some understood, and some did not. I made it very clear that ALS was not a curable disease, and therefore, time lost with dad was not time that would be recovered. We have luckily not been affected by the disease personally, but it was, and is, a scary time.
What do you wish people would understand about this disease?
My mother is my dad’s primary caregiver, and I’m sure I don’t have to write this here, but it is one tough job. She sometimes finds herself arguing with people, including us kids, about what she is seeing compared to what we are seeing. But it all comes down to us and others having a hard time accepting the truth. I wish that people would understand that there are never concrete answers, and that everyone (from my mom, to the nurses and doctors), are doing the best job that they can.
One thing we always say is that people don’t get it, and we hope to God they never have to. We need to give others grace, the way they need to give us grace.
Another thing is just how unbelievably sad this disease is. Watching someone slowly deteriorate is indescribable and having the knowledge that they themselves know there is no cure and no hope is also heartbreaking. My dad will celebrate the smallest wins (being able to eat something or being able to not use his “machine” for a day) and that can be heartbreaking.
But my dad has been so strong and has fought so hard. Our family has always thrived on laughter, even more so than any other emotions. Some of the jokes we have cracked during this hard time are comedian worth, in my opinion. And no one laughs harder than my dad, which is the best part.
What has been your experience with The ALS Association?
My experience has been incredible, but bittersweet. I often find myself in an almost euphoric feeling during our events, because of the support and love. But then I take a step back and remember why we are even having these events, and I could cry for days.
I was asked to run the first set of walk mentor meetings last year and met with many new team captains to discuss fundraising strategies. It was amazing and I learned so much from those meetings as well. I was so honored and flattered, but felt absolutely unprepared, as I gave all credit of my success to pure luck! But Kristi, Jena, and Amie were so supportive and helpful, and they made me believe I was actually a pro (I. Am. Not).
I asked to attend the mentor meetings instead of running them this year (two children, am I right?) but I have attended all and have met some amazing people.
My mother attends all of the caregiver’s meetings and has personally met with a few caregivers who have sought her advice. She is an advocate for caregivers and self-care.
What would you tell someone who is thinking about donating to or volunteering with The ALS Association?
I can’t think of anywhere that money would be better spent. ALS is one of few diseases that is 100% fatal with no found cure or cause, and the way in which people lose their lives to this awful disease is not only cruel to them, but to those that love them. I believe we will see a cure or a cause before the end of my life, but I do not think it will be in time for my dad.
On a different note, The ALS Association has done so much for our family, and others deserve the same kindness that we have experienced. In what I do not believe is an irrational or uncommon thought, my mom has voiced that when my dad loses his battle, it will be hard for her to still be a part of the community. And I too have felt the same types of thoughts. However, we both have agreed that we have raised so much money and have had such an amazing amount of compassion and kindness bestowed upon us, that there couldn’t be anything more unfair than for us to stop fighting to help others. My mom has turned to so many and in turn, has helped so many, and all of this was orchestrated by the Association. We will forever be a part of this community, and those that donate will be as well.
What is your personal mantra or guiding principle? Or is there a quote, song lyric, etc. that really speaks to you?
At Wednesday night dinner last week, I brought this question up during our loud, crazy, conversation. Although we do not have a mantra, I would say that our personal guide is music. Both of my parents love listening to music and dancing, and we grew up learning to love both music and dancing.
We have a game we play with Alexa, where we pick a category (song that reminds you of your childhood, song that reminds you of a movie, song that reminds you of each other, etc.) and we all sit around and laugh, and sometimes cry, and listen to what is the soundtrack of our lives.
I would say the greatest sadness for me about the physical state of my dad, is that I will no longer be able to dance with him. He was simply the best. But he still bops his head around and (sometimes, because I think I’m the best DJ) chooses the best songs.
In conclusion, music is what makes us nostalgic, makes us happy, and makes us laugh. There are so many songs that will play, and my thoughts immediately go to my dad.
Special thanks to Amber Letters for sharing her personal and heartfelt story of her family’s journey with ALS. If you would like to share the story of your experience with ALS, please contact us at firstname.lastname@example.org.