“One thing that people ask me the most since I was diagnosed is about my freedom. For example, just being able to get up and go, or take a shower on my own, and dress and feed myself. Even the small things like holding my husband’s hand or holding my daughter. When they tell you 2-5 years to live, you really look at life differently. Gives you a new perspective on life to embrace every moment on a daily basis versus long-term goals.”
My name is Leigh, and I am 38 years old. I have a husband named Jason; we’ve been married since 2010. We have a daughter, Addison, and she just turned six in April. I was diagnosed with ALS in May of 2015, and she was only three.
She doesn’t remember me walking ever, but she sees pictures of me, but she doesn’t remember me that way. She only remembers me in a chair. Because she is so young I haven’t explained what exactly ALS is, she just says, “Mommy is in a chair and can’t move her legs and her arms.” But I don’t think she realizes what the outcome is. She sometimes asks, “When are you going to be human again and start walking?” I say, “You know, I’ll try honey.” But she doesn’t understand.
I used to be a first-grade teacher in Plant City, but I was forced to retire when my ALS started to progress. I had to tell my first graders when I was leaving since they saw the changes I was going through.
I wasn’t sure what to tell them or what they would understand so I tried to use electrical poles as an example. I explained that all the electrical poles wire everything together and those poles are important because it connects everything and, in a way, our body is like that. So, my body is like an electrical pole, but the connections aren’t working correctly anymore like they should. I think the kids understood. You know, you don’t want to scare them, and I was still walking then. I wasn’t in a chair yet. Just my hands and arms weren’t working, but they were noticing things getting worse.
I’ve lived in Florida all my life and no one in my family has any ALS connections, I’m the only one. I’m the youngest in the family; I have a brother who is a year older than me, two stepsisters, a stepbrother, and a half-sister. A big family.
Jason and I both have divorced parents; my mom lives in Brooksville and my dad lives in Georgia. His parents are in Spring Hill and Arkansas. I also have a lot of friends in the area so I’m always busy with people and people are always coming by. In this situation, it’s great to have a big support system of family and friends.
I used to love to go to the beach and to the gym to work out. I can’t go to the gym anymore, but I still love going to the beach when we can get out.
There’s not much I can do on my own, so I watch a lot of TV right now. I like the mystery, gore stuff, like The Walking Dead. There’s a new show on Amazon Prime, Lore, that I like. I like that kind of stuff, it’s weird. I tell my daughter I’m a TV expert now and I rate shows. That’s one of the things I do all day now. There’s a lot of reality TV stuff too like The Bachelorette that I like to watch too.
My husband and my daughter are very helpful. My husband is my primary caretaker, and he works full time. Of course, my daughter will help feed me or get things for me, she’s always such a big help.
Every day during the week, we have friends that come over and cut our lawn or bring us dinner. We have people that come clean and a laundry service. I can’t really get out much during the week so we try to get out of the house as much as we can on weekends. And we go to the monthly Chapter Resource Support Group at USF; our daughter comes with us, and they like to see her every month.
I’m very thankful for my support system. No matter what you’re going to have your bad days and those are the days you want to be thankful people are there for you.
So, that’s pretty much my life story as of right now.
Julie Niehoff 