AN INCURABLY HAPPY LIFE

Pat and Amie Thornburg try to live as "normal" a life as possible, including vacations and Amie's hobbies of blogging and running her own etsy store. Amie has ALS.

Amie and Pat on a vacation to the Grand Canyon.

It’s amazing what you can adjust
to when you have no other choice’

Second in a three-part series in the New Castle Courier-Times about local people who deal with special challenges during this time of quarantine. Their stories are about how they cope and hope not only now but routinely, and their advice for us. Tomorrow: Wanda Jones.

By DONNA CRONK

SPICELAND – In 1998, at age 31, Amie Thornburg was a young wife of Pat Thornburg and mother of their little girls, Emily, 6, and Lindsey, nearly 2.

The Tri graduate who attended both Purdue and Ball State also worked in exports for SMC Pneumatics in Indy.  It was then that she was diagnosed with ALS, also known as Lou Gehrig’s disease.

“ALS basically causes your muscles to quit working. Eventually, all of your muscles,” Amie says, adding that she was able to work for several years after the diagnosis, as well as do many things because the disease has been slow to progress in her, “which is usually not the case,” she adds.

“Most people are told to expect to survive 2-5 years after diagnosis,” says Amy. There remains no cure.

For sure, Amie and family have had to adapt to her disability. Yet today, she continues to lead a full life where the name of her blog, “An incurably happy life,” says it all. (Visitors are welcome: https://incurablyhappylife.wordpress.com/).

The couple’s daughters are now 27 and 23, and the empty-nester couple even travels together via RV where the equipment Amie needs is easily accessible. Amie even has her own etsy shop where she enjoys selling vintage items in her store, called Zuzues Petals (at https://www.etsy.com/shop/ZuzuesPetals).

“I type and am able to use my laptop through the use of a computer program and eye gaze system called Tobil,” says Amie. “I spend a lot of time on my laptop since I cannot physically do anything by myself.”

As normal as possible
Amie says she and her family live their lives as normally as possible. “Doing anything with a disability requires lots of extra time and lots of planning and extra work, but most things are doable,” she says.
Several years ago, she planned a family vacation to Ireland. “I was in a wheelchair then too, so it was tricky, but we did it and had an amazing trip,” Amie says. “My husband and I go on vacation, these days usually in our RV. We have started spending part of our winters in a warmer climate, like Florida, except this year, unfortunately.”

The RV makes travel easier with ready access to her wheelchair, BiPAP machine, shower chair and other supplies. While the trips are a welcome break, mostly, Amie is at home.

“Adapting to always being in my house, due to my disability, came slowly,” she says. “As I was able to do less and less on my own, I stayed in more and more. It didn’t happen overnight, luckily, unlike the COVID-19 virus, where everyone was suddenly told to stay home. Adapting is also easier when you have no choice. I can’t physically go out on my own, so, unless someone helps me, a lot, I don’t go anywhere…”

Amie is at higher risk when it comes to the pandemic, which includes a decreased lung function, “so if I got this virus or even any pneumonia, I don’t know that I would survive it. Likely not. This is serious stuff, yet I don’t think we can stop living our lives.”

She says she possibly feels a bit safer due to widespread caution. “I don’t know how I’ll feel once everyone is back to work, and living their normal lives, probably a bit nervous because it would be so serious if I were to get sick.”Amie and Pat have reduced contact with people as much as possible, including not having family in as per usual.

“My husband still has to go out fairly regularly just to get supplies for us and our animals,” Amie says. “He tries to be cautious. It’s tough because I do need help with every daily function and a patient life.”
She speaks of the effort and help required for every trip to the bathroom, bathing, dressing and eating. “I have to have someone else come over to help me when my husband isn’t available, virus or no virus.”

Amie says she is fortunate that sister-in-law Jennifer Wolski is nearby and usually helps when Pat can’t, as well as daughter Emily. Amie’s mom, Sharon Day, also helps out.

“So, I have to take some risks just to live,” Amie says. “I really don’t think about it that much. We all just have to take precautions and be cautious, but keep on keeping, on, as the saying goes.”

Doing the at-home thing
Amie says she has “been doing this stay-at-home thing” for a long time. “I have learned that we can get by with way less than we think we need, no matter what the situation. I would never have thought that I could stay in my house and not go out for literally months at a time, but I have found out that it is very doable.”

“I would have said 30 years ago that I couldn’t imagine living without being able to move my arms or walk around, but it’s amazing what you can adjust to when you have no other choice.”

Do it yourself: Amie says If you keep your mind and brain active, along with your body if able, you find that you don’t need to go out daily, “that’s just what you are used to doing.” She mentions things people are accustomed to such as various aspects of grooming and how people can do those things themselves. She suggests YouTube videos for how-tos.

Take a break: Amie has learned “that anyone will drive you completely nuts if you are around them too much, even the people you really like or love.” Her advice is to have your own space “to get away from everyone however often you need to.”

She says most homes have more than one room for more than one reason. “Take a break from whoever you live with and stay in different rooms (or garage and basement, etc.) for a little while every day…”

Gift of time: Amie agrees with those who think the virus has a purpose. “We’ve seen many horrible things with this pandemic, but there is a lot of good that’s come from it too.”

Says Amie, “I just hope people have used this gift of time to learn a few things about themselves and their lives. We can survive without many material things, but times like this make you realize what is really important in life.

“As we slowly return to our normal lives, I hope we can find a new more meaningful normal.” 

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