October 15, 2016, by Todd Neva
What a way to celebrate my 46th birthday.
First, let’s start with recognizing that I made it to 46. Diagnosed at age 39 with ALS, a disease with a 3-5 year life expectancy, I didn’t think I’d get a chance to see my children grow. I was counting the months.
Then months turned into years, and we’ve settled into our handicap accessible home in the Upper Peninsula. Sara is in 5th grade, and Isaac is in 1st. I keep myself busy with various projects, such as doing graphics for our church. We’ve grown roots in this community, and we’re blessed to have the love and support of friends and family here and elsewhere across the country.
ALS is not a disease that one can fight alone. Slowly, month by month, I lost my independence. At some point — it’s hard to pin down an exact date — I became completely dependent on Kristin for my daily needs, but she got a break when she put me to bed.
Starting about a year ago, I lost so much mobility I wasn’t able to reposition myself in bed. I’d sleep for a few hours, then wake up sore and needing to turn. Kristin’s sleep suffered.
And now, I can only sleep for about an hour at a time. This is not sustainable for Kristin to go on night after night without sleep.
Hence the caregivers — a combination of paid and volunteer home health professionals — come in most nights. We try to schedule a helpers to come for a six-hour shift at least five nights a week. They put me to bed and turn me at night so I’m comfortable, but most importantly, they allow Kristin to sleep.
Before deciding to build the addition, we did the math, and we determined that we’d be able to swing an additional mortgage payment. It would be tight, but we didn’t have much of an option. It wasn’t working well to have the caregivers across the house in the living room—and looking to the future, it would not work at all.
A friend encouraged us to do a fundraiser. “Some people really want to help,” she said. We decided to try, and we put out a goal to close the gap between what we were willing to finance and what it would take to complete the addition.
We were absolutely overwhelmed by the support we received. We have enough to finish the addition and also pay down much of the addition mortgage. This will free up more cash on a month-to-month basis to pay for caregiving.
Last Friday, I was finally able to move into the addition. My computer is set up in the corner where I have a view of the field. I have enough space to turn circles. There are extra chairs for folks to meet with me. There is a recliner for caregivers to sit in at night within earshot of me. I don’t need to yell down to the other end of the house when I need help repositioning at night. Kristin and the kids have their privacy at night.
There’s a few more things to do to finish it off — some casing, paint, doors, light, etc. But it’s already functional, and beautiful. A big thank you to my buddy Chris Raasio who oversaw the project. He and his crew do very good work.
And thank you to all of our supporters out there. Thank you to those who helped us build the addition and thank you to those who send funds to pay for night-time caregivers. Your gifts make a difference in the quality of my life, and they reduce the burden on my wife and children.
I am beyond grateful.