Monthly Archives: July 2016

Addition Update

July 30, 2016, by Todd Neva

IMG_3139The addition is moving along quickly. It’s framed, and we’ll have it weathertight on Monday.

I’ve been overwhelmed by the support, both financially and physically.

My good buddy Chris Raasio, of Raasio Contracting, has been overseeing the work. To save on costs, he’s scrounging some leftover material and worked with a few volunteers who’ve shown up. It’s been like an old-fashioned barnraising.

And I’m blown away with the financial generosity from old friends, new friends, acquaintances, and even strangers. It’s hard to ask for help, and I must admit I am quite cognizant of a number of pALS and cALS who are struggling all the worse — inaccessible houses, poor equipment, lack of sleep, tighter budgets, fewer people to help.

I’d like to believe that it’s all part of the “pay it forward” concept, and that what I’ve given in the past justifies what I’m getting now, or that someday I’ll have a chance to give to someone else. I’m not sure the math works. I think I just have to admit that it is only by grace that I receive beyond my worth.

Well, it is what it is. I’m a plant, so to speak, surviving only by the grace of God and the help of my caregivers. I do more than survive. I enjoy life. My writing. Preaching occasionally. All else that keeps me busy.

Thank you for the gift of life, caregivers and supporters.

Caregiver Addition

Our Caregiver Addition is underway

Our Caregiver Addition is underway.

“On nights like these, I wish I were in heaven, ” Todd said when, at six this morning, he asked me to put him in his chair to end his miserable night in bed.

I was up every hour or two with him, and it was rough for me too.

As the ALS progresses, I’m thankful we have help a few nights a week when caregivers put him to bed and turn him every hour or two. We treasure those nights of sleep.

Thank you to those of you who have sent money that allows us to hire help.

We are aware that as the disease progresses we will need more and more help. I recently spoke with a woman who just lost her husband to this dreaded disease. In his last days, she was up with him every twenty minutes.

Recognizing what lies ahead of us and finding that our current house layout is not meeting today’s needs, we are building a caregiver’s addition — a room right off Todd’s bedroom where a caregiver can sit and read within earshot.

Todd is looking forward to using this space as his office during the day — a quiet place to work on the computer and host visitors, as well as a private space for home health professionals to work on him.

In our recent hot, humid weather, Todd can’t sleep without running his window air-conditioner — but when the addition goes up, we’ll lose his second window, so at that point we’ll be unable to open a window on cooler days. So we would like to install a ductless mini-split in his room and office. He feels better and his feet swell less on hot, humid days when he has air.

We took out a loan that will get the addition up, but to keep the payment affordable, we are short about $10,000 to finish it off. We figured we can add flooring, trim, closet doors, etc., at a later date if needed, but we really would like that air-conditioning system.

Will you be a part of our caregiving team to help Todd be comfortable at night and help me sleep? If we can raise $10,000, we can finish off the addition this summer. Any additional funds will pay down the addition debt or be used for nighttime help.

If you would want to sponsor us with one night of sleep a month, consider giving on a recurring basis. We’ve found that having someone come in from 10:30 to 2:30 or 11:30 to 4:30 works pretty well. The cost is between $60 and $100, depending on how many hours the caregiver stays and whether we can find a CNA/nurse private pay or through an agency.

Our mailing address is P.O. Box 367 Hancock, MI  49930. We have also set up a Go Fund Me site for raising funds for the addition. https://www.gofundme.com/2fux5sc

Thank you for being part of our caregiving team!

Roughing It

July 7, 2016, by Kristin Neva

Fourteen years ago, when Todd and I had just started dating, we drove to the UP with friends to go kayaking. The day ended up being cold and rainy but we carried on, and all five members of our group completed the skills checklist including the wet exit where we flipped our kayaks upside down while strapped in, released the skirts, and got back into the kayaks from the water. Even in wetsuits, we were miserably cold, yet there was satisfaction in persevering.

I know people who take their babies camping, even in the rain. Some couples take their young children on 30-mile hikes. We, however, gravitated toward cushy accommodations—a downtown Chicago hotel, our friends’ Bel Air home, a water park.

Families facing ALS grieve the loss of dreams. Some are large. Some are small. Many of us feel sadness when we see other families’ vacation pictures. We wish we could take those trips with our kids, but most destinations are physically impossible. Travel with severe disability is too difficult.

Last year we made the four-hour trek to Duluth for Todd’s ALS clinic. We had a large room at the Sheraton with an accessible bathroom and a Hoyer lift provided by the hospital. It went pretty well, so this year we made the same trip plus tacked on a three-hour excursion south to Minneapolis to give the kids family vacation memories and visit extended family. And Todd had a chance to catch up with old friends.

Todd’s gradual but continual decline made travel more difficult this year. After letting the kids swim late the first night, we spent an hour in the bathroom wrestling with the lift and sling. Our frustrations boiled over. Eventually, I got Todd into bed, but his feet dangled off the end and he felt suffocated on the soft bed that prevented even the smallest movements. Though he was exhausted, he sucked it up and lay awake most of the night.

The next day at clinic, his blood pressure was elevated. His feet were swollen, and his joints were in pain. (By the way, his breathing is down another 4 points, but still not to the intervention stage.)

Todd dreaded the thought of getting back into that bed, so we ventured out to Trailfitters and purchased camping mattresses. He slept on the floor that night, which worked better, except the Hoyer is not designed to lift somebody off the floor. It was hard on his toes, as I tried to maneuver the clunky device over him to lift him onto his chair.

After his appointment, we had a nice dinner, and then drove up to Todd’s parents the next day where we spent the evening at the lake. The kids swam, and we roasted hot dogs and marshmallows over a bonfire. From there we went to Minneapolis — Mall of America, Auntie’s horse ranch, and the Minnesota Science Museum. Life almost felt normal there for a few hours when Todd wheeled off with Sara to explore exhibits while Isaac and I spent an hour building a ball run with pistons.

Our family sat together (yeah for accessibility) and watched an Imax movie. We experienced the National Parks through the eyes of mountain climbers. And that reminded me. Some people push themselves to their physical limits for fun.

We spent a week in nice hotels, but at this stage of ALS, we were roughing it. It felt as rigorous as kayaking in cold rain.

I asked Todd, “This wasn’t worth it, was it?”

“There were more peaks than valleys,” he said.

I’m glad we did it—Take that, ALS!—but I don’t know if we’ll ever leave home again.