Category Archives: Uncategorized

Expanding our World to Cope with ALS

September 19, 2017, by Kristin Neva

Someone recently asked me how I cope. “Prayer? Devotions?”

I think she was expecting a more spiritual answer. But I’ve found three basic things go a long way to keeping me sane.

First, exercise. Thirty minutes on the elliptical machine does wonders for my back, knees, and mood.

Second is sleep. We hire help to turn Todd at night. It’s necessary for his health. It’s necessary for my health.

And sleep enables the third method of coping — expansion.

In many ways, disease and disability shrink our world. We can’t have the adventures we imagined—hiking, camping, or vacationing with our kids. So our big annual event is the Houghton County Fair.

But even the fair took a toll on Todd this year. He went one day, and then needed to rest the whole next. He is most comfortable in his climate-controlled office, where he feels most independent on the computer.

And that is where our world has most expanded.

We’ve learned new skills in the last few years.

Todd has learned to draw with his HeadMouse. He makes graphics for our church. He helps me with my writing.

I’ve learned the craft of writing, having published the Copper Island Novels, and I’ve become comfortable speaking to groups. And I’ve developed a sales pitch selling the books and hand-tied wreaths at craft fairs.

Now we’ve started a couple YouTube channels. On the ALS 411, I talk about tips and tricks for disabled living. The things we’ve learned over the last seven years.

And since I’ve long had a passion for teaching kids to read, ever since I coordinated a tutoring program at the Milwaukee rescue mission, I started a channel to teach phonemic awareness to preschoolers, kindergartners, and struggling readers.

Our whole family has been helping with Time with Miss Kris. Sara and Isaac help brainstorm content, and they work the lights and camera under Todd’s direction. Todd has learned to edit videos, and we’re going to produce one video a week, posting them on Tuesdays.

The dream is that between the novels, wreath making, and YouTube, I would supplement our income enough to pay for sleep without having to rely so much on the generous support of our friends and family. (Thank you, by the way, to those who contributed to our caregiving fund. And thank you to those who’ve volunteered.)

But even if my business pursuits aren’t so lucrative, it’s good for our spirits to expand our world.

PS Check out the sample videos below. Like and subscribe, too.

What Seven Years of Sickness Taught Me about Marriage

August 24, 2017, by Todd Neva

Our vows were to the extremes – in sickness and in health.

For the first seven years, we were tested by the typical marriage issues. Communication. Intimacy. Money. Distractions. Lack of appreciation.

Much of the marriage advice worked. Hug daily. Never let the sun set on your anger. Pray together. Set boundaries. Date (each other). Affirm each other.

The wisest words were spoken fourteen years ago yesterday by an old man married 50 years — “All you need to say is, ‘Yes, dear.'”

I asked Kristin if there was anything she wanted to do that she would regret not doing.

“I want to live in the inner-city and minister to the kids there,” she told me.

That was my big “yes, dear.” I sold my plush condo on the east side of Milwaukee and we purchased a house in the hood.

We got to know some kids, but our biggest impact was to our next door neighbor Bob. He was a ragamuffin whom God loved, and we got to be with him when he died.

We closed that chapter of life, then moved to Racine where we had our kids.

A good job. A minivan. A beautiful bungalow.

Then in June 2010, I was diagnosed with a terminal disease. We held to our vows of “in sickness” as I got my affairs in order to prepare Kristin for widowhood.

But the 2-to-3-year prognosis has now turned to 7 years of disability.

And what issues do we deal with now?

Communication. Intimacy. Time management. Money. Distractions. Lack of appreciation.

Marriage is marriage, folks.

Disease is hard on marriages. Any tragedy is hard on marriages. Divorce rates rise after a death of a child. It pains me to see spouses collapse under the burden of caregiving.

I don’t know how Kristin keeps going, but she does.

I can’t hug her, and intimacy is understandably difficult, but we communicate. We pray daily. We talk through issues. We date — sometimes for just twenty minutes watching a show after the kids go to bed. I affirm her.

And I still try to say, “Yes, dear.”

Early in our marriage, Kristin talked about writing a book. She’d observed that most good books were written by people who were at least in their 40s, probably because they had something to say by then.

She wasn’t quite 40, but caring for a husband with a terminal disease seasoned her, so she had a vision for Heavy.

We wrote it so others who are suffering wouldn’t feel alone.

And then she took on the next big challenge — writing fiction. I love that, because there’s often more truth in fiction. We got to explore themes in Snow Country and Copper Country that we wouldn’t otherwise have touched.

And a week ago she asked me to write this anniversary blog, as she’s written the last couple.

But truth be told, this date snuck up on me, in spite of me sitting around all day. She had to remind me of the blog yesterday. I’ve been distracted by some other projects and Netflix.

Our marriage is tested by the typical issues.

I ordered her flowers this morning, and “yes, dear,” here is your blog.

Happy anniversary, buttercup!

Keweenaw Sweetness

July 17, 2017, by Kristin Neva

Sara Neva in Finnish Dance Costume

The Strawberry Festival is over, but fortunately the Keweenaw is still producing the little red berries. It’s some solace in a summer that’s slow in coming.

In Snow Country, Beth found hope in Pastor Chip’s words. “It’s going to take a long time for two-hundred inches of snow to melt, but it will melt and saturate the soil to give life to strawberries, thimbleberries, and blueberries.”

To the extent that Snow Country featured snow, Copper Country features berries. Keweenaw winters are marked by fall flurries, nearly daily snows in January, and spring blizzards. But our summers are marked by seasonal berries.

Early in the second book, Russ and Aimee visit Big Traverse Bay, where “low bushes with tiny white flowers, the genesis of blueberries, covered sand dunes.” And the “only shade came from a few Saskatoon trees, which would produce wild sugarplums in August.”

A few weeks later, Russ works for a lady where “trees encroached on the house, filling what was probably once a strawberry farm.”

Many of the old farms have been left fallow, as grocery stores prefer the almost tasteless strawberries genetically engineered to stay “fresh” for weeks during transport. But in the Keweenaw, we can still find berries that are half the size and twice the flavor sold by kids with roadside stands.

Later in Copper Country, Aimee and Russ are back at Big Traverse with Louisa picking berries, and the Heikki Lunta is serving fresh berry sauce on pannukakku.

There’s something genuine and earthy about a place scheduled by the seasons. Students, snowbirds, and tourists come and go, filling planes and cars in both directions. Businesses bustle or slow for their respective seasons.

I was bike riding with my kids when I spotted wild strawberry plants along our country road. I stopped and, searching for berries, found only a few for us to sample. They were small, but oh, so sweet.

With our cool weather, the berries are fewer and smaller, reminding us of how fragile and fleeting summer is. But we don’t despair. We celebrate all the more, savoring their sweetness because we know winter looms.

It reminds me of life as I reflect on living with my husband’s ALS. Life for the last seven years has been like a long winter, but we still have our good days. We’ll occasionally run to the Fitz in Eagle River for ribs. We’ll “stay-cation” for a week with daily visits to the Houghton County Fair. And we’ll celebrate and savor the Keweenaw’s strawberries, thimbleberries, and blueberries.

Beauty in Brokenness

BeautyinBrokenness

March 1, 2017, by Kristin Neva 

“The burden of grief is heavy, like the snow that crushed that old barn out in the field, but spring will come and the snow will melt.” In my novel Snow Country, Louisa comforts her granddaughter, who is grieving her broken engagement.

“But the barn will still be broken,” Beth responds, having lost hope.

After my parent’s old barn blew down, my mom made barn board picture frames. The weathered wood has character and beauty. The broken barn was repurposed.

We love stories of people overcoming tragedy, such as Joni Eareckson Tada, who was paralyzed in a diving accident. She went on to found Joni and Friends, which ministers to others with disabilities and provides wheelchairs around the world. Joni said her ministry is why she gets up in the morning. It is inspiring when we get to see pain recycled into something beautiful.

But what if we don’t see our pain made into something new?

When a terminal disease progresses. When a marriage dissolves. When sadness turns into deep depression. When there is just brokenness, like an old, collapsed barn rotting in the field.

Todd faces ALS with courage, born out of love for me and our children. I can’t imagine him telling me he hates me or biting me in frustration, but that is the depth of brokenness some of my fellow spouses experience daily in caring for their pALS.  Frontal lobe dementia. Emotional liability. Or just overwhelming grief.

Where is the beauty then, when not only the body is broken but the mind as well?

After Beth fails to see God’s goodness, Grandma says,  “Danny offered to take it apart and haul it away, but I like having it there. Sam built that barn, and when I see that weathered barnwood, I think of him. It’s still beautiful, even in its brokenness.”

The enduring value of the barn is not in what it does or what it can be repurposed to do, but in the love of and for its creator.

Some Dreams Don’t Die

November 28, 2016, by Todd Neva

snowcountry-3d-2Kristin wrote about the loss of dreams in Heavy, and she blogged about it here. But not all dreams died.

Since she was a child, she’s wanted to be a writer — an author — and not just an author of a memoir, but an author of the likes whose books she loves to read. Jan Karon. Karen Kingsbury.

Three years ago, she pushed her dream along by participating in National Novel Writing Month. The goal of NaNoWriMo is to crank out 50,000 words without worrying about structure or quality. Just write.

She turned it over to me to evaluate. I read the first chapter and thought she had some legs to the story.

Then I read the second chapter. Oh, boy!

But after three years of hard work — with lots of learning, small victories, setbacks, and reworking and reworking and reworking — she’s produced a piece of art that I dare say borders on literary quality. If literary means hard to read, then it is certainly not that. It is a fast-paced story with enough twists to keep you turning the pages.

Snow Country is not just a romance. (Even her men beta readers loved it.) It’s a story about family and faith. It is sweet, funny, sad (at times), and insightful.

The beautiful cover and typesetting draws the reader onto this fantastical snowy island where the characters are lovably flawed.

You may have heard the phrase, write what you know. Knowing my story of having ALS, you might not be surprised by one of the twists.

Oddly, it might’ve been my paralysis and the need for nearly 24-hour caregiving that helped her dream come true.

She really can’t work outside the home. She must be here for me during the day, so she spends part of it writing. I’m here to help her think through plot lines and to critique her work.

And she was motivated to generate income to help with caregiving. The average pALS spends $250,000 out-of-pocket as a result of this disease for home renovations, equipment, and caregiving. Perhaps still a dream, but we hope Snow Country can help close that gap.

Every book sold pays for almost 15 minutes of nighttime care so I can sleep. And if I sleep, then I don’t torture her by waking her up every hour to turn me.

And who knows, maybe the dream can get even bigger — this can take off and we can be in a position to help others. There’s been some big successes through word-of-mouth.

Would you help us promote it? Order it on Amazon. Buy it for a friend. Read it in book clubs. Tell our story. Share it on Facebook or other social media.

Let’s dream big!

Now on Amazon:

Paperback: http://a.co/dIdQuSJ

Kindle*: http://a.co/ePoYbxE

* Available now for preorder and delivery December 3.

Will be available in other online e-book stores soon.

I’m In! Thank You.

 October 15, 2016, by Todd Neva

img_3247-1What 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.

Todd

Addition Update 2

August 27, 2016, by Todd Neva

IMG_3200We have shingles, soffits, and windows installed. The siding is on two thirds of the caregiver’s addition, and the rough-in plumbing for the in-floor radiant heat and electrical is done.

We’ve met our $10,000 goal on the Go Fund Me drive, so we’ll be able to get the AC and tile done. And with other donations that came in separately, we’ll be able to make a big impact on the second mortgage. Getting that paid off will free up $388 per month, which would pay for 6 four-hour nights of care.

This is coming at a good time, as sleep is becoming increasingly difficult. I have virtually no movement in bed now, so my joints get stiff and achy, and I can’t sleep much longer than an hour at a time. With night help, I get turned and go back to sleep. Without help, I lie awake for as long as I can until I call for Kristin. It’s a balance between torturing me or Kristin with sleep deprivation.

It will be good to have the caregivers closer, because my diaphragm is getting weaker and it’s becoming more difficult to raise my voice.

IMG_3186By the way, a wife of the deceased pALS donated a cough assist device. I thought it would come in handy when I aspirate, but in trying it out I realized my lungs had been clogged with mucus deep down. It loosened up my lungs, and my breathing is substantially better. It felt like the first time I fully filled my lungs for many months.

A respiratory therapist at Aspirus volunteered his time to show us how to use the device. We could’ve never figured it out on our own, and it could’ve been dangerous if we used it incorrectly. What an amazing community this is.

And our durable equipment manufacturer installed a loaner head array on my wheelchair while the permanent one makes its way through the company’s Medicare approval process. That has been valuable as my arm gets too bound up at times to control my wheelchair with the hand joystick.

I am overwhelmed beyond words by the support we’ve received well beyond our worth. (Well, beyond my worth—Kristin is a gem.)

~ Todd

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.