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.

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.

Mr. Mayor

I am Mr. Mayor. Isaac places a Lego minifigure in my useless, supinated palm. I announce, “Hello, Lego City.” (Hear in your mind Robin Williams’s voice from Good Morning, Vietnam.)

Play begins, usually involving some scenario were a bad guy gets away and Mr. Mayor calls the police chief. “A bad guy got away. Help!”

But something was missing, Isaac thought — Mr. Mayor’s chair.

I’ve Lived to See My Son’s Graduation

June 11, 2016, by Todd Neva

IMG_2546In our memoir Heavy, Kristin described a dream she had months following my ALS diagnosis on June 11, 2010. “God called to me and said, ‘Kristin, I have something better for Todd and something good for you and the kids.’ ”

As she tried to wrap her mind around the three-to-five-year prognosis, she wrote:

Heaven really is better. We grieve that Todd will miss out on Sara’s and Isaac’s graduations, weddings, and our grandchildren. It doesn’t seem fair for the kids to grow up without their dad. But then I think, ‘Some people live through those events without joy. What good is that?’ We are living with joy today, in the midst of sorrow.

We’re still living with joy today, and the bonus is that I got to see Isaac’s graduation.

Sure, it was his kindergarten graduation—they didn’t let me graduate until I was eighteen—but it was still pretty cool considering it was two days shy of six years since the diagnosis.

And our kids are growing up with their dad.

Yesterday I was less than masterful at fathering Sara, evoking tears as I made her give up an electronic device. Then I thought, I’m like a normal father with a ten-year-old girl who is mad at him.

I’m normal in many other ways, except I stay home a lot—almost all the time.

But I’m here when they come home from school. I ask about their day.

It’s important to me that they see I’m not idle. If you ask Isaac what I do, he’ll say, “He preaches.” Sure, only once a quarter or so, but he sees me prep for weeks ahead of time.

I fill my day with other projects, too, using a head mouse and voice dictation software to access the computer.

I don’t get the best nights of sleep, now that I’m unable to turn in bed. I sleep in late, I take naps, and I need personal care throughout the day. I am still severely disabled, but I try to stay active.

Maybe that’s why today is never as bad as I imagined it would be. I keep thinking, “If it would only stop, I can deal with this.” It doesn’t stop, yet I adapt.

Heaven may be better, but today is still pretty good.

To commemorate six years of life with a terminal disease, we’ve lowered the price of Heavy e-book to 99 cents for the next month.



The Long Haul

April 18, 2016, by Kristin Neva

IMG_8164My faith is shaken when I’m sleep-deprived.

Immobile in bed, Todd’s joints ache, and he calls me to turn him. I wake in the middle of a sleep cycle, and he goes back to sleep, but my brain is in a fog the next day.

Are you there God? What are you doing? I thought You were supposed to supply our needs. I have a basic need for sleep and I am not getting it.

I plead with God for healing, a cure for ALS, or if not that, then at least sleep—for both of us. We’ve tried different mattress overlays and he even took a $37,000 turning bed for a test drive one night. Nothing works to get him comfortable, and we have concluded there is no solution other than turning him a couple times each night.

Todd’s ALS is progressing slowly, and for that we are thankful. But now we are in the long-haul of managing caregiving for a quadriplegic.

Over the last year and a half, I’ve become increasingly sleep-deprived due to being up at night turning him in his bed. I’ve felt as though my faith is eroding, and I’m often overwhelmed by the suffering and pain in the world.

The morning of March 22, I had just returned from dropping the kids off at school when the phone rang. It was my mom. She had been awakened by the police who told her my dad had been found unresponsive in his truck.

I prayed, “Jesus, Jesus, Jesus, help us, Jesus,” as I dressed Todd and lifted him out of bed with the sling and hoist. We rushed to the hospital and arrived just as my mom was being escorted to the room where my dad’s body lay.

As the three of us sat in tears, I said, “The tomb is empty.” Because of Christ’s death and resurrection, we believe my dad is healed and with Jesus.

I had a sense of relief, even as I am often filled with doubt, that there, in that moment, I still had faith.

Not faith in a Sunday-School version of God where we follow him and life goes well. Not faith in a Santa-Claus God who gives us goodies. Not faith in a fixer-God.

But faith in a Risen Savior.

Faith that one day things will be okay because Jesus lives. Faith that my dad has been resurrected because he placed his faith in Christ. Faith that one day all of us who trust in Christ will be whole and healed.

And I felt hope. Hope because my dad is with Jesus. Hope because the difficulties in this life are temporary.

My faith is reborn as I think about my dad’s life. At his funeral, we chose for the Scripture reading 1 John 3:16-18. “This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers. If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with actions and in truth.”

My dad loved with actions and in truth.

Every spring he traveled to Reynosa, Mexico, ministering to the people in the Colonias. He took kids who visited from the inner-city fishing and boating. He drove to Canada to buy a used range-of-motion machine and spent months refurbishing it so Todd could use it in his wheelchair. When I went on a grain-free diet, my dad found recipes online and baked Paleo bread, birthday cakes, and pizza for me. He was a man who chose to serve—to be the hands and feet of Christ to those he came in contact with.

When I reflect on my dad’s life I see the answer to my faith-crisis questions. God works through people like my dad. He wasn’t flashy. He was a down-to-earth guy who just kept loving people.

That’s how I want to live too. As I serve Todd and my kids, I want God’s love to be made complete in me.

And there are many others who are the hands and feet of Christ to us as we face ALS.

Weeks before my dad’s death I had scheduled a nighttime caregiver through a home health agency. The night she came ended up being the night before my dad’s funeral. For the first time in a year and half—the night before one of the hardest days of my life—I slept eight hours and felt rested.

Since then, Todd has recognized what a difference sleep makes for me. For the last couple of weeks he has tried to tough it out most nights, which means he lies awake for hours at a time, uncomfortable because he is unable to turn. He’s in a fog the next day.

This is what it’s come down to. Either he sleeps or I sleep.

The time has come for us to have more help at night so we can both get some solid rest. On a few nights, we’ve hired a home health caregiver from an agency to come from 10 p.m. to 7 a.m. We’ve been pleased with the nursing students the agency sends.

As we’ve shared our sleeping difficulties with a few friends, God’s people have responded with action. Some have given us money—it costs $180 to hire a professional caregiver for a night. Ten-thousand dollars would cover one night a week for a year. A friend has said she’d like to organize an effort to raise funds for caregiving help, and a retired nurse volunteered to take an occasional over-night shift.

Also, we are exploring building an addition off Todd’s bedroom so we would have a room for volunteer and paid caregivers to be within earshot of him. Several people have offered to help us build the addition.

God’s love is working through his people.

Stay tuned for details about our caregiving fundraiser and our building project.

White Suit Pink Shirt

20110710A 063 memorialMarch 24, 2016, by Todd Neva

Kristin’s father, David Edward Siirtola, passed away a couple days ago. This photo epitomizes who he was, although he only wore that suit once for Ebonnie Conner’s wedding. Normally, he wore jeans and a button-up, long-sleeved, patterned, work shirt. He was a well driller. A born-and-raised Yooper. A Finn. That’s what he was, yet the picture of him in a white suit and pink shirt best describes who he was.

Dave loved kids. He went out of his way to give kids experiences they’d remember. Kristin brought mission kids to the UP, and Dave took them fishing. His niece would visit, and he’d let his great-nephews play with his ToolCat. He let Isaac operate his backhoe. He showed us how to make apple cider. He tapped Maple trees with Kristin and the kids. Swings for my kids. He plowed sledding hills for them. He’d give the shirt off his back to help people in need. The Mexico mission trips. My Quadriciser — he drove to Winnipeg, Manitoba, to purchase a used machine, and then rebuilt it so I could use it in my wheelchair. Over the last couple days, I’ve heard similar stories from others.

About twelve years ago, a girl who grew up in the inner-city of Milwaukee was struggling in school and had, in fact, dropped out. Kristin had seen that cycle of poverty play out before, and we wanted something better for Ebonnie. We asked if she’d be willing to move to Hancock to finish school. “You can live with my mom and dad,” Kristin told her, not ever doubting they’d take her in.

Dave loved Ebonnie, and he became to her a father figure. In her senior year, she wanted to go back to Milwaukee to attend prom. He chauffeured her and her friends around town, rolling out a red carpet — literally — wherever they stopped. Years later, she asked him to be in her wedding.

Of course he said yes.

He might not have known that he was to wear a white suit with a pink shirt. But he would’ve said yes anyway. That was Dave. That’s how he showed his love.

He was a great man. And I miss him already.

She’s Not Me

January 22, 2016, by Todd Neva

Kate reacts in horror after seeing her fellow pALS on a vent.

Kate reacts in horror seeing her fellow pALS on a vent.

“You’re Not You” (2014, Hilary Swank and Emmy Rossum) was the hardest movie I’ve ever watched. I stopped it two times before finally buckling down and enduring through it. It’s not because the movie wasn’t good — it was — it’s because it hit a little too close to home. Or so I thought, until I got through the first twenty minutes and realized it’s not at all reflective of my experience.

If you found this blog having been recently diagnosed, don’t watch the movie. I would hate for you to think that’s what your life would be like.

If you don’t have a personal connection to ALS, have at it. (Rated R for excessive profanity, gratuitous sex, and glorification of drugs.) It was a well-told story. A woman with a terminal, degenerative disease struggles to have her desires honored.

Nothing humbles a person like needing help on the toilet. Mechanical bidets extend independence. Other tools preserve some modesty.

Nothing humbles a person like needing help on the toilet. Mechanical bidets extend independence. Other tools preserve some modesty.

After Kate’s arms fail and she’s not able to feed or toilet herself, she fights her husband on the selection of a caregiver. She doesn’t want to feel like a patient, and she ends up choosing Bec, a woman who’s a domestic disaster, but sees her for who she is, a person. After Kate’s voice is slurred, and Bec argues with her husband on her behalf, Kate has to remind her, “You’re not me.”

Ultimately, it comes down to her desire to die, and at the end of the movie (spoiler alert) we find she gives power of attorney to Bec because she knows she would honor her wishes.

I get it. I like to feed myself, too. I pull up to the counter and put my face to the plate. At restaurants, I ask for a stack of plates or bring my own 6" x 6" wood blocks.

I get it. I like to feed myself, too. I pull up to the counter and put my face to the plate. At restaurants, I ask for a stack of plates or bring my own 6″ x 6″ wood blocks.

I can relate to much in the film. I want to have a voice in my care. I want to do things for myself, if at all possible. I feel like my care is a burden on those who love me. I don’t have a particular desire to be put on a vent. I am not bothered by her wish to die a natural death at home, rather I’m bothered by the filmmaker’s portrayal of ALS as a hopelessly debilitating disease that sucks all enjoyment out of life. For some, it is, and the movie is about one such person. But she is not me.

ALS progresses differently in everybody, for some so fast they have no time to react. I would never judge others, but I would point out that for many people progression is slow enough and there are many ways to adapt that can bring more satisfaction to life.

This would’ve been especially true for the affluent couple in the film. Most manage this disease on a small Social Security income, but this couple could afford to hire 24-hour care, yet the only adaptive equipment they had was a wheelchair.

Well, if I sat her at my desk, she could write a blog post. In the scene, she has more function than I.

If she sat at my desk, she could write a blog post. In this scene, she has more function than I.

Kate struggles with routine tasks, such as using a computer, brushing her teeth, eating, toileting. I can relate to those frustrations. Things I can do one day are impossible the next. But I adapt. Kristin and I figure out solutions to overcome challenges. In fact, I am more disabled than the character was during much of the film. I have less use of my legs, less use of my hands, yet I adapt.

Many solutions do not require much money, but they go a long way in providing some independence and satisfaction in life.

Don't take medical advice for movies. Google pictures of pALS on vents. They are usually in the wheelchair and sometimes using a computer.

Don’t take medical advice from movies.

To be fair, Kate meets another pALS with a great attitude. But later, her new friend ends up on a ventilator and unable to speak. The film shows her lying on her back in a hospital bed with a tube down her throat and staring at the ceiling. “Just don’t let me end up like that,” Kate slurs in horror.

Even on a ventilator, which generally is put in via a tracheotomy, some pALS speak, and all are at least able to use eye-gaze technology to communicate. One can have a full life even on a ventilator. Now, I have a relationship with Jesus Christ, so I won’t cling too tightly to this earthly life. I may not choose to be ventilated, but it won’t be because there is no satisfaction in life.

Three Thanksgivings

November 23, 2015, by Kristin Neva

IMG_0538-1I try to practice gratitude. I have a long list of things for which I am thankful: Being married to my best friend. The health of our children. A handicap-accessible house. Long-term disability insurance. My parents next door to help us. A supportive church. Safe schools in a small community.

Even as I write this list, I realize the tenuous nature of everything on it. Last week, my kids came home from school and described the lock-down drills they had gone through. Something I didn’t have to do as a kid. Something school administrators didn’t worry about back then. The kids hide behind the teacher’s desk, lights turned out, window shades drawn. The teacher locks and barricades the door and they all sit in silence until the all-clear is given and they find out that yes, it was really a drill.

Life is uncertain, and while we should give thanks for the good in our lives, doing so highlights the flip-side of those blessings. During this season of life, my gratitude list is constantly shifting. Thanksgiving that Todd can walk turned into to gratitude that, after an almost two years, his wheelchair was finally approved by our insurance last week. Thank you, God!

Todd preached a message on Sunday that encouraged me. It wasn’t a message about Absolute Thanksgiving, when we have health, wealth, and prosperity. And it wasn’t even a message about Relative Thanksgiving when we can look at what we have left or compare our situations to how bad things could be. He preached about Obedient Thanksgiving, which is choosing to give thanks even in the midst of lament.

Check it out: