Monthly Archives: May 2015

Let Us Add Eggs

eggs-001May 11, 2015, by Todd Neva

“I don’t believe your research,” a client at a large food manufacturer said twenty years ago. “The survey shows more people baking from scratch, but flour sales are down.”

Further analysis found fewer people baking from scratch, but more people said they were. It turned out that “scratch” changed definitions. Adding water, butter, and eggs to a mix was baking from scratch.

Mothers love baking from scratch. It’s a better display of their love.

The food scientists said they could make a better mix if they required only water and/or butter. The results will be more consistent, higher quality.

Our research showed women wanted to add the eggs. That fine line between baking from scratch and baking from a mix was whether or not she got to add eggs. The food scientists had to work a little harder to empower those women to add their own eggs, because people like to do things themselves.

I like to add my own eggs. I like to do things myself. Kristin could do a better job on my teeth, but I prefer to cradle the spin brush in my paws and move the tip around with my tongue. Kristin could feed me, but I prefer the waitress bring a stack of plates to lift the food closer to my mouth so I can eat independently.

I’m happier when I’m independent. Engineers have worked hard to empower me to do things myself. The touch screen on my iPhone allows me to call, text, and access email. I can’t use a regular phone or even a modern flip phone because I can’t press the buttons. I have a window that opens up to the world that sits on top of my desk, and I have a trackpad mouse and the clicker at my feet. I can’t use a regular mouse. I use dictation software. I can’t use a regular keyboard.

With a progressive neurodegenerative disease, I’ll continue to adapt. Eventually, I’ll need eye-gaze technology to control my computer. When I can no longer speak, I can use the Dynavox. This amazing speech generating device gives voice to the voiceless. It is expensive, but for only fifty dollars more, the manufacturer will enable a little feature that allows users to make calls, send text messages, and access the Internet.

Many people with ALS (pALS) can’t afford the Dynavox, but fortunately Medicare pays the thirteen monthly rent-to-own fees for the unit, after which time the patient owns the unit. Unfortunately, during the rental period, the government prohibits the manufacturer from turning on that little module that gives so much independence to mute quadriplegics. For thousands of dollars, pALS are given a voice, but they are denied from spending fifty dollars of their own money to have a window to the world.

The feature can be turned on after the thirteen-month rental period, but that’s too late for many pALS. To add insult to injury, if the person ends up in a skilled nursing facility or hospice care, Medicare will no longer pay the rental fee and will require her to send the machine back if she is not able to purchase it outright. The patient is left lying in bed unable to communicate her most basic needs, even unable to utter a distress call in a life-threatening situation. Communication does not simply improve quality of life; it preserves life.

Alas, there is hope. On April 22, 2015, the US Senate passed The Steve Gleason Act (S. 948). The bipartisan law, if it passes the House of Representatives and is signed by President Obama, will allow people to upgrade their speech generating devices, if they wish to pay the extra money for that liberating feature. The bill would also end the cruel practice of taking away a person’s only way to communicate in the final months of her life.

Tell your US Representative to pass The Steve Gleason Act (S.948/H.B.628).

 

UPDATE: As of July 30, 2015, The Steve Gleason Act is the law of the land. 

U.S. Sen. David Vitter announced that President Barack Obama has signed S. 984, The Steve Gleason Act of 2015. The Steve Gleason Act, authored by Vitter, will make speech generating devices (SGDs) more accessible, helping patients diagnosed with diseases such as Amyotrophic lateral sclerosis (ALS) live more independent lives. Vitter’s legislation passed through the Senate in April and passed the House earlier in July.

“Steve and Team Gleason deserve all the praise in the world for not only shedding light on this issue, but helping get our bill across the goal line,” Vitter said. “Making this equipment more accessible and affordable will allow more ALS patients to literally have a voice to communicate with their family and friends.”

Many who read this blog reached out to tell me they were in contact with their representative. Thank you! You made a difference.

~ Todd

The Gap

May 3, 2015, by Kristin Neva

IMG_2629“Did you think I was as old as you?!” He looked at me incredulously.

Ouch.

I was at a coffee shop with a writing group. A fellow writer also grew up in the area. “What school did you go to?” I asked, thinking we might play the who-do-you-know game and once again confirm that there is only one degree of separation between Yoopers.

He graduated from Houghton High School.

“I went to Hancock,” I said, “but my best friend went to Houghton. What year did you graduate?”

“2005”

“Oh,” I said. With his facial hair, it was hard to tell he was ten years younger.

I am fast approaching forty.

I’m at the age when many people come to realize life is not going to go as they expected.

Until just a few years ago, my life seemed to go according to plan. Graduated high school. Went to college. Had a rewarding job coordinating a tutoring program at an inner-city ministry. Met and married Todd who had a good job at a good company. A couple years after we were married, I was delighted to become a stay-at-home mom to Sara. A few years later, Isaac was born. We had dreams to travel, renovate our 1925 bungalow, and have more children.

We all had dreams when we were young, but then, at a certain point, life is what it is. My friend thought she’d be a business woman, but has found herself at home with four kids. I have another friend who dreamed of being a mom, but encountered infertility, then hoped to adopt through the foster care system, but thus far remains childless. Others thought they’d marry, but remain single. Other friends struggle financially.

Life doesn’t turn out as we expect. That gap between unachievable expectations and reality is called disappointment.

When Todd was diagnosed with ALS, we were more than disappointed. We were filled with grief. Our reality collapsed.

Would baby Isaac even remember Todd? Some people with ALS are cut down and die in less than a year. The hope we had for the future became unachievable expectations.

My once active husband, who used to remodel the house in his free time, never imagined that he would be confined to a wheelchair, his limbs nearly completely paralyzed. I had always imagined a family life including physical activities like bike rides, hiking in national parks, and occasional winter vacations to some place warm. I never thought I would be my husband’s caregiver in my thirties. I transfer him with slings and lifts. I help him toilet, bathe, and dress. I take care of the kids, prep meals, and run errands. I never imagined I’d be doing it all myself.

Over time, we’ve had to adjust our expectations, and we have to keep adjusting as the disease progresses. But, Todd tells me that he is not confined to a wheelchair, instead liberated by one.

Todd continues to approach life with a smile. He gets out as much as he can and acts as a sounding board for his friends. He listens to and encourages me. He uses voice dictation software to write. He spends time with the kids. We enjoy family movie nights and attend sporting events together. This is our life. I’m a mother, a wife, and a caregiver. I’m committed to my husband and to my children, to my marriage and our family.

Also, I’ve developed a new passion: writing. Todd and I wrote our memoir Heavy together. More recently, I’ve been writing fiction. Writing is a good creative outlet for me in the midst of never-ending laundry and dishes. I completed my first novel, Snow Country, and found a literary agent. He submitted it to a half dozen publishers, and we are waiting to hear back from them. In the meantime, I am working on novel number two: Copper Country. I write and Todd is my editor-in-chief. He helps me brainstorm and structure my stories. Writing has brought energy to our marriage.

Todd says, “The gap between unachievable expectations and reality is opportunity.”