Posts by: Kristin Neva

I was struck by the wording in an advertisement in Quest magazine, a publication of the Muscular Dystrophy Association, that invited people “coping with amyotrophic lateral sclerosis (ALS)” to participate ... Read more

January 6, 2022January 6, 2022

Things Can Change Quickly With ALS

ALS News Today Columns

On New Year’s Eve, I took our kids and their friends bowling. My husband, Todd, who has ALS and is paralyzed, stayed home and used his computer. As we arrived ... Read more

December 30, 2021December 30, 2021

Making Game Nights Work

ALS News Today Columns

It feels like a win when we can figure out how to include my husband, Todd, in game nights. He is paralyzed because of amyotrophic lateral sclerosis (ALS), so any ... Read more

December 23, 2021December 23, 2021

Gaining Behind-the-Wheel Experience Navigating ALS

ALS News Today Columns

“How am I supposed to drive when I can’t see anything?” my nearly 16-year-old daughter asked. Sara and I were logging night-driving hours, which are required before she can take ... Read more

December 16, 2021December 16, 2021

A Tree Full of Memories

ALS News Today Columns

We decorated for Christmas this past weekend. The kids and I went out into the woods, and my 12-year-old son, Isaac, cut down a balsam fir. My 15-year-old daughter, Sara, ... Read more

December 9, 2021December 9, 2021

Making the Right Call to Avoid Dangerous Germs in Public

ALS News Today Columns, COVID-19 Columns

My husband Todd’s lung strength is weak from ALS. He’s gotten sick a few times in the last several years, and each time we wondered if he would pull through. ... Read more

December 2, 2021December 2, 2021

Taking Help Wherever I Can Find It

ALS News Today Columns, COVID-19 Columns

About four years ago, I began to be overwhelmed with sadness about my husband’s continuing decline from amyotrophic lateral sclerosis (ALS). Todd and I have often said that if the ... Read more

November 18, 2021November 18, 2021

When a Season of Life Is Fading Away

ALS News Today Columns

I’ve been preparing for winter. I drained the hoses and hung them in the garage a few weeks ago. We used the lawnmower to pull Comet’s doghouse from our backyard ... Read more

November 11, 2021November 11, 2021

Unexpected Outcomes From Sharing Our Story

ALS News Today Columns

“Your YouTube channel must be taking off,” my 15-year-old daughter said. “Your edema video was recommended to me again. I was just scrolling through YouTube, and then I see it, ... Read more

November 4, 2021November 4, 2021

When Fear Gives Way

ALS News Today Columns

“How are things going?” a friend asked. I explained that I have been concerned about my husband Todd’s breathing. He’s been waking up with headaches, which could be a sign ... Read more

October 28, 2021October 28, 2021

The Power of Puns

ALS News Today Columns

“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves. I grabbed the urinal and held it for him. Todd invented the word pee-flex to describe ... Read more

October 21, 2021October 21, 2021

The Limits of Marriage

ALS News Today Columns

Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies. ... Read more

October 14, 2021October 14, 2021

Navigating Interventions With the Ongoing Losses of ALS

ALS News Today Columns

My husband, Todd, began monitoring his breathing after he was diagnosed with ALS. We were told that he’d need to have surgery to insert a feeding tube before his forced ... Read more

October 7, 2021October 7, 2021

Getting Our Affairs in Order

ALS News Today Columns, COVID-19 Columns

In the days after my husband, Todd, was diagnosed with ALS, I was overwhelmed with what lay before us. But Todd went into preparation mode. “We need to sell the ... Read more

September 30, 2021September 30, 2021

Does It Ever Get Easier?

ALS News Today Columns

“Does caregiving for ALS ever get easier?” I pondered the question someone had posted on social media. I couldn’t sleep for days after my husband, Todd, was diagnosed. I was ... Read more