When You’re Unequipped for Difficulty

Kristin Neva avatar

by Kristin Neva |

Share this article:

Share article via email
Main graphic for column titled

“We were ill-prepared and unequipped for the hike,” I told my husband, Todd, after returning home. The kids and I went to see Douglass Houghton Falls in Michigan’s Upper Peninsula with my friend, who was visiting from out of town. Todd stayed home because he has ALS and is paralyzed.

I don’t leave him at home alone for long periods of time, so we timed our adventure for when he had a shower aide. There was plenty of time to drive there and walk the short distance to the top of the falls, but the kids and I had already been a few times, so my son suggested we see the bottom of the falls.

I had been there as a kid, but for years it was closed to the public. The land was recently purchased by the Michigan Department of Natural Resources, and although it isn’t officially open, the falls can be viewed from the bottom by hiking three-quarters of a mile along a creek. The trail isn’t marked, but I had saved directions on my phone after learning how to get there from my park ranger friend.

Recommended Reading
AMX0035 | ALS News Today | Amylyx files for FDA approval | illustration of woman with megaphone

Phase 2 Trial of AT-1501 in Slowing Progression Nears Full Enrollment

We walked down an old railroad bed that had been repurposed into an all-terrain vehicle trail until we could see the creek, which passed through a culvert under us. I threw the water bottles that I was carrying in a bag down the steep embankment, and I used both hands to hold on to roots as I carefully scooted down. My daughter slid down on her butt.

We followed a narrow trail along the creek. We climbed over downed trees. At one point, my foot slid, and I fell and bumped my knee, tearing a hole in my capris. My friend scraped her knee in the same place.

Unequipped / ALS News Today / Photo of Kristin's family hiking on a trail surrounded by dense greenery.

A challenging hiking trail. (Photo by Kristin Neva)

It was slow going on the uneven trail in 90-degree weather. We didn’t have proper footwear. A walking stick would have been helpful, and a backpack for my water. We didn’t know how much farther we’d have to go, and I had limited time to be away from Todd. And so, we turned around without reaching our destination.

I felt a mixture of relief and disappointment as we headed back.

The people I know who’ve made it to the bottom of Douglass Houghton Falls are more experienced hikers. But even my park ranger friend, who hikes many miles, said it’s a hard trail.

I could’ve done it if I had been better prepared.

I think about all the ways people in the ALS community are ill-prepared and unequipped for ALS.

ALS is a hard hike physically, emotionally, and spiritually for both the person with the disease and the caregiving spouse. Some handle it better than others.

It’s a scramble to find help. Many families with ALS are financially ruined after home renovations and hiring aides and nurses, and caregiving spouses become physically exhausted when they don’t have enough support.

Some with the disease withdraw or become angry due to physical pain, depression, or cognitive difficulties that sometimes accompany ALS, and that exponentially increases the stress on the caregiver.

Sometimes people just can’t go on. I wish no one had to deal with ALS, but until there’s a cure, those living with this disease need more resources. We need to be better equipped.

I’ve watched other spouses express a mixture of relief and sadness when they turn the care of their loved one over to a nursing home.

We didn’t make it to the bottom of the falls, but I was still glad to be on an adventure with the kids and my friend. We sampled wild berries along the way, and that encouraged us to keep going for a little while longer. It was a difficult hike, but we found beauty in the journey, such as a tree we saw growing over float copper.

Unequipped / ALS News Today / Photo of a tree growing over float copper in the woods.

Resilience. (Photo by Kristin Neva)

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Comments

ELIZABETH avatar

ELIZABETH

I AM SO SORRY i hope your husband and my sister can hold on till a medication can possible reverse damage lets hope for the best and enjoy the journey while waiting

Reply
Kristin Neva avatar

Kristin Neva

Thanks for commenting! It's a hard journey but there is still good.

Jay Kenney avatar

Jay Kenney

Thank you so much for your article Elizabeth. It is helpful to know others are sharing in the struggle. Care Partners such as you and my wife, Nancie, are true angels on Earth. THANK YOU! jay

Reply
Kristin Neva avatar

Kristin Neva

Thanks for commenting Jay!

Sonovia Horace avatar

Sonovia Horace

Thank you for sharing your story Kristen. My name is Sonovia Horace, I'm 51 and I was diagnosed with ALS in 2011. My Family and I know all too well the struggle with ALS. I feel bad for disrupting their lives. Lynette (oldest sister) and I live together. Norma (younger sister) is a home health aide. She takes care of me. In the summer, I visit my mom who lives in Florida. She take care of me for 2 months giving them a break. I'm truly blessed to have an amazing family!

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.