The Many Challenges of Getting Out

Kristin Neva avatar

by Kristin Neva |

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Normally, we live much of our life at home. My husband, Todd, has ALS and is paralyzed. He spends his time in his wheelchair set up at his computer, and I can’t go far in case he needs help. Our traveling days are over, and we can’t visit most people in their homes because they are inaccessible to Todd in his 400-pound power wheelchair. But we had a couple fun events last weekend that were doable.

Our friends held their daughter’s graduation party in their yard, and the weather was warm. Our son was eager to get to the party. He is good friends with the graduate’s younger siblings, and they had told him there was going to be a bounce house.

I got myself and Todd ready to go, and as I signed a card, my son asked, “Why’s it taking so long?”

“Because I have to do everything,” I said.

We finally got Todd loaded in the van and left.

Todd’s neck is so weak that bumps in our driveway and on the country roads cause his head to bounce around like a bobblehead doll. He doesn’t like to wear a neck brace, so I drove slowly and carefully, cringing whenever I saw his head bounce.

At the party, the tables were set up not far from the driveway, but the ground was too uneven for Todd to be able to drive the wheelchair himself using his head array. I used the attendant control and parked him at the closest table with other guests.

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I went to get food, and when I got back, Todd was sitting lopsided in his wheelchair. He had me push his shoulders over so he was a little more level.

It’s getting harder to get out of the house, but the alternative is being stuck and bored at home. We are usually pretty isolated, so it was nice to engage in conversation even though I’m sometimes reminded of what we’ve lost.

Most conversation centers around what’s new in people’s lives. What we’ve been up to recently has been getting Todd through a bad cold — not as fun as sharing vacation stories or as interesting as new business ventures. I can relate to others with normal parental enthusiasm when we talk about the activities our kids are doing and how much they have grown up, but our life with ALS is foreign to most people.

The sun descended behind the tree line, and the weather cooled. We started to leave, because Todd gets chilled easily. We chatted with another couple on our way out — until Todd’s teeth chattered from the cold.

“I forget how disabled I am,” Todd said as I loaded him into the back of the van.

Life is much easier for Todd in his climate-controlled office using adaptive equipment to navigate his computer. When we’re out in the elements, the extent of the disease progression becomes glaringly obvious.

We attended my cousin’s wedding reception the next day.

After the jostling Todd took the day before, he asked me to put his foam headrest on his wheelchair for the drive over there, and he wanted me to try strapping his head down. But after only a few seconds, he told me to take it off. He felt claustrophobic with his head pinned back.

Todd’s neck fared better in our driveway and for most of the way there, because even when his head bounced around, it was against soft foam. But the final half-mile was rough when we turned off the highway onto a gravel road, following balloons and hand-written bright green signs directing us to the Mule Barn — an old Jacobsville sandstone building fitted with a new roof and floor. Balloons and white Christmas lights were strung along exposed beams, and a DJ played country music from the back of the hall. It was a cool venue.

As we were visiting with other relatives, I was again reminded of how far Todd’s ALS has progressed. Todd couldn’t raise his voice above the buzz of background conversation and music. I had to be his megaphone, repeating what he said. His voice became increasingly weak, and I had to lean in close to hear him. After a while, he quit trying to talk at all.

We stayed for dinner, and then decided to head home because Todd was exhausted.

My cousin cleared the crowd so I could back directly up to the door. He thanked us for coming.

“I wouldn’t have missed it,” Todd said. “I’m sorry I can’t stay, but I have limited endurance. My life is so easy at home, I sometimes forget how weak I am.”

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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, and are intended to spark discussion about issues pertaining to ALS.

Comments

Todd avatar

Todd

Hi Kristen, ty for your blogs about your family's challenges in dealing with this disease..I just recently got diagnosed with ALS I'm early May but was showing symptoms last December...I just want to read to what Todd is going through and what you are doing to help him as much as possible In getting through it...I'm scared and rely on wife for support aswell...May God bless you, Todd and your family moving forward and continue writing...ty

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Celeste A. Rheaume avatar

Celeste A. Rheaume

Thank you for sharing your story. We who have A.L.S. our families and persons caring for us learn from you and your family. I have A.L.S. I was diagnosed 5/4/20. I believe that I had early symptoms 4 years earlier. I continued struggling to work caring for a private home client 7 days a week - split shift plus. I am in the middle with my abilities. I lost my ability to drive 9/ 2020. I lost my ability to walk 11/ 2020 My grand father, father, brother all had A.L.S. My sister is a carrier of the A.L.S. terminal disease. My dear friends, a married couple took me into their home to care for me. They physically transfer me , one ( which should be a two person lift, both, and if I have an ounce of strength, I use the w/c arms, the 1/2 bed rails, the arms around the toilet with the diagonal wall bar -- to transfer myself , maybe once a day. I don't believe I can transfer myself alone any more. I see them using all they have to transfer me, so I ordered a somewhat new transfer device. *** the IMOVE 2 It is like a w/c but it's seat opens up so your care giver can slide the two half seat pieces under your bottom. They secure the seat in the back. It is adjustable in height so you can transfer the person off of the bed, onto a chair ( that doesn't have arns) a couch, a toilet and it also is a shower chair. I ordered one to help my friends so they don't have to lift me so many times a day. I borrowed a Hoyer Lift from the A.L.S. assocoption. I needed to order two pads. I have also borrowed a hospital bed and for a while had a moterized scooter from them. The local Senior enter has items on loan also. I have not been out in a car s8nce Dec. 2020. I was brought outside in my borrowed reg.w/c onto their porch. I had been in the house for almost 7 months. I saw transfer devices that helps you get into any vehicle on line. One is a portable Hoyer that can be dismantled and placed I to the vehicle. I saw another that has a race that you clamp onto your door hinge temporarily and as needed , it has powerfully magnets that support it. It has a Hoyer arm that you attached here with a bar the you hook the Hoyer pad loops onto. Another is a w/c type device that has a back support that temp, comes off by the care giver, they slide a small seat pad understood you that has 4 clips. The care giver clips them onto the bars of the seat, and replaces the back support. The seat height is adjustable. This transfer seat can be used to get a person into a car. All 3 are on the Internet. Look for transfer lift chairs... I do not have the luxury of a van, or the special devi especially in a custom built home. I am glad for those that do. Bless you and your family.

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JoAnn Cornelius avatar

JoAnn Cornelius

My Husband has ALS and is in this third year. I really appreciate your columns. I relate to everything you talk about and try to always find joy everyday. God Bless you.

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Roxanne Kusske avatar

Roxanne Kusske

I too, enjoy reading your stories Kristin. My husband was diagnosed August of 2019. He has progressed pretty fast, and now is in the final stages, I believe, of the disease. He refuses feeding tubes or breathing machines. He just wants it to be over. It's so frustrating caretaking for him, as he is so stubborn with his refusals. We never go anywhere, he won't leave the house, even to sit on the deck. So it's refreshing to read of yours and Todd's adventures. Thank you!

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Craig Palmer avatar

Craig Palmer

Kristen, I would like to say I enjoy reading your stories and how well they are written and how well you deal with being a caregiver for one you love so much. I was diagnosed in 2016 and I forward your stories to my wife hoping she can find the same strength and inspiration😌

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