The strange calculations we make while living with ALS

Many of our decisions require a careful cost-benefit analysis

Kristin Neva avatar

by Kristin Neva |

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One of my favorite Christmas gifts this year was balsamic vinegar — two bottles, actually — that my husband, Todd, gave me. Todd has ALS and is paralyzed, so he spends time watching YouTube videos about various subjects. A couple months ago, he came across a video that explained the process of making balsamic vinegar and the various grades of the product.

He ordered two bottles imported from Modena, Italy, for my Christmas gift. Because he knew I’d enjoy the gift more if I understood it, he explained that the small bottle was 100% pure grape musk and aged for 12 years, and the larger bottle was made by boiling and reducing wine vinegar and blending it with pure balsamic vinegar.

I had no idea that the quality and prices of balsamic vinegar varied so much. At the low end of the market, it could cost less than $0.20 per ounce. Something like that might be boiled wine vinegar with sugar added and just a little bit of grape musk. At the high end, a 100% grape musk balsamic vinegar aged for 25 years would be more than $36 per ounce.

The larger bottle that Todd gave me was a middle-tier blend, maybe something around $5.50 per ounce, and the small bottle was close to premium. Either is much more expensive than any balsamic vinegar I find on the shelves of our local grocery store. I was excited to try them.

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My ALS prognosis affects how I wrestle with making decisions

I first opened the larger bottle. It was so good. For the last couple weeks, we’ve been eating it on many different dishes — salads, sautéed vegetables, fish, and even ice cream. If the moderately priced vinegar was that good, what would the expensive version taste like? But if we tasted the premium balsamic, we might lose our appreciation for the less expensive bottle.

“Maybe we should wait until we finish this bottle,” I said as I sprinkled some balsamic on Todd’s sandwich wrap.

“I’ve been thinking that, too,” he agreed, “but I do want to taste it before I die.”

We both laughed at the strange calculations we make when living with ALS. Todd’s breathing is getting progressively weaker, but we don’t have a sense if he has weeks, months, or years left.

Weighing the costs and benefits

After Todd was diagnosed with ALS in 2010, we had to make similar calculations about whether to address several of his unfulfilled dreams, but with the vague idea that he’d have two to five years. He’d wanted a boat, but figured he’d soon be unable to use it. He scratched the boat off his list and let that dream die.

Todd wanted to make decisions that would put me and our kids in the best financial position possible. We had to assess if it was worth the money to renovate our home and bathroom, but we determined our money was best spent building a new accessible home. It was better to be near family, anyhow, and money spent on a well-designed home would be equity for me in the future.

One of Todd’s smaller dreams that didn’t break the bank was a full frame DSLR camera. He thought that we could capture memories for the family, even if I was the one taking pictures.

We also purchased an accessible van and used it to travel to the ALS clinic, go on several family vacations, and attend local events. But if our heavily salted roads bring an early demise to his now 12-year-old van, we wouldn’t replace it because Todd only left our home twice last year — once to visit the doctor and another time to visit the dentist. We’d just hire a transport service for the few times he might need to get out for the rest of his life.

People living with ALS need to weigh the cost and benefit of such purchases. These decisions depend on how fast the disease is progressing and what interventions people plan to take.

Priorities change with a shortened timeline; perhaps build an accessible home with years to live, and perhaps open a premium bottle of 12-year aged balsamic vinegar with possibly only months to live.

Last weekend, we opened the small bottle of balsamic vinegar. Todd and I both closed our eyes for a taste test. We each determined that the two tasted different, but neither of us could tell which one was supposed to taste better.

In guessing which one was the premium balsamic vinegar, we were both wrong. We each chose the moderately priced vinegar as having superior flavor, but the really expensive stuff was almost indistinguishable.

So we’re glad we didn’t wait to open that bottle. We’ll enjoy them both, and when we finish them, we’ll reorder the cheaper option.

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.


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