Faced with Incurable Disease, Fighting Is Winning

I am by nature a fixer. After my husband, Todd, was diagnosed with ALS, I found out modern medicine didn’t provide a cure. There’s no option for surgery. No drugs significantly improve outcomes. So, I turned to searching the internet for alternative therapies that might help.

“I want to fight this disease,” I told my counselor.

“If you’re fighting, then how do you define winning?” he asked.

I pondered the question before replying. “Fighting is winning. We win if we don’t give up.”

I wanted to at least try supplements, juicing, and nightly massage — things that wouldn’t cause harm or break the bank.

Todd was on board.

We purchased a massage table, and I worked on his spastic arms and legs every night, which helped his weak muscles function better. He walked less stiffly and had more use of his hands.

Since his bloodwork showed he had low levels of magnesium and calcium, he wanted to get off his proton pump inhibitor, which he had taken for a decade to control heartburn.

To alleviate his heartburn, he went on an elimination diet and found he was sensitive to gluten. By avoiding wheat, he was able to rid himself of the chronic condition that had plagued him his entire life.

He took loads of supplements, vitamins, and minerals that, according to limited anecdotal reports, had helped others with ALS. Trying something, even if there was no scientific proof it helps, felt better than doing nothing.

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It was hard to say if the supplements helped, but they were relatively inexpensive and his neurologist thought they wouldn’t hurt. He even recommended a few.

Todd did feel better with what we were doing. He felt less fatigued, and his muscles cramped less. He said he planned to die in the best health possible.

Even with all we did, the disease progressed. Now nine years later, Todd is paralyzed with no use of his arms or legs. He can still speak and swallow, but his breathing is getting dangerously weak, and he will soon need a feeding tube. But I look back on those monies spent on all the supplements without regret.

He needed to try something for our mental health.

We have come to accept the natural course of this disease. Todd has since stopped taking several supplements, as it’s getting more difficult for him to swallow big pills, and some of them didn’t seem to make any difference. He still avoids wheat — though he can now cheat on occasion without consequence — and massage helps him sleep at night.

I’m still a fixer, but in recent years I’ve channeled my fighting energy into managing the disease and making him more comfortable.

I try to stay one step ahead of the equipment he will need at the next stage of the disease. We plan to see a pulmonologist this summer after his next breathing test, and we’ll ask if a BiPAP might help him sleep better at night.

My most recent find, which I’m quite excited about, is an adjustable bed frame that’s compatible with Todd’s Amazon Echo smart speaker. He can ask Alexa to tell his bed to raise the head, raise the feet, or turn on the massage.

Todd is now getting longer stretches of sleep — up to 2 1/2 hours. This doesn’t solve all our nighttime issues, as Todd is still a side sleeper and needs someone to turn him and scratch those incessant itches, but it does give him a bit of independence.

We may not have cured the disease, but we keep fighting to manage this beast, so we are indeed winning!

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