Faced with Incurable Disease, Fighting Is Winning

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.

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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4 comments

  1. geraldine lovelady says:

    I finally am slowly still trying to get over the denial of my husbands future because of the ALS. He now is in his last stages of this horrible disease, being paralized from his toes to his neck. He has to be fed through a tube as he has had a tracheotomy performed months ago. He can not speak, he was able only to move his lips around to mimic a yes or a no, but now that movement has stopped. He only moves his eyes, slowly. Today I went into his room and my heart dropped as I looked at him. The nurse came in behind me and told me he “was sleeping”. She had placed large gauze patches on each of his eyes, covered with tape. I told her no, he isn’t sleeping, he is heavily medicated. She torted with “he doesn’t like the room lights on all the time”….I told her I talk to him, he knows I am there. I whispered to him that I would be back, and left the building with tears starting to fall on my cheeks….He has been in and out of the nursing home, back to the hospital several times for pneumonia episodes. The last time the hospital transfered him back to the nursing home, I requested they keep him a day or two as to move him is hard on him and I wanted him to be strong enough for the ride. They transferred him the next day. An ambulance came to take him to the nursing home at 9am. At 10:30 I get a call from the doctor at the nursing home that she thinks he still has pneumonia and she is sending him back to the hospital for treatment…………he ended up staying in the hospital for another two weeks, getting treated ( continued getting REtreated I should say). He now is back at the nursing home. The one where he will pass away in…

    • fran lancaster says:

      I feel every bit of your pain Geraldine. My husband passed away almost one year ago and that last year dealing with this horrific disease was incredibly tough. Luckily we did not have to deal with pneumonia and having him transported here and there. But the long stretched out days of him lying in one place because he could not move, or talk, and yet his mind was as active as ever, is sheer torture. He had to deal with all his worries and fears and heartache silently, in his own head and even though I did all I could to help distract him by talking to him, reading to him, watching TV together, I knew that when it comes right down to it, it is HIS living hell and I just skirted the perimeter. I pray that your husband passes quickly and pain free. And even though I know this sounds cruel, I do hope it goes quickly as this is no way to live. For either one of you. You will pick up the pieces of your life and carry on. Then it will be your time for sorrow. I am dreadfully sorry and I hope that you have a great support system and God in your life to lean on. Praying for you Geraldine….

  2. Zikra says:

    I have famililial mnd..my mother had it and I know all milestones of the disease…
    I have seen my mother go through every misery and pain and I Know what I will have to go through….

    I have two daughters 11 and 7…who will take care of them I do not know….they do not want to go to boarding schools either.

    Therefore I ahave Pain pain and just pain to deal with…

    In past present and future…

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