18 December 2018

Christmas Miracle


When I first learned Lizard has Parkinson's Disease, I spent about six hours researching everything I could about the disease and its treatments.

One of the promising avenues I discovered is mannitol, a natural sweetener found in, among other things, cauliflower and kelp. It had enjoyed magnificent success in mice, honey bees and fruit flies during clinicals, but was dropped because it's not something on which Big Pharma can make zillions of dollars.

The sweetener is found in most sugarless mint gums; it's the white powder on the gum. After reading about some of the testing currently being done non-scientifically, Lizard began chewing the gum several times a day, especially during the two-hour gap between when his official medication wears off and when he takes the next dose. We didn't do more than that until we had talked to both his primary care and his neurologist to get them on board with what we wanted to do, which was, participate in the Clinicrowd study.

We do not recommend trying this without involving health care providers. It's so important, I'll write it again. WE DO NOT RECOMMEND TRYING MANNITOL AS A WAY OF TREATING PARKINSON'S WITHOUT THE SUPERVISION OF HEALTH CARE PROVIDERS.

After working out a program with both the doctor and the neurologist, Lizard began taking mannitol mixed into plain unsweetened yogurt. He began with a very small amount and slowly, over the course of about six weeks, worked up to the recommended dosage.

There were times when he wanted to give up because it seemed to be taking so long. He often said he felt more of an effect when he was chewing the gum than when he was taking the pure powder in his yogurt. It does have side effects. He initially experienced indigestion, and this lasted for about two weeks, then recurred when he began increasing the dosage. Another side effect could be helpful for many suffering from the digestive setbacks of Parkinson's. For Lizard, the mannitol has improved his digestive function. He has to be careful about when he takes it so he doesn't have surprises when he is unable to handle them. But with the help of his medical personnel, he's been able to work out an adaptive plan.

The week after Thanksgiving, Lizard got home from work and brewed his routine cup of decaf, then quickly emailed me.

"I'm drinking my decaf, and it smells heavenly," he wrote.

I was in the middle of a work deadline and didn't immediately pick up on the real meaning of his joy until after I responded about the decaf brand we'd had to settle for on the last grocery shopping trip because the store was sold out of his favorite band. I thought perhaps he might like this new brand better.

After I hit send, I realized he had not smelled fresh-brewed coffee in more than a decade. I immediately responded again and asked him to verify...

"You can smell the coffee???"

Yes, indeed! He could! Lizard had lost his sense of smell before he met me. He could smell some very strong scents, such as when a car hits a skunk on the highway, and we drive by the site hours later. Not the kind of thing anyone wants to smell.

He said the reason to drink coffee is primarily the smell. Aroma of the gods, he called it. He said perhaps the mannitol is working after all. He said he will continue taking it.

The following weekend, I had him take a whiff from my lavender essential oil. He could smell it! It wasn't strong, but he could smell it for the first time ever.

The next day, we made our own little Thanksgiving turkey after picking up a breast for half price. We got dinner in the oven, made a pie, made stuffing, made mashed potatoes and gravy, then went for a walk around the lake, him swinging his arms in exaggerated cross-country ski movements because that also is supposed to help people with Parkinson's.

We got home, unlocked the door and swung it open. I delighted in the aroma of the baking turkey breast with rosemary and sage from my indoor garden.

We had a wonderful private mini Thanksgiving meal, then enjoyed the next chapter of "Lord of the Rings" before retiring to our evening ritual of journal-keeping. He dictated to me, "When we entered the kitchen after our walk, I could smell our turkey. It's the first time I've ever been able to smell a meal we made."

Thanksgiving isn't over. It really is just beginning.

Blessings are unfolding. Miracles are real. Hope and faith are such marvelous things!

8 comments :

  1. Wow, that is great indeed. Goes to show that there are things out there that could very well help, if not cure, if big pharma wasn't all about the $$$$. Hopefully he enjoys smelling all, even the skunks haha

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    Replies
    1. It comes and goes, Pat, but let’s lets hope it’s the beginning of beautiful things!

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  2. I will sure be praying for you guys. Much love.

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    Replies
    1. Thank you so much, Michelle! Merry Christmas!

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  3. What a wonderful story, towards the end of her life my Mom lost her sense of smell and i know how hard that was. I do hope this trial continues to improves Lizards life.

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    Replies
    1. Thank you, African Aussie! Many hurdles remain, but we will never give up hope!

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  4. Yeah - he can smell! We don't realize what an amazing sense it is. I appreciate losing a sense and regaining the sense - my sense of taste. On to new adventures!

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    Replies
    1. Yay, Patty!!! You’ve made an incredible journey!

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