Living successfully with Narcolepsy for over 60 years

04/18/2025

Hello. For those who aren't aware, I was moved from my Assisted Living Apartment to the hospital due to my oxygen intake rising. A week in Sarasota and they moved me to Tidewell Hospice in Bradenton.
Barbara reminded me that Jimmy Carter lived well over a year in hospice. The place is pretty nice. But I don't think I have that long left. Doctor told me last month maybe six months. We'll see.
So to celebrate my crazy life, I want my book to become a handbook for narcoleptics all over the country. heck, all over the world. I have a great tip inside for being ready for the big moments--SDW. You'll love it. It saved me countless times.
Please help spread the word on social media, through your narcoleptic friends, at medical fairs, I just want to get the word out about SDW. Sleep, Dream, Wake.
I'm not done yet, I hope to hear from some of you and I will do my best to respond when my assistant is here.
I will also be giving her blogs I've written to enter for me until I can't anymore.
I'd Love to hear from you.

12/09/2024

Life’s Lessons: Changes
John Ames

After 87 long years of life, I have learned my share of life’s lessons. Some narcoleptics have not.
I used to resist change. When I found a toothpaste that worked for me, I stuck with it.
One of the things I have learned with narcolepsy is that change is not bad, it is just—change.
As an older person, I have learned what worked for me. So I love to give advice. I will drop these tidbits from time to time. This week’s will be lessons that caused me to make a few changes.
Please, Comment back and let me know what changes you have made as you accommodated your narcolepsy.

Lesson #1)
In graduate school, I lived off campus and drove to class. First thing on arrival, I’d stop in at Baskin Robbins for an ice cream cone. I always got sleepy after finishing it up. Took me a long time to accept the ice cream, or rather the sugar in the ice cream, was knocking me out. I’m not usually a slow learner, but I was deliberately ignoring the red flag.
I eventually gave up the sinfully delicious ice cream.
If your body is sending you consistent signals, listen up. This lesson probably applies to most folks, but especially to those with narcolepsy.

Lesson #2)
Another change I made much later. I started smoking when I was 15. Later, while in graduate school, the cancer scare arose in the national awareness. (yes, I’m that old).
I had a pain in my throat and feared it was cancer. Turned out, my voice box had four protrusions, one badly inflamed. Thankfully, not cancer, but it was a good wakeup call and got my attention. After 20 years it was time to quit and save my voice box and my lungs. I quit smoking when I was 35, over 50 years ago.
If you have an addiction, deal with it. Or it will deal with you.

Lesson #3)
I was in the service, in my 20’s when I was diagnosed, so it was not unusual that I spent some time carousing, going to bars, and looking for love in all the wrong places. Never found it, so I have no advice to give you on that count.
I wasn’t a heavy drinker, but I learned I was destined to be a lightweight on one of my early visits to a bar. I had a woozy feeling when I laid down. I awoke around 3am feeling as though I needed to vomit. I abhor the entire process of vomit, whether it is a dry heave or a response to illness. It is repulsive to me. Nope. Not going to happen again. Being a big guy, I can drink a fair amount, my body does not like alcohol. A couple drinks and my body senses the toxins and wants to heave. I listen to it, and only have a couple beers a year. Hey, Pizza.

Lesson #4)
I now have COPD and for the most part I am oxygen dependent. Real men do sit down to p*e, especially if they are out of breath when they get to the toilet.
And if they miss and don’t clean it up, their wife will yell.
Or if they don’t want to lift the seat because they know they will forget to put it back down, and their girlfriend will fall in and be furious.
So, gentlemen, it is cleaner and more comfortable to sit when p*eing.
And to cap off the advice on this lesson, Science has discovered that it is actually healthier for the prostrate to sit while p*eing.
Who knew? Now you do.

Lesson #5
This also had to do with my COPD. I learned that the less I weighed the easier it was to breathe. Over the next several years I lost over 100 pounds. I discovered as you solve one problem, often the next one becomes easier to solve.
Narcolepsy with cataplexy has provided me many opportunities to learn Life Lessons.
Hope you enjoy my Life Lessons on Changes.
John Ames, Author, 60 Years Living Successfully with Narcolepsy,

Living Successfully With Narcolepsy

11/25/2024

Living Successfully With Narcolepsy

11/25/2024

I have desensitized myself from the vagaries of Facebook so I can write about it.
A month ago I read a mother's blog regarding her son's recent narcolepsy with cataplexy diagnosis. I am 87 and have lived with Type 1 narcolepsy with cataplexy. I wrote of my experience and went to spell check, only to have the entire response erased. I was so annoyed, I gave up.
The mother had stated he was only 14, obsessed with football and upset that it prevented him from going out for the team.
I wanted them to know my experience. It was more related to individual sports rather than team sports, which might make a difference, I considered sports a hobby not a passion, so that also affects the outcome. With those caveats, I will continue.
Before diagnosis I played tennis. I wasn't great, but decent. The ski club I joined after my diagnosis played tennis in the summer. I joined them, practiced for an hour or two, banging the ball against the wall, no problem. Joined a group. Got on the court, hit a couple balls over the net. I served the ball to my opponent but when it returned, my arms remained at my sides. Cataplexy!
It has to do with emotion. I needed to detach myself from my emotions to play adequately. Each person must find their own way to do this.
Another time, shortly after learning of my narcolepsy, a friend was unable to make his slot on the bowling team and signed me up without asking.
They didn't want to forfeit, so I gave it a shot. Tried to play like I used to. Throw the ball down the right side, lift the ball at the end of the throw to spin it to the left and hook it into the sweet spot and get all the pins down for a strike.
The ball drifted halfway down the alley and into the gutter time after time. I finally figured out it wasn't spinning because my fingers got cataplexy and were not providing spin. With a bit of experimentation I found I could throw a straight ball and not embarrass myself.
Soon after my diagnosis, I learned cataplexy didn't affect my lower limbs, so I could ski. You have to make decisions about moving your feet and move instantly, so there is no time for cataplexy.
When I am walking downhill, I still get that sinking feeling.
My message to the mother and her son and to anyone out there with cataplexy, find a sport where emotion does not play into it. A lot of the martial arts may be able to help with this.
I never did figure it out with baseball'

John Ames, author, '60 Years Living Successfully with Narcolepsy.'

Living Successfully With Narcolepsy

11/25/2024

I don’t know about you but at 87 years old with narcolepsy and cataplexy, I have slept in the best of places and the worst of places.
The worst (not that bad really) was in Philadelphia in my late 20's to early 30's. My friend had a duplex, he lived upstairs and I had the downstairs apartment. We were of the age to go out to bars to pick up girls.
I never drank that much and my friend drank more, but not to excess. I don’t know if its was the drinking, or his personality but he often would stayed until last call. There were times I was so tired I had to sleep.
One night it was too cold to sleep in the car, no booths or chairs, just bar stools. I knew we'd be longer so I put three barstools together and laid down on top of them and slept.
I was able to ski because I don't get cataplexy in my lower legs and feet. I joined a ski club and through it there were bus trips to several ski areas. I hadn’t yet figured out my power naps (sleep--dream--wake up) so to prevent falling asleep on the chair lift and missing the drop I placed a stone or small rock in my back to keep me uncomfortable. I was dressed for the cold and warm from the exercising so there was no worrying about my body temperature
Another place I took naps was at theme parks. There was no way anyone would waste time returning to a vehicle. I looked for flat out of the way spots. In 2 parks I found walls around big fountains that had flat stones on top of the wall. A good, relaxing place to recharge.
My cousins live outside of Minneapolis, MN and have a cabin on a lake 130 NW of their town. I visit several other relatives there. We go to the local county fairs. All of us went our separate ways and met back to the ice cream stand at days end.
One year I felt in need of a recharge and noticed the long, narrow buildings where where companies or individuals sell their wares. Wooden benches lined the end of the building. I was tired and there was a bench beckoning me, no-one sitting on it, so I laid down facing the building. I feel asleep quickly, and the next thing I knew someone was shaking me awake. When I sat up and turned, the closest person was just an old man in his 70's striding away. Who the hell would come out of crowd just to come over to wake me up. Thinking it over later, I figured it was an old farmer whose parents raised him to believe no one should sleep during the day?Maybe he thought I was dead? Who knows?
One of the best places I found to sleep was is at the dentist. They give you a wonderful gas and Novocain.
Another great place is at a church with thick padded cushions and the minister droning on with a long sermon.

John Ames-author- ’60 Years Living Successfully with Narcolepsy.'

Living Successfully With Narcolepsy

10/28/2024

We live in a mobile home park in Bradenton FL, about 40 miles south of St. Petersburg/ Tampa. Our home is across the street from a canal that connects directly to Sarasota Bay and the Gulf of Mexico. Our location is considered the highest risk in a hurricane and we must evacuate whenever the county declares a flood emergency.
You guessed it! The County forced us to get out twice this past month because of two major hurricanes impacting our area. Because I am on oxygen and need electricity for my oxygen concentrates, when we evacuate we have to go to a special needs center. In Manatee County our hurricane-proof shelter is a middle school about 30 minutes away.
It's a hassle to get packed, put the stuff in the car and drive over there. The school is relatively new and in good shape. The 150 employees of the Bradenton Health Department are required to go to the school to help out, so there's a lot of assistance available to deal with the nursing home and elderly mobile home park disabled with special needs.
The rough part was trying (and I do mean 'trying') to sleep on the most uncomfortable cots. They are newly made, with synthetic materials on an aluminum frame--nothing like the old army cots. There is a hump in the middle that digs into your back. The ache and pain I felt in the morning verified I wasn't sleeping in my bed. The cots are set up in the school gym. There were about 120 people in this special needs shelter. Helpers watched over us to assist with any needs, but the circumstances required the lights remain on all night.
As a narcoleptic, I have poor quality sleep. Add to that a trek to go to the unfamiliar bathroom, the overhead lights, the hump on the cot, and strangers' conversations rising and falling around me, and I didn't have a good night sleep for 4 nights.
It all adds up. It took a week to recover.
When I'm home I have a specific sleep regimen that works best for narcolepsy and I also have a specific diet that I follow.
The shelter's idea of meals was a fast-food menu. But in an emergency who can complain?
When we got home after the 1st hurricane, Helene, a surge of 5 feet on top of high tide caused water damage to those that weren’t above that level . Thankfully our mobile home was above the surge. Water damage to a home can be very expensive.
When my wife and I arrived home from the second hurricane, Milton, we didn’t see any damage to our home. But after a roofer looked at our roof and assessed it would take $5,000 to fix it.That was minor compared to the damage we saw all around us.
Of the 1200 mobile homes in my waterfront park, it was estimated 2/3 had some damage. The area looked like the pictures we see of the Ukraine. Havoc everywhere. Trailer roofs, carport roofs, porches, and insulation all over everywhere.
Sixty percent of the residents are ‘Snow birds,’ people who live up north but have a place here. They had to find out about their place by phone. Some will never return. So I count us as lucky. We survived two hurricanes in two weeks. The home needs a little work, but everyone is safe and sound and we still have our waterfront home to enjoy. Now I can get back to my schedule and get some rest.