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Bill Lyon’s fight with Alzheimer’s: He never, ever quit | Perspective

Read Bill Lyon’s complete series on Alzheimer’s disease.

In this photo from April 2017, Bill Lyon, and his wife Ethel, back right, settle into their stair-free apartment at Wesley Enhanced Living Main Line.
In this photo from April 2017, Bill Lyon, and his wife Ethel, back right, settle into their stair-free apartment at Wesley Enhanced Living Main Line.Read moreJessica Griffin / Staff

Legendary Inquirer sports writer Bill Lyon died at age 81 on Sunday.

In 2016, Lyon stunned readers by revealing his Alzheimer’s diagnosis. Over the next two years, Bill wrote candidly about his illness, nicknaming it Al — or in feistier moments, That Rat Bastard. He chronicled what it was like to move out of his multi-story home and into a place with no steps, a necessary adjustment as he got sicker. He shared anecdotes about using a cane and working with therapy dogs.

“My intent is to write columns about my dementia,” Lyon wrote in 2016. “My hope is that the columns will be cathartic and perhaps be of some help to anyone else who’s going down this same long and winding road ... My intent is to write until ... well, until I can’t.”

Eventually that day came and Lyon shared his struggles with writing — both the mental challenges from increased writer’s block, and the physical impediments like tremors that shook his hands so much he couldn’t type. But even after that, Lyon continued to share stories, dictating columns to Inquirer editors who visited him.

What stuck with readers most about Lyon’s story was his fighting spirit. In his inaugural Alzheimer’s piece, he wrote, “You wake up one morning and something is missing and you’re not sure how or what. So what do we do? Resist. And persist. And never, ever, ever give in.” Lyon didn’t give up, even after the tragic loss of his beloved wife and “best pal” Ethel in 2018.

In his last column for the Inquirer, Lyon wrote of his sincere hope that a cure for Alzheimer’s would be found so that others who had been diagnosed with the disease could eventually say, “Up yours, Al!

Read Bill Lyon’s complete series on Alzheimer’s disease

My Alzheimer’s fight: Never, ever quit

Al is an insidious and relentless little bastard, a gutless coward who won’t come out and fight. Instead, he lies in ambush in my brain, and the only way I can put a face on him is to look in the mirror.
So what do you want to do? the man in the white lab coat asked.
I should very much like to kick Al’s ass, I said.

Read the full column.

My Alzheimer’s fight: Adjust, adapt, push on

With your tremors tap-tap-tapping at warp speed, try to tie your shoelaces. Thank you, whoever invented Velcro.
Of course that still leaves the socks. And the assumption that you have the right foot where the right foot goes. And the left foot - look, I’m happy if I can average three for 10. That gets you in the Hall of Fame, right?

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My battle with Alzheimer’s: Mind, body, meds

I awaken each morning - thank you for that - and gingerly swing my legs over the side and down to the floor. It sounds like the Gunfight at the OK Corral. Slowly I stand upright, and this sound is like milk being poured on cereal . . . snap . . . crackle . . . pop . . . .
And so another day is launched and it sure does beat the alternative.
What, I inquire of my body, new surprises do you have in store for us today?

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My Alzheimer’s fight: Shaping other minds

How come I can remember the lyrics from a long-forgotten ballad, but I, for the life of me, can't remember what I had for lunch?
There's long-term memory and medium-term memory and the ultimate indignity, the dreaded short-term memory, which involves the marching from room to room, fuming and venting, and where-oh-where are my &*#@ glasses, and the answer, of course, is on top of your head, you poor pathetic wretch.
Thanks, and what’s your name again?

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My battle with Alzheimer’s: Finding my way back

I walked on, panic-stricken, past banks and funeral parlors and schools, and looked up to find myself standing in the middle of a median strip on West Chester Pike with traffic roaring past on both sides. I had no idea how I got there. It was as though I had been sleepwalking.

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Bill Lyon: In battle against Alzheimer’s, giving ground only grudgingly

All in all, I have good days and some not-so-good days. Sometimes I can dress myself and sometimes I can't. Sometimes I can read one paragraph all the way through and sometimes I can't. Sometimes I get discouraged and sometimes I - no, I won't give in.
I do not delude myself. Al is a killer, but I try at every turn to cut him off and stomp on his mangy butt. I’ll go kicking and screaming all the way, hoping this journal will be of some comfort and inspiration to those who have been diagnosed and to those who care for them.

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Bill Lyon: Secret weapon against Alzheimer’s

Of all the meds and all the walking and all the therapy, what keeps me going, always so hard and so fast, what makes me want to stick around for more, stands at the top of a hill and calls to me: “Come on, Pop-Pop. . . Come on. . .”

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Packing up a house full of memories while battling Alzheimer’s

The place in which we have lived the last 42 years . . . the place in which we have raised three generations . . . the place into which we have stuffed a basement and a garage and an attic and a backyard storage shed with . . . with, well, good grief, and did we ever throw anything away?
But we will be now, because we're leaving it.
For ever.
Each day the pile of discards grows higher.

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Coming home, to the land of no steps

One step . . . one lousy little step . . . one %&#%$!!!! step, and I ended up ingloriously sprawled on a surface of unforgiving linoleum that had been laid over concrete that you could build an interstate on.
I noticed I was leaking blood from my left knee, which was swelling into a rainbow of colors and was sending a rather urgent message to my brain, to wit: "Damn but this hurts."
I couldn't move.
I tried to yell, but all that I could coax out was a pathetic squeak. How humbling. How unmanly. I was living a TV commercial. I was also hearing that familiar mocking of the rat bastard Al, my Alzheimer’s nemesis: “What’s wrong, Candy Ass? Can’t get up?”

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Bill Lyon: Time to shine a light on Alzheimer’s

What we don't know we fear and we lock up and throw away the keys. So for many of my generation there has been a stigma attached to whatever that is in the basement … and never dare speak.
It’s time to shine a light on Al. So now we mobilize, starting with public awareness. There are more than five million of us out there, and the toll is rising, just as our population rate rises. Remember that Alzheimer’s is called the Family Disease because in virtually any household there are apt to be patients and those who care for them.

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Bill Lyon: Still lessons to learn while fighting Alzheimer’s

A confession: The cane cast an ominous shadow of dread over me - I saw it as a symbol of impending doom, a fate hopelessly sealed.
There is, after all, a progression of descent, isn't there? Isn't this the cycle of decline?
First a cane.
Then a walker.
Then a wheelchair.
Then . . .
But not me. No sir, no damn way. I had made a silent vow when the Alzheimer’s first hit, a vow of defiance. You’ll not be getting me off my legs. I’ll stand 'til the very end.

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Ghostly visits and the power of hugs

Can't say for sure when I softened. But I think it was around the arrival of Al. Alzheimer's brings with it sorrow and misery and before I knew it I was offering solace and comfort to those whose lives he touched.
We all, every one of us, has a load to carry, and while a hug may seem a trifle, it has remarkable recuperative powers.
And isn’t it deliciously ironic how this show of affection just fries Al?

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Bill Lyon: Alzheimer’s chips away at your ability to communicate

I taught myself how to type as a sophomore in high school in 1955. You know, two fingers, hunt and peck. I got to be pretty good, and pretty fast, which pleased me greatly. I used to be able to make a typewriter sound like a machine gun.
But some months ago I found it was taking me longer to write. Then pretty soon I could barely put pen to paper. First, the paragraphs took a lot longer, and then the sentences. I couldn’t get it back. It’s writer’s block, and we all know what that is. But this was different because it was not only mental but physical. Literally physical. I couldn’t lift my hand up off the desk.

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Life after Ethel, and why I’ll never, ever give in to Alzheimer’s

My wife is gone now, and I struggle with what I am supposed to do. Everyone grieves in their own way. There is no manual for grief. What you should do, I am told, is to go ahead and mourn. Then celebrate the good times, and we had a lot of those.
So I’m going to resume my crusade against Alzheimer’s in her memory, and remember the mantra we shared: resist, persist and never, ever give in.

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How two Bernese mountain dogs are helping me battle Alzheimer’s

When Darla and Harvey make their rounds, Darla instinctively goes to the walkers and wheelchairs, while Harvey poses for pictures. Meanwhile, Al mutters and stews. For all the meds that are forced on us, for all the surgeries and rehab, none are quite as soothing as a dog's nuzzle.
We are tethered to each other, man and dog. They reach the deepest part of us.

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Fighting to the finish for an Alzheimer’s cure

Give us time, the researchers say. Funny thing is, that’s all we’ve got.
You know the drill by now: Resist. Persist. Never, ever give up.
In my mind, I play games with the Cure. I envision a lab technician drops a beaker of some exotic drug, the glass shattering on the floor, splashing behind a desk, there to merge with another drug. Eureka!
If only it were so easy.

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