Let’s call this my Daily Journal, (put date here).
I’m stuck right now. And p;art of the intent of this blog is to describe what is happening. I took an extra pill for my hands which don’t want to type.
Sometimes right after lunch I get more ‘Lewy.’ And I have several tasks ahead of me. Typing slow. I bounce around ideas in my head.. Lewy bounces them back. I can’t stay long on a train of thought. I think of a song. I feel calmer. I still do’t know how these columns are going to turn out. I have these great ideas but they slip. One thing I just remembered: What to do with CDs . I hope I saved the link. There was a beautiful bird bath.
Back to a story on what we are doing with the money we raised over the weekend. How much? What research is it paying for? Target alpha-synuclein proteins. How? Who won Mike Madness. Ask about nonprofit status. I’m feeling better. I got this. Though I just remember I need to read back over some of my posts because I was noticing typos but wasn’t in the edit mode. Now I’ve forgotten which post they are in. I think I have 400 posts or more llive.. I learned of a third person who told me they are reading the posts from top to bottom or bottom to top.
Uh huh.
This is my journal as it sits right now. 2:18 p.m. today July 25, 2019.
Everything is OK right now.
Back in at 3:11 p.m. Had news today from two acquaintances. Different situations: the on who received the diagnosis of Lewy body had been long seeking explanations for a variety of symptoms. He was in much pain physically and psychologically. He welcomed the diagnosis. Another person I’ve talked to is starting to exhibit some classic symptoms. He’s praying he doesn’t have Lewy body dementia, but he’s preparing himself for the worst.
Porter with dad Michael at 12-month old birthday party. (Mike Oliver).
I started writing about Porter Heatherly long before I was diagnosed with my own brain disease. The first story was published Oct. 31, 2013. It was based on my visit to the Heatherlys in Opelika on Porter’s 1 year birthday.
Here’s how that story started:
Like a big boy, Porter Heatherly sat back in the infant seat like it was a throne, holding up his arm from time to time and smiling as if to acknowledge his subjects.
Two dozen people, many relatives, stood around the blond boy in the bib and sang Happy Birthday.
Cameras and camera phones snapped and flashed.
A few brushed away tears.
Porter was 1-year-old on this day, Sept. 14, 2013.
I continue.
Sara Richter and Michael Heatherly were high school sweethearts in Cullman, where they both grew up. Both went to Auburn University, got married, got jobs and settled in neighboring Opelika.
Unbeknownst to them, both were carriers of a rare genetic disorder.
-=-=-=-=-=-=-=-=-==
I learned a lot that birthday visit in Opelika. It would not be my last Porter birthday visit. I met family and friends. I found out about the disease.
A Heatherlys Christmas with Porter.
Porter had a rare incurable genetic condition called gangliosidosis type 1 or GM1.
I later called the UAB specialist who diagnosed Porter.
“There is no cure,” the doctor said. “It’s an inherited disorder and progressively destroys the nerve cells in the brain and spinal cord.”
She said life expectancy is about 2 years.
I also learned that this 1 year birthday wasn’t really his first birthday celebration. The parents had decided to celebrate Porter’s birthday once a month. So, in their eyes, it was Porter’s 12th birthday, going by months.
I had some quiet time on the drive back to Birmingham and the more I thought about it, the more I loved the Heatherlys’ idea of monthly birthdays.
By doing that, the parents were choosing to stretch time making the most of the time remaining. They may not have had more time, but they sure as heck could create more moments.
Told that Porter’s life expectancy would be 2 years, they chose to have more than 20 birthday celebrations instead of just 2.
The Heatherlys ended up having many more than 20 birthdays with Porter but let’s not get ahead of ourselves here.
I was so impressed with their decision that I asked Michael and Sara if they would help me put together a post for AL.com on each monthly birthday, the 14th that would give an update on Porter’s condition, activities and such. They bravely said yes. They bravely agreed to, in this time of grief and hardship, open up their lives for the sake of helping people and research.
The monthly posts, which were usually in Sara’s own words but sometimes in Michael’s, were successful, chronicling medical triumphs and set-backs, good days and bad days, Auburn football games attended, fishing exploits and other activities. But they couldn’t help but reveal that the nature of Porter’s illness meant that he was slowly getting worse.
Porter was regressing as he passed his 24-month birthday which was his average expected life expectancy. He continued through and past his 3rd year. All the while, he was helping raise awareness and money for research.
The irony as you can read in my earlier stories is that Auburn University was a world leader in this kind of research, a fact the Heatherlys accidentally discovered at church when they ran into a researcher there.
(A side personal note: The Auburn United Methodist Church is the same one I attended as a child when we lived for a short time in Auburn during the 1960s. And to continue with these so-called coincidences, the research was being conducted through the Scott-Richey Foundation, a research funding entity created by Dr. Frank Hoerlein, who was a friend, teacher and colleague of my father, John E. Oliver.)
Sadly, although there had been some great breakthroughs, a medicine to stop the disease’s growth or prevent the disease was not yet developed.
With GM1, Porter’s body lacks enough of an enzyme to break down GM1 ganglioside, a substance important for normal brain cell function.
The parents understood the reality of what would happen.
Porter’s smiling face, captured in memories and photographs at his 12-month birthday had, as he faced his 4th year, faded to a mostly blank stare.
Moving forward to present day, I struggle to type now because of some symptoms I’m having at night affecting my right hand and arm. If you are on this blog you likely know my story. If not check out the About Me button at the top of the page. Or a story I wrote after diagnosis.
I have Lewy body dementia, a degenerative brain disease (talk about irony).
It’s not like Porter’s, which starts at birth. But it is incurable like Porter’s. In other words, realistically, I will not get better only worse.
I have to say, I fear the blank stare.
The average life expectancy after diagnosis is 5 to 7 years.
Or, let me put it another way. My average life expectancy after diagnosis is 60 months to 84 months. Thanks Heatherlys. I’m 58 now, I’ll easily live to be 100 with the Porter method of counting.
I am also vowing to celebrate (however small the celebration) my birthday, Nov. 9, every month on the 9th.
Porter doubled his expected lifespan. Porter died, Nov. 10, 2016, at age 4.
That’s about the time that I got a confirmed diagnosis of Lewy body dementia. I just now noticed that as I wrote these words. (Note to myself: Check the date of my official diagnosis.)
At the time I wrote this for AL.com:
Porter Heatherly, the 4-year-old boy with a rare genetic disease called gangliosidosis type 1 or GM1, died Thursday morning at his home in Opelika surrounded by his parents and a hospice nurse.
“There is some kind of relief to know that the fight is now over for him, to know he is not suffering anymore,” said his mother, Sara Heatherly.
The Heatherlys say that they will continue to work to help Auburn University where researchers are looking for a cure for the inherited disorder. The disease progressively destroys the nerve cells in the brain and spinal cord.
Porter’s father, Michael Heatherly, said between $90,000 and $100,000 has been raised for Auburn research at two fund-raisers to benefit CureGM1 Foundation.
“He’s impacted so many people through helping the research and raising awareness of the disease,” Michael said.
AL.com began following Porter soon after his first year’s birthday with monthly updates labeled Porter’s Precious Birthdays.
Sara once said in one of her updates that it was amazing how much she and Michael could love someone who couldn’t talk.
“Porter never did reach out to touch my face or things like that, but there was a special bond with him,” she said.
What did Porter do? What did his life mean? He couldn’t walk, talk or even roll over. As time went on he didn’t interact at all.
But he inspired thousands. He brought people together in a circle of love. He helped raise money for research which hopefully will help other children in generations ahead. He touched my heart.
Today, Feb. 14, Porter would be celebrating his 53-month birthday.
