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WELCOME TO MY [BILL ANDREWS] ALS UPDATES - AND MORE...
On 21 Nov 2016 I was diagnosed with ALS - LOU GEHRIG DISEASE
I will be updating this site as I go with both ALS and Life's Experiences
Thank you for your patience!
William Aloysius Keane:
Hunter S Thompson:
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06/01/2017 SENIOR CITIZEN LUNCHTIME CHAOS
AKA TEAM WINDANSEA VISITS Silvergate Retirement Residence : THANK YOU - THANK YOU TO SILVERGATE'S MANAGEMENT AND STAFF FOR TOLERATING A BIT OF WINDANSEA MADNESS!
Currently, I live - in surf world measurements - light years away from the La Jolla area where I spent the majority of my life, and, luckily for me, I have family / friends who willingly visit me.
By numbers, the majority of Silvergate's residents are women, all of whom are nice, kind, polite, civilized .... just like our own mothers / grandmothers.
Today's Sea of Lunchtime Tranquility had a mini, err, major short term disruption to its normally glassy, surfless conditions:
I had the pleasure of welcoming seven of my good friends from WindanSea, and sharing, along with my co-residents of Silvergate our normally tranquil lunchtime experience.
[my 95 year old mother, Mrs. Big Pink, has loved interacting with my surfing friends ever since we moved to La Jolla in the fifties...she says to this day, that surfers remind her of this country's pilots, of whom, my grandfather, Brigadier General W.P. Hayes, was one of the true icons of the period, way before WW II ... the manner in which we use our hands to demonstrate wave size, direction, etc.]
I wish my mother could have been here for our lunch, she would have been clapping and rolling - almost - on the ground with laughter.
Compared to the WindanSea Surf World, we were exceptionally well behaved [almost choirboy like] although a couple of non-approved words may have slipped out, a few digits may have been displayed, and yes, we may have been a bit loud, but not vulgar [I guess "vulgar" is a relative definition].
[Residents' anti-acid and aspirin use may have spiked shortly after lunch??]
A number of residents actually thanked me for having this once in a lifetime WindanSea-ers visit!
[Actually the WindanSea-ers may be allowed to visit again, given adequate advance notice]
From my Friend Stewart Parks to my son Eric: "I think we managed to get out of the place without breaking anything, Eric, except maybe the prevailing climate of dignified peace and quiet at the facility."
I am thankful / lucky that I have family and friends who visit me on a regular basis ... other residents may not be so blessed.
Now that I think about it, despite the interruptions to Silvergate's lunchtime routine, visits from family and friends may bring a ray of light, hope and levity not only to the primary recipient [me] but also to those who miss their loved ones.
Actually, some of the chatter from my friends, combined with granddaughter Audrey's cartwheels down the hallways and more, demonstrated to many, that LAUGHTER may be our best medicine / friend.
Felipe, Gordy, Mark, Stewart, Bill, Pierce, Scot, BA
05/30/2017 SLIPPERY WHEN WET / NAKED YOGA
A couple of days ago, I finished taking a shower - and as always - I soaked the bathroom floor.
I took one step, completely off center, and I did a great - in my opinion - slip and slide on to the wet floor.
As I was lying on the floor, I thought about one of the first surfing movies I had seen, in awe: "Slippery When Wet" (1958) Pacific Beach Junior High School.
Wet surfboards are slippery [even coated with wax], but not nearly as slippery as a wet linoleum floor.
Anyway, two weeks ago I could - with a great amount of effort - pull myself up from the floor, today impossible.
I can barely lift a cup of coffee using 2 hands, much less my 175 pound body of mush...the small amount of muscle I had previously is just about gone.
I was able to get into a sitting position, and using my arms as crutches, I scrunched across the floor to the middle of my room. My cell phone was in the bathroom - there was no way I was going to swim back over to it, and the distance from where I was sitting, to the "Help, I've fallen and cannot get up" alert cord was about 15 feet away by the door to my room.
- SO -
It had taken me approximately 10 minutes to go 15 feet from my bathroom floor to the middle of my room, and it would take me another 10 minutes or so to scrunch to the alert cord on my wall. I needed a few minutes to gather my limited strength, and as I was lying - naked - on my floor, one of my breakfast club buddies came by to check on me.
She knocked on my door, entered and saw me on the floor. After she recovered from this horrible sight, she asked: "Bill, are you doing naked yoga?"
She called for help, the caregivers came in and stood me up - OUCH - what could be worse nightmare for young female caregivers than to see a naked, soaking wet, prune-skinned, pink bodied, senior citizen??!!
05/17/2017 A MOVE AND MORE
My ability to move about safely, much less drive was becoming more and more apparent that it was time to move to a community which was more inclusive and safe.
My days of surfing on a daily basis ended last year, around the middle of June.
Beginning in January of this year, my sons felt - as I did - that it was time to move. My sons did an exhaustive search for an affordable place for me to live...affordable and close to Brian, Eric and their kids.
The choice was a great one: Silvergate Retirement Community in San Marcos.
Close to the grandkids, meals provided, at a reasonable cost, any assistance I may need, and as a bonus, I'm only a couple of miles from my mom, Mrs. Pink
Additionally, I entered the UCSD Health System where I receive the latest in ALS treatments, and therapies which include Occupational, Speech, and Physical.
The ALS Association, Greater San Diego Chapter has provided me with a loaner electric wheelchair, which will be replaced with my new chair, thanks to UCSD, in about 60 days.
01/21/2017 QUALITY OF LIFE...A MOVING TARGET, OR?
My oldest son Brian is the most pragmatic of my three sons.
All three of my kids were over at my house during Christmas. The goal was to establish some sort of baseline and target for how long I could live by myself how soon would I have to go into some sort of assisted care, and how I quantify quality quality of life.
01/17/2017 EMOTIONAL / SPIRITUAL / STRENGTH Vs PHYSICAL WEAKNESS
For the past three years or so, I noticed that my physical strength was waning.
I've previously posted that my youngest grandson, Baby - The Strong - Leo is now much tougher than I am in our very scientific strength tests - video evidence / instructions to follow.
A bit more than two years ago, I held Baby Leo in my hands, he was clinging to life, months premature.
How many barriers were there to his survival in just a few days?
Certainly more than I have ever faced in over 70 years on this planet...emotional / spiritual / physical strength all being tested.
My father told me, almost from birth, that boys --- > men do not cry!
I followed his orders to the letter.
As I became physically stronger over the years, I stached my emotional strength somewhere, hidden, but not gone?
This ALS thing has become to me, to coin a phrase : "A rude awakening"
It helps me to reflect, and, along with a religious epiphany of sorts, that physical and emotional strength are not mutually exclusive, but work together as a team - I'm learning - finally - how to become a team player.
01/13/2017 THE MYSTERY OF ALS ....
INFO OVERLOAD?? - NAW, SIMPLY ADDITIONAL INFORMATION FOR MY KIDS / FRIENDS IF THEY ARE INTERESTED
Incidence of ALS :
"According to the ALS Association, approximately 5,600 people in the U.S. are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time, approximately 300 in San Diego County alone.
01/12/2017 I CAN SEE CLEARLY NOW
I never paid much attention to the words of songs which I liked - mostly just the music, not the words.
I finally have started paying a bit more attention to the message, not just the messenger.
My life actually has much more clarity now!
One of my favorites from the the 70's:
I Can See Clearly Now
"I Can See Clearly Now" is a Billboard Hot 100 Chart #1 hit song, written and recorded by Johnny Nash. It was a single from the album of the same name and achieved success in the United States and the United Kingdom when it was released in 1972. It was covered by many artists throughout the years, including a 1993 hit version by Jimmy Cliff, who re-recorded it for the motion picture soundtrack of Cool Runnings, where it reached the top 20 at #18 on the Billboard Hot 100.
I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It's gonna be a bright (bright), bright (bright)
I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I've been prayin for
It's gonna be a bright (bright), bright (bright)
Look all around, there's nothin but blue skies
Look straight ahead, nothin but blue skies
I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It's gonna be a bright (bright), bright (bright)
01/10/2017 THANK YOU
Before I began surfing, I played a lot of baseball, and one of my heroes was the legendary Lou Gehrig – He died shortly after giving a thank you speech to his friends, family, and fans in Yankee Stadium – I cribbed most of below from his speech, and his family recognized that his love for them did not have to be included in his thank you speech.
Some of you may know that a couple of months ago I was diagnosed with ALS [Lou Gehrig Disease] and yet today I consider myself the luckiest man on the face of this earth. I have been surfing for more than 60 years, and as recently as May, 2016, I was fortunate to have ridden some of the best lefts in the world: Chicama, Peru.
I have been the recipient of the good eye as well as the stink eye…as well as a few pats on the back, and – naturally – a few well deserved punches to my mug!
Look at some of the bigger than life men with whom I grew up and have known – the legends of which will never die.
Which of you wouldn't consider it the highlight – well maybe not a highlight - of one’s surfing’s career just to associate with them for even one day?
Sure, I'm lucky. Who wouldn't consider it an honor – well maybe not an honor - to have known, and surfed with Butch, Brud, Croteau, Keating, Kenyon, The Mac Medians and a host of others, at some of the most famous surfing locations in the world.
Also, the builder of the WindanSea surf club, Chuck Hasley, and those, for over the past 50 years, who have kept it going, most recently Chip Hasley, Scot Cherry and Team Bill – Brazil – Fitzmaurice.
Sure, I'm lucky!
When we moved from – gasp – La Mesa in the early 1950’s to La Jolla Shores, and I began surfing, my goal was to become good enough to surf WindanSea.
It took me close to ten years to finally – another BA highly subjective statement – to surf WindanSea, and not to be called a Shores Kook – well maybe not so much to my face?
When I finally graduated from La Jolla Junior / Senior High School in 1962 – I went to the University of New Mexico on a scholarship, and believe it or not, there were a couple of other surfers who were sent there as punishment for a year or so, before their parents relented and sent them to UCLA or USC.
On Spring Break they begged me to take them to La Jolla, and they were schooled in the fact that Black’s, the La Jolla Reefs, and even The Shores were not the same as Doheney and San Onofre.
The list of great surfers, and citizens, who grew up / and are growing up in La Jolla would fill a New York City phone book…no sense in even attempting to list them.
Again – I am so lucky for have had the opportunity to live and actually thrive in the La Jolla environment when one did not have to be a zillionaire to purchase a home in La Jolla, and we were blessed to enjoy uncrowded beaches, waves, and of course very little traffic on the roads.
Thank you again from the luckiest surfer, father, grandfather, and more not only in this world but in the universe!
01/09/2017 GOOFY?? [FOOT]
Was it a million years ago, or just yesterday, when I began surfing?
As I remember, when I knee paddled into a wave I was a "goofy foot" or "screw foot" right foot forward on the surfboard.
If I prone paddled into a wave I was a "regular foot" left foot forward on the surfboard.
The surfing term goofy foot was in place when I started, but maybe this excerpt from: surfertoday dot com will help?
Best Goofy Footers Of All Time
Why are these surfers called "goofy"? The answer is curious. In 1937, Walt Disney released an animated cartoon titled "Hawaiian Holiday", in which Goofy goes surfing with his right leg in front of the surfboard. Watch how Goofy rode waves in a beautiful cartoon.
12/24/2016 PART TWO and YITBOS
Almost two years ago to the date, I held Baby Leo in my hands, he was clinging to life, months premature.
Today, he is more than a handful, more than an armful, in fact, more than a bigger than life reality TV program.
As I reflect upon my life, I can only rejoice in what a great life it has been.
Not that it has been [my life] a bowl of cherries, but how many surfers "out there" could say they were able to surf uncrowded - FOR YEARS - La Jolla Reefs, Black's and even La Jolla Shores.
I surfed the North Shore in the mid sixties with only one camera on the beach - thank you Tex Wilson.
I rode my Bultaco all over San Diego County and Crazy Collins and I were able to ride from the top of Mount Soledad to Ranch Bernardo, all off road, not a bit of concrete.
Getting back to Baby Leo ... who knows what kind of life he will be able to live. It will certainly be different than mine.
For years, I was unable to listen to "Cat's In The Cradle" without almost crying - that song really hit home, in fact, I banned it from my listening experience until this year:
"My child arrived just the other day
He came to the world in the usual way
But there were planes to catch and bills to pay
He learned to walk while I was away
And he was talkin' 'fore I knew it, and as he grew
He'd say "I'm gonna be like you, Dad
You know I'm gonna be like you"
Fortunately, my kids turned out a lot better than I did.
They have put their kids first - and have never missed a school or athletic event.
In fact, they have time - gasp - for me, and include me in almost every family event.
So besides wishing everyone a great Christmas, my parting words are to love the ones you are with, cherish every day, and remember:
YITBOS [Yours In The Bond Of Surfing]
12/24/2016 PART ONE
My Physical Therapy sessions are on Tuesday and Thursday ... last Thursday it was raining so hard that I passed on the PT and decided to read a bit more regarding the ALS ... the more I read, the more I started feeling sorry for myself.
Feeling sorry for myself has never worked in my best interest, so bye - bye sorrow, back to the more happy BA!
More than 30 years ago I was supposed to croak of melanoma [statistically, 3 -6 months to live] - ha - survived that one ... not even close.
I found back then, that humor in my life went a long way, now it's really time for me to dig in and find joy, love, and of course humor, in every day I live [a couple of more years and statistically I will beat the prognosis of death]
Previously, I wrote that walls are my best friends when I am walking around the house, outside I use my Wild Bill Walker, made by Triumph Mobility, and my most important discovery is that instead of watching [occasionally expensive] pole dancing, I have become a pole dancer, err, pole clinger.
Photo by Liz:
"GOOD MORNING AND YITBOS"
Above photo : Sunrise - La Jolla Shores
Above photo : Mad, err, The Poet, known as Jack
Above photo : My good friend, Robert Glick
I can only - obviously - speak for myself, but when one's life reality become finite, rather than infinite, every day is a special day.
Friends and family becomes more important than simply just my family or just my friends.
Way back, in fact, way way back...in surfing we had a saying for one who takes off on a dangerous wave, the TOAD.
No not that type of toad, this was: Take Off And Die.
If you don't surf, you won't get this acronym, but then it really does not matter.
As I think about my friends, I am reminded about how - probably - more than 95% of my friends are surf related.
Beautiful women, jobs, history, most of whom I met either by chance or design, thanks to surfing.
Yours In The Bond Of Surfing [or Surf]
"Clown Feet - Weak Legs - BA's Ego"
Last year I lent a hand to this great event:
WORLD ADAPTIVE SURFING CHAMPIONSHIP
Last year, I gave a few words of encouragement to the participants - after all, we - members of The WindanSea Surf Club - and volunteers - have been taking Special Surfers out into the water for more than ten years.
This year, my ego stood in the way of me being a participant, rather than an instructor, volunteer, etc.
**** Another good excuse, besides my ego issues, is that my kids and grandkids are taking me to Disneyland - yea **
I can barely put a wetsuit on by myself, much less walk down to the water, paddle out, and catch a wave.
A couple of years ago, after back surgery, my surgeon asked me to walk up and down the hall - he said something like this:
"You will never be a spy, you have loud footsteps."
It never dawned on me - because of all my surgeries, injuries, etc., that perhaps maybe this was the genesis of my ALS??
I try to describe to others that the symptoms I have, most importantly, the difficulty I have in walking, can be simply stated that I have "clown feet"
Weak legs and clown feet - ouch!
"Good Morning - Physical Therapy - Life Is Good"
Worked on my balance and strengthening my legs
The important thing for me is to slow down the muscle regression - and surf again in some way!
Above photo : sunrise in University City ----> From my expansive front porch
Above photo my pt group
Above photo is from the balcony of my pt group - bittersweet - we used to ride our dirt bikes all over this area - now it's packed with high tech / traffic / but also houses my pt group.
"Good Morning - Surf Is Good - My Millennial Friends Are Great!"
I am coming to grips, bit by bit, of the real BA, and the real ALS ... interesting revelation[s]
I go to physical therapy three times per week, after those sessions I'm good - physically - for one more hour of verticality.
Today, I went to The Shores to visit and harass as many friends / new friends / no friends as possible in less than two hours.
I'm not sure exactly, which age group comprise Millennials - I am too old to even be a Baby Boomer - however - from The Atlantic:
"In October 2004, researchers Neil Howe and William Strauss called Millennials "the next great generation,"
which is funny.
They define the group as "as those born in 1982 and approximately the 20 years thereafter."
In 2012, they affixed the end point as 2004."
I know the Millennials in general get a pretty bad rap - HOWEVER - the Millennials I know are hard working, hard surfing, hard playing young men and women --- all of whom are wonderful additions to our world - thank you my friends!
Above Photo : Sunrise from the parking lot - La Jolla Shores
Above Photo : Perfect Left at a top secret surf spot
Above Photo : Millennials Rock - Even though they may drink Starbucks!
"Good Morning - The Start Of Another BA Adventure, Physical Therapy, Bubble BA"
Surf looked good today via the cams, too much standing for a couple of hours on the beach, followed by PT - whew -
Beach time is best for me on Tuesday / Thursday / Weekends
Two hours standing and socializing beach side / parking lots, followed by a nap - life is good!
I almost fell down yesterday - again - so bought some bubble wrap - I guess I am the popping, not pooping, Granddaddy Billy
"Good Morning - The Start Of Another BA Adventure, A Message From Mom, The General's Daughter"
My 94 year old mother called me this morning and said, "Bill, I read your most recent entry into your ALS Updates...you are communicating with people with disabilities all over the world, as well as those who live 'in the cloud' why are you being so mean? I did not raise you to be a grumpy old man!"
- SO -
I moved my rant to my new Link to the BAD-BA PAGE
Just to warn you: I am making fun of ONLY ME!
I would not wish my current medical condition on anyone - even on my absolutely worst enemies!
Again, I have found that humor works well for me, self deprecation even more so - if this bothers / offends you, I have just a few things you may do with your idle finger[s]: Sue me, shame me on every possible social media venue you can find, or, easiest...STAY OFF MY WEB PAGES!
Whew, now I am ready to tackle a new day - below photos are today's sunrise from my front door:
"Don't Make A Mountain Out Of A Mole Hill!"
Above quote was a very well used message, and occasional missive from my mother when I would complain that there were too many kooks in the lineup at The Shores, or I was denied [regularly] a date I would request [beg] from one of the few females in my life from my age of 15 or so, thru age 25.
[Post age 24 I married Cathy, a marriage which I managed to screw-up but we did spawn 3 beautiful sons: Brian, Eric and Kris Andrews.]
Currently, as I am learning how to live with ALS, geographically and physically ... and more than symbolically, a mole hill has become a mountain for me.
Even a 1" change on a walking surface for me, if I am not prepared for the change in elevation, may cause me to stumble.
Luckily, I am using a Wild Bill Walker™©® for support, balance and traction [top secret improvements to be announced soon]
My short and long term goals are kindda the same:
Design, manufacture and create safer, more progressive, and exciting equipment for the disabled, of all ages and all types of disabilities!
"Fear Of Flying, err Falling"
Went to my oncologist Dr. Banerjee in the Scripps/XiMED Medical Center
[wonderful center by the way - I have spent a large part of my life with docs and x-ray techs here]
Dr. B has helped me deal with my hematology and oncology issues - great doctor - great staff - so far so good with my health from his practice.
Back to my ALS issues:
I have ridden some fairly large waves in my surfing career:
and have tackled a few hills in off-road motorcycling:
... however ... and I know I have said this previously ... falling down is terrifying - well maybe not quite terrifying - but about which I have to be more than simply vigilant.
For example, when I sit down, I have to aim my butt at the back of the chair - plus - the chair has to be sturdy enough to hold my fat a** and have armrests which I use to push myself up into a standing position and into my Wild Bill Walker©
BACK TO BA'S LANDING PAGE
"Inniss Physical Therapy"
Went to physical therapy for the first time since I broke my back in September.
I love my previous PT group: INNISS PHYSICAL THERAPY however the group is much farther away from my old peoples' apartment area in University City than my new one just two 805 exits away.
Darlene, and her co-therapists at Inniss have set a very, very high bar for my new PT team - so far - so good.
"I Am Now A Mobility Products Retailer"
I am now an authorized reseller of walkers and other products from Triumph Mobility.
I have some great ideas for products, which, hopefully, will become a successful business which I can pass on to my grandkids.
Went to The Shores today, surf was good, and what a godsend to be surrounded by such a wonderful group of friends!
Thank you - thank you for your help and kindness...
"Discussion Of ALS, New Words To Add To My Vocabulary - and - Aced The Memory Test"
I went to my Neurologist today, Dr. Dee Silver, and we discussed my disease.
In the context he, Liz, and I discussed that I may begin clinical trials, however Dr. Silver told me to speak to him regarding any trials because he was concerned that I may not qualify because of my comorbidity. [In addition to my ALS are my massive orthopedic problems].
He determined that I do not have the hereditary type of ALS, which is good for me - whew - life expectancy should be more than 2.7 years, but beyond that who knows?
Additionally, I took a memory test: SLUMS Examination, and totally aced it - in fact I still remember every question on the test!
I was telling my kids that my greatest fear is falling down, backwards.
I have ridden some pretty big waves in my surfing career, but the stoke far exceeded the fear - plus - in surfing one does have a bit more control over the situation, much more so than falling down in my apartment, with zero control.
Coming soon, video messages on You Tube.
"Walls Are My Friends"
I have found that the safest way for me to get around is with my walker - I also found that the equipment for those of whom I am one - is woefully inadequate, and in general is horrible for those of us who want to have safe, yet cool equipment.
My friend, Liz, and my kids are in the process of ALS proofing my house: No sharp corners on "stuff" which includes desks, tables, etc.
Additionally, I have discovered that walls are my friend - when I walk without my walker, I use chairs, walls, tables as a source of stability
On 13 September 2016 I made my first visit to a neurologist, and as I turned to look at some ALS info, I did a cartoon like flying in the air, butt flop and broke my back.
Previously, I had broken my back a couple of times - motocross - I have some sort of titanium cage at L5 - S1 and rammed that up thru vertebrae above the cage - ouch - 2 broken vertebrae, L1 - L2.
I have bones which are like concrete, and this latest break has healed, but it did slow down my physical therapy, which starts again on
30 Nov 16.
I am working on some top secret products which will hit the marketplace in a few months!
The photo below shows a rainbow almost hitting the house where we grew up - La Jolla Shores, California:
The rainbow above is almost hitting the roof of the house where we grew up at La Jolla Shores
BACK TO BA'S LANDING PAGE
LINK TO: WEBSITE PIMPING MY LATEST WALKER DESIGNS AND OTHER COOL PRODUCTS FOR THE DISABLED:
WILD BILL WALKERS, LLC
LINKS TO: ALL OF MY OLD DAY WITH BA SURFING, LA JOLLA CRAPOLA WEBSITES ETC. CAN BE FOUND BELOW:
--> LINK TO THE CURRENT / LATEST PAGES WITH MY PHOTOS ETC.<------- [VOLUME 2]
-----> ALM0ST ONE YEAR BEHIND - FAILURE TO BACK UP OUCH <-----
LINK TO: THE VERY OLDEST DAY WITH BA PAGES <---------- [VOLUME 1]
BA' s Last Blast of BS:
"For me, I'd rather be an old 1/2 man and / or even a flat man, still surfing South Wind Shores
[below photo was a great day, thanks RK, MORE ABOUT RICHARD KENVIN],
the LJ Reefs and Black's,
than an old whole man surfing Tourmaline.
[No offence to old men and my friends at Tourmo]"
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