Cathy Speck wants YOU !

Join us at “The 5th Annual West Coast SPECKtacular Skydiving for ALS” event.

What are you doing in Yolo County on Saturday May 17th from 9 am to 5 pm? Do you wanna jump out of a plane — one that’s so high you can actually see the end of a rainbow? “No,” you say? Harrumph ! Would you try it if you were tandem jumping with a professional “jump master” strapped on your backside?

Now is the time to Skydive for a cause, a heart- wrenching cause called amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s disease. As always, this event is for ALS awareness, and this year our Fundraiser is for the ALS Therapy Development Institute (ALS TDI) You can learn more about this excellent research organization at : www.als.net

This West Coast SPECKtacular Skydiving for ALS is gonna be HUGE this year. We’re partnering with two other regional ALS groups,who last year raised $30,000. Space is limited so you need to call and reserve your spot with a $25 deposit before other non-ALS folks fill up all the spots on the plane. All details about Skydance Skydving (about ten minutes northwest of Davis) are on their Facebook page and on their website: http://tandemskydivingschool.com/ CA. 24390 Aviation Ave, Davis, California 95616 (530) 753-2651 9 am to 5 pm

How does skydiving raise money for ALS ? We’d like each jumper to to be sponsored by others: folks who don’t want to jump out of a plane, or live too far away but still want to support the ALS cause. I’ll be so grateful if you can get $500 from your community, or $10,000 from your employer, or $25 from your pockets we’ll be so grateful.

Basically it’s like any other “Run for Colon Cancer, Ride to Defeat Leukemia” where participants ask people to sponsor them, and the supporter can watch at the event in person or “in spirit.” Later on you can show your supporters the video of your jump if you choose to have the videographer tape your experience.

All of the donations go directly to ALS TDI . More details about the actual jump are available on the Facebook page of Skydance Skydiving . If you don’t sign up soon you might lose your chance. I will also talk to anyone on the phone or in person about how amazingly surreal ,beautiful, spiritual and thrilling skydiving is. I would do it again this year but I’m having problems with vertigo, and…y’know.
What is ALS ?

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a fatal progressive, neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death–usually from respiritory failure. The most common form of ALS in the United States is “sporadic” ALS. It may affect anyone, anywhere. “Familial” ALS (FALS) means the disease is inherited. Only about 5 to 10% of all ALS patients appear to have genetic or inherited form of ALS. In those families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease.

In February 1971, my mom Dorothy, a mother of nine was diagnosed with ALS . She was only 50 years- old when the doctors finally identified the rare disease. One December 1972, less than one month after I had turned thirteen, mom died in the Davis, CA, our hometown. Our extended family, friends and many people in the community were devastated. Cathy’s Dad, Gene, lost the love of his life, the mother of their children, but at least she lived long enough to meet at least one grandchild, Becky.

I don’t want anyone else to lose their life to ALS. And even closer to my heart, I don’t want anyone else in my family to live and die with ALS. Some of us with her lineage can contain a rare genetic mutation. Like other families with the SOD1 genetic mutation, siblings , grand children nieces and nephews have a 50 per cent chance of inheriting the mutation that leads to ALS if their parent has/had it.. That mutation already got our mom, my grandma and her sister and my two oldest brothers.
In 2008 when I was helping as one of the a caregivers our brother in 2008 I noticed that I had similar symptoms to his and my mom’s: I had unusual fatigue, my legs felt like they were made out of solid oak at a time when I was in great shape and had plenty of endurance. I didn’t like going to bed, because cruel spasms taunted my feet and legs almost every night so I wrestled with myself and lost. I felt like I couldn’t breathe and that led to tormenting nightmares, and periods of horrific suffocation. When I got up in the morning my body was wracked as if I had run a marathon on our expensive mattress. During the day my head was too heavy for my neck muscles, and for the first time in my life,….blah blah blah. In 2009. after so many tests ruled out anything else, I had my DNA tested and sure enough I had the dreaded genetic mutation. Enough about me- for now.
If you are anywhere near this area, on Saturday May 17th, please come join the party–even if you don’t have any money to donate. Come learn about ALS–we are all in this together. Let’s do it potluck style– you can bring your ice chests with water, beer, wine, juice, coconut water and other picnic lunch/snacks to share with our wonderful community.

When we’re not in the sky we’ll be on the picnic grounds celebrating the love and support we have for each other. There are picnic tables, sun umbrellas,rest rooms, a skydiving gift shop, and a great viewing area where can watch up close as our friends land. It is thrilling to be part of this generous, brave,thrilling experience.

.It is so amazing to watch our peeps jump out of the plane and land safely. Then when you ask them how to describe it they can hardly find the words. (You can also watch my skydive video on You tube: www.youtube.com/watch?v=2HPIIv1KnDg
I jumped at our first event on April 2010. My experience was so amazing — it seemed spiritual in a way. I could easily get addicted to skydiving, because I have “an addict-like personality.” But I never want to lessen my experience in any way at all, so I’ll be sharing the joy and healthy, positive energy with my walker or scooter on the ground. Those of you who know Mazie the monkey face pug/poodle/terrier Princess will get some special time with our dog/child.

My personal goal this year is $28,000 but I’d love to get for $29,000. Yes ! Positive thinking. I realize folks can’t afford as much as they’d like to, so if you know of any organizations, people, businesses anywhere who have a chunk of money to offer, please let them know about our event.

I’m expecting the 5th Annual West Coast SPECKtacular Skydive for ALS to be a successful event financially, and an amazing opportunity to connect with others whose lives have been impacted by ALS. Even though it’s the “West Coast” skydiving event, we’re accepting donations from the East coast and…what the heck, we’re reaching out to all over the world.

This year we combined all three Skydance Skydiving groups to make sure our skydiving bash is a big smash !

By the way, disabled folks, like Gloria, can skydive too — your “jump master” just needs to know (ASAP) ahead of time so he can determine how to adapt the equipment for you : skydancedavis@gmail.com
If you have other questions about donations, potluck, host/volunteers, you can email me directly at: speckduval@gmail.com or text me: 310-508-7401 We must secure our spots on the plane now or they could be filled by people who don’t know what ALS is or don’t care about.
Call, email Skydance today (530) 753-2651 9 am to 5 pm to reserve your spot with a $25 deposit. What do you think about this ? Speaking of “Think” take a peek at my rockin’ life about two years before ALS (BALS.)
Think about it.

Thank you so very much for taking time to read and watch all of my….blah blah blah.
They don’t call me “Chatty Cathy” for nuthin’.
Cheers!

Cathy

Here is a link from a previous SPECKtacular Skydiving events at Skydance:
Here is a link to the article in the Sacramento Bee. The website includes a video.

http://www.sacbee.com/2012/05/22/4506864/supporters-take-leap-of-faith.html

The SPECKtacular FUNd focuses on familal ALS (FALS)

5th Annual West Coast Specktacular Skydiving for YFALS
Skydance Skydiving in Davis, California

For West Coast Skydive for YFALS · Gloria Samaniego Hale Gloria Hale skydives. She has done it three times already, and is planning to do it again in May of this year. Gloria also has ALS—yet that does not get in the way of her taking part in the exhilarating experience!
Gloria first learned about skydiving through her relationship with the ALS_Therapy_Development_Institute(ALSTDI) and their Young_Faces_of_ALS (YFALS) campaign. The YFALS campaign was created by a small group of people living with ALS who all share a disturbing characteristic; they all received their diagnosis before their 30th birthday.
Most of the emphasis on ALS is placed on those that develop the disease during midlife. YFALS was created as a community for patients of ALS, as well as their families and young friends. YFALS has since become a catalyst for accelerating research at the ALSTDI through fundraising events; such as skydiving. Gloria’s first dive was in 2012. She says that she was not at all nervous prior to her dive, and in fact did it with a huge smile!!! In 2013, Gloria raised over $30,000 for the ALSTDI through skydiving!
The third group jumping with is comprised of other families who have the SOD 1 mutation.The Mishork Misfits. This group was created to benefit the West Coast Skydive for YFALS taking place for the third consecutive year at Skydance Skydiving in Davis
They represent a family with an extensive history of familial ALS. This cruel disease has yet to skip a generation of the Mishork family. Many members of the Mishork family, both living and deceased, are currently or were previously carriers of the mutant SOD1 enzyme, a known correlated trait of familial ALS diagnoses.

Unopened Valentine

I’ve been working on this column for two weeks but the problem is not writer’s block, it’s more like writer’s diarrhea. I have so much to say about what Valentine’s Day brings to me, but much of the story must remain anonymous. Well, “must” is a loaded concept here: I chose not to use our names. No good will come from digging up the sorrow that we buried years ago. We closed that lid and covered it with flowers.

I’ve said too much already without saying much of anything. That dang writer’s diarrhea, my cup runneth over with nothing short and sweet. Well, this is short compared to usual columns, but it is not sweet, not even bittersweet

I won’t use the word “diarrhea” anymore in a silly way – it’s  time to get serious and leave my gallows and bathroom humor behind. Nope, even though I’m tempted, I will not play with my “behind.”

I hope this column is easier to read than it was to write.  After editing and more editing it morphed into “Tragic Valentine’s Love

Stories for Dummies,” or “How to Walk away from your laptop for Dummies.”  The full story could easily a best seller non fiction book. But the more I wrote in this column, the more I had to delete out of respect for others affected.

She was older than I and she was my idol when we were kids. She was so smart, kind, likable, lovable, and an excellent athlete who was tall and thin with no acne. Even my own friends would drift over toward her when we were playing in our yard or in our house. I was the “captain” and boss of everything and everyone, but she didn’t need to be loud or “in charge. ” Her vibe was so inviting and gentle the neighborhood kids just did what she suggested or quietly started on her own.

February 13th 1997

We knew she was struggling as she moved closer to her core. The memories, some real, some too painful to know the difference, weakened her physical heart that was already broken. Why did she keep trying when getting better meant being vulnerable ? That night she seemed weak and tired and barely giggled at my funny stories. She looked depleted from diarrhea and from something else- something felt empty, vague.

After she fell asleep, we brought in dozens the of roses in a vast array of royal reds and pink, boxes of the finest chocolate, toffee, indescribably addicting gourmet caramel popcorn, and we put Budweiser in the fridge to chill as cold as she like it.

During the previous four years she created something akin to an adult-sized crib for herself on her bed lined with more than twenty Teddy Bears.  Some stayed in bed with her and the others sat in their own special places so she’d always see at least one friendly Teddy. They all had their own names and histories, and they each had a Happy Valentine’s Day card to give her. In the wee hours on this Valentine’s morning, her Teddy Bear family grew by twenty new Teddy Bear friends who wanted to be named and loved and safe.

We expected her to open her eyes in the morning and be innocently surprised . The flowers, candy and Teddy Bears would embrace her from all corners of her room. When she woke up she would see and smell love, comfort and adoration. She’d smile a similar to a six year-old would smile and later,her thirst would be quenched by an ice cold Bud just as she liked it.

February 14 1997

We expected her to open her eyes in the morning and be surprised with pink-cheek delight, her eyebrows arched  accentuating her sweetness of heart.

But she was deeply sound sleep  so we didn’t bother her. We made veggie omelets wit extra cheese and meatless sausage that smelled delicious- surely the aroma would wake her up. I went inside her room and tussled her hair, it’s very fine like mine. Then I touched her cheek, she was cold, too cold. I shook her shoulders and shouted for someone to call 911. I tried to find a pulse in her neck.

She was already stiff. Cold. Stiff. Lifeless. Without soul.

So much for expectations.

FLAT LINE VALENTINE

At the viewing I waited until everyone else had their chance to do whatever people do when they look in the casket. I know what I do, but come to think about it,  I’ve never asked people what they do when they’re “viewing.” I tussled her hair just like I did on Valentine’s Day morning. My hands trembled as I took off my guardian angel crystal necklace and I put it on her folded hands.  I didn’t count how many of her Teddy Bears shared the casket with her, but they all seemed happy and comfortable and safe.

I loved her so much. She was my idol. I wanted to be like her. Everywhere she went men, women and kids loved her. Then it all came shattering down. Where did she go, long before she died ?

My Silent Valentine

October 21 1956  –  February 14  1997

The photo is mine. I made an “altar” for a friend of mine who just died two weeks ago. She died just a few hours after we left (she was in hospice.)

AJ 4 angel

 

 

 

Ah, jeez ! I am so far behind in with my Blong posts, aarrghhh. But as I say to my dear friend April Kamen, “as long I’m behind I know I have a future.”  I suppose we  could get all Zen about this and say “be here now” and  ”live in the moment,” but then my joke doesn’t work. And I’ll just feel bad about my lack of recent  Blong posts, which is not Zen at all. Not that there’s anything wrong with not feeling Zen. Stop this ride, I wanna get off.

And just so you know, I would not be sharing “my story” on the Blong if I thought no one cared. So, thank you for your kind, compassion, and encouraging comments. When people come up to me (or down-whatever) and say “Hey I follow your Blong-  it really inspires me,” or something like that, I know that my time to die is not yet here. Because our community is so amazingly supportive, generous and loving, I feel responsible and fueled to give back to all y’all, and it’s wonderful to ride on this blessed ( tri ) cycle of love, living and dying.

Hm, after reading the previous sentence a couple times, I’m not sure if I agree with myself. Am I typo-ing stuff just because I feel “like I should ?” Nope, no, that is not what I’m doing. Maybe I’m a ping pong ball on my laptop keyboard, bouncing (or in my case rolling ) around hoping that I’ll construct a few paragraphs that spring from my heart into your heart. No that’s not write either. Ha ha ! That was a sophomoric play on words unworthy of taken up Blong space, but I’m leaving it in so this Blong post won’t be so short. I mean, come on, I finally post in my Blong, and it’s shorter than my middle fingers ?

( I’m not intimating any “f” words here; I use only my right and left middle fingers to typo, the other fingers and thumbs just hang around waiting for me to leave crumbs so I have something to eat. The myth is true: wherever I go, I leave a trail of little food particles.) That was a long parenthetical explanation. Should this be in parentheses too?

And speaking of eating, when I eat with my friends, family, strangers, imaginary playmates, I’m not supposed to talk while eat. That’s hilarious -I’m always talking, right ?  You know what I mean, most weekdays I’m home in my recliner, just the three of us: me,my laptop, and Mazie our dog/monkey/princess/child. Oh wait, my ” texting device ” (cell phone) must  be included too. I do not like talking on the phone and I never have liked it, not even as a chatty teenager, but texting is divine for a grrrl like me. I use my lift hand to hold it up, and my right index finger does the touching part. I’m sure there are different ways to describe my method of texting, but I’m just gonna leave it like this. And there you have it.

Enough about me, let’s talk about…ALS

As you know, we can talk and read about (me !) our loved ones, strangers,famous people  and kind of forget what  ALS actually is. Yesterday I was reading a recent research journal that defined ALS in a succinct and powerful way without being too wordy:

” ALS is a fatal progressive neurodegenerative disease that affects neurons in the brain and the spinal cord. People with ALS often become paralyzed and die within two to five years of diagnosis from respiratory failure.. There are currently no treatments on the market that prolong life or attack the underlying causes of the disease. There is no cure.”

On that happy note I’d like to share with you some photos that are in the “photos” section of my Blong, but maybe, just maybe, you haven’t seen them yet. I like them. I love them. And I bet I like you, too. Maybe I even love you .Whaddya  think?

Don’t go away yet….please stay… for now it’s pretty picture time! The first photo was taken in 2011 when I was recovering from pneumonia, or was that from pandemonium ? Maybe a bit of both. Here I am in the comfort of my hospital bed at home, surrounded with love from the hearts (and arms,necks, etc ) of Alyson Collom, Mazie Duval -Speck, and April Kamen

The second photo is of my dear friend Karina Dryer who I met at an ALS support group ( just another example of the “good things” about ALS.)

She’s coming from Roseville tomorrow so we can eat and not talk, wait, I mean I talk the whole time. She usually finishes her food and gets her car keys ready to make a dash for her van (see other photo) This time Mazie tried to go with Karina,so I bribed her ( Mazie,not Karina ) with some puppy jerky (not made from puppies, that’s sick.) The jerky comes from dehydrated squirrel thighs. But seriously folks, Karina is a bright light in my…other bright lights, and I truly love her.

The third and final photo is of Karina’s van after my birthday party at Sudwerk in Davis.That was a kick- butt, fantabulous place to have a birthday party, or any kind of party.  Hm food for thought ? Anyway, Karina and her wonderful hubby Neels, helped set up, and clean up after the party, and got to ride in the front seat while Karina was smashed in back underneath piles of the party paraphernalia. Hm, she said she didn’t mind,of course. While we were driving through downtown Davis we didn’t realized that one of the brightly colored Happy Birthday helium balloons was riding atop the van -somehow the string got stuck when we shut the sliding door.

That was the purrrfect way to wind down from the party, where once again I talked too much to eat anything. No wait, I ate one chip and one olive, and I licked the leftover frosting on Linda’s plate. When we got home, I crashed for a couple hours and woke up with a healthy appetite. At least I have a normal something !

Well, we did it, didn’t we. We made it through another Blong post. My next post will be about renewing friendships from long, long ago. Why wait for the funeral, right ?

Cheers & Chuckles,

Cathy

More details about ALS and how you can help at:.www.als.net   www.alssac.org

cathy alyson april mazie hospitalbedkidnap maziecathy &van

….And speaking about music and all…I had planned a caroling event on Sat the 14th, but now I need to change it to Sun the 22nd at 1:30 pm.  We’ll carol at one convalescent facility at 715 Pole Line Road or 45 minutes or up to an hour, and that includes pausing to visit & chat & hold hands with the folks living/dying there. this is our 20th annual Caroling parade  but this year I physically can’t do more than one venue.
Right now I’m visiting my sister Barb in Crescent City where I’ve been since  the 30th, and will be back Monday the 16th. (see the photos)

Well, first folks come to my apartment for an hour or 45 minutes before we caravan to Sierra Health care. We visit with each other, eat,drink and be merry- or Mary if we want to reenact the baby Jesus being born…who’s gonna cut the umbilical cord? Not Joseph, his hands are to shaky.BTW this is not a religious event and everyone is invited whether or not they can sing. Jingling jingle bells are music to the ears …to the folks there who can still hear..
After caroling everyone is invited to come back to my apartment to de-brief, share feelings/thoughts  of our experience, and we can continue eating and drinking and laughing/crying, hugging and kisses under the mistletoe–if we can climb up the big ol’ trees and cling perilously under those silly green things.*see below.
Well, I guess I should ask if you are interested in this before I complete this epic holiday prose…
 
Cheers &chuckles,
Cathy
 
*

This kissing tradition dates to 16th-century England. Mistletoe also has pre-Christian ties to Greek mythology and Norse legends. Ancient Druids considered the plant holy.

During the 18th century, the tradition of kissing under mistletoe gained popularity in America, as hosts hung sprigs of these greens in doorways. Ladies venturing under the mistletoe were fair game for kiss-stealing gentlemen. Today’s mistletoe kisses are freely given or taken by both men and women.

A pretty evergreen, with leathery leaves and waxy pink to white berries, mistletoe remains a popular Christmas decoration. Viacum album, originally from Europe and Philodendron flavescens, native in North America, are commonly found for sal..blah blah blah…

 

xmas 62 or63 id you gifts

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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At this very moment, no…this one..akkk , so,now ! Grrr, it’s gonna be too hard to stay in “this moment” but I’ll give it the”good ol’ College Drop Out try.”

Right now, Linda, Mazie and I are staying in the Super 8 Motel in Willets,Ca, and it really is super ! We have a handicap bathroom and it is fantastic. I’m dead serious!    We’re on our way up to Northern ,northern California into the Tsunami territory of Crescent City.to visit with my big sister Barb and her wonderful hubby Eric.

However, a soon as I return I’ll be preparing our 20th Annual  “Cathy & Friends” caroling at local Convalescent Home

Maybe we could also bring treats & songs to some homeless homes, or if anyone knows of a particular family that is in need of some good cheer we’ll bring joy and chase away fear!.

Do you know anyone who would like to join us and/or needs some holiday hugs and happy humming?

Our day of merry & gay is Sat Dec 14th from 2 to 4pm .But really, we first meet here at the Duval Speck Luxury Suites for treats, drinks, funny hats and antler wings,lyric books and jingling things. Or maybe you’d like to be the the Little Drummer Boy, with your own little drum. (I have one if you don’t.)

Ennyhooo, I distracted myself. At at exactly 1:27-ish pm we gather at the Red, White & Green Glee Headquarters at 801 D st  # 3. (aka Duval Speck Apt.)  Please come in thru the patio gate -the hallway inside the front door is filled with bulk oxygen equipment-oops. Look for pink flamingos and a patio oasis of ferns and winter flowers. At 2:01-ish, after we warm our voices and hearts, we car pool, caravan, and hop on some free-ranging reindeer in a glorious way to keep up the spirit of this fine day. As of this very moment..wit..no this moment,hang on ..this is the moment…aarrghh ! At this brief history in time, we’ll be going to Courtyard on E 8th st, and Sierra Health Care on Pole Line Rd. Both of those venues are confirmed and they’re  in Davis.

I’ll hand out lyric booklets, but I’d love for others people to bring lyric sheets for songs they enjoy singing, some Hanukkah songs are much appreciated. If someone you know plays the flute, guitar, auto harp, or grand piano, promise them a good time, open their  and bring ‘em along.

When we’ve finished warbling and tooting our own horns, , we gather back at Duval Speck Home of Glee HQ to snack some more, wet our whistles and talk about our adventures in the land of the lost candy canes, or candy walkers & wheelchairs.

And speaking of…I never dreamed that I would live long enough to continue this tradition–it must be all the love and support, cuz I sure couldn’t do this life alone. And I feel the prayers, healing thoughts and hands, and the hands..okay, now-that’s far enough

Oooh yess, if you bring some mistletoe, we might see some extra sparks in addition to the sparkling holiday decorations.(If you do bring some mistletoe, please be sure you clean off any of the bird poop that Mother Nature thinks is so funny. She’s been acting a little wacky lately–I’m a little bit worried. Maybe one of you can help me out and give her a tactful warning call .

Please invite anyone-they don’t need to sing or walk, they can smile, play little percussion toys, wear elf ears, dress up like Santa or some reindeer poop– it kinda looks like dark chocolate covered blue berries–maybe a whole bunch of little kids or little adults…All ages welcome, if you have a registered service animal, bring’em along. Mazie gets along with everyone as long as they all bow down to her Highness, the homeliest most  adorable monkey/Toto face in  A-mazie-land.

Call or text or email or FB me for more info or for no reason at all…speckduval@gmail.com ,   text 310-508-7401,  and good ol’ Facebook at Cathy Speck blah blah.

Cheers & chuckles,

Cathy

PS I totally understand if you can only do half of it, ten minutes or if you’re just coming over for the mistletoe action…we want you with us ! This is not affiliated with any one particular church, boy scout troop, Avon Lady Mimosa Brigade, or election candidate. It’s us. We are One…We are one –  one smiley,diverse,loving, searching,learning, parting, beginning again, loving group whose sole soul intention is to share love and sprinkle unfiltered joy wherever we go.

PPS If you’d like to bring some treats to share like cookies,butterscotch brownies,Russian Tea Cakes, Mexican Wedding cake/cookies,or plain tofu shaped like a snow man or  snow trans. Perhaps you fancy some rum/brandy to spike the eggnog,or for hot toddies,hot buttered rum, hot apple cider…I am a recovering alcoholic (22 years) and I still know the short cut to holiday beer, oops, I mean cheer !  Baby Jesus is too young to drink, but before you know it, grown-up Jesus is gonna offer wine to the masses, pun intended.

Since that last sentence is gosh-darned tough act to follow, I’m gonna follow fingers right off the laptop keyboard over to s large plate with a unique blend of popcorn, candy corn, licorice all sorts, Swedish fish and sesame sticks. My fingers will dance happily and touch every yummy morsel; Mm, I love .”giving my body calories!”

Doctors’ orders. Yes, doctors-doctors -plural. .One neurologist said  to me–the first time he met me: “You  should be eating a half gallon of ice cream everyday.” And then he started looking out a surgery schedule to stick a feeding tube in me. I don’t really like ice cream. I’m not getting a feeding tube. And he refused to acknowledge Linda’s presence in the room. We fired him.

Holy smokes did I get lost on my path to Information Land.  Well, I’m pretty sure you got the most important stuff, and I’m pretty sure you’ll invite a friend or two .minder-kids are great for this, even if it scars them for life-it builds character.I’m living/dying proof.)

And here is the natural place to sign off or this evening/morning–whatever. It was 10 pm when I started typo-ing this  quick note and now it’s 1:43 am.  I haven’ “tagged” everyone in the photos, but now it’s  almost 2 am, Aarrghh ! How does this happen !?

I no longer remember the initial purpose of this email,  but that is okay, so very  okay.

cathy caroling don saylor christmas   xmas jim , cathy, susieimage (1)wacky mazie face 2013

Cheers & chuckles,

Cathy

 

Nov 14thnoon to 1:00 room 800

GOT  DIVERSITY ?

Woodland Campus of Yuba College  2300 E Gibson Rd  CA 95776  FREE

The BIG show, Die Laughing with Cathy Speck is over, but you get to have a FREE, more casual interactive conversation with Cathy Speck.

She’ll laugh with you, tell you true stories of how she stays so positive,  hilarious & joyful while dying from ALS — a fatal neurodegenerative disease that usually kills people 2 to 5 years after being diagnosed. She’s on year four and is “not slowing down” unless it’s physically impossible for me to come to the venue.” She also talks about coming out at age 17, her prior plans for suicide, surviving alcoholism, eating disorders, and self- mutilation. HOW FUN! If you don’t know the “Cathy Speck Experience,” be there.

!! Get extra credit !! !  www.cathydyingasliving.com

www.IpinionSyndicate.com      YOU TUBE : CATHY SPECK


Hey You! Do This!

Spectaculars Flyer Walk 2013

Walk On

Gallows humor anyone? You first. No, really. You go first.

I suppose some readers might not appreciate my gallows humor. But how am I supposed to know unless I blurt out something like, “This red velvet cake is to die for. Gimme two big pieces so I can speed up my ALS progression and get this dying stuff  over and done with already.”

And I really do understand that someone who recently lost a loved one to ALS would think it’s inappropriate for me talk about the 2013 ALS Walk-a-thong?  I mean no disrespect,  but being funny has been one of my healthier coping skills.–way better than my previous drinking or starving myself to death methods.

I have ALS so I get to make jokes about myself, so there.  Of course,  the official name of the event does not refer panties or footwear, it is The Walk to Defeat ALS and it’s on Saturday October 5th at Raley Field in West Sacramento. The Walk is free for anyone so please , join our team, The Specktaculars. We’ve been fundraising for months leading up to this big day, because all of the brilliant ALS researchers in the world can’t do a thing to find a cure without enough funding.

It’s not too late to donate, so you can make a donation at the Walk.. The event begins at 9 am for registration and entertainment until 11:00 am.when the Walk  begins.  Walkers can choose one of two routes:the one mile loop is three times inside the River Cats ball field, and the fives mile walk loops around to the State Capitol and back. Walkers who can’t actually walk are welcome to use wheelchairs,walkers, adaptive trikes, but no skate boards or 1985 roller blades.

Amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s disease is a fatal progressive neurological disease that affects the motor neurons in a person’s brain and spinal cord. When the motor neurons die, the muscles waste away. Gradually, a person is robbed of the ability to walk, speak, eat, and eventually breathe. For most patients the mind remains sharp and aware of the total paralysis that is quickly setting in. In some cases cognitive impairment can complicate quality of life for the care-giving loved ones too.. Upon diagnosis, doctors give ALS patients only two to five years to live. There is no known cause.There is no cure.  I walk on..

It was 1971, in Davis, when my mom and dad asked us kids to sit down at the dinner table for a serious discussion.  My parents had nine children, with four of us still living at home.  We were a happy, active, warm family, and my mom had always been robust and lively and immune to even a cold or flu.  Or so it seemed.

For about a year she kept going to the doctor with mysterious symptoms.  Nothing seemed too horrible, doctors said.  Probably bursitis, or  “tennis elbow” or “hitch hiker’s thumb.”

But that evening, when we all sat down and passed around a light blue brochure, we learned that mom had  Lou Gehrig’s disease (amyotrophic lateral sclerosis).  We were told that she had a terminal disease and that she might live two to five years.  She was only 50. We walked on.

We also found out that my mom’s aunt, Mary, died of ALS at the age of 54, and that the disease wasn’t hereditary but could run in families.  I refused to believe that anything could kill my mom. I walked on.

She died Dec. 19, 1972, I was 13. My family and the community were devastated.  And our lives were changed forever. We walked on.

On May 6, 2008, my second-oldest brother, Larry, was diagnosed with ALS.  He died June 22 the same year.  He, too, had been misdiagnosed for quite awhile.  Larry was willing to help researchers with familial ALS studies.  Other siblings and cousins also sent in their blood. We walked on.

I felt like I had been “studying” ALS since I was a teenager, and I wanted more than anything to help find a cause and cure. I sent my blood to Northwestern University in Chicago.  I told them I would do anything to help. I also contacted the Sacramento ALS chapter to see if I could help in any way. I walked on.

Meanwhile, I was symptomatic, and went to my doctor and three neurologists for this test, that test, everywhere a test test…. Then the news came the researchers at Northwestern University that my brother had a very rare ALS SOD1 mutation, and that I have the same one. I walked on.

Larry , my sister, Susan and I had this “gut feeling”  for decades that each of us would get ALS.  Susan died in her sleep at age  40 in 1997 but had not been diagnosed with ALS yet.   I walked on.

I’m not positive what my oldest brother Paul had been thinking before he was diagnosed in September 2009. That year was the Speck family’s first ALS Walk (see photo.)and it was the last Walk Paul did in California. He and his family live in Bend, Or and they participated in an Oregon Walk to Defeat ALS with the team name of “The Specktators.” The team captain up  there is Katie Speck who is married to my nephew Joe. They had twin boys not long before Paul died. They know that Joe has a 50 per cent chance of having the genetic mutation. And if he does, the two boys will face the same fate. They walk on.

This kind of pain and fear is nearly unbearable for the parents of children. And there is still no cure. I don’t know how my  91 year-old dad, Gene Speck , keeps going. We both use walkers and we do walk on–slowly.

After my brother Paul’s funeral in May 2011, my great niece, six-year-old Libby, looked up at me directly in my eyes and said in her high soft voice, “Aunt Cathy, why do you wear those things up there in your nose,?” referring to the nasal cannula which supply oxygen for me when I’m feeling weak and short of breath. I explained that it helped me breathe and it made me feel better.

She then looped her “little kid” fingers into my weakening right hand and bravely asked ( I could tell she was trying not to look scared) “Oh, so you won’t die like Uncle Paul, right? You won’t die, right?

She looked into my eyes as if she wished she hadn’t asked that question.   I couldn’t lie, and I couldn’t break her heart. I put my arm around her and softly answered, “No, not yet.” Her head drooped down like a tired sunflower, and her shoulders slumped. “Libby, I love you very ,very much. And I’m trying very hard so I can be with you. I’m doing everything I can.” Our hug goodbye felt as if it lasted all of her six years. She walked on.

So here I am two years later,with my neck brace and walker decorated with wacky flair, fun toys and a clown horn, laughing loudly and smiling as broadly as ever.  The progression in my family runs a bit differently, so the experts told me to look at what my relatives experienced to get some sort of idea of what to expect. What I learned was to make different choices than they did. I choose   to use oxygen and breathing assistance at night, and I sleep in a hospital bed  at a 45 degree angle.They all died of respiratory failure, which almost happened to me in 2011 when  I ended up in the Sutter Davis ER with pneumonia. I have lived twice as long as I expected I would. Whew! I walker on.

Perhaps some of you reading this story have or had loved ones suffering with ALS. Sometimes getting involved can help a grieving soul. Go to an ALS benefit or awareness event or read about it online at www.als.net and  www.alsa.org  If you truly want to feel the positive energy of people with ALS and their caregivers, come on over to Raley Field for the Walk to Defeat ALS this Saturday Oct. 5th..  We chant, we cheer, we face ALS without fear. Well, maybe that sentence was just for the rhyme,since we do have fear, but we live with it anyway. Well, we live until we’re not living anymore.

Oops, my gallows humor slipped in again.Good thing because I got way too serious and now I need to laugh.Maybe I’ll watch “Portlandia” or “Strangers with Candy” a comedy TV series starring Amy Sedaris and Stephen Colbert. Amy is the sister of funny man writer David Sedaris, and they both crack me up.

Did I play the cards well enough to convince you to join us? Awesome! I’ll see you at the ALS Walk-a-Thong–look for whole bunch of bright yellow smiley helium balloons. The Specktaculars’ spirit is sky high.

Love powers the journey, and smiles light the way.Humor makes it fun.

We will walk on.

More details about the ALS Thong Hop are available online: the link to my personal page is : http://web.alsa.org/goto/speckles

The team page is: http://web.alsa.org/goto/gospeck

Or send me an inappropriate email speckduval@gmail.com

To donate by check,or money order please make checks payable to “ALSSAC” and write ”Specktaculars” in the memo line.  Mail donations to: ALS Association, Greater Sacramento Chapter

Attn: Walk to Defeat ALS

2717 Cottage Way, Suite 17

Sacramento 95825

Wow! Just as we were getting to leave after setting up the stage/sound system at the Venue ( for the Die Laughing with Cathy Speck: The ALS Musical One Woman Show) they but up the ALS TDI Banner in the arch way of the entrance/driveway


We stopped the car to turn around for a good,long look at the banner. Something in my soul,body,mind when I “soaked it all in”–I’m not sure I can give you the “full meaning” that’s why I’m using so many parentheses since nothing i typo is “full or whole” enough.

Enny hoo, thank you thank you thank youI’m ready Whirled: i’m doing it now and I’m not gonna stop. It feels like i’m riding on a sturdy raft and I’m riding the current without fear. Now is my time–now is our time. And now is what we have in our open hands.

See most of you tomorrow , and thank you so much for making a difference.”

Cheers& chuckles,
Cathy

Die laughing with Cathy Speck: The ALS Musical One Woman Show

When: Sunday Sept 15th 2013

1:00 to 4:00 pm

Where: Trish & Kim Timothy’s “The Old Huff Ranch”  Out in the country –casual attire

37687 County Road 18  Woodland, CA 95695

Plenty of free parking–if needed, lot attendants will help guide drivers .

 Why : To laugh, cry, and buy, to be part of the cure as we raise awareness and funds for

ALS TDI : Amyotrophic Lateral Sclerosis  (ALS .)   ALS Therapy Development Institute  (ALS TDI)is an independent research center with a singular focus: develop effective  therapeutics that slow and stop the progression of amyotrophic lateral sclerosis (ALS,)

 How Much?  Free, but we want you to donate to ALS Research!!

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