You’re Not You

Welcome back to my Blong. I’m sorry I stayed away so long. I’m trying to “make up for it” by posting three entries in one evening. If you want to understand where this post came from, make sure you read the one before this. I’ll ask my ” post-er” Laura Marsh, to make these fall in line . One, two three. Just like the Holy Trinity, right ?

Mine was a happy, active, exciting childhood. I am the second youngest of nine children, I’m sure each of siblings have different perspectives . By the Time I came along I think my parents were much more lenient and relaxed. I jumped off the roof with a pillow case thinking it could be a parachute. Since that didn’t work, I tried an umbrella like Mary Poppins. That didn’t work either. But it was fun to think about Julie Andrews cuz I hD a crush on her even though I had no idea what that crush feeling was…

And then sometching happened, something devastating-life changing,..mom diagnosed when iw as 11, she died just after I turned 13 . I hadn’t gone through my angry teenage years, so is til wanted to be at moms side. I want my arm to touch her arm.

But isn’t everything changing always, nothing is permanent, so it’s all life – changing. By not trying to cling to things that used to be, we let go of suffering. Can I cling to my moms robe and cry” please don’t go, please. Don’t leave me- my hands can’t hang onto your robe.they’re slipping , I can’t hold onto….This is suffering. Let go, to grow yesterday’s attachment is gone …

Embrace death & dying to live more fully. No fear energy taking you away from this moment. The longer people stay away the worse they feel and less likely to ever come b/c guilt. It’s okay. I understand . But please learn from this. I am here for you to practice with/ on. It okay. Our PILLOW: Jennifer Terra and me with Huyen.
When I talk to classes, My hands and arms look like I’m conducting an orchestra ,,,,and in a way, Mybe I am. Yeah, maybe in am. Are you feeling conducted?

Cancer diagnosis who knows how long I’ve had it ? I know the date of my surgery and my scans, but who knows? Really it’s the same with ALS.? I do know I was born with the very rare genetic mutation butter who really knows when it turned the key… Yeah, the keys been in the ignition but when did it actually turn it on? It’s hard to tell because I’m so tuned into it- way more aware of my own body than any doctor .how about While I was watching the Lou Gehrig movie Pride of the Yankees on TV ? I couldn’t put the popcorn in my mouth? I kept hitting my chin? When I couldn’t open my bottle of carrot juice? When I started looking like a big flirt cuz I couldn’t button my top buttons?

Choose to adapt. My choice in the morning how I want to feel.
Facebook thank you ! Nadine hears music, we meet, do interview, I offered to help fundraiser market ,promote, DCC ice bucket to BETTER. Days? How perfect to have an ALS Documentary featuring music written and performed by someone with ALS?! My arms are open wide, and look what comes in? Be asked to talk at Emerson, sac city, Emerson, woodland .sierra, DCC , Korematsu. TEDx ?
Hillary swank has ALS in movie “you’re not you.”

TEDx Notes

Howdy doody my precious Blong Peeps ! I told you I’d be better about a writing and posting in my Blong, so here ya go:

After I was selected to speak at the TEDxUCDavis event my fingers were flying all over my iPad and my fingers were stumbling around with my Bic pen on scraps of paper whenever I had a good idea. Well, after four re-writes some of the ideas proved to be good.

What I’m sharing with you now are some of the notes I wrote to myself. Unlike my other speaking presentations where I sit on a chair, open my mouth and let it talk for an hour or so,
at TEDx talks speakers are limited to 18 minutes. Auugghh, OMG, WTF, LOL, BTW, LGBT, WXYG, LMNOP and ZIPPITY doo dah! Chatty Cathy talk for a mere 18 minutes? Truly this is one of the most challenging …uh, um, urr…yeah, that.
Okay here are my notes- it’s kinda like letting you read my diary. I trust you:

I spent a lot of time at the Varsity theater when I was growing up ind Davis on Oa k avenue. The neighbit rood kids sometimes trow of my sisters would ride our bikes – no helmets back then, and bike lanes hadn’t graced our streets yet. During the summer they had Wednesday matinees for kids first a cartoon with bugs bunny , the roadrunner, Elmer fud, double feature ,usually at least one shoot em cowby movie. The Swiss family Robinson, The Love Bug, The Computer Wore Tennis Shoes, original Parent Trap. Patty Dike duke.

Before the movie we.d run across the s fret to Quesseberry drug store and buy gobs of candy and stuff it in our pockets and sit and eat candy for over four hours. Life was good. It was great. I had a great childhood, . Not that it was purrrfcet. so many kids wild n free , we were encojraged to be creative.

And we were free -range , no GMO s back then. We had a big funhouse where ll the friends liked to hang out, dad was at work on .campus, and I knew my mom ws the most wonderful mom in the world. She was warm, open, generous,patient, oh so patient, she had enough love for everyone. Her smile could cure my stomachs aches and her round warm hug made me feel like I’d be loved forever. I bet there were mny people who felt the same way.

Here I am in this moment how did it get here – well I didn’t ride my bike but if I did I would wear a proper helmet to make good example for our youth and .baloney. I ride a trike without a helmet, hook pull me off stage ?

I bet more people than you think have been touched by ALS , affected by your boss sister, or your friends uncle, maybe your own mom or dad – but they don’t talk about it cuz it’s too darn hard. If you truly haven’t. Been touched, I will personally come touch your shoulder, after the event is over…I’ll even give you a little peck on the the cheek if you want $1 goes to Better Days the ALS Documentary. Nadine El Khoury, writer, producer , director using Duval Speck music in trailer and film. How to raise more money to help her/ project.

IMG_1874

IMG_2066

IMG_2091

TED Talk!

Mea culpa , mea culpa, mea culpa ! I fully apologize for my lack of Blong posts. The whole cancer thing over the summer interrupted the flow of my wonder-filled life. Yup, cancer bit me in the end of May. Had major surgery July 17th and stayed in Sutter General Hospital in Sackoftomatoes for a wonderous week. What is My diagnosis and prognosis you ask ?
Metastatic neuroendocrine carcinoma. My totally awesome cancer surgeon removed a sizable , extremely painful tumor in my small intestine, and cut out more of the small intestine. Then, uh oh, surprise ! The cancer had spread to my gall bladder and appendix , so he took those out too, along with 24 lymph nodes, 15 of which were cancerous. This means there is still cancer in my body, but we can’t “cure it.” We hope the remaining tumors are slow-growing.

It was risky to have surgery – most ALS folks would question taking such a risk. With a compromised respiratory system, anesthesia is ….oh, so scary, but it was a quality of life decision, and I chose to take the chance.

I don’t know if you’ve heard about the TEDxUCDavis this Saturday from 9:30 to 11:30 at the Varsity Theater..blah blah…but if you wanna get a ticket before it sells out, here ya’ go :

https://www.eventbrite.com/e/tedxucdavissalon-roots-of-inspiration-tickets-9637296413?ref=ebtn

I ( it’s all about me, me, me) take the stage ( and I’m not giving it back ) at 11am and I’m the last speaker. A performance artist will come on after me, then we’re done and it’s time to party. My BFF Bestie Blanchie Simon ( aka Angela Simon PhD) is coming. My mom isn’t -she died. Oh, so did sister Susan, brothers Larry, Paul, um, baby Stephen and Grandma Mabelle Speck, the only grandparent I ever knew. Dad is 92.5 and is doing quite well for someone who has experienced so much loss, grief, pain and flatulence .

Ennyhoo, now you know and if you can think of anyone else that might like to go they an get tickets online. It’s affordable $5 for students and $7 for people who don’t go to school anywhere, never ever. Not that there’s anything wrong with that….

https://www.facebook.com/events/1535549980023072/?ref=22

Again, my dear Blong Peeps, I’m so sorry for temporarily abandoning you, I thought about posting everyday – seriously. But I spent all my writing energy on Facebook , and that’s not a bad thing.
I’ll be back. In the meantime, if you come to the TEDx talk please say hi or some other word to me.
Cheers

I am HEEEREEE!!!

Cathy Speck
to me
0 minutes ago
Details
At last ! I am here , I am here, I am HEEEERE ! ( any Seuss fans recognize that slightly -altered reference? Don’t be afraid to speck out…I mean speak out- how egotistical of me. )
Here’s a copy of a highly secret, personal, private email I just sent to a dear family friend, whom I shall not name, but the band her daughter plays in is “Misner & Smith.” I realize that re-cycling an email to use as a Blong post isn’t very professional, but, hey, even I am gonna cut my self some slack on this one…
The photos looking out of my private room in Sutter General Hospital in Sacrapimento were taken by Linda Duval and Jennifer Terra.

Good morning from luxury suite 5403 – truly a room with a view ( see photos of Sutter’s Fort, skyline of downtown Sacramento, and sunset over the skyline on a rainy evening in July ! )

Oops! Well at 4:15 am in Sutter General Hospital after major surgery , I guess it’s understandable I might send the draft instead of the polished masterpiece I crafted especially for you , Peg. Let’s see, I already sent the photo of my eldest sister Barb tending to my parched lips, but I didn’t even finish my sentence : “Am I a candidate for a Playboy Centerfold or what ?” You get to answer the question – it wasn’t rhetorical-and I’m assuming you’d reply affirmatively, yes ?

What else…the surgery was successful and I pulled through breathing on my own, which was the ….um, the Big Question. Linda and I both agreed that living on a vent was not an acceptable option for me. The other super good news is that I can keep-on living with ALS without the horrendous abdominal pain, nausea and vomiting that had been plaguing me for over four years. I had simply brushed those symptoms aside as unavoidable side effects from ALS and the medications I’ve been taking. I never even told my primary physician about the misery I endured- why would I ?

The not -as -super news is that the neuroendocrine cancer cells spread and are lurking about in the mesentery and other nurturing places to lurk. They don’t respond to chemo or radiation other than a slight nod, tip of the cell hat, and a whispered, “Howdy do, ma’am.” It’s a fine trade-off, and the metastasized cells don’t scare me. I’ll show them how to have a good time, or else ! Or else….they’ll have yo sit in the corner and mope. Or maybe sit under the coroner and …mope. Even if chemo and radiation were an option, I would’ve “poo poo-ed” them. (Speaking of poo poo, that’s something I must do ( doo ) before I can check out of my luxury condo across the “Old Sackamenna.”

Also, I listen to my M & S CD over and over again- please let them know that their music brings me great pleasure. I’ve been spreading the news about their music to friends and even to folks I don’t know very well. After their last concert in Davis, I roamed the streets of downtown Davis with my blinged -out walker and the Amazing Mazie pug/poodle/ terrier / monkey Princess perched upon her four-wheeled throne and we sang the song of local musicians gone good. Gone excellent. Gone so darn awesome that proper grammar is trumped. Chatty Cathy indeed ! ( I might’ve even been telling my surgeon and anesthesiologist about Misner & Smith before my surgery commenced. )

Well, it’s 5:27-ish am now which I’m merely pointing out so you know how much time I spent crafting this email masterpiece especially for you ( and, shhh, my lovely BLONG Peeps ! )
Now that I’m nodding off, I shall tie this in a bow and sail it across the Sacramento River to you. Enjoy the moment.

Cheers & chuckles & buckets of love,
Miss Catherine

IMG_1291

image

Happy 4

Happy 4th of Juy to everyone, even if the date means nothing to you. Happy Friday to all and be super careful on freeways, highways and three-ways. Oops, no, not that. Or yes, maybe those should be safe too. Yup. What does July 4th mean to me? Well, thanks for asking- it means freedom, independence from whatever is ailing you. My grandma Mabelle Speck died on July 4th 1974 in a convalescent hospital in Davis, CA. Thank God. She had “bowel cancer” as they called it back then, but she already “beat breast cancer” in the 1930′s and 1960′s. She had just turned 81 when she last exhaled and was much too foggy from the morphine so it was kinda okay, it was good that she died then. Enough of that. The point is “have a NICE day” or else ….I’ll come make you smile. = D

Since I’m in SoCal I finally met and talked for hours with Nadine El Khoury, director of the ALS Documentary I’ve been writing about. I’m am so thrilled to tell all y’all that she chose two of our ( Duval Speck) songs to use in the documentary itself- not just in the trailer. Yes ! I’m so excited it feels like fireworks are shooting out of my head, heart, hands and ears, but it’s really too loud so…Oh what the heck Cathy Speck, live it up. That’s the key anyway, right? Live it up!

Enny hoo, I’m sharing a post from Nadine about the film “Better Days.” I hope you, or someone you know (or don’t know) can help fund the finishing touches… Hm “finishing touches” sounds like the title of some paperback romance novel. I won’t be writing any of those.
Here’s the real deal :

Countdown for “Better Days”
This is the last weekend to support this ALS documentary “Better Days” Please do what you can. We are close to finishing it with your help. Thank you to all who donated thus far. Your care and generosity makes a beautiful impact. We will be growing a fruit tree in a pub…”

News Flash update !

After our appointment with Dr Lee, my cancer surgeon, I had some final blood work. The results were not good on a few fronts (and backs, too, I suppose.) It appears that the neuroendocrine tumor in my small intestines has young cousins elsewhere in my body, and they are the kind you (well…Dr Lee ) can’t remove surgically. ) And since this bugaboo is so flippin’ weird and rare, chemo and radiation won’t be of any help either. “Oh bother,” says Pooh..

I’m gonna stick with removing the tumor, appendix and maybe my gall bladder and My Left Show- I mean Shoe, no um…My Left Foot. Whew ! My mind is playing cruel little jokes on me…Wait, who ARE you ? And why are you reading my private diary ? I locked it and hid it in my special garden ! Hm…!

Okay,back to the Blong. Let’s venture back a few days so you don’t feel lost or lonely and vulnerable. We can take care of that
The “Wednesday” I’m musing about in this post is from last week– the 18th of June.

Ready? Got yer seat belts on? Safety hats? Foolproof goggles strapped on ? Are you prepared to read sentences ending with prepositions on ? Ok! Let’s git ‘er done, and by ” ‘er ” I mean ” ergonomics” ie, typo-ing and reading sitting on an appropriately – fitted a chair, or at a standing-work cubicle while using good posture and deep breathing. It’s that simple. Let ‘re rip :

What a day ! Wednesday, that is. I think we’re on Thursday now,yes, it’s 1:02-ish am June 19th and the days daze are flying by while I’m flapping with only one wing. Shoot. No, don’t shoot! I’m not really a sitting duck, goose, egg, McMuffin, but I do feel kinda confused.
Here’s one thing I know for sure: the surgery is at 8:30 am on July 17th at Sutter General Hospital in Sacramento.

Tuesday 6/ 17, Linda, Mazie and I had the “big meeting” with my cancer surgeon to discuss the risks, the realities, possibilities, hopes and fears regarding removing the neuroendocrine tumor in my small intestine and maybe some in my teeny tiny intestine. And then there’s the “exploratory” part,which makes sense: major surgery is highly risky for ALS patients with respiratory weakness,especially for those of us who have lost too much weight –mostly muscle.

This a quality of life decision and I’m willing to shoot for the stars. No, please don’t shoot. I think all the gun controversies in the press are making me trigger happy to use the word “shoot.” (Chatty Cathy has done it again.) Enny hoo,the cancer has been so painful and unpredictable I wanted to shoot mys….oh no you don’t Miss Missy.

I am willing to risk the inability to breathe on my own. And that, my dear friends, would mean I’d leave Sutter General Hospital in Sacrapimento and go home to hospice.I have chosen to not live with an invasive vent or feeding tube.But let’s back up to the surgery: beep beep beep. Anesthesia and major incisions and taking stuff out and putting other junk back in will be traumatic on my body.But I do believe that emotionally,spiritually,mentally, sentimentally will be a culmination of myriad experiences and beauty will prevail. Now we don’t usually think it’s “beautiful” to also remove the gall bladder, appendix, and my left converse high top from 10th grade,

But, to use that same ol’ cliche’ in “the big picture,” this surgery is right for me at this time. Well, not at 1:21 am Thursday June 19th, but at 8:30 am July 17th. If there are “no complications I’ll spend about a week in that hospital -the one I said before, please don’t make me type it again.. And if there are no further complications, my recovery should take from 4 to 6 weeks.The details are all in the phrase “if there are no complications.” If I had a million dollars…oh wait, that’s another hypothetical…blah blaaaahhhh. Blah.

In the three photos I am lovingly intermingling with beings I love so dearly. These days -I truly mean this– these days, and these moments feel like I’m holding on to something ten years old….more later…
Stayed tuned for the next Blong post. Don’t touch that dial.. No, not “DIAL” soap . If you don’t “get” this reference, it’s okay; it’s simply toss-away nostalgia from the life-altering, high tech age somewhere between “the world is flat” ages and fueling cars with leftover french fries oil.

Yum, that smell is making me hungry for something I haven’t eaten in years–garlic french fries, onion rings, and wrestling with a woman from France. (That sentence structure is awkward, but I think it’s hilarious, and I’m the editor so it stays..) If you’re laughing yet, I’ll wait for you to read it slowly so can then join “The Laughing Game” which is a better story than “The Crying Game.”

This is Chatty Cathy signing off 10. 9. 8 7 w x y z ei ei. Oh. Uh oh !

daniel elisa me

daniel me 1

karina coffee (1)

Memory Day

Greetings all, I sure hope you’re remembering to have a memorable Memorial Day! My sister Mary is on holiday so Linda, Mazie and I are up here in the mountains of Pollock Pines with Pop/Dad/Grandpa. Mazie loves her Grandpa and loves to leap high up onto his lap. He smiles his special Gene Speck smile while Mazie does a few circles around her perch before plopping down in the perfect place, for her, that is. But it doesn’t last long because she almost always has one eye part-way open, then zing -she’s off like a rocket ! Outside of the window she spots a mama deer and her two fawns looking for leftovers in the “backyard.”

After Linda patiently explained to Mazie, in one-syllable words, that it is not okay to scare the mama and her babies, Mazie and Linda went outside and approached the deer, who were oddly not spooked at all.. Mazie stood quietly curious, but Linda and the mama deer had quite the loquacious conversation. They even talked about religion and politics.

Meanwhile inside the house and enjoying the rhythm and coolness of the ceiling fan, Dad was staying abreast of current issues by reading two newspapers and I was avoiding breasts and real news by playing around on Facebook. I’m not sure if I worded that properly, but since when am I concerned about being “proper?”

Okay, enough about me, : I decided today that Mazie should have her very own Facebook page and being up here was the ideal place to take oodles of Mazie photos some of which are attached. Yes, yes Linda and I have thousands of Mazie photos, but Mazie’s Facebook photos will demonstrate her perspective.

This afternoon we all (not the deer) drove down to Sly Park at Jenkinson Lake which is not far at all from Mary’s house. Yikes! the park and the beaches were overflowing with people- not a deer to be seen. At the park entrance we got a discount for having our handy blue handicapped decal hanging from the rear view mirror, which, by the way, is actually against the law. That is, the decals should not be displayed until the vehicle has stopped permanently, but not eternally- I hope. I’m not done yet…

Enny Hoo, Dad used his charm and the Gene Speck smile to keep us outta jail so we finally got down to the picnic area to party in the shade. Okay, no here is a true story-you can even ask Linda. At one of the spots we explored there was a lovely walk way handicapped walk way for disabled/handicapped folks which crossed a meadow and lead to vista point.As we got nearer a bunch of flying insects were swarming -not in a scary way, just very…different. They turned out to be migrating ladybugs and they were…everywhere, including my arms and hands (see photos.) Do any of you know the story of migrating ladybugs?I bet teacher Mary Pat knows !

Enny hoo, again, on the way back to the parking lot five little kids came running up to me asking if my toys are for sale–oh that silly walker o’mine. I said “yup, cash only, no returns, no exchanges $12 each or 2 for $24.” Not really, but the kid were so fun and curious and asked why I wore “that thing around your neck” ( my neck brace.) I told them it keeps my head from falling off and they squealed with delight.

We ended up having a delightful afternoon despite the crowd of humans and swarming ladybugs and a bunch of goose poop on one of the beaches. Dad skipped the goose poop adventure.He said he really enjoyed this outing and seeing all the tents and picnic parties because the only time he’s been close to the lake there weren’t many people around the lake. Maybe he’s been sneaking out in the PT Cruiser in Winter after 2:00 am to make sure he gets a prime parking spot. No quite sure about that.

And speaking of 2:00 am, it’s almost 1:45 am – Pop, and Mazie and Linda went to bed hours ago, and I’m sticking to my usual after- midnight creative jams–not jellies.I first started this late night writing patterns when I was twelve, when Mom was finally put in the hospital. I couldn’t stand her not being with us at home, so I wrote about how I felt and what I wanted to happen.
Wow, I almost made it all the way to the end without talking about something sad. Well, come to think of it, it’s not sad. Writing, expressing myself, was an important and healthy coping mechanism. So there. Smiles everyone !
Cheers and lotsa love,
Cathy

Skydiveflyer

Howdy strangers ! Well y’all aren’t the strange ones – I am. Not that there’s anything wrong with not being strange and that wasn’t a double negative think that’s right.

Enny hoo, Chatty Cathy is coming out oft the closet coming up for air ! Whew, I’ve been un-well for a month and it’s not even ALS related ! Poop ! Double poop ! Abdominal pain/nausea/vomiting. I’ve hardly written on FB email , text.and not at all my beloved Blong or IpinionSyndicate.com Bt, the last two days have been much better. Before now I had to lie on my right side which made typo-ing difficult,

But the pain is lessening and it looks like Chatty Cathy strikes again !
Well, you know, it’s just that I have so many words that I need and/or want to get out while I can. Think about it–me with no outlet to communicate perhaps my tongue will stop doing what it needs to do to make audible sounds.

I suppose I could make all those sounds now and believers might think I’m speaking in tongues.
But could I still be able to communicate with printed words–not if I can’t I use my hands and fingers.

Yes, technology is more than amazing and very determined folks can use some sort of eye-recognition miracle to s…
Ooooh noooo Chatty Cathy slyly slinked, slunked, slanked into the room and made off with my laptop while I was giving my dentures a bath. They know when it’s bath time and they hide in nooks and crannies-maybe grannies- and …No no no ! Chatty Cathy go home. Go away.

Friday evening May 2nd :
Breaking News ! The abdominal pain/nausea/vomiting are back. Aargghh just when I thought…blah blah. Last night I felt well enough to join Mary Lynn Tobin for some live music in delightfully busy downtown Davis. Biscuits & Hunny opened for MIisner & Smith and the Oddfellows Hall was packed !

I just love how our Davis community supports live music. We could have the best bands west of the Mississippi , but without the music lovers and generous supporters, the music would just dry up and be blown to Stockton by that punishing north wind. But that is not what’s happening with our Davis musicians, audiences or businesses. The bands and the audience were comprised of longtime Davisites, which thrilled me since I don’t get out much and don’t see all the wonderful people at the Davis Food Co op, or the lovely crowds we entertained when I could still perform.
I didn’t even feel too sad about not being on stage sharing the interactive energy loop from audience to performer and back again.
We sat in back which has a great view of who else was there. I made eye contact with folks I haven’t seen in years – that’s when the tears welled up.

People don’t know what to say and I totally understand that. I wish I could hug every person who feels “unsure” about what to say or do, and say to them: “I understand, it’s okay, I know you care and I care about you too. Thank you for sharing the Earth with me. Try to focus on love. Just love.”
Hm, that might be bit too wordy – Chatty Cathy wordy ? So I would just hug and say “it’s all about love. Love, love.”
Whew ! I didn’t know those sentences were gonna come through my fingertips. Yikes!
So my intention was to give y’all the most recent update of flying the friendly skies of Yolo County, so here ya go :

The 5th Annual West Coast SPECKtacular Skydiving for ALS You don’t have to jump out of a plane ! Help raise awareness about Amyotrophic Lateral Sclerosis (ALS), as well as funds for )

Saturday May 17th 10 am to 3:pm
Please join us for the BBQ $25 Suggested Donation – or picnic for free.
Skydance Skydiving
Yolo County Airport
24390 Aviation Ave Davis, CA 95616

For more information and to donate, please visit :

http://community.als.net/SPECKtacular

All proceeds go to (ALS TDI )

Look! Up in the Sky! It’s a Bird…It’s a Plane…It’s SPECKtacular !

On Saturday May 17th Cathy Speck will be congratulating skydivers as they safely land at The 5th Annual West Coast SPECKtacular Skydiving for ALS event on Saturday May 17th from 10 am to 3:00 pm. Speck was the first one out of the plane at the first Skydiving for ALS event in April 2010. And now Cathy Speck wants YOU to jump out of a plane and bring attention and money for ALS research, or not. Cheering for the skydivers and sharing the ALS support is helpful too. All proceeds go to research at ALS TDI (Amyotrophic lateral sclerosis Therapy Development Institute.)

Monday May 12th at 4 pm is the deadline to put down a $25 deposit to save your seat on the plane. Tell the folks at Skydance that you want to take your turn, after your training of course, by noon, if possible. Donations are welcome anytime on this site! Not everyone has to jump to join the cause to find a cure for ALS. For more details and to donate, please visit http://community.als.net/SPECKtacular
Skydance is located at the Yolo County Airport 15 minutes northwest of Davis, CA

On April 25 2010 Cathy Speck and her ALS Walk team, The SPECKtaculars hosted the first Skydiving for ALS Awareness event with no plans of doing it again — Speck seemed to be progressing rather quickly. But she surprised everyone, including herself, and with help from oxygenation and breathing augmentation and ever-flowing love and support from the community ,Speck and friends established the annual status for SPECKtacualr Skydivjng for ALS Awareness. Said Speck, “with help from The Davis Enterprise, The Davis Food Co-op, Emerson Junior High and Da Vinci students, the awareness factor bloomed into fertile soil perfect for growing funds. And, oh yeah, don’t worry, you’re not gonna get shoved out of the plane all by yourself. You go tandem with your own personal “jump master” strapped on your back for the flight –that’s how it feels, it feels like-flying. It’s almost a spiritual experience–a wonderful, unforgettable sensation. ”

Speck, whose efforts go to FALS -familial (or genetic ) ALS, explains how this spine-tingling event will raise funds for FALS: “We invite each jumper to find sponsors who want to support the ALS cause but don’t want to jump out of a plane, or who might live too far away to attend. we’ll be super grateful if you can get $500 from your community or your employer or how about that $20 bill that you found crumpled in your pocket .”
The format of the event is similar to other FUNdraisers from The Walk to Defeat ALS to The Ride to Defeat Leukemia where participants ask people to sponsor them. and the sponsors can be at the spirited event or not.
“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,” Chatty Cathy explains, ” it is so amazing to watch our friends or anyone 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
“When people an ALS diagnosis, it’s like being shoved out of a plane without a parachute and they don’t know what’s going to happen to them,” said April Kamen of Davis. Kamen made her first sky dive in 2010 at Skydance in Davis to support Speck, her dear friend and Davis Food Co-op co-worker.
Speck nodded, ” That’s so tragic becuase it doesn’t need to happen that way, but the less people understand about ALS, the more fear steals their precious, limited energy. Ironically, because I know the disease so well, I had no fear,” she said of her 2010 skydive. “I’m very much at peace with dying and the skydive experience was peaceful and liberally sprinkled with bliss. Everybody can have this- bliss. It’s there, it’s here. Allow yourself to feel it.”

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 respiratory failure. The most common form of ALS in the United States is “sporadic” ALS. Most people with ALS live 2-5 years upon diagnosis. About 10% of people with ALS survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop. It may affect anyone, anywhere, but it is not contagious so go ahead and give Cathy and Gloria big hugs -they don’t hurt.

“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 that leads to the disease. ALS already took our mom, our aunt and our oldest brothers, Larry and Paul. And then there’s me – I ain’t dead yet,” Speck smiles despite the odds.
“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. As part of an on-going healing and letting- go process, Speck is an “open book” advocate for ALS. She writes and speaks about the”whole picture,” the effects of ALS that forever alter relationships with others and one’s self. She speaks freely (and for no cost at all ) at public events, in churches and classes from junior high schools to college classes. She shares her personal process of living and dying and thoughts of the “afterlife. Everyone is encouraged to read the following feature story and watch the YouTube video to makes this event even more meaningful and inspirational : saccityexpress.com/learning-to-love-life/ An Interview with Cathy Speck ALS &MEUSA Activist

For the first time three other ALS groups from nearby regions are partnering with The SPECKtaculars to create The 5th Annual West Coast SPECKtacular Skydiving for ALS. Last year Gloria Samaniego Hale (who has ALS and is confined to a wheelchair ) and her supporters raised over $30,000 and are aiming for $75,000 this year for ” Young Faces of ALS” YFALS . Her group, Team Hale Yeah! along with Team UCSF are raising funds for YFALS..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.Read more about her story at: http://community.als.net/skydiveforYFALS, The Mishork Misfits group with is comprised of other families who have the SOD 1 mutation. 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.
These two groups are starting at 9 am; The SPECKtaculars skydivers start at 10 am.

While some of us are still “tiny distant specks ” in the sky, friends and family 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 experience. Speck invites all “Join as at the BBQ with a $25 suggested donation, even if you don’t have money. You’re welcome to bring ice chests for your own picnic lunch, so that your donation goes directly to ALS TDI .
Speck also emphasizes that “disabled folks, like , well, me, and my friend Gloria can skydive too — your “jump master” just needs to know a few days ahead of time to determine how to adapt the equipment. Contact Skydance today: skydancedavis@gmail.com p
530) 753-2651 9 am to 5 pm

Direct questions about SPECKtacular donations, potluck items, Davis helpers/volunteers to Cathy Speck at: speckduval@gmail.com or
text : 310-508-7401

The attached photos are way, way down at the bottom, you might want to bring an oxygen tank and maybe a sandwich… and just in case, three gallons of potable water..

C

# 1 On Saturday May 17th Cathy Speck will be congratulating skydivers as they land at The 5th Annual West Coast SPECKtacular Skydiving for ALS. Speck jumped out of a plane at the first Skydiving “FUNdraiser” and ALS Awareness event in April 2010.

# 2 Cathy & Mazie Duval Speck scoot around like social butterflies at the 2013 “Die Laughing With Cathy Speck” ALS Benefit.

#3 Left Perry , center Cathy Speck with Sean Harrison,my jumpmaster, on my back, right, Maggie Williams

# 4 Cathy Speck free falling with jumpmaster Sean Harrison

# 5 Cathy speck and jumpmaster Sean Harrison get ready to”be one with the skies”

# 6 Cathy Speck and Gloria Samaniego Hale cheer for cyclists as they cross the finish line at the Ride to Defeat in the Napa Valley 2013

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.

Tag Cloud