Speech from Red Wings Game

Hello!

Thank you for the chance to say a few words to you tonight about ALS and the important research being done to find a cure.

ALS is a rare neuromuscular disease that affects about 1 in 100,000 people.

While its cause is still unknown, and the cure remains elusive, we celebrate the progress that’s been achieved by making May “ALS Awareness month”.

We do so as a tribute to a player who, at the height of his career, announced to the world on May 2nd, 1939, that he would be leaving his position as Captain of the Yankees.

The sudden shock of seeing an athlete go from a 363 average to only 4 hits in the first 8 games of the ’39 season gave the world a dramatic example of how quickly ALS can progress, and that no one, not even The Iron Horse, could fight it.

I am referring, of course to Lou Gehrig and the disease that bears his name.

When he made his famous speech, he said he was lucky.

He said it was because of the love and support from his family, friends, and fans, that he could face ALS as he did the game of baseball: with heart and a winning attitude.

Today, the MDA and the University of Rochester Medical Center, are helping ALS patients like myself face this disease,  the same way Lou Gehrig did –  and to live each day to its fullest.

On behalf of the MDA, I ‘d like to thank all the fans of the Rochester Red Wings that are here tonight for your support, and encourage you to do what you can to support ALS research to help us find a cure.

Thank you.

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Speech from the MDA-ALS Gala “A Night at the Races” 2011

Hello.

My name is Joy Parker and I’m grateful to have been asked to speak with you tonight.

I must tell you what a wonderful feeling it is to see so many people here tonight united in the search to find a cure for ALS.

I was diagnosed with ALS last April. For years I had felt my body grow weaker, and for years I all I wanted was my doctor to tell me what was wrong. One of the first things I learned when I thought I may have a neurological disease is – it’s not so simple to diagnose.

There isn’t a single test for it.

It requires months of visiting different specialists and doctors who begin eliminating all of the other disease you don’t have, until they run out of options-

and finally the only diagnosis left is ALS.

After almost two years of testing and observing, when my neurologist said those three letters, it was like a punch in the stomach.

Each day I wake up and ask myself, “What did I lose today? Can I still walk unassisted? Will I be too tired to work?” The hardest thing is when Nicole, my 5-year-old daughter, asks me, “Mom, when will you get better”?

ALS is a very complicated disease. It can affect any part of me that has a muscle, as it attacks the nerve connections to my muscles. I am in no pain, but I am tired.

I feel…heavy.

I will admit, it is a little weird that I cannot assume that the things I do today will be there for me tomorrow.

I can let it overwhelm me, or I can take it on.

If I can’t choose to have this illness, I can choose to take it on.

And that’s what I’m doing – with your help.

Since ALS is an ever-progressing illness, I need constant monitoring from a variety of doctors and specialists as they monitor and maintain what nerve health I still have.

I know it sounds daunting that there is still no cure for ALS, however, the treatment is constantly changing and improving. A real breakthrough for treating ALS can be seen at the University of Rochester Medical Center.

An ALS clinic is held every month. The structure of the clinic is an amazingly simple and humane concept: have all of these specialists meet in one place with me, rather than me go to them. In a few hours, my Neurological Team has an accurate snapshot of my condition.

It is a collaborative approach to medicine.

And it is a real convenience for me.

But collecting and maintaining the best and the brightest for my Team isn’t cheap. Neither is the support they need to stay on top of this disease. But I am here to tell you tonight the financial support you provide is making a difference to finding a cure-and to those affected with ALS, like me.

When I was diagnosed with ALS, I was immediately put on the breakthrough drug called Rilutek. Although each month’s prescription is over $1,000, its results are priceless. Because of this drug, I am able to still walk with assistance and I am keeping the symptoms of ALS at bay.

It is one of the reasons I can stand before you tonight.

My prognosis has been lengthened from months to years. And that’s a good thing because with medication, the support of the MDA, and the continuing support of all of you, I will succeed in my goal: I will see my five year old daughter graduate from high school.

Thank you for all of your efforts and continuing to support research for finding a cure for ALS.

Speech from MDA IAFF Boot Camp Kick Off

Hello.

My name is Joy Parker and I’m grateful to have been asked to speak with you today.

I was diagnosed with ALS last April. For years I had felt my body grow weaker, and for years I all I wanted was my doctor to tell me what was wrong. But when all the tests were done, and my doctor said those three letters, it was like a punch in the stomach.

Each day I wake up and ask myself, “What did I lose today? Can I still walk unassisted? Will I be too tired to work?” The hardest thing is when Nicole, my 5-year-old daughter, asks me, “Mom, when will you get better”?

People have told me how brave I am to be facing ALS at such a young age. But I will tell you a secret: my bravery comes from those around me. My family, my doctors, my friends…. and you.

Because seriously, you can’t find anyone braver than New York Firefighters.

While there are many people out there raising money for MDA and ALS, only Firefighters are willing to literally stand in traffic to collect it.

You might not know this, but Firefighters have been working on a cure for ALS since before I was born. The Fireman’s Boot Drive has been around since the mid 1950’s, and is one of the longest running fund drives for neuromuscular diseases like muscular dystrophy and ALS.

Your hard work here today will have real results tomorrow. When I was diagnosed with ALS, I was immediately put on the breakthrough drug called Rilutek. Each month’s prescription is over $1,000, but its results are priceless. Because of this drug, I am able to still walk with assistance and I am keeping the symptoms of ALS at bay.

My prognosis has been lengthened from months to years. And that’s a good thing because with medication, the support of the MDA, and the continuing support of all of you, I will succeed in my goal:  I will see my five year old daughter graduate from high school.

Thank you for all of your efforts and continuing fight against ALS.

The world has gone crazy (or how governments get overthrown)

In my “day job” I’ve been spending a lot of time on Tweetdeck watching all our Twitter accounts. I should say that I’ve really just been watching the world revolutionize! Of course most of it is coming from NPR’s Andy Carvin! In the course of my workday, I’m seeing average people around the world using their phones – overthrowing regimes! Mixed in with tweets from The Onion, Duran Duran & Alyssa Milano, were these retweets from real people, talking about protesting to change their government. First it was Egypt, then Libya… Real humans talking about what is going on there at that very moment… Women & children being woken up in the wee hours with tear gas and rubber bullets!

Do these regimes not understand that this life is one of a global consciousness?

On to something less heavy…

…like God & Spirituality!

After all, this blog is about my spiritual journey as well!

I started out as any good WASP, going to Sunday school at the First Presbyterian Church of Wheatland (aka Scottsville Union Presbyterian Church) . My mother’s family went to the church as did my cousins that still lived in the area. When I think about church — THIS is the one I know the most. Between weddings and funerals and great Christmas Eves, I fondly remember this church.

There were really only 2 negative memories. (I did get yelled at for shooting a scene for my Dracula movie in college without permission on the grounds there, but that hardly counts! Oh, yeah… I also looked up the minister’s robe to see what he had on under there.) Once, when I had to be baptized when I was 7 because my Catholic father would not allow my mom to baptize me as a baby. When she was divorced she had it done. I just felt really stupid standing there being baptized with all these babies! The other time was when I was elementary school age, maybe 1st or 2nd grade, I couldn’t understand why we had to read these parts of the service where we say how we’re sorry we’ve sinned and done bad things in unison. I remember thinking, “What have I done? I’m just a kid? I haven’t committed any great sin! Why am I saying this stuff?” I felt I was a pretty good girl for the kind of life I had lived through already.

When my mom remarried we moved. We eventually attended the Arcade United Methodist Church. There were no Presbyterian churches around there. Mom said this was a lot like our other church and that when Grandma went there, it was a Methodist church. Honestly, I really don’t know what the difference is even today. The believed in Jesus and doing the right thing for others. At the time we started, the minister was Native American. He had great stories to tell before the kids went off to Sunday school. By the time I was in adolescence, I REALLY didn’t want to go to church anymore. Mom & I would fight about this. Finally she conceded. (I found out later in life that she wished she’d pushed for it more and that she felt that she somehow failed me.)

My close girlfriends in the neighborhood had tried practicing magik for a short time. We were able to do some minor things, but it freaked us out so much that we didn’t do it anymore!

So then, Senior year in High School comes. Some friends of mine were leaving the school when another classmate crashes into them – right in front of the school. I remember I was staying over at a friend’s house when we heard the news. Someone died. It was a boy I had been friends with for many years and had a HUGE crush on. I was shocked. He promised he would take me to the prom. My friends were all crying and upset. I didn’t cry. I consoled them. Until, of course, after the wake.

I know that my friends were trying to be helpful. I did not want to see his dead body in the casket wearing that red sweater that he looked so handsome in. I wanted to remember him alive. After they dragged me to the casket and I saw him lying there like a big doll and saw the 3 roses my mom gave to him in our names (Chris, Tami & Joy), I just couldn’t take it. We went to the car to head over to the funeral at the Catholic church, and I wept. Deep serious weeping. I cried all the way there and through the entire service. How shameful that such an amazing person – who was a year younger than us all –  was dead, taken so quickly. I listened to that service and thought “No. No way is there a God. There is no possible reason that this sweet boy had to die.”

I rejected the priest’s eulogy. And that day, I also rejected the notion of God.

Research Irony

I’ve always loved irony. It’s just one of those things about me.

These days I am both planning my vacation to Disney
AND my demise.

I must say planning for my eventual death seems much easier! Especially after having read the fiction novel The Household Guide to Dying. It’s a fiction piece but it’s really amazing how this author and her character Delia got in my head. For someone who was not terminally ill (the author) she sure was able to relate her character to the way I’m feeling!

It’s got me thinking about all the things I need to settle up before my slow degenerating death. Aside from Disney and the other trips I’d like to take, I still have to take care of the boring details of death and dying. Things like music and passages for my funeral, if and when I want life support and feeding tubes, donating my body to science, organ donation, cremation, creating a will, guardianship, passwords and usernames to important accounts…. List goes on
and on.

Then there’s things I want to give to friends and family beforehand. Which means going through my crap. There’s no good way to ask people what of mine they’d like before I die. Man, I’m exhausted just writing all this!

I need a vacation! Oh wait…

I wanna be pretty

That’s it. As my body slowly gives away…I want to remain as beautiful as I can. I want to keep getting my brows done, my legs waxed and my nails done. Maybe I’ll even have someone else dye my hair! I want to have nice clothes and shoes. I want to go in STYLE! Even though I don’t wear much make up now, I want someone to apply it every day when I no longer can. My Grandma Parker looked gorgeous in the nursing home. I want to wear all my jewelry — earrings, necklaces, bracelets & rings! Oh yeah & my sunglasses – new-style wayfarers and a pair of MDG!

My First Buddhist Retreat – Day 3: 7-25-10

Sunday

Ugh — today is sooo sluggish. All I want is sleep! My roomies are early birds. They were up BEFORE the bell. (Bell rings at 6am – this time I actually heard the bell as I was already awake.)

We broke the rules by whispering in the kitchen. It’s a HUGE kitchen! We don’t know how all the things work in there!

It’s another rainy day. Which is fine by me. Yesterday was hot for that outdoor walking meditation. I’m going to skip it today. I kept falling asleep during meditation afterwards.

Now it’s sunny again. I got my stuff mostly packed. I planned on doing that at the 2pm walking meditation, but I want to get it all together while I’m still able to move around.

Almost time to head back up for teaching/meditation.

One thing I learned from last night, for sure, is Anam is just a guy. That’s it. Which is really all he is saying. “Hey, I’m just a guy – you can do this too!” That, to me, is more authentic than most of these folks here could ever dream of being.

Finished lunch — Pizza! O my god! These people know how to cook! Everything is just so delicious. I wish they could come home & cook all my meals!

This mornings teachings were spot on. He practically named me as someone who profoundly effected him this weekend! Someone who was dying told him they want to live the rest of their lives with awareness. Unless one of the other 3 people were dying, who else can it be? I made sure to listen & not fall asleep.

I just got yelled at for turning the lights on while I snapped a pic on my phone.

My space at Stillwood 1

My space at Stillwood 2

 

THESE WERE TAKEN WITH THE LIGHTS OFF

Well, gees, didn’t hear me complain when you guys woke me up so early. OK so clearly I have some more work to do here. Today is my last day.

This evening we’re having people “Take Refuge.” I think I will do it.

Look up book: Taming the Tiger Within by Thich Nat Hanh — great quotes about death – would like for funeral.

I’m gonna do it! I’m gonna vow to be one with the light  — oh wait — I don’t think I have that correct.  I’m taking refuge. Dedicating myself to moving ahead to find awareness & pass it on.

I did it! I vowed to practice non-violence, to be true to the dharma & commit to the sangha. Or… you should just probably read this Refuge in the Three Jewels. I cried during the ceremony. I opened my heart to let it all in.

This is the last night! I hope I get time to actually speak to some of these people. (Mostly ladies.)

I can’t stop coughing now. Great. The head lama (Ani Trime) just handed me a cough drop. It’s cherry. Bleh. I didn’t know those robes had pockets!

I finally asked about the Prayer Wheel! What a nice idea! Thanks, Larry for the talk!

Well that was pretty much it for my journal (Thanks, Lynne!) After the last meditation session we were all able to talk again so us weekenders could say our goodbyes. It was funny to be talking again and Wendi & I could finally hang out and chat. She stayed the whole week. Maybe next time I could too.

Everyone was so incredibly helpful. Sue brought my bags to my car. Larry had wrapped a gift for me to take back home. It was a beautiful Tibetan mat with with, I think, the silver plate and scissors used in the ceremony. Wendi walked me to my car. So nice and peaceful.

Of course then I made a wrong turn (it was dark when I left) and was lost for 30 mins in the dark forest. I stuck it together and did not panic. Finally I saw NEWARK! I knew I was safe. Who knew Newark was so big? I’d only been to Tom Wahl’s! Once I saw the Tom Wahl’s sign I knew I was on my way home.

So exhausted after a weekend of meditation!

My First Buddhist Retreat – Day 2: 7-24-10

Saturday

I’m starting to feel like the woman from Eat Pray Love. My inner dialogue is driving me CRAZY!

Just had dish duty. Yuk! I hate washing dishes. At least it was only breakfast. My new friend Wendi, has been helping me a lot. She used to watch Nik in the toddler room at church.

Got through a couple more hours of meditation. Anam is a funny guy.

Some thoughts have come up… If life & death are concepts — then what is the truth? (Reality?)

I don’t like to eat & be silent. Eating is for Community!

I’d like to know what the deal is with the prayer wheel.
– Can anyone spin it?
-What’s it for?

Boy it is hot in this sitting area…but cooler than outside.

Oh I don’t know how I’m gonna do this walking meditation at 2pm. I don’t know if it’s on the trails or what. I need an arm to do that.

How does Beth do it? She looks so happy. Beth is my other new friend who suddenly became paralyzed from the waist down. She’s in a wheelchair & she doesn’t let it stop her. I must keep in touch with her afterwards.

I wish I brought my camera. I guess it’s just as well. Keep me off my electronics.

OK walking meditation OVER. That was tricky — especially with all the obstacles on the floor. We went outside. I walked by the garden — just beautiful — recognized lots of plants & flowers, too. They arrange it all so nicely. I made a beeline right to the shade trees. I wonder if the bark was supposed to do that peeling? At least the walk was only 45 minutes. I wish it wasn’t so hot outside. Nice & cool in here in the meditation room. I could use a nap. I wonder when my brain will stop the crazy rambling?!

Oh my goodness — I fell asleep during this afternoon’s teaching/meditation! I then rested afterwards and almost missed the next session!

I got someone in my room now. Don’t know who they are but they took the box of tissues as her own! Grrr…

I guess I’ll see Anam. I can’t imagine what to say.

What a delicious dinner! Pesto & gazpacho! Yum! Kudos to Savory Thyme! Of course, I couldn’t help but think that lunch’s salsa became tonight’s soup! (Thanks, Micah!)

Looks like I’ll be meeting Anam tonight. What am I gonna say? I need guidance to see myself through this illness? I know I’m seeking guidnace — I’m not sure how to ask. Maybe they told him I’m dying. How to proceed…

Oh yeah — and I saw my awareness tonight during Anam’s guided meditation!

Well — I saw him… and … I CRIED. I could barely get it out… & I’m all runny nose, tears coming down — uh what a mess! Smart guy. He told me to turn that DESIRE to live to INTENTION to awareness & enlightenment. He says it’s there — it’s always there. Just need to accept it. Dive in. The body is just a guesthouse. Well, glad that’s over.

Message to Everyone

For those of you that haven’t heard, I have been diagnosed with ALS (Lou Gehrig’s disease). The neurologists believe it is a slow progressing version, but incurable. I’m still able to walk, drive and go to work at this time. We don’t know how quickly it will progress.

Many people have asked what they can do for me. At the moment, I don’t really need much care. I will in the future.

If you are interested, there are 2 charities that you can donate to help:

Walk to Defeat ALS — WXXI Walks for Joy

http://web.alsa.org/site/TR/Walks/UpstateNewYorkWalkteam_id=177270&pg=team&fr_id=6578

Thank you for helping us reach our fund raising goal! WXXI Walks for Joy is a team of WXXI colleagues and friends who are pledging support to our friend Joy who was recently diagnosed with ALS. Together we can make a difference in the lives of those, like Joy, affected by Lou Gehrig’s Disease. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS or choose a team member from the list and donate to our cause.

Send Joy Parker and Her Family to Disney World Fund

http://www.facebook.com/pages/Send-Joy-Parker-and-Her-Family-to-Disney-World Fund/128862073803837

My husband’s best friend Brian created this fund:

Joy was recently diagnosed with ALS. She and her family would like to go to Disney World this year, and I want to help them get there. So I’ve started a fund, with Joy and Mike, with a goal of $4,000. Please write a check for what you can, and make it out to “FBO Joy Parker” (FBO stands for “For the Benefit Of”). Send it to: Joy’s Disney Fund, C/O Brian Steblen, 2 Prospect Street, Fairport, NY 14450. They’d like to go in December, so get those pens out now!

Right now I’m trying to live to the best of my ability everyday. I’m hoping to make some trips and visit friends and family before I am unable to.

Thank you so much for being in my life.

You can keep up with me on here my blog: http://simplejoysonline.com