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.

Busy As A Bee!

I’ve just started getting back into creating art again. I don’t know if it’s Spring Fever or that I’m reading old American poetry (The Mentor Book of Major American Poets), or if Nicole has inspired me with her amazing work.

My next show coming up is at the First Unitarian Church in the Williams Gallery. It’s a Church Member show so I only have 1 photo. It’s my gorgeous Windows with Baskets shot. The show runs from April 8 to May 16th.

This super cool show is an anonymous one for the Rochester Contemporary Art Center called 6×6. I jumped into using acrylics this time! One I’ve called Summertime and the other is called ALS. I had a great time & my youngest daughter made something as well! This show runs June 4 until July 10 – but they will have all the artwork on the website for people to purchase for $20 a piece. Proceeds go towards the art center.

If you’ve been following my tweets you’ll see that I’m trying to do a little poetry for poetry month. It was something I thought about doing for a while, but then we needed something for our Poetry Month page at my real job & I thought it might be fun to get people engaged, so far, not so much. Oh well! I encourage everyone to write a few words on Twitter and use #wxxipoems to see what we can come up with!

I’m terminal in the terminal

I have been traveling. Since I was diagnosed with ALS, I’ve been to NYC – twice, a “local” weekend retreat, and my big trip alone to Seattle and Portland.

What a hot day and night!

My mother-in-law Dot & me in the City!

They were all fabulous – and exhausting! I didn’t bring a camera for all of them. Sometimes it’s nice to just go experience travel and new places. Thankfully, I do have some cell phone pictures although they look like they were shot with a pinhole camera.

Joy on the deck of the Space Needle above Seattle, WA

Pike's Place Market in Seattle, WA

Joy Eats Voodoo doughnut in Portland, OR

Clearly, I had a great time. I admit, however, that I was terrified to travel by myself now that I am disabled or handicapped or whatever the damn term is. I kept stalling to get my tickets for Seattle because I just didn’t know how I would do it. For the most part people were watching out for me. It wasn’t always the airline staff. Chicago airport was not very speedy in getting me a wheelchair to my connecting flight on the way out and on the way back. The flight attendants were getting pissed off at these guys! I only had my walker broken on the way there but not on the way back. I still need to deal with the airlines for that. Apparently they charged me in Rochester a baggage fee when it should have been free!  Oh, and apparently if you take your handicap parking permit to Seattle, you can park anywhere for free! Is it like that everywhere? So much to learn! I was quite wiped out after all these trips so hopefully. I’ll be able to recover from the next one.

Checked off these from my Bucket List!

2. Visit my friend Michael on the West Coast.

10. Be a tourist in NYC. – I went to see a couple great plays on a hilarious road trip to NYC! And I finally saw the Statue of Liberty. She is awesome! Just an incredible architectural statue. Thanks, Dot for that gift!

Next up — December — Disney World!

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

Bucket List

I need to start one. I’ve been so busy with my job and my family, that I just didn’t think about what I’d want to do “someday.”  I guess this is something else in the terminal illness process. What do I want to do before I die? Or before I am unable to function or enjoy it? I don’t know! I have just recently come up with some… travel, I guess is a big one, visiting with my good friends before they start to pity me, do fun things with Nicole, teach Kate how to be a lady (yeah me of all people!).

So I’d like to hear some suggestions… what’s on your “Bucket List?” What do you want to see and do before you kick the bucket? What is the coolest thing or place to explore? Where’s the best food on the planet?

Woe is me

Now, I’m not trying to get lots of sympathy here. I’m really not! I’d like to think the title of this post is really just full of sarcasm. The rest of the post is not.

I’ve been sick. First we thought it was asthma, then anxiety, then plantar fasciitis, lots of physical therapy (land and pool) but after years of not walking right, not walking up stairs and falling down, I finally went to a neurologist. I get my results from all my testing, supposedly, Monday, March 15, 2010.

I’m more than a bit nervous. Especially today after getting a call from the doctor’s asking if I want to come in TOMORROW and then getting mail form the office as well. Both turned out to be routine type things.

I hadn’t been thinking about March 15th for a while! Although, I KNOW my mom is. She’s praying for me. My mom’s cousin even took a photo of me to the laimas in India so they can pray for me. I’m sure many of my friends and family and even coworkers are all sending prayers in my direction. I’m honored and I thank everyone. Hey, it can’t hurt, right?

Now I’ve been obsessing for years on what MIGHT be wrong with me. Could be a pinched nerve or something like that, OR it could be ALS or MS. Now those last two frighten me. They make me have my life flash before my eyes. I don’t want to miss my kids growing up to be bright strong women and give me grandkids. I don’t want to leave my husband without his partner. I have SO MUCH that I want to accomplish as well. I’m not sure I can bear the news if it’s bad.

I am sick & tired of being sick & tired. I want to know. I need to know. I’m sick of people asking me if I’m pregnant because I’m gaining weight and I walk wobbly. I tired of falling down everywhere where I can’t get up and need strangers to help me get back up. I can’t take care of my house and my family the way I used to. I can’t even run after my 4 year old to play a game of chase.

So for the last 2 weeks, while I wait for this appointment on Monday, I try not to think about it. Or I joke about it. Granted, the meds help. I will take this time to NOT fret and to enjoy the next few days with my family. I will NOT be attached to any outcome.