Playing Catch Up

So… my summer was pretty busy.. and then ended abruptly.

I had what I THOUGHT was a panic attack at work. Turns out I had a HUGE (substantial) pulmonary emboli. That is PLURAL for embolism. And it was not related to the ALS.

Needless to say, I’ve been out of commission since then.

I missed several MDA events, including the telethon. Basically I’m recovering slowly, but day-by-day getting better. I’m doing physical therapy and I’m able to work from home. I’m trying to get better so that I can return to the office.

One of the great things, aside from my wheelchair accessable van, is meeting some very kind people. They are really helping me to get better. I am so grateful!

ACOSTA / MDA Golf Tournament Speech

(Imagine the room filled with fruits and vegetables.)

Good Evening!

 

On behalf of the Rochester & Buffalo MDA, I’m honored to speak with you – employees and friends of ACOSTA. Your generous, national support to find a cure for Muscular Dystrophy, has totaled over $75 million dollars, since the inception of your Aisles of Smiles Campaign in 1985.

 

The Aisles of Smiles has, at its roots, a simple idea born out of a father’s desire to raise funding and awareness about his son’s disease.

From something simple come great things.

I’m so grateful that many of you came out today to participate in this year’s golf tournament at Cobblestone. Over 130 participants have raised more than $125,000 for the Buffalo and Rochester area.

 

What I’d like to do is to make a connection between the dollars you have raised, to the people affected by neurological diseases.

 

Illness affects everyone around them – children and adults alike.

 

In my case, I was diagnosed with ALS in April 2010 – and I can assure you, my disease affects my friends, my family, and especially, my six year old daughter.

Since ALS is a progressive illness, I need constant monitoring from a variety of doctors and specialists, as they check and maintain what nerve health I still have.

 

I know it sounds daunting – 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 the 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’s a real convenience for me.

 

From something simple come great things.

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. The financial support you provide, is making a difference to finding a cure – and to those affected with ALS, like me.

 

Financial support has the effect of providing care to my family as well…

Recently, I attended another MDA event.  I was able to personally thank a generous donor for a grant to install a stair lift in my home. It’s a miracle device that has given me back my independence and it also gave me back access to my home.

But most importantly, it gave me an insight into my daughter’s view of this illness.

After I thanked her, my 6 year old went up to her and said:

 

“Thank you for my mommy’s chair. Now she can float upstairs like an angel!”

 

From something simple come great things:

The healing power of your time and support really do make a difference.

 

They give us a chance to hold onto our dignity and our sense of normalcy.

We can be active family members – and to witness them at their best.

In the case of my daughter, her simple observation was not of sadness or pity, but of happiness and gratitude.

 

My prognosis has been lengthened from months to years. With this extra time, the MDA, and the continuing support of all of you, I will succeed in my simple goal:

I will see my six year old daughter graduate from high school.

Thank you.

 

Yard Sale

PERINTON/FAIRPORT:

Multi-Family Sale/Benefit of Joy – ALS – help get a van.

June 9th-11th 9-3, Sat half price/bag sale

10 Sedgmoor Lane off Ayrault
Fairport, NY

Furniture, Mat Cutter, picture frames, adult/children’s books, toys, antiques, collectibles, holiday\ craft supplies, housewares, bikes, clothing, TV, VCR, VHS, DVD, pet supplies.
_________________________________________________________

My Name is Joy Parker. I am 40 years old. I have a great job, a nice house & a fantastic family. I also have an incurable & fatal disease called ALS (Lou Gehrig’s Disease).

What is ALS? read more: http://www.als-mda.org/

I need a van to get around with my scooter.

We started by cleaning out our house to raise money for it. Since then, I’ve had more than 10 families add items to the sale! Thank you all!

We got it!!!!

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.

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.

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’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!

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!