Speech given at the 2012 MDA Boot Camp

Hello and Welcome to the 2012 MDA Boot Camp for Upstate New York Firefighters. I am Joy Parker, this year’s MDA Personal Achievement Award Winner, and I am honored to be the first to welcome you to this incredibly important event.

In August of 2011, three months after I was first asked to speak at this event, I suffered a pulmonary embolism. A blood clot became lodged in my aorta. These clots are an unfortunate side effect of not being as mobile as I used to be.

It began simply as a shortness of breath and feeling a little weak. Dizzy. I was at work at the time and my quick thinking co-workers called 911. And within 2 minutes, a whole truckload of firefighters were around my little cubicle saving my life.

Now, I’m here today to share with you something most of you never get to hear:
the exact thoughts of a person as they go through such a near-death experience.
And those honest thoughts in my head may surprise you.
What was really on my mind at the time was:

“Why is it all the good looking firefighters always arrive when I’m at my worst?”

Which brings me to today. I am so grateful to be with the finest, (and best looking) firefighters in Upstate New York-without the drama of not being at my best! I am a testament to the quick-actions of Engine 13, Battalion 2 in Rochester, NY and for allowing a little humor into an otherwise dark moment in my life.

I am here to thank you for your support of the MDA Boot Drive campaign, and to share with you how important they are to someone like me.

I have ALS, otherwise known as Lou Gehrig’s Disease. I am in a rare group – a woman under the age of 45. For me, that can be a lonely place to be sometimes. In this area, there is only one other woman my age with ALS. Although we “talk” now and again through email, we don’t connect face-to-face. She uses a ventilator and cannot speak. It can be daunting and scary at times to have a terminal illness like ALS and feel so isolated.

Those are the times when it would seem easiest to give up.

Just like, I imagine, how it must feel sometimes when you collect for the MDA. The weather does not always co-operate. Neither do the drivers as they dash by, preoccupied with their own lives. And many who do stop, no longer have the spare change they used to in this age of debit cards and on-line banking.

All I know for sure is as long as I am here, I can help.

And if I can help from this chair, then certainly so do you with your boots.

When you raise money, in any amount, you aren’t just helping to buy the expensive, durable goods, or medicines. You are buying someone like me the most precious gift of all – time.

The spare change you collect when spent locally, helps to pay for an MDA Clinic at the University of Rochester Medical Center.

There, I can meet with all kinds of specialists to help me with my treatment.

Neurologists, Physical Therapists, Rehabilitation Nurses, Speech and Mobility Professionals.

The clinic centralizes all of these professionals into one location for me rather than me having to travel all over to see them.

That saves me time.

That also gives me time.

ALS is not a painful disease, but it is an exhausting one. So any energy I can conserve allows me to concentrate on the important things.

Time to spend with my family – and with you here tonight.

The funds from the Boot Drive buys me time.

An hour with a caregiver.

A few minutes with a specialist.

Or a shared moment with another ALS patient.

Your efforts are incredibly important.

Your Boot Drives creates awareness.

Remember that when you collect those dollars – and cents, you are literally buying me, and the thousands of others who suffer with a neuromuscular disease: time.

Something you can’t put a price on.

Thank you.

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The State We Are In

Finally my family and I are making it back to church. I find it hard during the winter months. Plus I usually get some horrible sinus thing that REALLY knocks me out now that I am unable to cough. Anyway, the service was pretty powerful. It brought the news in the world and in our country right to my ears. I try to avoid news. It’s usually bad and tends to depress me. The Trayvon Martin shooter  (the 911 transcripts are telling) and the Afghan rampage, that I tried to not care about, smacked me in the face on Sunday. Then the Wise Rev. Jen told her story in the sermon (Going to the Balcony) about fearing for her family because she was in the country with her wife and kids and getting stared at by the locals. Also the bits & pieces I’ve read about college girls getting call sluts from grown men, I’m starting to feel like the US is really slipping. I wonder if all the right wing rhetoric is really having an adverse affect on everyone. I’m starting to think that people like Rush Limbaugh and that Beck guy are just hate mongers. They should be charged with infighting hate crimes! They rally people to do their bidding in their small worlds. Do they not know that an ENTIRE WORLD is out there? People have banded together in other countries by utilizing social media. I think it’s time for the real Americans of the United States to say “knock it the fuck off.” Peace.

Speech Given to the Ridge Road Fire District

This speech was given last night to inspire the Firefighters for their Annual Boot Drive on February 1, 2012.

Thank you for allowing me to speak with you tonight. I am here to thank you for your support of the MDA Boot Drive campaign, and to share with you how important they are to someone like me.

I have ALS, otherwise known as Lou Gehrig’s Disease. I am in a rare group – a woman under the age of 45. For me, that can be a lonely place to be sometimes. In this area, there is only one other woman my age with ALS. Although we “talk” now and again through email, we don’t connect face-to-face. She uses a ventilator and cannot speak. It can be daunting and scary at times to have a terminal illness like ALS and feel so isolated.

Those are the times when it would seem easiest to give up.

Just like, I imagine, how it must feel sometimes when you collect for the MDA. The weather does not always co-operate. Neither do the drivers as they dash by, preoccupied with their own lives. And many who do stop, no longer have the spare change they used to in this age of debit cards and on-line banking.

I imagine those can be the times when it would seem easiest to give up.

Or …at the end of the Drive, when the totals might not have met your goals and you feel that what was done was only “good enough”.

Maybe allow yourself to question “does it really matter”? It can be hard to imagine when the cost to bring a drug or treatment from the labs to me can run 1.8 billion dollars, if it matters’ whether you achieved your goals or came close enough?

With no immediate cause or cure for neuromuscular diseases like ALS or Muscular Dystrophy “What does it matter”?

That is a fair question.

I ask myself that every day.

I have this terminal illness, what does it matter if I stick around?

I know where this is all going – right?

Or do I? Do I really know? Of course not.

All I know for sure is as long as I am here, I can help.

And if I can help from this chair, then certainly so do you with your boots.

When you raise money, in any amount, you aren’t just helping to buy the expensive, durable goods, or medicines. You are buying someone like me the most precious gift of all – time.

The spare change you collect when spent locally, helps to pay for an MDA Clinic at the University of Rochester Medical Center.

There, I can meet with all kinds of specialists to help me with my treatment.

Neurologists, Physical Therapists, Rehabilitation Nurses, Speech and Mobility Professionals.

And people like Sally Kramer, who solves problems for me in so many ways.

The clinic centralizes all of these professionals into one location for me rather than me having to travel all over to see them.

That saves me time.

That also gives me time.

ALS is not a painful disease, but it is an exhausting one. So any energy I can conserve allows me to concentrate on the important things.

Time to spend with my family – and with you here tonight.

The funds from the Boot Drive buys me time.

An hour with a caregiver.

A few minutes with a specialist.

Or a shared moment with another ALS patient.

Your efforts are incredibly important.

Your Boot Drives creates awareness.

Remember that when you collect those dollars – and cents, you are literally buying me, and the thousands of others who suffer with a neuromuscular disease: time.

Something you can’t put a price on.

Thank you.

 

Thank You, Nicholas Accorso, for My New Van

It was kismet that brought me to know Nicholas Accorso.

My husband & I had been looking off & on for a van months before our huge yard sale. It just happened one day he looked on the ESL Bank Swap Sheet:

Wheelchair accessible 2006 Grand Caravan $16,500. 44k mi. Start Date: 09/23/2011 End Date: 10/23/2011
2006 Dodge Grand Caravan. 44,000 miles. This is a lowered, Wheelchair accessible van. It can seat 6 including the Wheelchair passenger. New Air conditioning, new muffler and exhaust pipes. Tires one year old. The Wheelchair ramp is manual and is on the passenger side of the car. The mechanics and body are in good shape.

  

The price Mr. Accorso gave was more in our budget range than any other vans we’d come across!

Naturally, my husband was leaving for a week-long business trip, so we asked if they could hold it, till we could come see it. We sent a family friend to check it out and it seemed like a great fit! we still wanted to se it for ourselves.

Ironically, my husband & I always said we were NEVER going to buy a minivan, EVER. We were diehard Honda sedan fans. Ah… youth. Well, life changes in ways you’d never expect.

We met the Accorsos the next weekend. They were friendly and helpful, and really wanted to get rid of this van. Which we were really wanting to buy it! As we got to know them, it turns out they just lost their son to MD.

Nicholas Accorso was diagnosed with Muscular Dystrophy when he was 10 years old. He appeared on the MDA Telethon when he was about 11 and met Gabe Dalmuth for the first time. He passed away August 18th, 2011, 19 years old. Nicholas was a friendly, curious person who was adventurous and loved baseball. He also loved to travel. He explored the world right up to the end, traveling to South Dakota on his last family trip to use a Federal Parks Pass. Despite his condition, he was very accepting of his illness and did not let it get the best of him. He also had Autism, making his outward, social demeanor all that more special.

Here I am, back from near death myself (my embolism), the MDA Personal Achievement Recipient, and I am receiving the van that took this boy on his travels. All of us had shared some tears.

I know that Nicholas’ family misses him, but I am very grateful. I hope I can make many memories happen with my family in this van.

P.S. Thank you to everyone who helped me to raise money. It has helped us put a dent in the purchase. Now I can go places with my motorized wheelchair – I feel so free!

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.