Baseball and ALS Awareness go hand in hand...

ALS Awareness Night with the Suns

Last month I was asked if I would throw out the first pitch on ALS Night at our local minor league baseball stadium, home of the Jacksonville Suns.  In my continuing efforts to help raise ALS Awareness, I agreed.  As the day approached, I started to get a little nervous, thinking about my physical inability to throw a ball beyond a few feet.  Then I realized that there was no reason to be worried.  Seriously, what was the worse that could happen?  The ball wouldn't make it to the catcher?  So what, I'm there as an ALS patient, not trying out for the team.  With that in mind, the nerves went away and I started to get excited about this once-in-my-lifetime event.  It wouldn't be a MLB game and it wouldn't be televised, but I wouldn't have to do any public speaking so why not have fun with it!   

Lizzie reading Lou Gehrig's speech

Last Thursday, the big event arrived.  The stadium, which is really nice, is right on the river in downtown Jacksonville.  As it was ALS Awareness Night, they honored Lou Gehrig by having a NY Yankees number 4 jersey on display and Lizzie Danner of the ALS Association read Gehrig's famous farewell speech from July 4, 1939.  It is a moving speech, no matter how many times I hear it, and Lizzie did him proud with her reading. 

Finally, it was time for the walk to the pitcher's mound.  Knowing I could not throw the ball the full distance, when they announced my name I started walking from the mound toward the catcher, just a few feet, and we both chuckled a little bit.  I stopped, pulled back with my right arm, stepped forward with my left foot, and threw the ball like I still had the strength to do it.  The ball made it to the catcher (with one small bounce near his foot) and it was over.  I was happy, and proud, that I had agreed to be there, to participate in this event completely outside of my comfort zone, for this important cause.  

Throwing the ball to 2nd baseman Noah (Derek) Perio, #3

Family fun time at the game

When working toward the goal of raising awareness for something as uncommon yet incredibly important as ALS, I think it is best to attack it from every angle.  I appreciate that there are many aspects of raising ALS awareness that include fun for the whole family!  It was a good game (Suns won 8 - 2) with a couple out-of-the-park home runs. Go Suns!

Tim and me

During the game, I had the privilege of meeting another ALS Advocate, Tim Cummings.  I have known of Tim for a few months, since I became involved in the Walk to Defeat ALS in Jacksonville, but we had not met before the game.  Tim's wife had ALS and he continues to honor her dream of "A world without ALS" by being active in the ALS community and helping in many areas to raise awareness and funding. He is a lovely man and I am very happy to have had the opportunity to meet him, and to wish him a happy birthday, at the game. 

I want to thank Lizzie Danner for offering me the opportunity to help raise ALS awareness in this fun way and thanks to my family for being there to watch and cheer me on!

ALS Awareness Month wrap-up...

Wearing my Sam's Twysted Ride t-shirt

This month I set out to raise ALS awareness.  I made eight specific commitments on day one and, throughout the month, I followed through on all but one of them.  (I had planned to attend an event on May 24th  with the MDA but they cancelled the event and, therefore, I was unable to attend.) 

I posted a blog entry every day, all month long.  I wore a Sam's Twysted Ride t-shirt at least twice a week, often more.  I asked my family and friends to wear their Sam's Twysted Ride t-shirts too and I received pictures of some of them doing just that (thank you to all who participated in this).  I was not able to attend the cancelled MDA event, but the garage sale was very successful and we raised $114 for ALS Association's Change for ALS fundraiser.  The garage sale also proved to be a great place to share my story and spread ALS awareness to the many people who asked and donated.  I tried two different eye-tracking devices and, although neither worked for me as the solution to my future communication concerns, I did blog about my experience and plan to keep trying new technologies as they become available.  I shared my personal ALS story on ALSA's and MDA's ALS Awareness Month websites, I read stories by others whose lives have been affected by ALS, and I shared their stories on Facebook and Twitter throughout the month.  I have new followers for the blog, thanks to your helping to spread awareness…thank you so much! 

The thing I struggled with this month was living with ALS in the forefront of my life.  This was an unexpected side effect of blogging everyday.  Usually, though ALS affects me everyday, my focus is on living my life, adapting as needed to the changes that occur, but ALS is generally not the central focus of my life.  So, this has been a long and emotional month for me. 

I am proud of my family, my friends, and myself for taking part in this ALS Awareness month and I know that our efforts will continue until a cure is found.  Until then, know that I am grateful to all of you for your love and support as I continue to live my life everyday with love, laughter and…with ALS.

The ALS Registry...

The CDC's Agency for Toxic Substances & Disease Registry, or ATSDR, has created a registry for those living in the United States who have been diagnosed with amyotrophic lateral sclerosis (ALS).  Registration is voluntary and with every person who does register, there is a greater chance to have another piece of the ALS puzzle fit into place. 

Scientific researchers are able to access this valuable data to help them learn more about the disease and who gets it.  Armed with the answers to those questions, there is hope that the answer for how to stop ALS in its tracks, how to end it once and for all, will be found.

To learn more about the registry, click here.  If you have been diagnosed with ALS, please consider joining the registry today. 

I, for one, am ready for the ALS puzzle to be solved!

Balance...

I remember going to gymnastics classes for a while when I was pretty young.  In my memory, I really liked gymnastics - the uneven bars, the tumbling, the balance beam - but I only took lessons for a short time.  Sometimes now I feel like I am walking the balance beam in my life, trying to find the right combination to stay on the beam while knowing that with every step, every twirl, every movement I make, it is likely to send me off into the abyss below.

Balance is a much easier thing to achieve when one is walking on solid ground, but once vaulted onto the raised beam, having to create a routine on the fly where one can find their rhythm is challenging at best.  When the judges weigh in, it can feel impossible. 

When my life feels out of balance, just one thing of many that I wonder about is how am I going to meet the needs of others while I am struggling to figure out which of my own needs I can take care of, which I need help with, and which are just going to have to be forgotten? 

Balance can be tenuous and often comes at the expense of focusing on just one thing and letting everything else go.  Ideally, I think that once balance is achieved, and the judging is over, it is easier to add back the things that work in favor of maintaining that balance.  In many ways, life is just a balancing act, after all, and the trick is to forget about the judges and just give the performance that is best for you.

Jenny's gift...

Jenny & me in Orlando, November 2012

 I remember reading somewhere that cousins are our first friends and, for me, this is so true.  I have always admired my cousin Jenny for being a strong person.  She lives her life fully and shares who she is with her family and her many friends, allowing them to join her in experiencing life with such zeal.

Jenny & me in NYC, March 2007

The thing is, you just don't always know the impact you have on someone unless they come right out and tell you, and how often does that happen?  So, when I received this guest post from Jenny, I was so touched.  To think that, maybe, some small part of the wonderful woman she is today is because of me?  Doubtful, I know, but still, it is nice to know that I have had a positive impact on her life, as she has had on mine.

Thank you Jenny, for giving me this beautiful gift, I love you!

____________________

Jenny's Guest Blog:

Growing up, I was always excited to see my cousins drive into my cul-de-sac for a visit.  Not only did I get to hang out with my cool older cousins, but my cousin Chrystie always came bearing gifts…a big bag of hand me downs!  We would take the bag into my room and go through it.  I eagerly looked forward to what treasures I would be getting to add to my wardrobe!  I remember one piece in particular, it was a black knit sweater with pink specks (think 80’s!).  I loved that sweater and wore it every “free sweater/sock” day at school (think Catholic school uniforms!).

Down the road, the gifts I received from Chrystie continued.  She gave me the gift of acceptance, as she let her little cousin tag along (or spy on her) on various camping trips and outings. Even though she got annoyed, she was never unkind and taught me, through example, to be accepting of things you sometimes cannot control...like the untameable force of younger siblings and cousins!

As a young adult, Chrystie gave me one of my most special gifts.  I remember calling Chrystie to see if I could share her anniversary date with her.  She had given me a model of marriage and a loving relationship I hoped I could emulate in my own relationship.  She graciously agreed, so now I share my amazing day with this fantastic couple and I am grateful.

The gifts from Chrystie have not stopped. With her diagnosis of ALS, she hasn’t skipped a beat.  The gifts keep coming…. 

Of course, when I heard the diagnosis I was scared and sad but, talking with Chrystie, I heard strength in her voice and see, daily, the conviction and drive she has to spread the awareness of ALS.  Through this journey, she has given me the gift of appreciating now.  The moments we have in life, regardless of their nature, all contribute to us being fully present.  Appreciating what we have and valuing those we chose to spend our lives with is a gift I use and share daily.

I am so thankful for the many gifts I have received over the years from Chrystie.  Her courage is an inspiration.  I will continue to cherish those gifts and spread awareness of ALS and do my part to find a cure.

____________________

US Military Veterans and ALS...

Did you know that our military veterans are more likely to be diagnosed with ALS than those who have not served?  Studies show that veterans in the United States, regardless of which branch of military they have served in or whether they served during a time of peace or combat, are twice as likely to suffer the debilitating affects of Lou Gehrig's Disease than those who have not served.

On Memorial Day we remember and honor all of the men and women of the United States Armed Forces for their service and their sacrifice.  Being a member of the military is more than a job; it is a calling, a tradition, a lifestyle, a family.  My deepest appreciation and gratitude go out to all who have served, and to their families who love and support them, wherever they may be.

Please take a moment to read the story of retired Air Force Technical Sergeant David Masters who is living with ALS, fighting this new battle for his life on the home front.

Just one sentence...

"With two paths before me, I decided to break new ground and along the way found the woman I am today – not perfect by any means, but with qualities I am proud of."  -Chrystie 2009

A few years ago, I was asked to describe myself, my life in one sentence.   This is what I came up with.  I thought it was an interesting thing to do, think about one's self, one's life, and try to put all the thoughts, the pieces, the experiences into just one sentence.  In truth, I wrote a whole page of different sentences, many similar to each other but very different than this one...this one stood alone and as I was reading back over them, it caught my attention.

If asked today, I might write something different, but then again, maybe not.  I think this is a good depiction of how I see myself.  Of course, there is so much more, but I like the truth in the simplicity of it.