Monday, January 28, 2013

In Lou's Shoes...

Never faced a 90 mph fastball
Never played in Yankee Stadium
But three-quarters of a century later,
Battles every day in the prime of her life
 "I consider myself the luckiest man on the face of the earth."  These are the immortal words spoken by Lou Gehrig in Yankee Stadium on July 4, 1939.  That same day he also said, "I might have been given a bad break, but I've got an awful lot to live for" though he knew that his baseball career was over because of ALS.  Following this speech, he lived with ALS for another 23 months.  ALS is also known as Lou Gehrig's disease and here I am, over 70 years after his famous speech, thinking of this man and his strength and courage.  There is still no cure for the disease that adopted his name and took his life.  Today, however, there is hope that treatments to slow the progression of ALS, and yes, even a cure, will be found.  Will it happen in my lifetime?  I certainly believe it can!  To make it a reality though, we need to create more awareness about ALS and spread the word that we can make a difference when we join together.



Ironically, today it is another sports figure who is promoting ALS awareness.  Steve Gleason, former NFL player for the New Orleans Saints, is living with ALS.  After receiving his diagnosis in 2011, he started Team Gleason to fund research and develop technologies to assist people with ALS and other neuromuscular diseases to live independent, productive lives.  I have been following Steve's work and life via Twitter and his website since my own diagnosis last year.  From all I have read about him, it is clear that Steve is an inspiration and a symbol of hope for others living with ALS and, really, all who know him.  He recently asked some of his friends in the NFL to help him make this video.   It is very powerful.
Though he may not be able to "lace 'em up" and join his friends on the playing field today, he has found a way to bring them together and they are making a difference … speaking for all of us who no longer speak clearly on our own.
Team Gleason's motto is "No White Flags" and there are days when I have to say this to myself, a reminder that I will not surrender.  For me, this means I will continue to write this blog, continue to "talk" about ALS and the tremendous need for better treatments, better technologies, and ultimately, a cure … now!

Wednesday, January 16, 2013

One year later...

It was a year ago last month that the Ear/Nose/Throat doctor referred me to a neurologist.  It was a year ago last week that I had to walk into my bosses office and explain that my breathing and speech had deteriorated to the point where I couldn't continue to do my job properly.  It was a year ago this week that we packed up our stuff and drove to Florida so I could breathe easier and we could seek the best medical care.  It was a year ago next week that I had my first appointment at Mayo Clinic's Neurology Department and started on the long road to a diagnosis.

A lot has happened in this past year.  Some good, some bad…but mostly good.  The truth is, living with ALS really sucks because you are living with a life-limiting illness that slowly robs you of the use of your muscles, and in my case it has started with the bulbar region affecting my speech, eating and drinking.  On the other hand, there are so many positives that have come from this past year that it is difficult to stay focused on the negatives.  Some of those positives include:

I moved away from the cold of Colorado, which was really hard on me for reasons I didn't understand at the time, and now live in a much warmer climate where I can walk to the beach every day if I choose.  I'll admit, the summer temps get a bit too humid for me some days which can be a challenge, but that's why they invented air conditioning.

I get to spend every day with my boys.  At least part of almost every day is spent laughing together, and that is worth more to me than all the riches of the world.

I get to spend time with my Dad and Lisa.  We have shared holidays, special occasions, laughter and hugs, and the regular kind of every day moments that can mean so much together because we live in close proximity, something that hadn't happened in a decade. 

I spent a few days with my mom, my aunt, and two of my cousins in Orlando for some fun and laughs.  This trip was significant for me, not only because I got to see and hug these people I love and who love me, but because I didn't let my fear win.  Part of me was afraid to make the two hour drive alone knowing if anything went wrong, I would have little hope of communicating clearly.  I was also afraid to let them see me this way, knowing it would make them sad, and me too.   Still, in spite of the fear, I went and it was good.

I am writing, something I have always dreamed of doing but had little time or confidence to make it a reality.  My fingers still work well enough to type and I will take advantage of that for as long as possible.

I learned a new language that I put to use in my everyday life to make communication easier for me and those around me.  I always thought I would learn Spanish, I even took two semesters of it in college and had just started with the Rosetta Stone program before my voice became too slow and slurred to be understood.  However, it is Sign Language that has become my communication savior and for that I am so grateful!

I tried a new hobby - pottery!  This has been a fun and creative outlet that lets me spend time working with my hands, getting messy, making art, making mistakes, and taking time out from thinking too much.

I have found new ways to contribute in the world as old ways have slipped away.  Instead of volunteering at the library story time, I volunteered with the Turtle Wash Back Program, walking the beaches after storms to look for and rescue baby sea turtles trapped in the wrack line.  Turtles do not require me to talk, just my keen observation and patience as I walk the beach's wrack line a few miles at a time.

My sense of humor has become stronger, I think, in the past year.  I have reclaimed some of my snarky-ness that I had put away when I became a mom and, later, a school employee.  In my household, it makes the laughs that much more frequent and I love to catch my son off guard when I make a joke or comment he wouldn't have expected from me.

I have spent this year in the arms of the man I love, feeling his strength support me, his love bolster me, feeling cherished and desired and brave when I needed to most.  I didn't completely know what I could expect from myself when I found out I was facing this devastating illness but without a second of hesitation, Dan has been at my side, never allowing me to doubt that we are in this together.  He has the most amazing strength through all of this, and he surrounds the three of us in it.  I sometimes don't know how he does it, but it seems to come so naturally that I know it is just a part of his make up, of the incredible man he is, the man I fell for so completely all those years ago.  I don't know how I got so lucky, but there is no doubt that I am the luckiest woman in the world.

ALS takes so much from those whose lives it invades yet I know I can do this because I know I am not alone.  I feel it is my responsibility to shout, in whatever voice I have, that I am standing strong, I am speaking out, I am trying to help find a treatment and a cure, I am choosing life and love and, as long as I am able, I will hold my hand out to others like me who need to know they, too, are not alone.

Tuesday, January 8, 2013

Happy Birthday Stephen Hawking!

I just want to take a moment to wish Stephen Hawking a very happy 71st birthday! 

Dr. Hawking is a rock star physicist who is best known for his work relating to black holes.  He is a retired professor and author of many popular science books.  Who knew that he and I would have not one, not two, but three things in common?  Honestly, not me!  But, here they are:

1.  He and his (first) wife had their first date on New Year's Eve.  [Dan and I had our first date on New Year's Eve, 25 years later.]

2.  Neither of us has ever won the Nobel Prize.  [This is a stretch, I know.  He has made important discoveries about the universe and I can't point out one constellation, but still, its something we have in common.]

3.  We are both living with amyotrophic lateral sclerosis (ALS).

At the time of his diagnosis, Stephen Hawking was told he had about two years to live.  He chose to live and make his life count.  He fell in love and got married (twice), he had children, he finished his PhD, he became a professor, he became a best-selling author, he won numerous awards in his field, and the list goes on.  His life is an achievement in itself and an inspiration to so many. 

Physically debilitated by ALS but never relinquishing his mind, he has made the most of life these past 50 years.  Happy birthday to you, Stephen Hawking, and thank you for your inspiration to live life to its fullest!  

Friday, January 4, 2013

My fight ...

I was asked not long ago what I mean when I say "I am fighting ALS, I am not giving in."  The person was asking because she knows there is no cure for ALS and treatments are limited to making the patient "comfortable" as their body is ravaged by this horrible disease.  So, she asked, knowing that you are living with a life-limiting illness that will be the eventual cause of your death, what are you fighting and how do you fight?  These are valid questions and while some of the answers came to me immediately, others took some thought.

I understand that it is easy to feel, if you are fighting a losing battle, what is the point?  For me, the point is that today, I am alive.  For me, the fight is about living.  I choose to focus on living every day, not on how I will eventually die.  I fight against the thoughts that could pull me down into that dark abyss of depression where it is next to impossible to crawl back from without serious help, motivation, and often, medication.  I fight to keep doing the normal, mundane things that I have always taken for granted.  I fight to keep communicating one way or another.  I fight to be present in every day, to love and share myself with those who love me.  I fight because giving up is just not my way. 

At the same time, I am realistic.  I have already lost most of my speaking ability and I know that I am losing my upper body strength and dexterity.  I feel the changes in my hands, wrists, elbows, neck, and shoulders and I have to make adjustments and allow others to help me do some of the simplest things like cutting my steak or washing the dishes.  This is not to say that I don't stubbornly hold onto the idea that I can still do everything the same as before because I should be able to, but facing reality is not a perfect science.  Its funny how important the ability to wash the dishes, fold laundry, or comb your own hair becomes when faced with the truth that you won't be able to do them anymore.

As the new year began, I started thinking about the new ways I will find to keep fighting for my strength and purpose to live.  I've also been thinking about what I want to leave behind when the time comes.  One thing I can do now is to help myself and others affected by ALS, either personally or through someone they know and love.  Over the years I have supported causes that are important to me both through volunteer work and donations.  I realize that it is time to stand up and support the cause that is now my cause.

I plan to be vocal, in whatever voice I have available to me, to spread the word that ALS must be stopped.  We need even better technologies and less expensive options to help those who are losing, or have lost, their ability to communicate.  We need to see more open ended drug trials so patients who are seeing improvements can be allowed to continue with the drugs following the trial while FDA approval is being sought.  We need better treatments, we need to slow the progression of the disease, and we need to find a cure today!  I am asking for you to use your voice as well.  Please share my blog with your friends, family, neighbors, co-workers and classmates, PTA and book club members, your Bunco groups, your teammates and fellow commuters, and anyone else you know to get the word out that we need all the help we can get to make this fight winnable!

I also plan to start by raising $5,000 to support the ALS Association as they support those of us living with ALS.  The ALS Association is a great organization that immediately jumped in to offer help, education and support to me and my family following my diagnosis.  Here is the link to my personal Community of Hope page http://webfl.alsa.org/goto/twystedsam.  I hope you will visit it and help to spread the word by inviting everyone you know to also visit and learn more about ALS and what we can do to make a difference today!

Thank you, from the bottom of my heart, for reading this blog and for all of your support, love, and encouraging comments along the way!  Its harder than I thought to write some days, not just from a physical stand point, but because it takes a lot more of me emotionally than I expected it would to put myself out there during this journey.  There are times when I want to stay in bed and just dream because in my dreams I still talk clearly and I am not fighting ALS, I'm only fighting zombies which is way easier!   Instead I get up and find happiness and love in each day which makes me want to continue to fight…so I fight!