Friday, May 31, 2013

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.

Thursday, May 30, 2013

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!

Wednesday, May 29, 2013


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.

Tuesday, May 28, 2013

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 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.


Monday, May 27, 2013

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.

Sunday, May 26, 2013

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.

Saturday, May 25, 2013

Eye see you...

When it comes to communication devices and technology, I want to stay ahead of the game, so to speak.  I don't want to find myself with the need for something before I know what will best meet that need.  Ideally, I would love to find a technology that would once again allow me to have clear, fluid, regular paced conversations.  A device that pulls specific thoughts that I want spoken right from my brain and then speaks them for me maybe?  Chances are, that could get me in trouble from time to time if the filtering system ever malfunctioned...who knows what could come out!

Seriously though, a few months ago I did participate in a brain communication study where they hooked me up to a computer and tested its ability to understand my thoughts as a way to communicate using brain waves.  It sounds very sci-fi and the reality is that it is unlikely to develop into a portable talking device anytime soon.  Therefore, in the interest of going with what's available, my husband and I have been doing some research on the current technologies in eye-tracking and communication devices.

Earlier this month, I tested out the new Tobii PCEye Go device which is small, lightweight, and designed for personal use with a laptop.  The device only works with certain Windows operating systems and, since I run a Mac, I had to order a copy of Windows to give the device a thorough test.  Once everything was installed, the test began.

The thing I like about the Tobii PCEye Go is that it is designed to operate your entire computer with the blink of an eye. Once calibrated, you can actually choose to use a blink or a long stare in place of a mouse click.  The idea behind this is exciting to me, but the reality was a little more frustrating.

First, I had to learn to keep my head still and only move my eyes, which was easy enough.  After the calibration, I was ready to take it for test drive.  Right away I felt that the sensitivity in the tracking was either too fast or too slow.  When I tried to bring up the Internet to do a search, I would hold my eyes steady on each letter and blink but the device would jump to another letter until I settled back to the one I wanted.

This device can offer an exciting connection for many who have been looking for just this type of thing.  I believe it has great potential and may work perfectly for the right people, but after a couple of hours of frustration, I realized the device was just not for me.  Part of the problem may have been that I was using an operating system I don't normally use but, no matter the reasons, the frustration with the experience outweighed the benefits for me.  Also, because it works with a laptop computer there is some ability to have it be portable, but it is not lightweight and won't fit in my purse.  We decided to keep looking at the other options.

Purely by coincidence, we were loaned another Tobii product, the MyTobii P10.  This is an older, stand alone type of communication device that also works with eye-tracking.  Though the system is older, the eye tracking works really well as long as you don't need to look at the edges of the screen.  I was able to plug it in, calibrate it, and play tic-tac-toe and chess right away.  The blink to click worked really well in the games.  The thing is, the games have huge icons on the screen and they are hard to miss.  When I tried to type in the search bar for access to the Internet, things got more complicated.  When looking at smaller things, like letters and symbols, the eye-tracking does not have the same precision that I expected and the frustration returned.  This device is also very heavy and must be mounted on something sturdy for regular use.  It is just not what I am looking for.

While I am tempted to be discouraged, I know that there are many companies developing new devices and technologies specifically to utilize eye-tracking.  One such company is The Eye Tribe.  They are developing eye-tracking technology with the idea that it can be used in any portable and mobile device, like tablets and smartphones.  Their first development tablet package will be released in June and my husband is just waiting to get his hands on it to see what he can create that would work best for me, and eventually others like me.

There are obviously many benefits to having better eye-tracking technologies in smaller devices, one being the cost.  The estimates for an Android tablet with The Eye Tribe specific eye-tracking software included is under $1,000 - that is a far cry from the $4,000 to $15,000 and up for many of the larger devices available today.

I know that one of the biggest challenges for me personally has been, and will continue to be, slowing down.  I am used to typing fast and navigating the computer quickly and smoothly due to many years of experience.  I have had to learn to deal with my slow, slurred, mostly incoherent speech while I still talk quick and clear in my mind.  I have had to learn to type slower and with different fingers on certain keys because my hands just don't work like they used to.  Dan has written, specifically for me, an incredible text-to-speech app that works perfectly, making it so much easier for people to understand me.  You would think I would use it all the time, but I don't use it as often as I should because I am slow at typing out all that I want to say.  By the time I am ready to hit the "Speak" button, the conversation has moved on.

With better, affordable, and mobile eye-tracking devices available, I am hopeful that I can at least maintain my ability to communicate, albeit slowly, and I will not just become the woman at the table with the pretty blue eyes.

Friday, May 24, 2013

In their own words...

Being the book lover that I am, over the past few months I found myself looking for autobiographies and biographies on people who have also had ALS.  I started with Lou Gehrig and Steven Hawking as they were the two most famous people I knew of to have the disease.  After those, I started to look for books written by or about someone whom I might have more in common with, women who were diagnosed with ALS in their 30s or 40s.  Admittedly, there weren't many.  I found four to start with.

Reading the books hasn't been particularly easy, the emotion of it all gets to me time and again.  So far, I have only completed one of the books and I am currently reading two others with the fourth not yet begun.  I am determined, however, to learn what I can from these women and their personal experiences. 

While our lives do not share many similarities, from marital status to how many children we had to education and the careers we chose, I definitely feel a connection with these women.  Sometimes it is a physical feeling they have described, other times an experience, an interaction, an emotion or expression that has been mine as much as it was theirs.  Though ALS hit each of us differently, at different times in our lives and it took different paths in our bodies, we share a commonality that is undeniable; none of us saw ALS coming, yet we have all faced it the best we could.

If you are interested, here is a list of the books.  I finished the first and found it very inspirational and interesting.  I am currently reading the second and am almost through it, though I have had to set it aside a few times to pull myself together.  I have only started the third and have read maybe 3 chapters so I can't offer much yet except to say the author started Project ALS.  Finally, the fourth is on my Kindle and I haven't started reading it yet.

1.  I Remember Running:  The Year I Got Everything I Ever Wanted - and ALS by Darcy Wakefield

2.  Until I Say Goodbye:  My Year of Living With Joy by Susan Spencer-Wendel

3.  Tales from the Bed:  A Memoir by Jenifer Estess

4.  The Butcher's Daughter:  The Story of an Army Nurse With ALS by Sandra Lesher Stuban

One of the best ways I have found to spread ALS Awareness has been to share my own story.  As a part of ALS Awareness Month, I honor these women for doing their part in sharing their stories and I hope you will consider looking for one or more these books at your local library or bookstore.

Thursday, May 23, 2013

New life for an old dream...

I have always enjoyed writing, as far back as middle school anyway, but I just never had the confidence to go anywhere with it.  I have journaled now and then, I wrote for my high school newspaper, I briefly thought of getting a degree in journalism, I wrote essays and other papers for college, I've written bits and pieces of this and that, and I even wrote a couple of short stories that no one has ever seen. 

For years, I have dreamed about really writing and I have been told by one or two others that I should write a book, but I always thought their suggestion was based on how much I like to read and not my writing skills.  For me, the biggest question I have faced with the idea of writing a book is, what should I write about?  What could I have to say that would be interesting to a large population of virtual strangers?  I never could come up with a good enough answer for this and so, it remained just a dream.

Then, when my son was 4 years old, I finally sat down and started writing a children's book.  It took a few false starts but then I settled into it and I was almost finished, already looking for an illustrator, when 9/11 happened and everything seemed to change in an instant.  With all that was going on at that time, I set aside the book and forgot about it.  By the time I took it out again, it just didn't feel right anymore and I put it away along with the other things I have written over the years.

I never would have thought that the answer to following my dream would come in the form of writing my own story of living with ALS, but sometimes the unexpected answer is the only one that makes sense.  In the end, it took losing my voice for me to be willing to write for an audience, but now my story is out there and this old dream has a new life.

Wednesday, May 22, 2013

An ALS moment...

Today I went to Starbucks after my massage and ran into a man who, less than a year ago, had given me an opportunity to feel hopeful and proud for overcoming a stumbling block.  (I wrote about our first encounter last September in the post Still talking, one way or another...).  I was happy to see him, but when I raised my hands to sign hello, I realized that I was at a loss…not for the words, but for the ability to express them in sign. 

My fingers and hands just do not move like they did a few months ago and, much like my speech, my ability to sign coherently is lost.  He told me not to worry, he can read lips and the sound of my speech won't matter.  Unfortunately, my mouth does not properly form words so lip reading doesn't work well either.

It seems like this new loss should not feel so disappointing because I only learned to sign such a short time ago, but it is really about the fact that I thought I had found a way to overcome my speech loss.  I thought I was so clever to just learn a new way of speaking, a way that not only allowed me to continue to communicate fluently, but it opened up my shrinking world to new friends...and I felt like I was beating ALS in a small way.

I remember fondly that moment in September, my moment, when I felt good about facing the challenge and finding a way to adapt.  Today, however, ALS had a moment when I came home and cried for the loss.  I suppose this was an important reminder for me that there are many levels to ALS Awareness.

The moment passed and the laughter returned which helped me to remember this:  it is ok to have the sad moments because they make all the others that much sweeter.

Tuesday, May 21, 2013

Important things...

The most important things in this life are not things at all.  They cannot be bought but must be cultivated, nurtured, and treated with care and respect.  For some, it takes a tragedy to strike to remind them of what is truly important.  For others, their true valuables are already known yet tragedy strikes anyway.

None are immune to loss, no matter their age, wealth, character, beliefs, nor faith.

With that in mind, I ask you to remember each day to "Live, Laugh, Love"…

Monday, May 20, 2013

Beth's story...

Beth and me May 2013
ALS is known for what it takes from each person it touches, however, in this case, I gained something because of ALS … a friend.  I met Beth at the first ALS Clinic I attended.  We are both in our 40s, both worked in the public school system, and both have been diagnosed with bulbar onset ALS.  Although talking is hard for us, we are able to stay in touch by email.  For me, it is nice to know someone else who understands many of the frustrations of this disease but who is also unwilling to allow those frustrations to become the focus of everyday life.  Together, we can be honest about how we feel, both physically and emotionally, and the things we fear, not just for ourselves but for our families, and because we are both living it personally, the level of understanding we share is just that much stronger.

Having Beth as a friend is very special for me.  We share many similarities and yet have a great many differences in our lives.  The same can be said of our experience with ALS because this disease takes each person on their own journey and it progresses differently in everyone.    

I am very happy to know Beth and to have her as my friend.  I am inspired by her perseverance, strength and the grace in which she shoulders her illness while raising her granddaughter.  Yes, Beth is living with ALS but the important thing is that she is living each day.

Thank you for sharing your story, my friend!


Hello, my name is Beth and I want to tell you my story of how ALS has impacted my life.

In the fall of 2010, I began noticing symptoms that just did not seem normal.  I was having great difficulty lifting my head when laying flat or in a reclined position and I was having trouble  swallowing certain foods.  When all these symptoms became noticeable to me, I tried to ignore them because I was extremely busy.  Teaching Pre-K in a public school system was my job and I loved my job.  I was always trying to find new ideas to use in the classroom or a better way of doing things so my students would have the opportunity to learn.

My husband and I were raising our one year old granddaughter and, as all children at that age are, she was full of life.  My father had Alzheimer's and he passed away in October 2010.  I just did not have time to deal with those crazy symptoms I was having.  By the end of the school year, I decided I better let my doctor check out this swallowing issue. 

So, in the summer of 2011 my journey with ALS (Amyotrophic Lateral Sclerosis) or as some know it, Lou Gehrig's Disease, began.  Of course, at the time I had no idea what laid ahead.  I went from seeing my gastroenterologist to my first neurologist in September 2011.  The neurologist was very concerned about my symptoms so he ran every test possible and was just not 100% sure of a diagnosis.  He sent me to the Mayo Clinic in Florida.
God had his hands on me the entire time.  I just had a peace about my life and I knew that God was in control, which made it easier for me to prepare myself for my future.  I was so blessed to end up under the care of a wonderful neurologist who just happened to be the head of the ALS Clinic.  The tests began all over again, which was fine with me because I wanted an answer.  My symptoms had progressed slightly.  My voice was becoming a bit weaker and it had the sound of someone with a severe sore throat, somewhat hoarse.  I was still eating but I had to watch what I ate to be able to get it down my throat.  I was also a little tired and was just not able to do the things that I use to do, like running around with my four and five year old students, lifting things that had a little weight, and I was having trouble singing songs and reading stories to my students and my granddaughter.  It was like I could not get enough air into my lungs.

Finally, in March 2012 my neurologist at Mayo gave me the diagnosis.  I really think I new deep down inside that I had ALS.  I had been doing my own research and it just all seemed to fit together.  Never would I be able to get through each and every day if I did not have a personal relationship with Jesus.  I live with peace although each day is somewhat of a challenge.  I no longer eat or drink the way I use to.  Everything goes in via feeding tube...including medications.  I am still able to use my limbs.  My arms, at times,  are a little weaker than normal but nothing debilitating.  My diaphragm is slowly becoming weaker so my breathing is often a little labored.  I had to retire after 19 years of teaching due to the complications of ALS.

Although there is no cure at this very moment, I am not discouraged because there are people in all walks of life trying their best to fight for a cure.  If you read this story, or any story about ALS, and want to learn more about Lou Gehrig's Disease, you can.  Just go to the national ALS Association website and you will find ways to help out and educate yourself on this disease.


Sunday, May 19, 2013

Something to chew on...

The experience of enjoying a meal invokes great pleasure for some, while for others, eating is approached more like a chore they must get through.  I have always enjoyed food, from sharing an intimate meal with my husband to a holiday feast with family and friends, from a home cooked meal with my boys to lunch out with a good friend.  I am also known for enjoying a meal all by myself in a quiet corner of a cafe with a good book.  I have generally enjoyed positive associations with food and, while I have been known to overindulge, I would say my relationship with food has been mostly healthy.

In a recent conversation with my neurologist, he asked if I was considering getting a feeding tube.  I said that I have thought about it but I have not felt ready to make the decision yet.  I have done a little research, I've talked it over with my husband, asked questions of my friend with ALS who had a feeding tube placed at the end of last year, and still I have not decided how I feel about it for me, because ultimately, it is a personal decision that I will have to make based on how I want to manage my life with ALS.

The benefits include maintaining proper nutrition and hydration, therefore, keeping one's body properly hydrated and at a healthy weight for as long as possible.   The need for a feeding tube arises as chewing and swallowing foods and liquids become more difficult with the degeneration of muscle strength and control in the throat, neck, and tongue muscles.  As the muscles weaken, there is concern of severe malnutrition and the possibility of food or liquids being aspirated into the lungs which can lead to pneumonia.

My doctor explained things I hadn't considered, like the fact that it is easier to place the tube in a person who is still strong enough to withstand the surgery without the added complication of a severely weakened diaphragm, for example.  He explained that once the feeding tube is placed and the initial surgery site is healed, the protruding tube can easily be replaced by a half dollar size piece that sits flush against the body for comfort and visual discretion.  He also explained that even with the feeding tube, patients can still eat and drink normally as long as they are able, and many people use the tube only to supplement nutrients or take medications in the beginning.  Once a patient is no longer able to swallow, the tube is already in place and the transition can be a smooth one.

In the past 6 months, I have lost 10 lbs and while a small part of that may be muscle deterioration, the rest, honestly, is from no longer overeating and instead eating smaller meals and snacks throughout the day.  While I cannot eat all the same foods I have always enjoyed (no more salads, chips and salsa, or fajitas), I have adapted and made new discoveries like sushi, pulled pork, and cinnamon dolce cappuccinos.  I am not currently underweight and if I lost another 10 lbs I would actually just be at what is considered the "healthy weight" for someone of my age and height...under normal circumstances.

With a degenerative disease like ALS, there are many difficult things that must be considered, researched, discussed, and eventually decided upon.  Whether or not to have a feeding tube placed in one's body is just one of these serious issues.  With each issue, the choice has to be made with the additional consideration of how it will affect my quality of life because, for me, there is more to life than merely existing.  To me, there is a difference between the value I put on my life vs. the quality of my life and since there is currently no cure for ALS, quality of life is an important consideration.

With the feeding tube, it is more than the difference between not wanting to give up eating real food and not wanting to die of starvation, which I don't imagine is very pleasant.  There is a question of whether having the feeding tube will allow me to maintain, or even improve, my current quality of life, or are the risks involved and the changes that would be required to my lifestyle things that would degrade my quality of life to a point that I find unsatisfactory?

ALS has many different onsets, different progression paths, a different time frame for every person it invades.  For each of us, it seems to personalize itself and, therefore, each of us must make our own decisions on how we will deal with it.  No one else can decide better than I can how I am to face ALS.  Whether or not I feel a feeding tube is right for me is an important, personal decision and one only I can make after serious consideration.

Saturday, May 18, 2013

Dog napping...

After two long days of hard work, collecting donations for the ALSA with the Change for ALS campaign and spreading ALS Awareness by sharing her story, exhaustion takes over and an early night is well deserved.

Sweet dreams...

Friday, May 17, 2013

The kindness of neighbors…

Today was a gorgeous, sunny Florida day.  It was warm with just enough breeze now and then to keep things comfortable…a perfect day for a yard sale!  My dad and Lisa joined us and together we got it organized, set up and ready to go.  With well placed signs to guide customers our way, we had a great turn out.

To honor my commitment to ALS Awareness Month during the yard sale, I wore my Sam's Twysted Ride t-shirt and I placed a jar for donations to the ALSA on a table in the yard.  Living in a small beach community, most of the Friday shoppers were locals and many from the nearby neighborhood.  As people came up to pay, we pointed out the ALS Awareness flyers and the jar.  We shared a little about ALS and my story while encouraging people the check out my blog as a way to learn more. 

Since going public a few months ago, I have had to find my "voice" for sharing my diagnosis with people personally.  This has been admittedly tricky for me because, I think in some ways, it is kinda weird to basically tell someone I have a terminal illness.  Especially in the beginning, I wondered what kind of reaction to expect?   I certainly don't want to make people feel sorry for me, but I do want to be honest and spread awareness.  It seems like a fine line and one I have had to learn to navigate.  The beauty of it is, people are wonderful.  They offer such kindness and support without making me feel that dreaded sense of pity.  Many are interested in learning more, some want to know how they can help, and others just quietly step up and do what they feel compelled to do, rather it is offer positive words, a hug, or a donation.

Today, I saw all of these positive reactions from my neighbors and community members.  It truly warmed my heart to see the beauty and strength of my family and my neighbors, making me proud to be a part of this little beach community.  Thank you!

Thursday, May 16, 2013

Today's adventure...

Displayed at Las Olas Massage and Wellness
Today I attended the Mayo ALS Clinic. This happens about every 6-months and each time it comes up, I debate with myself if it is something I really want to do.  So far, I have attended each one and I have always been happy that I have gone. 

How it works is that my husband and I sit in one room while the staff rotates in and out throughout the morning.  I see a speech therapist, a nutritionist, a social worker and representative from the ALSA, a respiratory therapist, an occupational therapist, a physical therapist, and, of course, my neurologist.  In addition to all these visits, I am given a cognitive test which is usually the most (only) entertaining part of the testing. 

During the cognitive test, I have to write as many words as I can think of, in the time allotted, starting with the letter given but I cannot use people, places, or numbers.  The letter was "F" and profanity was not mentioned in the words I couldn't use so here are some of the words I wrote:  fun, full, far, fountain, fart, foot, from, fuck, fly, food...  Sometimes, you just gotta humor yourself.

Although I stay in the same room, I find I am exhausted by the end of it all.

Some of the highlights today include a plan to improve range of motion in my left arm which should ultimately help reduce some of the pain there, learning that my respiratory function is remaining steady (a plus), and an informative Q and A with my neurologist who is very knowledgeable and matter-of-fact, which I appreciate. 

Today I also came home with a Tobii P10 eye-tracking device thanks to Mayo and the ALSA.  It is an older device, definitely not portable as it is heavy and must be mounted on a stand for ease of use, but awesome to test and see if the technology is something that can work for me in the future should the need arise.  I was able to plug it in and use it right away which, to me, means it is user friendly.  First, I played a game of Tic-Tac-Toe ("The only winning move is not to play" -Joshua...can you name the movie?) and then Eye Chess ("Wouldn't you prefer a nice game of chess?" -Joshua...hint, it was released in 1983).  Now that I have it at home, we will test it out and see how much it can do...beyond the games.  I'll keep you posted.

The best part of Clinic:  seeing my friend who I met at my first clinic visit about a year ago.  She is also living with Bulbar onset ALS and is in her 40s.  We stay in touch between visits by email because we live hours apart.  You will learn more about her soon so stay tuned...

Wednesday, May 15, 2013

Guest blog by Joel...

Joel & "me" at the Walk to Defeat ALS in SLO
I thought it might be interesting to get the perspective of ALS from someone who loves someone who is living with it.  When I asked my family if they would be interested in writing a guest blog, Joel jumped right in.

Joel is my cousin by marriage and my friend by choice.  I have known him since I was about 15 years old.  He is the reason I met my husband so I will always appreciate him for that, but he has also been like a big brother to me over the years and I appreciate him for that as well.

Thank you Joel!

PS  You can follow Joel on his blog by clicking on the link to Big Daddy Will Set You Straight

Guest blog post by Joel:
I love Chrystie, I know how Sam came to be and I appreciate all the hard work Sam is doing and I will be here for Sam, for whatever she may ask, but, I love Chrystie.   I've been lucky enough to talk with and text with her these last few months and yeah, she may sound a little different, but Chrystie is still Chrystie.   Just because the Starbuck's dude couldn't understand her, doesn't mean I can't.

Chrystie still has a wicked sense of humor and a quick, sharp mind.  I've given her crap and made sure she knows my biased point of view of things and you know what?  She's given me attitude right back and I would expect nothing less of her.  This has always been our relationship and it always will be, and I don't see it ever changing.

The hardest part of her ALS diagnosis for me is not being able to fix “it” for her.  That's what I do, I fix things, both as my manly instincts tells me and as a profession, and not being able to fix “it” for Chrystie was the hardest thing I've ever had to deal with.  The second hardest part, for me, is the distance she is from me, she feels a million miles away at times.  But, these are my struggles and they pale in comparison to what Chrystie and her boys are struggling through and it's not right to burden them with my problems, it's not about me.

Yet every time I get a chance to talk or text with her, she makes me smile, she's still my Chrystie, and there are still times when she's a pain in the ass but, as she knows, I wouldn't have it any other way.  My family misses her family terribly, but luckily, technology keeps us close.  I can text her in the middle of the day as soon as I think about her and that helps bring her closer.

Sam is awesome, she's doing lots of hard work and bringing the lack of ALS awareness to light.  She's educating us about an underfunded and misunderstood disease.  I sure appreciate everything Sam is doing.  But, I love Chrystie.

Tuesday, May 14, 2013

The benefits of massage...

At the end of last year, I started experiencing more pain as a result of the ALS and I looked for something (preferably without negative side effects) to help.  With hypnosis, I had success with relaxation but I wasn't effectively able to block the pain.  I tried acupuncture but, again, did not feel any significant relief from the pain.  Then I read a blog in the MDA/ALS Newsmagazine called Mmmmmmmm - Massage Therapy by a woman with ALS who wrote that she was enjoying regular massages and was finding a number of benefits from it.  The massage portion of my acupuncture treatments was the one part I did feel some relief with, so I decided to give massage therapy a try.  My husband bought me a package of 5 massages and I have been going every week since.
Crystal and Annie of Las Olas Massage & Wellness

Las Olas Massage and Wellness was recommended to me locally and I have been so happy with my experience there.  Each week, I enjoy a wonderful massage from Crystal with the benefits of pain relief, relaxation, and an overall sense of well-being.

Crystal and Annie, owners and therapists at Las Olas Massage, have both become wonderful supporters and friends as well.  Both ladies joined me in the Jacksonville Walk to Defeat ALS and helped Sam's Twysted Ride raise money for a total donation of over $10,500 to the ALSA here in Florida. 

For me, finding the right massage center and therapist has been both physically and emotionally beneficial.  While it is not a cure, I look forward to my massage each week knowing I will experience a relaxing of tightened muscles and relief from some of the pain associated with ALS without the negative side effects so many medications can have.  Thank you Crystal and Annie!
Me, relaxed & happy after my massage, with Crystal and Annie

Monday, May 13, 2013

Words lived by...

Folded, tucked away, and forgotten
A glimpse of the girl I fell in love with.  Bear in mind that she wrote this when she was 17 years old, five months before I met her for the first time...


In this world of beauty and desperation there is so much to grasp, so much to lean towards, so little to be sure of.

Through the dark clouds of bittersweet memories and lonesome dreams, there is a glimmer of strength, security, hope for what we do not know but search our whole lives to find, never knowing which paths will lead in the right direction.

Or do they all go in one direction?  Toward the single moment that all will experience, the moment of truth, the point where we all decide if we want to go back and do it all over again.  Change things that made us sad or worry, things that we think we handled all wrong or feel we left unresolved. 

No, the paths we take lead us where we want to go and take us from where we've been.

It's a long, well traveled road that leads us to our destination, but all of the paths are right where they should be, leading to exactly the right experiences we need to fulfill our time and make us who we are.

Of course, there will always be right and wrong doings.  Our chosen paths can only lead us to the people and places, the experiences, but the final decision is ours.  No decision is wrong although the act might be devastating with unpleasant consequences.

Choose your actions as best you can, treat yourself with respect, love, worthfulness, and responsibility.  You are the most important and needed person to make your life work.  Listen to others, but don't adopt their lives, live your own to the fullest.  Enjoy yourself and the things you have, the friends you have and love.

You are special, like no other in this world.  Live your life with that knowledge and enjoy it.

Worrying gets you nowhere, only steps on the path lead to new people, places, and experiences.  Take as many paths as you can.  They will make a difference, they all matter!

Written by Chrystie on January 17, 1987


For over 25 years we have traveled these paths together,
"together" has made all the difference.

Sunday, May 12, 2013

Celebrating motherhood...

Motherhood has brought so much to my life, things like wonder, love, panic, understanding, frustration, hugs, kisses, worry, self-doubt, partnership, compromise, acceptance, creativity, insomnia, patience, joy, but most importantly, the gift of truly loving another unconditionally.  Motherhood does not come with an instruction manual, and even if it did, I'm sure it would be frustratingly incomplete.  At times it seems no two days are the same, yet at other times it feels like you are living the same day over and over.  It is exciting and exhausting and beautiful and scary all at the same time…like all the best adventures are. 

Today I celebrate my son because he has taught me, in a way no one else ever could, the true beauty and joy of being a mom.  Thank you for the greatest gift of all.

Saturday, May 11, 2013

Let's play a game of Sam Says...

In my house, we often play "Do you know what Sam Said?" which is a lot like telephone but with less people.  We always end up laughing because when I say something like "Do you want to have raviolis for dinner?" the other person might hear "Do you want to see my old report card?".

So, I thought it might be fun to play a game together.  I taped this video of Sam Says (like Simon Says but harder to understand).  Do you think you can figure out what I've said before I show you?  I hope you have some fun ... good luck!

How did you do?  Were you able to understand me?  This was meant to be fun and I hope you had some laughs!

Friday, May 10, 2013

Laughter is the best medicine...

At the beginning of this journey, my voice started to change, slur, slow down, and talking in general became more challenging.  Before I received the ALS news, I often joked about how lucky I was that singing was not my career, and it was lucky for everyone else, too, since I can't carry a tune.  I think back now and am so happy that I have been able to keep my sense of humor through all of this.  Sure, there are things that are just not funny, but somehow I still find a reason to laugh every day (often at my own expense thanks to my disintegrating speech).

At the first ALS Clinic I attended, the doctor asked me "Would you say you are depressed, do you feel sad all the time?" and I had to laugh at this because my response was "Oddly enough, no".  I don't think anyone would blame me if I was, and I doubt I would care anyway, but truly I appreciate the fact that I can laugh and find true happiness in so many things in my life.

ALS may be a death sentence, but every life ends in death and I am just grateful to be enjoying so much about living every day!

Thursday, May 9, 2013

Become an ALS Advocate today...

Today is National ALS Advocacy Day and in Washington D.C., Advocates for ALS are meeting with Congress on Capitol Hill in a Public Policy Conference to let them know how ALS impacts the lives of everyone it touches.  They are there to ask for Congressional support in the search to find an end to this disease.  While ALS Advocates are in our nation's capitol making our case in person, those of us at home can also help by becoming Virtual Advocates. 

Please take a few minutes today to send a letter or an email to your representative in Congress to ask for their support.  Click this link to Join the Virtual Advocacy Day, everything is set up to make your participation as easy as possible.

Will you join me and become an ALS Advocate today? 

Advocate:  ad·vo·cate
verb (used with object)
1.  to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.
2.  a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of) : an advocate of peace.
3.  a person who pleads for or in behalf of another; intercessor.
4.  a person who pleads the cause of another in a court of law.

Wednesday, May 8, 2013

Finding a silver lining...

Living with ALS, the physical challenges and changes can quickly become the focus of one's life and many of the enjoyable little things that previously were taken for granted can be left behind and forgotten.  At times like this, finding a silver lining to the situation is more important than ever.

Before ALS, I used to give myself a pedicure about once a month and, during warmer weather, I might repaint my toes every week or two.  I used to enjoy cooking and liked to try making a new dish at least once a month.  I used to wear high heeled shoes, even my flip flops were wedges.  I used to wear make-up every day.  I used to give really good foot massages to my boys almost every night.   I used to enjoy driving and shopping just for the fun I got out of it.  I used to secretly dream that, one day, Dan and I would run The Amazing Race together.  Today, not one of these things is still true. 

Now, I have to have someone else give me a pedicure and change my polish.  I can no longer stir a mixture or hold a knife without my hand cramping so I don't cook anymore (except the occasional scrambled eggs or chocolate croissants with pre-made dough).  Today, I go barefoot or wear regular flip flops because they go with everything.  I have no need for make-up these days, and the last few times I tried to put on mascara, I nearly poked my eye out.  I barely have the hand strength to hold a trenta iced tea so giving a massage is completely out.  Driving and shopping are now more like chores than enjoyment.  Finally, I know that there is no possibility of my ever being able to keep up the pace of The Amazing Race in my condition.

Some of these things I miss (high heels and treating my boys to a nightly foot massage) and others I don't care so much about (shopping and mascara).  There is one thing, though, that I am still able to do on my own, solely for my own pure enjoyment ... I can still hold a book, or iPad mini, and read.  As a life-long lover of books and avid reader, that is my silver lining!

Tuesday, May 7, 2013

How you can help...

People often express the desire to do something to help, so today I want to share with you just a few of the ways you can get involved in ALS Awareness and make a big impact! 

1. Share and forward this blog.  This is an easy way to help spread ALS Awareness.  I know I have mentioned this before and I really want to thank you for taking it to heart.  I have seen the posts being shared on Facebook and know from others that it is being shared by email and word of mouth as well.  As new people find their way here, I hope they will also share it forward.

2. Read and share other people's ALS stories.  The ALS Association (ALSA) and The Muscular Dystrophy Association (MDA) are two very active organizations funding and promoting ALS related topics and research.  Each are currently highlighting stories of ALS patients, families, friends, and caregivers from across the country in honor of ALS Awareness Month.  The ALSA has Stories of Hope and MDA has ALS: Anyone's Life Story.  If you have a personal story you would like to share, I encourage you to do so.  By sharing your story, or reading the stories of others, you are helping.  Please feel free to "Like" or Tweet any of stories as well.  To see my story, click here for ALSA Stories of Hope and click here for MDA's It's My Story, Too.

3. Find a local ALS event to participate in. Year round, there are walks, runs, and rides taking place in different parts of the country to support ALS projects.  In the summer, there are camps for children of ALS patients in some places.  Each ALS organization has a website where you can find more information.  During May, please commit to visiting one or more of the sites listed below to learn more about the organizations and how you can help today.

ALS Association
Muscular Dystrophy Association
Team Gleason
Project ALS
Brigance Brigade Foundation
Packard Center for ALS Research and Johns Hopkins
ALS Therapy Development Institute

4. Make a donation to one of the organizations directly involved in helping provide care for ALS patients and/or ALS research for better treatments and a cure. 

I would love to hear how you are participating in ALS Awareness Month!  Please leave a comment about what you are doing.

Thank you, as always, for your support and willingness to help and get involved.

Monday, May 6, 2013

Next stop, the Twilight Zone...

As a kid, I used to like to watch the black and white reruns of The Twilight Zone with Rod Serling.  The one that I remember as being the most disturbing was not the aliens with their human cookbook or the evil talking doll, it was the one where a bespectacled bank teller, Henry Bemus, just wanted time to read everyday but his wife and boss made it nearly impossible for him to find the time.  When an H-bomb is dropped (this originally aired in 1959), killing everyone and destroying his town, he alone survived because he had been hiding in the bank vault, reading, during his lunch break.  Alone, with enough food for years, he discovered true happiness in being surrounded by all the books he could ever want to read.  He now had Time Enough at Last to read to his heart's content.  In the last moment of the show, he bends over to pick up a book and his glasses fall off his face and the lenses shatter.  Without his glasses, having an abundance of time and books to read was more like torture than the bliss he had anticipated.  I felt his pain and realized the cruelty of his fate, even as a young girl of 10 or 11.

I think there could be some similarities drawn between the bank teller's fate and that of my own.  I thought I had it all together when, within a span of six months:
~I earned a degree in Library and Information Technologies
~I secured a job that I loved in a middle school library
~we bought a beautiful new home
~we spent a wonderful week on vacation in Hawaii
~my husband and I continued to enjoy a strong and loving relationship
~I had an active social life with friends (both old and new)
~I had joined a book club at the public library
~I was happy and (seemingly) healthy and enjoying life in my early 40s
~we were navigating the early high school/mid-teen years with a few bumps, yet I knew our family was strong together and believed that we would all get through the years ahead with success

However, during this same six month span, ALS was silently moving in, dropping a bomb on my life.  It has taken out my central communication center and is weakening my upper extremities.  I know it has plans to invade further but I do not offer surrender or retreat.  For now, I adapt to my current circumstances and, unlike Henry Bemus, I won't be sitting on the library steps crying about the unfairness of my fate.  I will continue to battle on knowing that the difference is that I am not alone.  If need be, I know someone will be by my side to read to me should my glasses shatter.

Sunday, May 5, 2013

ALS (Un)Awareness...

Harly and me last summer
One of the things I love best about hanging out with my dog, Harly, is that he treats me the same as he always has because he has no idea that I have ALS.  He still wakes me up every morning to let me know it's time for breakfast and he waits impatiently until I am ready to get up and feed him (or he'll jump over to Dan's side of the bed to wake him up instead).  He follows me around the house, lays nearby when I am on the computer and jumps up on the love seat with me when I watch TV.  He hangs out wherever the food is and tries to sit in my lap, or as close as possible, whenever I have a snack or a meal or anything that remotely resembles a snack or a meal.

If I sit on the floor, he will bring over one of his toys, squeaking it with enthusiasm.  He will put it in my lap or shake it in front of me until I try to grab it from him.  He doesn't care that I don't have the strength to actually hold onto the toy for more than a few seconds as he starts to pull it away again.  No matter how many times he is able to pull the toy away from me, he happily comes back to do it again and again.

Walking on the beach this morning
When we walk to the beach, he follows me into the water and barks happily as he chases me around.  Even though Dan throws the ball for him, he almost always brings it back to me in the waves…it doesn't matter to him that I can't throw more than a few feet, if at all, he just seems happy to make sure I know he's there to play with me. 

Harly is the reason dogs are called (wo)man's best friend.  He doesn't treat me any differently than he always has.  He just hangs out with me, lets me pet him and never needs me to talk.  He is still impatient when it comes to being fed and he is still happy to spend time with me playing the same silly games we have always played.  He still sleeps at my feet and gives the double paw tap to say "It's time to feed me".  One of the best things about Harly is that to him, I'm still just me.

Ready to play ball

Saturday, May 4, 2013


As the rain continues here, I found myself enjoying the little surprises that occurred throughout the day!

When I got up this morning, I walked in to the kitchen and decided I would attempt to do the dishes.  This might not sound like a positive start to the day for most, but washing dishes just enough to load them into the dishwasher is not an easy task for me any more and it takes a lot of extra attention and effort on my part to get it done.  Since I was feeling up to it this morning, I was very happy to let Dan sleep in and surprise him with having the dishwasher loaded and ready to go when he woke up a little while later.  For my efforts, I was treated to a wonderful homemade breakfast of french toast and a cinnamon dolce cappuccino…soooo good!

On I discovered that a book I have been waiting for, Until I Say Goodbye: My Year of Living with Joy by Susan Spencer-Wendel, a woman in her 40s also living with ALS, was available and I was able to download it to my Kindle app so I can start reading it today!

On Facebook, I saw that my friend in NJ had posted pictures of her daughter wearing her Sam's Twysted Ride t-shirt, helping to spread ALS Awareness today.  Thank you, SW, you look beautiful and it means so much to me!

In the mail, there was an oversized envelope from my mom and inside was one of the Sam's Twysted Ride t-shirts signed by the members of our SLO Walk to Defeat ALS team.  It was signed, front and back, with lots of love and well wishes from my family, friends, and supporters in CA which made me feel all happy inside!  Thank you so much to everyone who signed the shirt, participated in the Walk (on both coasts), and donated time, money and items to the Sam's Twysted Ride teams to help support finding a cure for ALS!  

It is NO surprise that finding a cure for ALS is going to take a continuous team effort, which is one of the reasons I started Sam's Twysted Ride and this blog.  It is why ALS Awareness Month, Walks to Defeat ALS, Rides to Defeat ALS, The Fiesta 5K, and so many other local and national events exist all year long.  This is not a one shot deal.  ALS was first described almost 150 years ago and there is still only one FDA approved drug treatment on the market.  However, today we are seeing some exciting and promising new research emerging, from drug trials to stem cell therapies and more.  This is the time to keep pushing forward, to let our law makers, the research communities and the general public all know we need their support to keep these efforts going strong.  I know we will see the rewards of our teamwork come together as better treatment options and a cure for this devastating disease become available to all of us who are waiting for them.

Friday, May 3, 2013

Rainy days...

My new office space
Sometimes, even though you made plans, life laughs and you get rain.  It might be disappointing at first, but somehow, if you are willing to go with it, life can surprise you with a different plan.  The trick is to still find the positives ... this is true with any curve ball life throws.

I had planned to have a garage sale today and tomorrow.  I planned to donate a portion of the proceeds to support ALS research as part of my ALS Awareness Month commitment and it is something I have been talking about doing for close to a year now.  Instead, its been raining steadily for over 24 hours with no end in sight so … plan B. 

I got to sleep in and once I did get up, I stayed in my pjs all day.  I had homemade potato soup for breakfast (mmmm!), made a large pot of iced tea and hung out with my husband in my new office space playing on my new (to me) computer.  We ordered the new Tobii PCeyego (more on that later), I read a few pages of my book, and I leveled up my WOW character a little.  Later, I'll venture out with Lisa for some pottery time, then come home to snuggle in for the night with my hubby, a movie and some ice cream.  

When you get that curve ball thrown your way, you gotta do your best to hit it out of the park!

Thursday, May 2, 2013

The alternative to old age...

Grandma D and Me - 2004
I've been thinking a lot lately about my Grandma D, she was the only one of my grandparents who lived into my adulthood.  During the last ten years of her life, I could really see her slowing down and her health issues became more central to her daily life until she needed around-the-clock care.  I feel like my body has gone through an amazingly horrible transformation from a healthy, social, active 40+ year old woman to a slow, incoherent, uncoordinated, pain-riddled 70+ year old woman all within 365 days.  Even though it didn't happen within a year for my grandma, I have wondered if it felt like it happened almost overnight or if the slower, more steady progression made it easier for her to accept on some level.  Even though she struggled with the physical changes of getting older along with her added health problems, I wonder what advice she would have given me on how to accept these things gracefully.  To be honest though, I think I am doing the best that I can in that regard. 

I have heard many times, from many people, that getting old is hard but it is preferable to the alternative.  I now realize ALS is one of those alternatives and I would gladly take the opportunity for regular old age any day.

Wednesday, May 1, 2013

My Commitment to ALS Awareness Month...

If you follow me on Facebook, then you are probably aware that May is ALS Awareness Month.  As a person living with ALS, I take this seriously and have asked myself "What can I personally do to help raise ALS Awareness this month"?  Here are a few things that I came up with:

~I commit to post a blog entry every day, all month long so be sure to check in every day in May!  I will try to have a guest blogger or two with posts about their ALS experience as well.

~I will proudly wear my Sam's Twysted Ride t-shirt at least twice a week, every week, throughout May.

~I am asking all of my Walk to Defeat ALS teammates from Florida and California who have Sam's Twysted Ride t-shirts to wear them at least once a week for the month of May as well.    If you do not yet have a t-shirt and want one, email me at to find out how to get one while supplies last!  Proceeds benefit the ALSA.

~I am planning to attend the local MDA ALS Awareness Month Celebration on May 24th in Jacksonville.

~ I am having a garage sale the first weekend of May and a portion of the proceeds will be donated to the Florida Chapter of the ALSA along with 100% of the donations made to the donation jar.  (UPDATE:  Due to rain, garage sale date changed to May 17-18)

~I will try a new technology that is designed to allow full computer access in a user friendly way with an eye-tracking device - look, no hands!  I will definitely blog about this once I have tried it out.

~I will use my social media forums to further the ALS Awareness campaign.  "Like" Sam's Twysted Ride on Facebook  and follow me on Twitter at @twystedsam.  To stay connected with this blog, you can Join or Follow by Email on the left side of your screen now.

~Finally, I ask all of you to please help spread ALS Awareness this month by sharing my blog with the people you know and asking them to share it as well.

Together, we can make a difference toward finding a cure and end ALS now!