5K – A Run For The Roses

Resting for a week after the 5K, sunshine and mellow temperatures were hard to resist.   I wanted to go for a walk.  Unloading my jogging stroller, the training area greeted me like an old friend.  Aching muscles had recovered but my heart still swelled at the enormity of accomplishment.  In private celebration, I jogged a victory lap.

With the stress of the run behind me, I was able to savor visual details of my running track.  Fuchsia blooms clustered around the pond.  My quacking hecklers weren”t around, a disappointing first.  Stiff Person Syndrome permitted an impressive, though rusty, practice run the week before the 5K.  Out of respect or intimidation, the ducks remained silent or ran from me.  I was hoping they would be a cheering crowd for my victory lap.

Many thoughts swirled through my mind — the tortuous early years, ever-present uncertainty, struggles of training, appreciation for the good, relived euphoria of the 5K.  Stiff Person Syndrome, a rare disabling disease, stole many things from my life.  Crossing the finish line of the 5K was so much more than just a run for me.  It was a moment of victory over years of abusive submission to a cruel diagnosis.  The Donna Deegan 5K was my Kentucky Derby, a “Run For the Roses,” as a lame thoroughbred.

During my victory lap, I pass the tree with a few clinging stubborn leaves.  I see the promise of budding sprouts, making my heart smile.

…And it’s run for the roses
As fast as you can
Your fate is delivered
Your moment’s at hand
It’s the chance of a lifetime
In a lifetime of chance
And it’s high time you joined
In the dance
It’s high time you joined
In the dance —

~Dan Fogelberg

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Racing Against Stiff Person Syndrome

“The miracle isn’t that I finished. The miracle is that I had the courage to start.”
-John Bingham

My limitations with Stiff Person Syndrome made training for the 5K extra challenging, daunting at times, a few days impossible.  Fear was consuming because of SPS unpredictability. Publicly announcing my intent to do the 5K committed me without knowing if the starting line would be approachable that day.

After two weeks of intense anxiety interrupting my sleep, an unexpected calm settled over me the night before the Donna Deegan 5K Run. I drifted off to a peaceful night’s sleep, briefly interrupted by a nocturnal sugar drop.  After a small snack correction, I went back to sleep.

I woke up at 4:30, alert, excited and looking forward to the 5K experience. Packing a backpack with my half case of water (weight stability for my stroller), diabetic supplies, snacks, and medication; my preparation resembled a wilderness trek instead of a city run. One thing I learned from my six weeks of 5K boot camp was having a strategy for optimal food intake and medication timing.

Banter with friends helped keep my mind preoccupied. I felt a connection with the crowd: running in tribute, support, or in memory — several survivors. Though their advocacy was for breast cancer, mine was for Stiff Person Syndrome, Rare Disease Day, and Lulu (breast cancer and SPS).

As the starting time neared, a few jitters started to poke at my well-being. Since I had a jogging stroller, I was delegated to the back of the pack, a sensory relief for me. With my beginning steps, I felt comfortable with the pace, the crowd, with me. As I started to pass the walkers, my confidence grew.

As in my early running days, I entered a mental zone, aware of my pace, in sync with my breathing, focusing on the pavement in front of me. SPS sensitivities often crank up the volume on my sensory intake, but navigating around the crush of people with my stroller was a mental diversion. Agoraphobia was not an issue… just concern over ramming someone in the backend.

A personal competitiveness set in, not against the other runners, against Stiff Person Syndrome. Hitting the second mile mark at 25 minutes, I exhilarated in the possibility of finishing.  Just one time… taking something back that diagnosis had stolen from me. Crossing the finish line was a personal victory over Stiff Person Syndrome for me.

At home, I wept for many reasons, but mostly with gratitude.

Photos – Donna Deegan 5K – 2013

My racing stats:
Gun time:   38:03
Chip time:  37:10

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Two Days Before the 5K

“We must let go of the life we have planned, so as to accept the one that is waiting for us.”
~Joseph Campbell

Thursday was my last practice run. Checking the clock, 4:00 gave me ample time to drive to my outdoor training ground and back home before dark.  My heart sank as I did my routine blood check before leaving — 54 and dropping.   Turning off my insulin pump, I ate a snack, but needed additional sugar for the carb expenditure of exercise.

Topping off my tank with a protein bar, two Reese cups, and two boxes of apple juice, I did not have time to allow my food to settle before the sun set.  Starting with a brisk walk escalating into my geriatric trot, the contents of my stomach were a nauseating reminder.  “In spite of” the hypoglycemic episode, I finished in an impressive time for me with a glucose reading of 115.

Today was busyness.  A lengthy errand involved a trip into the city and dealing with the mayhem of getting my race packet.  Fate smiled on me with a close parking spot.  The Donna Deegan Marathon for Breast Cancer is a national event.  The Convention Center was jammed with various aisles and booths, colors, people, and noise everywhere — a continual movement of pastel confetti to my syndrome perception.

There will be over 1,000 runners in the 5K, more participants in the marathon and half-marathon.  Excitement and camaraderie reverberated throughout the building… Every person, a story.  How appropriate this race is for me, for Stiff Person Syndrome, paraneoplastic syndromes, Rare Disease Day.

I wavered between angst and excitement all during the day, my neurons subtly firing with medicated suppressed “snap, crackle, and pop.” Several times I practiced a deep inhale, slow exhale to calm my racing heart.  With the familiar security of my jogging stroller navigating me through the crowd, it gave me a sense of calming confidence.

Before SPS, the racing “if” always concerned time.  Since SPS, the big “if” has become if I will be able to do it.   Tomorrow morning will involve planning the timing of my medication, food intake, packing my medical supplies, and anticipating having fun.

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Rare Disease Day

March 4, 2011

Rare Disease Day is recognized on February 28. For those of us with a rare disease, every day is rare disease day. I appreciate the many unified voices of advocacy, along with the year-long efforts of Eurodis and NORD, to bring awareness to this ‘rare’ community that collectively affects 1 out of 10 individuals.

I am always touched and inspired reading the stories of others with a different diagnosis, but who share the same struggles as me with medical and social understanding…just living.

Copyright © 2011


February 9, 2011

“The warmth of a friend’s presence brings joy to our hearts, sunlight to our souls, and pleasure to all of life.” ~Unknown

Yesterday, I had planned on my original SPS-friendly workout at the gym, but a friend phoned. I took the call instead. She and I shared some serious talk, exchanged some thoughts, and had some female giggles. Feeling light, I opted for walking practice instead.

Floating on those “feelin’ good” vibes, I managed to cross a small section of asphalt to retrieve my mail. (I did hesitate and needed a few test starts to get back over to the other side…Goal!!) While the sun warmed my face, recollecting bits of our conversation warmed my heart. This was one of those cherished moments my body was working reasonably in sync.

A group of us met for pizza last night. Conversation, banter, and laughter were shared, cementing a growing bond. I was experiencing the magical and elusive feeling of being “normal.” My often-ignored normalcy was a celebration with friends. Life is good when shared with friends…even better with pizza.

Copyright © 2011

Man Against The World

January 17, 2011

“Pain is no evil, unless it conquers us” ~Charles Kingsley~

I loved this song before diagnosed with SPS. I love it more now. It could be a theme at times, the feeling of me against the world. Alone, embattled, abandoned. Ironically, this song is by a group called Survivor.

“Victory at all costs, victory in spite of all terror, victory however long and hard the road may be; for without victory there is no survival.” ~Winston Churchill~

Copyright © 2011

SPS Activity Budget

January 17, 2011

“We don’t see this as a budget exercise. It’s about management excellence.” ~David Barna~

SPS is a wicked step-mother with a Scrooge mentality of miserly. Every morning I timidly approach this domineering presence with my syndrome weary hand extended for a few pennies of ability. Gnarled fingers rattle the clinking coins from her full apron pocket in a cruel tease. I hold my breath in anticipation for the meager offering of the day. Will I get a few extra pennies today?

Shining with promise, I count the worn, dull coins in my open palm. How can I make the most of today’s offering. What shall I spend my limited treasure on? What shall I sacrifice?

Budgeting my limited ability within medication opportunities is a daily SPS management skill. The challenge is to come under budget. Today’s deficit will compromise tomorrow’s spending–an overdraft with late fees–also known as a down-on-the-couch day with extra Aleve.

Saturday was difficult as I struggled within the limits of spending my last coins of the day. With nostalgic remorse, I remembered when I complained about effortlessly leaving the house to run to the store for a forgotten ingredient for supper…pre SPS. Sometimes the reality of having an ambitious mind within a challenged body is revisited heartbreak for me.

But the optimist in me resurfaces and is thankful for those precious coins I am given. Because of SPS, I realize the value of a moment. For my health, stay within budget. For happiness, do not hoard. Spend. Spend wisely.

“We’re on a limited budget. And I think we’ve spent every nickel of it.” ~Jeff Smith~

Copyright © 2011

NORD SPS Research Grant

iframe>January 17, 2011

National Organization for Rare Disorders Awards Grant to Support Research in Stiff-Person Syndrome

I am really excited about this research grant for several reasons.

1) NORD will distribute this media release to approximately 11,000 contacts. Lundbeck released it on Business Wire. (I do not know how many that will reach.) SPS will get some serious exposure…awareness for us! 😉

2) Lundbeck’s continuing interest & involvement in NORD’s outreach through Rare Disease Day sheds light on how many are touched by a “rare” disease. One in 10. Sobering and humbling we were chosen for their donation. I am grateful.

3) The NORD SPS research fund, gifted by several small donations through the years, became a collective research grant of benefit. It takes many to achieve something great. 😉

4) NORD has always been an informative source of support and information for 7,000 rare diseases. They were my first outside contact when I was diagnosed in 1994. They have greatly expanded and continually work for the rare disease community.

5) Rare Disease Day has grown to epic proportions–worldwide in conjunction with Eurodis, facebook, media events, blogs…in a continuing effort to educate and impart understanding to a world unaware of the millions who are afflicted with a rare or orphan disease. Last year’s USA Rare Disease Day front liner was an SPS story about an amazing woman with Paraneoplastic SPS & her dedicated husband. (I think highly of this couple.)

6) Research brings awareness, but it also inspires hope. Another puzzle piece may be discovered, a better treatment, maybe a cure! 😉

I hope this research grant gifts you with encouragement that with time, every little thing “one” may do or give can culminate into a major accomplishment. Tom Revenaugh & Stephen Hyde were SPS friends who have passed. Both designated their memorial tributes go to the NORD SPS research fund. I am taking a moment to honor their memories with their contributions to this grant.

Rare Disease Day

Hope on the wings of angels.

Copyright © 2011