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A Special Lunch

“To know someone here or there with whom you can feel there is understanding in spite of distances or thoughts expressed. That can make life a garden.” ~Goethe

An extremely rare diagnosis of Stiff Person Syndrome (SPS) also comes with loneliness and isolation . . . a never-ending need to explain with only a glimmer of hope for understanding.  My first communication with another person with SPS was via an Internet support group in 2000, six years after my diagnosis.  Euphoria filled the empty void in my life to have an outlet of mutual understanding.  In the following years, I have personally met 24 or 25 individuals with SPS.  While the Internet can be a wonderful communication tool, I still prefer “real life” to virtual.

Jennifer Trednick & I met on Rare Disease Day as participants for the awareness event in our area.  It was coincidence that we both have Stiff Person Syndrome.  Jennifer told me about Kathi Rose, another lady with SPS, suggesting we all meet for lunch.  After some email tag and schedule shuffling, we had a date, place, and time.  Jennifer, Kathi, and I met a few weeks ago — lunch at an upscale Italian restaurant, located in an Emerald City shopping center.  Instant rapport.  Both ladies are intelligent, optimistic, fun, and full of life.  We share the desire to live forward, know the ugly realities, but embrace the possibility of each day.

Over lunch, we shared diagnostic stories, similar symptoms, differing symptoms, physicians, movement issues, off days, good days, and strategies.  Considering the gravity of SPS topics, our animated conversation could have been on the latest fashions, shoe sale, or hair salons to onlooking patrons.  Dialogue was void of self-pity, negativity, or victimization.  Talking with two women who genuinely understood was liberating, validating, and cathartic for me . . . a good time!

In sharing medications, Jennifer pulled out a sheet of paper to take notes on a certain med — similar to scribbling down the ingredients of a recipe — this one for a batch of unhindered movement.  We shared thoughts on coping.  Physically, we all jump through medication hoops and push personal limits, but yield to the flashing SPS stop sign.  Though emotionally painful, cutting toxic people and situations are necessary for health.  Limited ability is on a timer.  Drama, if a choice, gets taken to the curb.  Laughter, positive people, goals, and “doing” are as necessary as medication.

We learned the general personal details of one another’s lives while validating and learning from each other about the cruel syndrome we share — “the tie that binds.”  (Figuratively and literally.)  Shared female laughter and girl-talk made a few appearances into our lunch talk.

Jennifer and I are both insulin-dependent diabetics with insulin pumps.  If I remember correctly, Kathi is borderline.  Diabetes was another topic of conversation.  Sharing included a show-and-tell of one another’s rigid back.

We had our picture taken outside of the restaurant, normal-looking ladies having lunch.  I greatly enjoyed meeting Jennifer and Kathy, two amazing ladies.  When our busy lives align, we hope to get together again.  It was a special lunch.

 

Stroke Of Midnight

Cinderella: Why, it’s like a dream. A wonderful dream come true.
Fairy Godmother: Yes, my child, but like all dreams, well, I’m afraid this can’t last forever. You’ll have only ’til midnight, and then…
Cinderella: Midnight? Oh, thank you.
Fairy Godmother: Oh, now, now, now, now, now, just a minute. You must understand, my dear: On the stroke of twelve, the spell will be broken, and everything will be as it was before.

Since my Stiff Person diagnosis in 1994, it has taken years for medication, immunosuppressant therapy, and life adjustments to achieve a fragile ‘stability.’ The early years of an inching painful shuffle while contorted in relentless spasm have eased into a relative comfort maneuvering within the familiar security of home, interrupted with occasional symptom reminders.

Part of my life adjustment strategies have been planning my ‘out of home’ activities to coincide with medication peaks–an estimated 3 hours of seemingly unhindered normalcy barring any unexpected SPS cameo appearances. My hiking pole does not denote disability like a cane. Pulling a backpack on wheels gives me an assumed perception of walker security while carrying miscellaneous items, freeing my overdrive nervous system from multitasking the simplicity of just entering a public building.

Three precious hours. If planned right, an activity may overlap times of medication dosage, giving me some extra oomph or a brief extension of pharmaceutical magic.

As always, medication peaks decline at the clanging stroke of midnight. My coach turns back into a pumpkin, horses into mice, gown into rags–Stifferella once again.

Laying in syndrome cinders, I bask in the glowing memory of the ball and I dream. My Prince Charming is a cure, riding in on a white steed with a glass slipper custom-fitted for me. We ride off at the stroke of midnight, no longer a clamoring end to medication magic but ringing in a new day, a new life.

Copyright © 2012

Who Am I?

“I am a flower quickly fading, here today and gone tomorrow, a wave tossed in the ocean, a vapor in the wind.” ~Casting Crowns

This is one of my favorite songs and defines the most important aspect of the many nuances that define me. I am His.

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

Fox & Reeve

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”
~Christopher Reeve~

“One’s dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered.” ~Michael J. Fox~

I met Christopher Reeve and Michael J. Fox on ‘big screen’ dates with my son. Superman II had his four-year-old face flushed with super-hero excitement and mine with female appreciation of Reeve’s crystal baby blues.

Pizza Hut and Back To The Future was another mutual date-night hit…Marty McFly, time travel fantasy mixed with action, comedy, and romance, topped with mushrooms and pepperoni.

I loved both of these actors, experiencing the thrill of the stories and characters they portrayed, a pretend world where good always overcomes evil. Fate dealt both actors a cruel blow…a tragic accident, a cruel diagnosis…indiscriminate reality.

Good may not always overcome evil, but attitude, purpose, and perseverance can. I watched both actors live as the heroic men they were/are…megastars of hope, encouragement, and courage. Living my own tragedy, I became a raving fan.

I listened to Reeve’s candid interviews and future visions. With my SPS symptoms, I can relate to frozen immobility, understand a world with wheels. Some of my SPS pals need a chair. A picture of Christopher and his son are displayed by my computer…a reminder of what ONE can do ‘in spite of’ adversity.

Fox speaks about his progression of Parkinson’s, the loss of mobility functions, and planning activities around medication peaks. I plan my day around my prescription windows of opportunity.

Both men inspire me with their candor, hope, and advocacy. Celebrity status has given both men a stage to showcase everyday heroes who live with physical or mental challenge, a spotlight on needed research for the dark world of disabling conditions.

Christoper Reeve’s hope lives on through his foundation. Michael J. Fox has the largest Parkinson’s nonprofit. Fox has an upcoming television special:

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Michael J. Fox: Adventures of an Incurable Optimist airs Thursday, May 7 on ABC.

“For everything this disease has taken, something with greater value has been given,” Fox says. “So, sure, it may be one step forward and two steps back, but after a time with Parkinson’s, I’ve learned that what is important is making that one step count.”

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““You’ve got to give more than you take.”
~Christopher Reeve~

“I am careful not to confuse excellence with perfection. Excellence, I can reach for; perfection is God’s business.”
~Michael J. Fox~

Copyright © 2009