Go BIG or Stay At Home- We Are Moving!

We are going big, rather than stay at home. The need is too great, the potential so high. Over 40,000 people will be diagnosed with Parkinson's Disease in the next year...and as the nation is aging, our total number with PD will soar in coming years. And here we are in Omaha, home to some of the most outstanding efforts in movement disorders- both research and patient care.

UNMC campus ice rink is the new home of the Skate-a-thon! Come join us January 28-29th.

Our family is thrilled to work with this organization that is such a leader in the fight against PD. Visit the new website at http://phdomaha.org/ for more info on this fun 2011 Skate-a-thon. Please join us- Sign up to skate, or attend the party or to donate generously- Everyone can be part of this - Come help us put Parkinson's on Ice!

The Stage Manager

Fall transforms our yard- the roses fade, mums begin to bloom and glorious yellows and reds grace our trees. The wisdom of the seasons reminds us to expect all these changes, even to see special beauty in them. For our family, the cool temps also means that preparing to put down and fill the ice rink draws closer...as if a silent stage manager is choreographing every move.

But what of those transitions or seasons of our own aging...or health? Is it possible to find some serenity, wisdom or even beauty in our own 'Parkinson's autumn' of fading colors, slower movements and tentative balance? Or at least to carefully observe these changes, without fear or judgement? In the coming weeks, the 'stage' will be set and the ice rink filled. Come back often to watch the transition, and to meet some vibrant creative people who are skating circles around PD.

What I Did On My One Month Vacation

I missed you too. But did you ever notice the undulation, the ebb and flow of interest in human beings? Nothing and no thing is constant...not the cells in our bodies, our moods, taste in food, or daily priorities...just like Nebraska weather. My absence on this blog for the past month (!?!) is hard to explain any other way. So, here's what I did on my vacation...

• Recommitted to my own exercise program. In the rush up to and after the SkateAThon, I was hypocritically neglecting any exercise while forming a program- for exercise! Work- outs with trainer & friends, Bikram yoga, body pump, aerobics...I am back on track.


• Designed, copied, addressed (with lots of help) and mailed hundreds of Thank You notes.
• Spent hours at this computer writing and filling out forms for IRS application of 501c3.


• Got to travel to Minneapolis and Duluth, spending time with loved ones & little ones.
• Celebrated our 36th wedding Anniversary...even made my own gift in honor of it for Ted.


• Worked on developing 'intake and assessments' for those joining the PHD program.
• Networked and checked out some exciting resources for the program- visited WellBound Gym, worked out with Mick Doyle and learned boxing routines- awesome workout!


• Attended the PAN (Parkinson Action Network) Forum, on national policy issues.
• Enjoyed returning to some of my other life-giving gifts: DeMello group, my Thursday CEC prayer group, Servite Center poetry evening and spending Lots of time with Ted.


• Met with and lined up a catering firm for our daughter Mary's wedding in August.
• Welcomed several groups, kids and families to skate- and skated with most of them. :)
• Attended 6+ hockey games and watched many more on TV- and hours of Olympics.


• Made arrangments for 2 trips: Leaving Tuesday for Snowmass Monastery with the Steamboat crew, then back to New York City in April! Flying with friends Helen and Jacey to attend the Michael J Fox MVP dinner and Unity Walk, and celebrate together as our own Monnie Lindsay gets a national award that day- in Central Park with 12,000 PD folks!

I did miss you too...Sun is shining, the birds are singing, and dinner is cooking. any questions?

Gratitude...By The Pound

There is a stage after a big event or celebration, carefully proscribed in every etiquette book, devoted to Thank You notes. The value of these little missives is great indeed, for both the sender and the receiver ( who have now changed places...since the receiver of the Thank You note was the giver of the gift, and the sender of the note...you get it)

So the culmination of a long process finds me walking out of the print shop, carrying a box heavy enough to humble me and physically remind me of 2 things: how many people contributed SO much to this effort...and that I have neglacted my own work out routine and aerobic exercise for too long! Between the holidays, the cold of this winter and the SkateAThon planning and follow up- it just didn't fit in. (translate that- I didn't fit it in) So this morning, I am in that place of feeling like I am starting all over, having no right to encourage anyone else to exercise-I've gone over to the Dark Side.

Like so much of this adventure, the Thank You notes themselves are a group effort: using Phil's photos, saved on Knutson's computer, with my text and an hour of devoted design attention from an artist of Exis Design Shop ( my son in law). I am so pleased just looking at them now, they turned out so much better than I had hoped ( getting to be a common result these days)

Now the learning curve pushes it's way in: with a new laptop and programs, generating the sheets of labels today will be trail and error for me (translate that- powerful mental stimulation)

Then the 'large family' bonus kicks in- when those who offered to help come sit around the table working to get them ready to mail, while having fun.

Altho I skated briefly with Ted on Monday night, I have mostly avoided exercise lately.

My trainer was understanding yesterday...but I see her again today. Despite my stated intentions of working out...I have been up since 5:30 am, sitting in this computer chair (translate that- it's a habit now) and yet, I have a wonderful room with weights and a ball...not 10 feet down the hall....I can almost hear it call my name... But on the other hand, I have been up so long now that it would feel great to curl up with Ted again and sleep a little more. ( translate that...human, with rationalizing skills- notice how I just filled up another 20 minutes avoiding what I set out to do first thing this morning!)

But, now I remember- I am going to have to carry all those hundreds of notes of gratitude to the post office soon- I better go at least stretch out now!

...Anything But!

Someone asked yesterday, "Won't your life seem boring now that the challenge of the SkateAThon is past?" Her question surprised me, and I have reflected on it. After a big trip, challenge, project, or holiday-our time and focus configures itself again...and we get back to 'normal.' Perhaps it's quieter and the thrill of challenge has abated,but suveying the 'normal' of the life you are building at this moment is a good practice....

So, since I am up... My panorama photo above is one that my brother Phil from Phoenix created, and we'll start my survey there. It reminds me of today- 24 hours- a stage waiting to be graced.

Today, ten minutes in the hottub is bliss - muscle stiffness fades as I gaze at the world and sky.

36 years ago- we each had just one best friend stand up for us at our wedding- Barb and Bim. Last night, we had a fabulous dinner with Bimbo ( no explanation of that name coming) at Flemings. Today, Barb and friends arrive from Steamboat Springs to stay here, while celebrating her mother's 90th Birthday. Today, I celebrate lifelong friends.

Today is Grandparent Day at Preschool, so I enjoy 3 grandchildren, children of Cristen & Jenny!

Today, my response is due- son Daniel in NYC, asked me to read something, offer suggestions. (that's a thrill for me)

Today, is my first day of a new clinical trial, taking a PD medication - they won't find answers in research unless we help.

Today, I meet with 3 friends for a prayer/spirituality/breakfast group ( in 1/2 hour)

Today, my spouse Ted goes up to Duluth Minnesota to play Pond Hockey (google it- I had never heard of it either) out on Lake Superior with friends, staying with daughter Michaela and family. Yes, he's got it- bad! Brrr!

Today, reviewing catering bids for daughter Mary's wedding, I pray for their new life together.

Today is trash day for our neighborhood. And today I am thankful for their cold hard work.

Today..is all any of us have. and surveying the panorama...Skate out on each minute of this brand new day, makiing unique lines on the clean surface. It is more than enough.

Miracles On Ice!

Sometimes when I walk down the hall past the den, I hear the hoarse excitement, the yelling dialogue and recognize that stirring music. The story never grows old for Ted, he can watch the movie "Miracle On Ice" once a week. And more often than not, I sit down to watch- again.

In 1980 the US won their first gold medal in hockey... if you aren't into skating, you may not know how their achievement sent excitement and hope through much of the country. Thirty years ago, trying to describe the unlikely victory over a dominant Russian team, announcer Al Michaels coined the phrase " Do you believe in Miracles??" goosebumps come every time....

Human beings, when striving with dedication, working hard with proper coaching- can achieve more than they ever thought possible...more than anyone thought possible. No one person could set this event up or skate for 24 hours. But caught up in the enthusiasm and comraderie with others, a special 'spirit' was created, everyone did their part-and it worked, rather easily.

For me, the idea of ice skating on a cold night, with lots of people around- was intimidating. When my feet get cold or my medicine wears off, my left foot cramps and turns under and my balance is poor. Add some stress, and ice skating looks like a long shot....but it worked fine.

Others who came told us they couldn't skate, or hadn't for years- and then did! It is exhilarating to be watch or be part of things like that- we all love a win.

That's what we're hoping to acccomplish with the PHD Program too- helping people who are facing a tough opponent in PD know that they are not alone, to connect them to activities that can actually improve functioning. With hard work, practice and proper coaching- bouyed by the camraderie and commitment of others, they can accomplish much more than they think is possible...just like last weekend....or that moment in 1980.

So cue the drumroll, and let the breathless announcer call out the stunning results:

• The donations just hit $10,120.83 !! Unbelievable? Not any more!
• 312 people attended, and more skated this year than ever before.
• Checks to the Michael J Fox Foundation = $1,035.00 so far.
• No one, not one person- got hurt. Isn't that remarkable??

Do you believe in miracles? SCOOORE!

Once in A Blue Moon

Once in a great while, the universe lines up in a certain way and takes on a special light- like the second full moon of the month we saw on Dec 31st...or my experience of the SkateAThon.

But trying to explain a peak experience ( the sight of the Grand Canyon, the electricity of a Springsteen concert, rushing the court after a last second shot, or the miraculous birth of a baby)...you know that the sum is greater than the parts, and words can't convery the chemistry or "magic" of the event. But here are a few memorable 'lights' for me:

• Our relief after several fuses blown early in the evening ( think Chevy-I-never-met-an-extension-cord-I-didn't-like Chase in Christmas vacation....and lights twinkled all night.



• Cutting the ribbon to skate with Ted, as newly appointed Grand Marshall Doug in his Marley-dreadlocks hat and toting champagne, rang the bell for our Opening Ceremonies.

• One little girl, reluctantly persuaded to try on skates and use our system of pushing a 4 legged kitchen stool...later skating all on her own, with a grin as big as the discarded stool.



• A line of little kids and adult players in full gear all swaying side to side as they sang the National Anthem and O Canada...then diving across the ice yelling "Let's play hockey!"

• The beaming smile of a Marian coach, surrounded by several girls on her 2000 State Championshiup team, now catching up with friends while juggling babies and toddlers.



• A newly married couple coming just to skate after seeing the KMTV interview, looking up as she put on her new skates, and found a good friend- one of our married daughters.

• The enthusiasm of one young man on his way out the door, digging in his jeans pockets for crumpled bills while saying, " I had such a blast- I need to put in more money!"



• The soft glow on 40-50 faces, crowded closely in the light of Birthday candles on the cake, all outside singing Happy Birthday to Mark, Emily and Johnny at 1 am.

• Watching Ted's face, his enjoyment in seeing the big tent full of excited skaters anxious for their turn...and even our shuttle drivers in the street could hear the crowd cheer.



• Walking across the ice holding the arms and seeing the smiles of dear friends Monnie and Helen, the co-inspirations of the PHD Program, to be together in one of the group photos.

• A friend, wide-eyed at the panorama of fun, offering to connect me to a wonderful yoga teacher for the Program, and another offered to professionally create a PHD website.



• Fighting back tears of joy as we stand with his parents, watching their son who fought a life-threatening illness recently, now a visible answer to prayer skating in the morning sun.



• And Travis sleeping soundly in a chair.

Tune in Monday for the complete results and an announcement about our lofty goal.

The next blue moon won't occur until 2012...but the glow from this one will easily last 'til then!