The Button is Finally Here!

Let the New Year begin! Most new projects include a learning curve and push us out of a comfort zone. Dealing with blizzards, smooth ice, invitations, getting enough skates & food- all those pale in comparison to what we just accomplished! Today, we rejoice in finally getting a button for contributions on this blog. That tiny button was days in the making...as I bounced back and forth between bank, processor, blog site and computer issues, all speaking languages that were hard to understand- while feeling time pressure.

At one point yesterday, it looked bleak. The cursor on my new computer stopped moving. At all. Suddenly without warning, I was frozen on the screen, unable to move. Tried logging out, signed back in, checked settings etc...and then that fear crept in...that it might not work again. I called my son in law who walked me thru trouble-shooting, and Ted jumped in to help. Once the relief set in, I realized that the process was so similar to my experience with PD.

Some small, unseen wiring that I couldn't understand, see or get at, had developed a problem. Things refused to work the way they once did..and that one tiny change threatened to hold up everything else. But with acceptance, reaching out for help, expert diagnosis & support, patience and persistence- we learn and move forward... while taking joy in every small accomplishment. Isn't that the cutest little button you've ever seen?

More Than You Want to Know

Did I ever mention that PD is a baffling moving target for most of us? The symptoms vary widely, and occur in different combinations in people...and vary sharply over time, even in one person over the course of a day. It is more of a syndrome that one illness, really...and then add the complexity that physical exertion or emotional stress can exaggerate the symptoms. This morning, at the risk of providing what the kids call TMI (too much information!) let's look to subtle symptom of Parkinson's. The lesser-known evils one might say, things that don't draw the same attention as our tremors, but keep us on our toes. OK, that's a bad joke...

When WebMD says "problems with sleep...are common," that only hints at changes most of us experience. Problems getting to sleep can be due to anxiety or or to physical restlessness, (been there, done that) while "problems staying asleep may be due to difficulty turning over and adjusting position in bed." Yes. that same turning over or shifting easily...that you sleepily do out of awareness most of the time because it is so automatic. Subtract the automatic, make it take some focused effort- and you wake up, muscles stiff and brain going full speed ahead.

So when our support group meets, we talk about ways to creatively deal with that change. Our own favorites include getting relaxed before bed in the hot tub, meditation, reading or puzzles, melatonin, and a bed that doesn't shift both of you when one moves ( can I say tempurpedic here?) - since the partner still needs to sleep. And of course, if you have a blog, most of the articles can be written at 5 am! ...............and then sneak quietly back into bed.

One little pebble, tossed in the still water- changes much.

The Blizzard Left More Than Santa

Today let's survey what drifted- everywhere. (refer to the earlier Willy & Ethel post about two huge sheets of plastic catching precipitation) The slick system is still not working, in my humble post-Excedrin opinion.

We've shoveled for three days with my sister's family, snowed in thankfully! while all sharing our Haller Christmas- a true feast of 39 people gathered in joy, boisterously at Mom's! Now it occurs to me why skating parties on our rink don't seem unusual...both the Haller and Wuebben families have creative traditions (or weird excuses) to gather in fun:

25 Gravy Bowls- fathers vs. sons touch football, Thanksgiving morning
14 Christmas Haller Sibling Hot Tub parties- ( just gotta see it)

21 'Bracketville' March Madness Days- the kids kept out of school for first round, at a sports bar with nachos & iced tea, 10 am-10 pm

The Cousin Party- with gingerbread contests & one-handed hockey, followed by Manhattans in Papa Joe's honor, and Steve as DD)

2 SkateAThon first-lap surprises-Ted singing to me in Italian, ala Andre Bocelli (still sweeps me off my feet...and not just while ice skating!)

And our newest holiday tradition: Movie Night Marathon at Molly's.

So many ways to get caught up in the spirit of the season... Which reminds me of an insight from my friend Monnie: "Learn everything you can about the illness, then Live as if you don't have it!"

Time to don the boots & parka...and be thankful again that we can do do this wondrous thing together- shovel.

PHD: Parkinson's Health Development

The SkateAThon goal this year is to fund the start of the new PHD Program.

Many people are not informed about any beneficial services when diagnosed with PD. All too often, people are isolated and are unaware of, or unable to afford, services that could positively improve flexibility, balance, coordination and quality of life.
PD is a chronic illness, but finding that measurable physical and mental improvement IS possible gives us tremendous hope. The mission of the PHD program is to offer any person affected by Parkinson's Disease an array of holistic, affordable activities and exercises that are evidence-based to improve our quality of life. Directed by PWP (persons with Parkinsons), PHD will offer these services at a reduced cost to PWP and their care partners or spouses, with participation open to any age or stage of PD, from any medical provider.

Current research documents measurable improvements gained as a result of physical and mental challenges in a variety of exercises and activities. The PHD program will organize classes with qualified teachers at reduced group rates and use PHD funds to further reduce the cost to participants, helping to offset the financial burden of beneficial services not being covered by insurance. Potential offerings include: personal trainer/ exercise classes/ tai chi/ yoga / dance / boxing/massage/ bike riding/ visualization, meditation. Additionally, in learning and practicing these skills with others, our isolation and fear can be reduced and supportive friendships can encourage us in working toward our personal best.

If you, or someone you care about, could benefit from the PHD Program- or if you have skills or resources to offer - Contact me for more information...The first class will be offered Spring 2010! cwuebben@cox.net/ # 402-871-3921 Thank you for helping US help ourselves!

"Shouldn't Be...But Is"

With luminous blue eyes, Father Theophane, the celebrated monk I came to know at Snowmass Monastery would gaze at one struggling to deal with a loss or hardship and sum up Buddhist wisdom, " Shouldn't be...but is."

In coming to terms with any kick in the gut that might come your way, there comes a moment when you have the choice to acknowledge that even though you didn't see it coming, or don't understand, or don't want it to be true- it is. It is. And in that moment, seemingly giving up the struggle and the argument with the universe, or the turning in prayer to say, If it cannot change, then help me to be with it- something shifts. One such small moment comes back to me today. In all these preparations for the SkateAThon, I am reminded of how much has changed in our lives- since the idea of hosting the first one came.

It was November of 2005, Ted was out of town and I was recently-diagnosed-late-night-surfing the net. Finding the Michael J Fox website, I read about the TeamFox 'athletes' who raised money by running marathons, climbing mountains, bike riding for days, etc... and people who hosted fundraisers were invited to a fancy dinner in New York City! Hey, my son Daniel lives in NYC....and I love NYC...hmmm now they had me hooked. So I considered, ever so briefly, running or climbing....which was ludicrous! (remember the old joke..."Doctor, since your surgery, I can't play the piano!" "Could you before surgery?" Well, no...) Discouraged and wondering what I could do, I went out to sit under the stars in the hot tub to think. And in that moment, it came to me- I might not have bought a ticket to the world of PD, but as long as I'm here now and it is my world... I might as well learn to have fun and meet some people, even 'travel' in this new world. And within a day, a friend suggested using the ice rink. Much has changed since...

In fact, a comment at the first SkateAThon led to my husband Ted taking up the sport of competitive hockey ( at age 55!). Now THAT is a new world! So now, just as when we met, I'm again in bleachers, enjoying watching him play... and realizing that I am not the only one exploring a new territory, with new friends, trying to learn to move in new ways...it happens to all of us. Now I am less sure of what " Shouldn't be" and just trying to take in "All that is."

Update on our Progress

Progress isn't the right word, really... that brings a sense of smooth and orderly movement toward a clear goal. THIS, on the other hand, feels like driving an old stagecoach in a black and white western-- the ones with galloping horses attached by a thick wad of reins to a bouncing driver who's not in control, but just trying to stay on board! To paraphrase Lance Armstrong, "It's not just about the ice."

• got a federal EIN # for The PHD Program from the IRS
• with an attorney, submitted Articles of Incorporation State of NE
• spoke to the personal trainer on developing the PHD individual plans
• working on our ongoing collaboration with the local APDA
• coordinated with TeamFox staff on handling funds generated
• learned 'blogging' from scratch and updated posts
• recruited an 'expert' to design the PHD logo ( thanks Phil!)
• recruited help to design the PHD brochures
• started Facebooking (?) to increase awareness and participation
• co-hosted Young Onset support group dinner; recruited
• set up SkateAThon committees in family: food/scheduling/prep
• worked on 501c3 application, and the Bylaws for PHD Program
• met with a PD researcher about measurement & assessments
• sought help to set up accounts/Donation button on website
• scouted possible free publicity: FB, TV interview, newspaper?
• got excited requests from families wanting to join PHD Program
• and shoveled snow

In reading the list, now I guess it does sound like progress...If there is one thing I have learned from Parkinson's, it is that movement doesn't have to be smooth to get the job done...don't worry about how it looks to others-just adapt, keep moving and enjoy the ride. Giddy up!!

"Who is that guy with Grandma Colleen?"

The culimination of our efforts last year came at the Fox MVP awards dinner in NYC, when I handed Michael J Fox his own hockey puck from the SkateAthon. Donated by Stick and Kicks and personalized with TeamFox logo and SkateAThon info, the pucks were given to all who came, skated or donated-- and Ted suggested taking one for Michael. That whole April night seemed magical- as my mother Phyl Haller and I took cabs ( in New York City!) all dressed up, to a posh hotel to mingle with people dedicated to fighting PD from all over the nation...and then Mom meets Michael on his way into the room! Being from Canada, Michael has skated his whole life, even now lacing up skates on the rink in Central Park...and he had heard about our idea of skating 24 hours as a fundraiser on our own rink..a first.

All of the proceeds for the last two years, about $10.000, was sent to the Fox Foundation- because of our belief in their potential to make progress finding the causes and cures of Parkinson's Disease...with a targeted, urgent and results-driven approach that is unique. And yet, research is not the only front in this war...and it is time to take on a new challenge. This year, while still partnering with TeamFox, we will fund the start, right here in Omaha, of The PHD Program: Parkinsons Health Development ...for those living with PD now. A challenge- yes, but as Michael told me, "Skating is easier than walking" - Come find out with us!

Just Add Water

Frequently asked, "How do you make a rink?" Ted replies simply, "Just add water."

The damage control due to recent snow and wind is progressing - there will be a rink soon. Did you know that when piled over with snow, the ice underneath gets soft and melts because of the insulation? Hard for me to grasp - as we shoveled the deep snow drifts in 10 degree weather this weekend. Despite the bitterly cold air, our feet still broke through the surface in several places! Once most of the snow was cleared, the next step on Sunday was to scrape off the ridges from wind and bumps from hardened snow. This isn't your average skating...I watch from the kitchen window as Ted uses his size 13 skates, and 3 grandchildren loudly scrape and scuff their skates sideways- happily attacking each irregularity while practicing dramatic hockey stops.

This family photo for Christmas cards involved as much coordination as a NASA shuttle launch- because we live in 3 states and there are 22 of us, with 7 children under age 5! Taken at Motto Ice Rink after Thanksgiving, it reflects Ted's new passion for hockey and our enjoyment of skating together. But tonight I find myself wondering as I address envelopes to send them out- Should I send one to Santa and ask for a real Zamboni??--before my feet get wet again?

How does a 24 hour Skate A Thon work??

Short answer is- Come on down and find out.
Really, anyone is welcome to come to our home & rink. There are at least 2 people skating at all times from the 6 pm start until 6 pm the next day. We have food throughout the event (Kudos to past donors: Fernando's Restaurant, HyVee, Don Carmelo's Pizza and Brueggers Bagels) hot & cold beverages & music. So come to the party even if you don't skate- help cheer those skaters on and consider a donation to help us meet our goal. $10,000!

For you brave souls- We have 35-40 pairs of skates in assorted adult & kids sizes, and you can lace them up in the changing hut on the deck. Anyone can skate- for true beginners or rusty skaters we have barstools which support you as you glide along, like training wheels. All 24 hours need skaters, so we appreciate if you call or comment here to schedule your time, but come regardless! This year will feature 2 'hockey hours' late Friday night for Ted's MCHL buddies, and we appreciate children on Saturday-our legs are tired by then, so bring 'em. Last year Ted skated 10 hrs and Colleen 8...had a blast! Remember to bundle up- it's cold out there!

Just Another Frozen Friday

Early mornings often begin this way now for me- sitting in the hottub just outside our bedroom enjoying the view with a cup of coffee and a crossword puzzle or a good book, a time in prayer or grateful reflection. I was unaware that Ted took this picture, but it shows one big way that my life changed with Parkinson's.

No longer rushing off each morning to a job that I truly loved- somewhere in the subtle chemical changes, my old friends rushing and multi-tasking are memories, like photos snapped on a trip in the past. Balancing my use of energy and timing my medication is almost second nature, and that keeps PD from interfering with anything I really want to do. My job, as I see it now, is to work hard to manage PD as well as I can for as long as I can, and the good news is that it is that I am enjoying success in this new unforeseen career. I believe that is the best gift that I can give to those I love, and a way to embrace change so as to find joy in the great gift of life.

Along the way, I have found things that work wonders for me: learning everything I can about this complex baffling illness, accessing the best medical care, exercise with a personal trainer and workout partner, yoga, stretching, tai chi, meditation, planning ahead to avoid stress when possible, prayer, big doses of humor, a positive attitude and sharing this journey with new friends with PD by getting Involved- whether in our local support group or at national conferences...and ice skating on this rink with family & friends.

" What is Parkinson's Disease Anyway?"

Still snowed in, so let me answer a question sent into the blog, " What is PD anyway?"

Parkinson's affects the way you move, but is a disease based in the brain. The nerve cells that produce the chemical Dopamine begin to die off, and when the level of dopamine falls too low- symptoms begin to show. Dopamine is responsible for smooth control of our muscles and movement; both conscious movements like walking or unconscious ones like blinking or moving your arms as you walk along. Common symptoms include a tremor or shaking, stiffness and slowness of movement, difficulty with gait and balance, softening of the voice and loss of facial expression. Other areas affected can include sleep disturbance, fatigue, reduced tolerance to stress and cognitive changes in thinking and memory.

Most people are diagnosed after age 55, but it can occur in much younger people as well. While it is not fatal, it is progressive- getting worse over time, generally slowly over a period of years. Despite intensive research, we still don't know a clear cause- and many people with Parkinson's are like me- with No family history of PD at all. For more info on PD, you can check WebMD, Wikipedia, or the Mayo Clinic website. Thanks for asking!

Remember Willy and Ethyl ?

I wish you could see the perfect symmetry: one huge sheet of plastic holding precipitation in the back yard ( aka ice rink) and another one in the front driveway. For those of you who don't know Ted, his unique snow removal process from our huge driveway goes like this-

Before the projected snowfall, unroll plastic previously used for the rink out on the driveway. Watch it snow. Then go out and slide around on the icy slippery plastic, eventually pulling the ends up to scoop the snow and pull it over, dragging the snow off the driveway and into the front yard. I am Not kidding. When the snow is this heavy and deep, however, try to picture our added steps yesterday = using shovels to clear off lots of the deep snow while sliding on the plastic, then pulling with all our might while trying not to laugh, and waving to the neighbors who come out to stare. Photos don't do the spectacle justice...gotta love a man with a plan!

Let It Snow, Let It Snow

We often say "snow and ice" together, but when creating an outdoor rink- they just don't mix. The falling snow clouds up the rink and leaves it bumpy- so we are on a weather delay here. A pretty snowfall Monday kept us from filling the rink more, and steady light snow continues all thru Tuesday. If the ice were ready, it would have been a perfect day to skate with Grandma Colleen and Daddy T while school was called off. So Sorry Anna, Oscar, Isaac and Emily! Soon...

If You Fill It, They Will Come

Sunday: The Omaha weather was perfect for making a rink...projected cold for several days, with little precipitation-which means it's time to unfold the sheet of 40x100 plastic, line the rink and turn on the hose! Hockey teammates Dave Cooke and Kevin Powers and Mark Wellwood got big assists!

Started the water at 3 pm, filled until 11:30 pm (photos coming soon) After we returned home from Ted's hockey game ( he scored a goal with just seconds left in the game! and won 6-3) we took a minute to just stand quietly holding hands, remembering the many moments of joy and love that have been reflected in the holiday lights for 25 years around this ice rink.

Putting up the rink

Today is the day we get this officially started.
- We take this backyard of ours and transform it into a skater's dream.
- We begin to coordinate all of the details needed to make this a success.
- And, we get this blog put together.




Be sure to check back soon to see how we took this back yard and deck and transform it into our own backyard skating rink. This rink of ours has served as the host site for an annual 24-hour Skate-A-Thon. In years past we've coupled with Team Fox to raise money for Parkinson's research. This year we are looking into local Parkinson's organizations who may receive the donations.

In 2010, the Skate-A-Thon will be moved to January to ensure the ice is frozen throughout the 24-hour period. Last year we struggled at the end as temps creeped above freezing. If you were there, you know we relied upon children to stay on the ice and complete the 24 straight hours of people on the ice. We still had quite a few and they made it work!

Please partner with us in this year's Skate-A-Thon. Sign up for a time to skate, make a donation or just come by to make hot chocolate for those who will need a break. People of all ages and skating expertise are welcome. We hope to see you in January, and hope you check back often to find out how we are doing.

Skate-A-Thons from the Past

2009

2008