Florida: It Was SO Worth the Trip!!

We just returned from a week spent with our kids and grandkids in Florida. Traveling is always a BIG Deal with Parkinson's! Packing and remembering all the things we need to take with us is exhausting even before the trip begins...Don's Meds, check; Carol's Meds, check; manual wheelchair, check; electric toothbrushes, check; extra unders, check; Living Will, check; Power of Attorney, check; walker, check; etc., etc. Oh, Yes...and a huge kite for Kami's Birthday and the "butterfly in a jar" and "firefly in a jar" that slowed us up going through security( even more than usual). We had such a good time, in spite of Don falling out of A.J.'s bed, and briefly losing his suit pants at the temple (belt too loose and no suspenders). It's way TOO HOT and HUMID in Florida this time of year, but we wouldn't have missed the long awaited Hashey Family's sealing and spending every morning in the community pool at Jessica's was refreshing. We just can't figure out how people lived in Florida before air conditioning. We missed the best week of summer (so far) in Seattle and traded it for rain and thunder storms in Tampa, but how we loved being with the kids and grandkids! Don bought Truman a bow and arrows so he can go hunting with his dad this fall; I enjoyed working two puzzles with Kami and Jessica and playing their new digital piano and listening to Kami practice. We watched Kami's dance class and A.J.'s gymnastics. They treated us to the CherryBerry Frozen Yogurt Bar and Kobe, Japanese Steakhouse and a local family's grill (with the best hamburgers ever!!) and of course, we went to Chick-fil-a and breakfast-for-dinner at IHop. All of that, and the lunch with Mindy and Billy and family and friends at Olive Garden meant that we were fed and entertained like royalty. A BONUS was when we were able to volunteer for a later flight when our flight was overbooked (Thanks to Jessica for being flexible picking us up) and were rewarded with a voucher worth another trip for the two of us...Yay!! We'll be going back again next year for Alishia and Zach's wedding...in June...(oh, why couldn't they have chosen January or February?)!!

For the Bookshelf

Two more great finds for our Parkinson's library.  First, "Parkinson's Disease: 300 Tips for Making Life Easier" by Shelley Peterman Schwarz; I didn't think that after more than 20 years of living with PD in our home that there would be anything that we hadn't tried to make life easier...but...this book is filled with wonderful suggestions for making everyday life at home and while traveling or having an evening out, easier and there were several things that we had never heard about or considered; we will be trying some of these out shortly.  If you or a loved one is newly diagnosed with PD this book is worth every penny of the $16.95 price tag. Next, Parkinson's Disease: A Complete Guide for Patients & Families by William J. Weiner, M.D, Lisa M. Shulman, M.D. and Anthony E. Lang, M.D., F.R.C.P., is exactly what it claims to be: "a comprehensive resource for coping with medical, emotional and practical challenges" of Parkinson's Disease.  This book, published by Johns Hopkins University Press is the most comprehensive and up-to-date book that we have found on PD and , while it is very thorough in covering all aspects of the disease, it is very easy to read and to understand; not steeped in complex medical language and doctor talk.  If you only had one resource for your information about Parkinson's, this would be the one we would choose.

The Challenges of Care Partnering

This post title is taken directly from Anne Cutter Mikkelsen's book Take Charge of Parkinson's Disease: Dynamic Lifestyle Changes to put You in the Driver's Seat .  The mailman just delivered my copy of Anne's book and I have spent much of the afternoon reading some of the chapters and purusing the recipes. The chapter titled, When a Spouse Becomes a Caregiver, by Nanette J. Davis, Ph.D. lists nine positive aspects of care partnering; she refers to these as "gifts", and they are:
     1. Having an open heart.
     2. Connecting with the generations.
     3. Expanding your coping abilities.
     4. Willingness to experience role reversal.
     5. Reinvigorating family relationships.
     6. Strengthening bonds with the community.
     7. Giving back to others.
     8. Expressing our spiritual values.
     9. The importance of self-care.

As I read about each of these I came to know how they truely are gifts to me as I face my own journey with Parkinson's.  I am reminded of the miraculous blessing it is to have a Father in Heaven who knows and loves me enough to have helped me open each of these gifts as I have cared for Don and our son, Scott, so that I would have these "present" in my life as I confront the  challenges of Parkinson's in a very personal way.  The suggestions for reducing caregiver stress are also, "gifts" I can give to myself (and Don) to bless and sustain us in the coming days.  They are:
                                   1. Start a regular and realistic exercise program.
                                   2. Strengthen your social network (know your neighbors)
                                   3. Follow a well-balanced diet (fruit/veggies/grains)
                                   4. Avoid eating or drinking too much.
                                   5. Breathe deeply throughout the day.
                                   6. Quiet your mind with meditation, yoga, reading or prayer.
                                   7. Be impassioned about your life.

My favorite "gift" is number six.  My favorite scripture is "Be still and know that I am God."  I am, after all, one of his children and he loves me and he walks with me daily.  My role is not to ask "Why?", but to ask "What do you want me to learn or teach through this experience?" Don has been a great teacher for me and we are blessed to have each other as true "care partners"...I love that phrase.

Out of the Mouths of Babes.....(meaning Grandchildren...

...NOT blond, curvaceous women!)

Calvin: "Did Grandpa forget to take his pills?"
Me: "No, He just took them."
Calvin: "Oh, I guess they're just not down to his feet yet."

Emma: "Look! Grandpa's hopping!"

Josh, as Don tries to get his feet moving through a doorway: "Grandpa, your feet are stuttering."

3 year old Meegan, sitting on the front steps; looking dejected, as Grandma and Grandpa arrive for a visit: "My life!!...it's not fair"
Grandpa: "I know just how you feel, Meegan."

Forever Dad* (a Father's Day sonnet for Don)

Forever Dad* 

click on Title to go to Scott's poetry website: Sonnettics

Posted on June 16, 2012 by Scott Ennis

Much more than just some actor on a stage
You’ll be a dad forever; that’s the truth
I’ll always find your timely wisdom, sage
A treasure that I found while in my youth
I love the wisdom that my father shares
He teaches me what strength and love are for
I know he isn’t perfect, but he cares
He gives me all he has, then gives me more!
I hope that I can be as sage as him
The Wise Old Owl in fatherly disguise
I hope such wisdom fills me to the brim!
I want to overflow with words so wise!
Such thoughts of you, forever make me glad
I’m happy for such thoughts, Forever Dad.

Forever Dad, read by Scott Ennis
*For my Father

Don's Cradles

Mission Bells for Judie's Grandbabies

Every girl wants a cradle....

....every man needs

              meaningful work.

Don in his tiny shop in Cedar City, UT

For Brooke

For Lisa

For Rachel

When Don was diagnosed with Parkinson's in 1992, he was teaching electronics and math at Auburn High School in Auburn, WA.  In 1994-95 he taught on a reduced schedule, but just didn't have the stamina to keep up with the kids and the demands of the job. In June of 1995 our daughter Rachel graduated from Auburn High; we sold our bookstore and our house in Pacific, WA and moved to Utah with the two youngest girls. After working the summer at the Utah Shakespearean Festival, Rachel returned to Seattle to attend the University of Washington and Jessica began her Junior year of high school in Cedar City, Utah. Don was trying to deal with his Parkinson's (new symptoms, new medications and a new doctor); he had met Kenny Benson who lived directly across the street and had advanced Parkinson's.  Kenny was a mirror image of what Parkinson's could do to the body and what the future might bring, but he was also an inspiration (see the blog post "Hanging on the Wall"). Don watched Kenny build whirly-gigs in his little tool shed and knew that retirement, even with a disability, needed to be more stimulating if he was going to survive and thrive.  By January, Don had decided to enroll in a woods class at Southern Utah University, about four blocks up the street from our house.  The instructor in the woods workshop was Dr. Mike McGarvey who had just arrived from Kentucky; Don and Mike would become lifelong friends. Mike asked Don what he wanted to make in the class and Don thought that a reloading bench would be something he could use, but Dr. McGarvey said that was too big a project; so Don went home to come up with a "simpler" project.  As Don and Jessica sat on the porch steps after dinner and watched the lightning play on the mountains to the east of us, Jessica said, "Daddy, would you build me a cradle?" Jessica knew that Don had built a cradle for her oldest sister, Pam and she was afraid that his Parkinson's symptoms would be too severe for that kind of a project when she was old enough to marry and have a baby. Don couldn't turn her down, so he presented the idea to Mike who thought they could find a pattern for something simple.  But, Don had other ideas; he would design the cradle himself; he wanted it to be unique; a cradle just for Jessica.  This was the beginning of Don's love affair with wooden cradles and his friendship with Mike McGarvey.  Cradle building has kept Don happy and busy for most of the two decades since his Parkinson's diagnosis, but when we moved back to Washington two years ago, Don's symptoms had progressed to the point where using his power tools was just not safe any more.  Jessica is married now and has two children who have used the cradle her Daddy built; nearly a dozen other young mothers are glad that Don and Dr. McGarvey kept the friendship and the cradle building going, to produce, with love, these beds for little sleepyheads.

For Misty

For Meegan

Hanging on a Wall (a story about how the impact of one man's life with Parkinson's gave another man reason to live well with PD) by Don Ennis

Cedar Mountain's red rock cliffs remind me that when I came to Cedar City to stay, I was bruised and bleeding and hanging on a wall.  I came to a place where what remained of my family responsibility would be safe while my tremorous right hand and arm held long enough to put things in order.  I didn't come here to live, I came to die.  I came here to cling to the wall as long as I could with Parkinson's disease.  I came to a place where I could choose the time of my letting go, only to be reminded that letting go is not the choice.  Gravity will force the letting go.  Humanity will hang on.  I've been here before.

When I was eight or nine, I lived in the first house, in the fist town I can remember: Sedamsville.  Sedamsville is on the very outskirts of Cincinnati.  Dad used to say the city limits were at the maple tree, half way up the hill to the house, so the house itself wasn't in the city.  Don't hold me to what Dad used to say.  Dad used to say a lot of things I continue to believe solely out of parental respect.  The "city limits" did, however, give us license to shoot our twenty-two rifles from the porch so long as we aimed away from the city and the town.  Of Sedamsville, my brother Tim (who was really named Richard) once remarked, "It was a place painted by Norman Rockwell."

By this, he didn't mean Rockwell stopped by with his easel to capture the place on canvas.  Tim meant that Norman Rockwell painted the place into existence.  Descriptive hyperbole, perhaps; but since the only other philosophical statement I can remember Tim uttering these fifty years has been, "Everyone should believe in something.  I believe I'll have another beer." the Sedamsville statement about Rockwell is significant if not accurate.

My childhood in Sedamsville was idyllic and halcyon.  I one had a college English professor who red lined "halcyon" in a paper I had written and she editorialized with the word: "archaic".  I havent' used the word since, but how else can I describe a place where a real stern wheeler steamboat boarded half the town's people every summer and serenaded them with a steam calliope on the way to the amusement park up river.  How else can I describe a place improved out of existence, a place where a troop of lost boys once roamed. 

I was the youngest of the boys.  My cousin Eugene was the oldest.  Actually, my brother Walter was the oldest, but Walter was studious and responsible, like I would one day become, and he couldn't properly be counted as one of the troop, but when I was eight or nine, I was one of the boys, and in between me and Eugene were cousins Ron, Tom, Bob (his real name was Herbert) and my brother, Tim.  Occasionally we picked up a non-relative, but they never lasted.

We were engaged in a perpetual game of follow the leader, and to last required blood ties.  As the game wore on the leader got bolder. The rule was, if the leader failed his chosen obstacle, he went to the end of the line.  I was the youngest and usually occupied that position.  The line stopped at a retaining wall.  We had walked up the driveway around the old milk wagon garage and stood on the wall overlooking the garage roof.  The roof pitched downward from left to right so the end of the roof on the right was lower than the wall.  The distance from the wall to the roof was more than a step, but less than a running jump.  It was more than a standing flat-footed jump, but jumping wasn't the problem.  The slant of the roof was the problem.  Once you hurled yourself from the wall to the roof, you had to stick or you would fall to the ground, only there wasn't any ground, there was only glass.  Layers of broken glass milk bottles, deposited by generations of pre-ecology milkmen, hid the dirt, with peril to barefooted boys.  Once you made it to the roof, you had to scamper up the roof to get above the wall to jump back.  Here was a challenge.  Eugene, the present leader, and nimblest of us all, jumped to the roof; scampered to the correct height and returned to the wall.  The rest followed in similar formation, except for me.  There are times when Darwin's concept of evolution is flawed.  Some of us choose a poultry genealogy.  I chickened out!  Shame among catcall clucking invited me not to the end of the line; it demanded my removal from the line, from the troop, from the tribe.

I was alone for days or weeks (years and eternity to an eight year old boy) until need and pride brought me back to the wall alone; still emotionally covered with feathers, but resolute.  There was no way I would not jump.  I had calculated the improbability of success; I was sure I would fail, as sure as I knew I would jump.  I thought about the glass.  I saw myself roll off the end of the roof.  I saw bare feet from the broken milk bottles' view.  I saw the blood.  I feared the loneliness.  I feared the shame of tribal uselessness more.  I jumped.  No slow motion.  No arboreal flight.  Electron-tunneling, timeless speed.  My feet on rough concrete one second and at the same second my feet on asphalt tar-papered roof.  No time between the two events.  Then, feet, hands, legs, arms and body "velcroed" to the roof.  I was safe.  I was redeemed.  I only needed to get back to the wall and from the wall to the troop.  Jumping back was easy.  I jumped from just below the roof peak.  Gravity did most of the work.  My feet touched the wall.  Overconfidence did the damage.  M feet touched the wall only briefly, and then my rib cage caught the concrete wall's vertical and horizontal meeting, forcing air from my lungs and blood from broken skin.  Pain slowed time.  I grabbed the fagged concrete; it grabbed flesh.  Gravity accelerated boy mass and speed.  My chin made rapid contact with the place my ribs had been.  Tooth on chipped tooth bathed in blood behind my lips.  Time stopped.

I woke up bruised and bleeding and hanging on the wall.  I hung there eternally, with gravel impregnated hands.  Time and gravity were my enemies; the glass below my bare feet was my end.  I felt fingers wrap around my wrist, and although my own fingers were determined to defeat gravity, they were not prepared to overcome levitation, nor could they fight both forces at the same time.  I floated upwards, my hands outstretched above my head, in a slow ascending dive; propelled by salvation in the form of an older neighborhood boy.  He was, perhaps, only several years my senior, but at least a head taller and strong enough to get me off the wall.  I can remember the general area in which he lived.  I can recall his build and the shape of his face.  I distinctly remember he was wearing a white shirt that day.  Sedamsville was not, and is not, a white shirt community.  Although I knew his name the, and although I remember the wall incident in vivid detail, I cannot today recall who he was.  I know who pulled me from the wall in Cedar City; another neighborhood boy, several years older and at least a head taller, and strong enough to get me off the wall: Ken Benson.

Thirty years of Parkinson's disease and an aneurysm "as big as a grapefruit" preceded Ken's trip across 300 West to greet me on a clear, southern Utah, June afternoon.  Ken is difficult to understand (one of the many Parkinsonian symptoms), but I remember his first words to me: "Do you know that I have Parkinson's disease?"  Had I not just thought, "that man has Parkinson's disease" and had the thought not come with a euphoric spiritual assurance?  I can only vaguely define in retrospect, his greeting may have seemed totally incongruous.  I smiled and offered him my trembling hand and softly said, "I know.  Do you know I have Parkinson's disease too?'  I hung around Cedar City for about a week before I had to be in Washington D.D. to bless a new granddaughter and to witness the Fourth of July celebration on the Washington mall.  All that week I watched Ken from my front porch.  He raced up and down the street on his three-wheeled scooter, crossing when he wanted to and waving at everyone.  People often slowed or stopped their cars to wave or say hello; pedestrians always stopped to talk.  If the city fathers ever tire of the geographic addresses imposed by the Mormon village model, 300 West in Cedar City will have to become Benson Boulevard, not because Ken's grandfather farmed most of the area traversed by 300 West, but because Ken "owns" this part of the street!

One Thursday morning after I had returned from my trip, I began to know my new neighbor as I began to confirm a friendship.  I watched Ken attack a trash can.  Attack is the best word I can use, for that's the way it appeared to me.  Ken grabbed the big awkward container by its handle and tipped it on its side.  He poked inside with his cane and righted the can and dragged it about.  I was reminded of some video footage I had seen of a grizzly bear in Yellowstone Park playing with a fifty-gallon drum.  I watched this game for a full fifteen minutes and I don't know to this day what it was all about; it really doesn't matter.  I learned that this man doesn't give up.  That matters!

I don't know when I first saw Ken stand up.  I knew he had been a football player.  His autobiography, which he let me read, says he was a fourth round draft pick for the Bears and the 49'ers.  His son, Did, always mentions first round.  I don't know the difference.  I suspected Ken was big; I mean really BIG; I didn't know how big until I saw him stand up.  I don't remember when I first saw Ken stand up.  I can tell you I was impressed.  Ken Benson is a giant!  But six-foot eight and three hundred plus pounds are one kind of giant; I was more impressed by another measure.  I was more impressed the first time I saw Ken give one of his grandchildren a ride to school

A giant on a three-wheeled scooter, giving a ride to a child who love him is a scene size cannot describe.  It is an act that taught me, despite affliction I could still be useful.  I gave meaning to what I learned on the wall.  Hang on!  There is reason to endure to the end!

In the Beginning (of Our Journey with Parkinson's)

1991: Don had been retired from his career as a U.S. Navy submariner for 4 years.  Our family was complete with 4 boys (ages 18-28) and 4 girls (ages 12- 30); we had four grandchildren, and we had finally settled into a relatively normal life pattern.  Don was teaching electronics and math at the high school; there were four children still at home and we had purchased 6 acres of beautiful lake front property on the Olympic Penninsula with dreams of building a house and retiring in the quiet loveliness of this forested retreat. In October, Don was asked to do a reading  of Ole Man Adam and His Chillin' at our church talent show.  Don was a good speaker and storyteller and he was never self-conscious or nervous in front of an audience.  After his reading he sat down next to me and said he couldn't figure it out, but his right hand was shaking like he had a case of nerves, but he wasn't nervous.  Over the next serveral months, in spite of the busy holiday season, we would sometimes notice that his right hand was shaking when he was just resting it in his lap or at his side.  In February I had the opportunity to purchase the "church bookstore", something I might only have dreamed of, if I had even thought of it, a few months before.  After some discussion we decided that we would put our property at the lake up for sale...if it sold for our asking price, we would use the money to finance the bookstore, but if it did not sell, we would just have a nice library of church books and still have our retirement property. The property sold in 3 weeks; for our asking price and I was a very happy bookstore owner.  I couldn't believe that Don had agreed to sacrifice the property and seemed to be okay with the decision.  We had worked so hard on the property and had such fun with the children there; we'd had a family reunion at the lake in 1987 when Don retired from the Navy and our son, Scott returned home from his service as a missionary in South Africa. These were, and are, wonderful memories, but we could not have guessed how difficult retirement would have been on that property that sloped from the county road to the lake shore.  By April we knew that Don needed to be seen by a doctor about his shaking hand and the after-school fatigue that caused him to fall asleep on the living room floor and not even want to wake up for dinner; this was so very much NOT at all like him.  Don saw our family doctor first and was then referred to a neurologist who diagnosed his condition as Parkinson's Disease. We were shocked; Don was in denial and his mother kept saying, "I don't understand.  He's my healthy boy, he's a swimmer and he never smoked and he never drank and no one in the family has ever had such a thing." Time would pass and soon there was no denying the diagnosis; so we did what we always did when facing something new; we read and studied everything we could find about Parkinson's Disease and counted our blessings realizing that there were worse diseases (or at least those that progressed more quickly and with more finality).  Don started taking a low dose of carbidopa/levadopa (Sinemet) and was usually symptom free (at least to the view of those around him).  Don's symptoms progressed slowly, and he added new medications to his "diet": Comtan, Eldepryl, Amantadine, Azelect, Requip,Permax and others were tried; some were discoutinued and others have become "good friends".

FAST FORWARD......

April 2012: For the past several years I have been Don's caregiver.  Oh, I don't mean that every moment has been occupied with attending to his needs, nothing could be farther from the truth, but he needs my help dressing; I do all the driving; I am constantly on the look-out for safe paths (moving things and people out of his way...'cause once he gets going he needs a straight, clear pathway to wherever he is headed).  He needs help cutting his food and reminders to take his medicines (there are MANY now) and encouragement to take l - o - n - g steps, and he needs my arm when his feet start to "stutter" in a doorway or at a transition in flooring. Don is amazing...he is determined to do as many things on his own as possible and he will spend hours with the impossible before he will ask for help.  All of this said, he is spending more time in his wheelchair and would certainly not be able to live alone (even if sometimes I'm sure he'd love to dimiss me and give it a try).  And now for the unthinkable.....last October I noticed that my right hand had a tremor and in December, I noticed that when I was sitting quietly, my lower lip or jaw would tremor.  I also began to find my self saying, "I don't know why I'm sooo tired." and "It seems like I need a nap every afternoon about two.".  Our daughter, Rachel lives nearby and noticed the tremor in my hand; when I told her that it had been going on for several months, she said, "I think you better see the doctor about that.". Don had an appointment with Dr. Roberts, his neurologist, and as I sat in the exam room with him, Dr. Roberts looked over at my hand at rest in my lap, but tremoring, "You've got a tremor, too." he said.  "I know, I was going to talk to you about that.".  Dr. Roberts turned his attention to me and ran me through a quick version of the neuological tests I'd seen him do so often with Don.  "Hold your hands out in front of you like this." (right hand tremoring; left hand steady as a rock).  "Tap your thumbs and forefingers together like this, as fast as you can." (left hand performing like the doctor's; right hand slower and more jerky).  "Walk down the hall for me; just down to that third door and then back." ("not much arm swing on the right side"). More requests...then..."Hmmm.  If you can get a referral from your primary care doctor, I'd be glad to do a complete work-up.". I got the referral; I got the work-up; I had an MRI brain scan and blood tests; I knew that all he could do was to rule everything else out.....then he gave me a prescription for, you guessed it, Sinemet. "Let's have you try this for a few days or so and see how you do."  The weekend came and went; on Tuesday Dr. Roberts called to say that the blood tests and MRI didn't show anything abnormal (that was a relief....or was it?)..."How are you doing?" he asked.  "Well, the medication is working...I'm not sure if that's good or bad!"  I knew that your perspective can change everything and so my thoughts ran something like this: there are worse things than Parkinson's...I already know about this disease....Don has lived with it for 20 years and he still has a pretty good life....in twenty years I'll be 90 & by then I should have something wrong with me...I only wish that this could be a guarantee that nothing else will go wrong (one disease to a customer...wouldn't that be nice?).  At my next visit to Dr. Roberts he asked if he could take a video of me and then of Don...he's going to a conference and would like to show other doctors....."We're going to be famous." I said; then looked at Don's orange T-shirt and my orange blouse and laughed..."They're going to think we staged this!" I laughed as we left the office.  The phone calls to the children, all eight of them, was harder on them than on me, but I shared my thoughts with them and said, "After all, I'm no different today than I was yesterday, except I have more knowledge." I can deal with this, but in spite of the fact that there are no other occurances of Parkinson's in either Don's or my family (for many generations back) the kids now have two parents with Parkinson's...what does that mean?  Was there something in the environment?  Have they been exposed?  We will be doing as much research as we can and will participate in trials and studies if we can be of use to the body of knowledge. Wish we had the answers, but for now we'll just be living, loving, and learning....and sharing what we've learned along the way with others.