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.

My brain's writting checks that my body can't cash!

“His brain is writing checks his body can’t cash.”  Dude Benson used to say, about his dad (and my friend), Ken Benson.* I suppose there is some truth to that statement; after all, we all have limitations imposed by accident or disease or native ability, but I refuse to let that keep me from cashing in on the maximum effort my body can deliver.  Everyone with hope has images of a better future flash within their brain and without hope we live dismal lives, consigning ourselves to become prisoners of our circumstances and I never learned how to do that.

Don (right) lifeguarding at LPHS 1959

 I learned to swim before I could walk and I intend, with a fixed determination, to swim until I die.

In 1960 I was assigned to the Navy’s Electronics Technician “A’ School on Treasure Island, San Francisco, California.  The island must have been beautiful when it was the center piece for the 1939 World’s Fair.   When I attended Basic Electronics School, way back in 1960, T.I. was rivaled for austerity and lack of creature comfort, only by the other rock in the Bay: Alcatraz.  We lived in pre WWII barracks; 80 to the unit, and we ate in a substandard chow hall that tried to feed 500 hungry sailors during a staggered 2 hour block.  The same movie was shown Sunday to Saturday.  The trolleys ran infrequently. There was only one way into or onto the island.  We were unbelievably  isolated. There were no snack bars, restaurants or any other form of entertainment.  There was an old “gym” on the base, but the “gem” of the island was the 50 meter 8 lane swimming pool.  It was constructed during WWII and was used to train pilots how to ditch at sea.  It didn’t have much room for spectator bleachers and the 8 racing lanes were a functional mystery given the initial intent for its use.  A small group of sailors got together to form a team, but the effort would have been made in vain had  Finn Ruska not needed a place for training his Olympian daughter, Sylvia.

 I participated in the 12^th Naval District Swimming Championships in 1960 which were held in the 50 meter pool on Treasure Island. My older brother, Walter, had come to cheer me on and there was hardly enough room in his MG for a driver, a passenger and my trophies. Two things can be attributed to my success: for the first time in my life I was eating three square meals a day, and Sylvia Ruska paced me and pressed me to achieve more with each stroke during work outs. 

 Ironically by 1987, the Navy had moved Headquarters 12^th Naval District to Seattle, Washington and just before retiring, I swam in the 12^th Naval District’s Swimming Championships held at the Submarine Base Bangor, Washington and I swam every race I had won in 1960.  It wasn’t until five years later that I was diagnosed with Parkinson’s disease.   I still didn’t know how and when to quit.

In 1995 we moved to Cedar City, Utah, near the campus of Southern Utah University (SUU). I had been teaching high school electronics and math in Washington but the progression of my Parkinson’s made it impossible for me to work in a classroom setting, so I thought that I would work on getting my Master’s Degree. I did not realize at the time, that new Parkinson’s meds had affected me cognitively and I was unable to accomplish tasks that required sequential thinking; I also began experiencing double vision and had to relinquish driving a car to my wife, Carol.  This was a pretty low point for me and I found my days spent at the SUU swimming pool and wood shop instead of in the classroom.  The first time I swam in the Utah Summer Games, in 1996, I won eight gold medals.  Over the next 5 years I won about 15 more and at one time I held 13 records in my age group, at the Utah Summer Games.

By 2002 my lower back began giving me trouble from an old injury and my Parkinson’s made it safer for me to use a power chair at least part of the time at home and around town.

In 2004 my lower back was causing me constant pain and I was seriously disabled by Degenerative Disc Disease. After surgery on my lumbar spine I gained considerable relief and having been out of a pool for several months, even the therapy pool was encouraging me to imagine my return to swimming competitively.

In March of 2006 I began having some pain in my chest and left arm but hadn’t mentioned it to anyone until, after enjoying lunch with Carol at one of our favorite cafés in Cedar City and stopping to browse for treasures at one of the town’s thrift stores, I climbed into the passenger seat of our SUV and Carol asked if there was anywhere else I wanted to go before we headed home.  I quickly replied, “Take me to the hospital.” Carol looked over at me and saw a pale and sweaty face and obvious signs of pain.  She turned the car toward Main Street and headed to the hospital, all the time asking me questions about how long this had been going on and exactly what my symptoms were, gathering as much information as she could in case I lost conscientiousness. The next day I was transported to the Regional Hospital in St. George, about 40 miles away, and received two stents to open blocked arteries. As soon as the doctor would allow it, I was back in the pool at SUU where I was a part time assistant pool manager and enjoyed lowering myself into the pool from my Jazzy power chair and swimming as though my Parkinson’s had been cured. I had even had to pass the Red Cross lifesaving course before I was hired at the pool.

In 2007 I lost the use of my right hand, which collapsed into a tight fist; I could only extend my fingers by prying them loose with my left hand.  Many months later I was told that I had ulnar nerve damage that had caused my hand to be useless to me, especially as I tried to pull my body through the water.  I made plastic paddles to which I strapped my pried open hand, and I was back in the water again; this time I would not return to competition (at least not formal racing), but, I pushed myself to compensate for the “fist stroke”.

In July of 2008 while visiting my brother, Walter, in El Cajon, California I was working alone on a wood project and fell backward on the driveway hitting my head and injuring my neck.  A trip to the hospital revealed that the Degenerative Disc Disease had done serious damage to my cervical spine, and I underwent surgery on all the vertebrae in my neck.  My two week visit to my brother’s was extended to six weeks as I worked to regain function at an inpatient rehab facility.  Without the pain of the injury I could have imagined myself at a country club, what with the pretty therapists, great food, big screen TV, outdoor dining at umbrella covered tables and even golf lessons in the beautifully landscaped gardens under the warm California sun.  The only thing missing was a swimming pool, and I couldn’t wait to get back in the water again.    

In mid-September of 2009 I returned from the Submarine Reunion in San Diego, anticipating our 50^th high school reunion in October.  As we drove home from the airport I mentioned that I was tired and short of breath; Carol and our friend Delores said that it was probably because of the trip and all the eating out that we had done. I also mentioned that I had had some tightness in my chest before the trip.  After some discussion, we decided that if I wasn’t feeling better in the morning I would go to the hospital and get things checked out.  Morning came and with it the visit to the hospital; by then I was having real chest pain and the doctors scheduled me for an angiogram.  I had some serious artery blockage and an angioplasty was attempted but they couldn’t get through the calcified plaque.  Another angioplasty was scheduled for the following day and this time the artery was dissected.   Things went from bad to worse and after three weeks in ICU during which time I “coded” having had a massive heart attack and other complications, I was transferred to the University of Utah Medical Center for an emergency mitral valve replacement and bypass that saved my life. The details of this hospitalization is another whole story, but in November I was transferred to an inpatient rehab hospital and began a month long recovery before being sent home for Christmas. In February of 2010 I returned to the hospital for a pacemaker.  Finally, in March I was able to get back in the water; swimming much more slowly, but happy to be in my element again.  

In 2010 we moved to Enumclaw, Washington. Then, in 2011, after several bouts with congestive heart failure and severely diminished heart function (25% ejection fraction), I returned to the hospital to have my pacemaker replaced by an ICD (pacemaker with a defibrillator) so I’ve been banished from the swimming pool again.

When I had had the surgery on my back in 2004, the doctor told me that I should be able to get about four years of benefit from the lamonectomy.  Well, it’s been eight years and today I had cortisone injections in the hope that I can get enough relief from the pain that has finally returned, to be able to get back in the pool and back to the Cardiac Rehab Program I had started at the Seattle, VA.  I may only be able to “water walk” with the Seniors at the Enumclaw City Pool, but…

 …I still don’t know how or when to quit… ...don’t want to learn either!

*see “Hanging on the Wall”, an earlier blog post

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

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.