Falls: Rearranging our house and lives to prevent (or accommodate) them

Don has been falling a lot more these days, so today we had a visit from an Occupational Therapist to evaluate and make suggestions on how to make things around the house safer and perhaps prevent some of these falls.  She made some good suggestions and we acted on a couple of them right away.  We have removed the sliding glass doors from the shower (Don had fallen against them from the outside and knocked them off the bottom track); I have replaced them with a shower curtain.  We still need to get another grab-bar up high near the toilet so he can hold on while he pulls his pants up.  She also, strongly encouraged him to use the toilet from a seated position, only.  We will also be getting a bench type shower chair so he can sit; then slide into the shower in a seated position.  We plan to put the rails back on his hospital bed and re-install the trapeze so he can use it for repositioning himself in bed.  We will also be looking into getting a security pole to place beside his bed to give him help in getting to a standing position when getting out of bed.  We also, went to look at lift chairs and ended up buying one...it is SO COMFY and really helps him to stand from a seated position. Several months ago we had rugs and carpets removed and installed laminate wood flooring  to prevent tripping.  After all of this...I was just dozing off for a little nap when my cellphone rang and it was Don (he keeps his cellphone on a lanyard around his neck)....I didn't know that he had decided to go outside and bring in the trash can...he was calling me to say he was in the carport and needed help.  I went out the backdoor and found him face down on the driveway; lodged between his power chair, his scooter and his manual wheelchair.  He was not hurt, but just couldn't get up...I put the removable seat cushion from the wheelchair under his head and got a sleeping mat from the camping gear in the shed, to put under his knees.  He tried for several minutes to get his bottom to raise up so he could get to his knees; then finally told me to get the retired Master Sargent from across the street. With the two of us, one on either side of him, we were able to get him on his feet and seated in his power chair.  About a month ago he fell backwards down the back steps while I was trying to unlock the backdoor...I grabbed for him, but to no avail.  He just curled up in a ball and rolled to the bottom of the steps; again, he was not hurt...but I was a wreck!
He is sure cashing in on his athletic abilities/training...I'm sure if I had fallen as many times as he has, I would have broken many bones and would display many scars, at the very least. We'll keep working on all the safety options, but, honestly, Don says he can never tell when he will fall...his legs just suddenly give way and he ends up "on the deck".  It's not like he gets any warning or can tell what might cause him to go down.  Sitting to remain mobile is his best option now...sounds like a contradiction, but, really...it's harder to fall when you are sitting.

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.

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