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?)!!

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.

BREAKING NEWS..... information about Parkinson's Clinical Trials

The PDtrials.org website is closing as of July 3, 2012.  You can sign-up to receive information from the Parkinson's organizations listed below, by going to PDtrials-Information-Request or contact David Blomquist at info@pdtrials.org

* The American Parkinson Disease Association
* The Michael J. Fox Foundation for Parkinson's Research
* The National Parkinson Foundation
* The Parkinson Alliance
* The Parkinson's Action Network
* The Parkinson's Disease Foundation
* WE MOVE

Gentle Exercise for Those of Us Who Have Not Embraced the Idea of Exercise in Our Lives

I purchased two more DVDs at the same time as the Yoga DVD and they arrived yesterday.  I watched both of these from the comfort of my sofa and found myself inching to the edge of the seat so I could "practice" the moves while still seated (don't want to get too commited as yet to the program I have prescribed for myself) just trying to e..a..s..e into this exercise thing. I watched "Tai Chi for balance & mobility" with Scott Cole, first and found myself thinking "I can really see myself doing this!".  The lady who demonstrates the routines with Scott is probably in her 80's...this is TaiChi for beginners, older adults and the physically challenged; the workout is designed to help prevent falls by improving balance, strength, flexibility and mobility.  This actually looks like FUN.  The second DVD that I watched is "Qi Gong for Beginners," with 8 easy to follow routines called Eight Pieces of Brocade.  The program is set in a beautiful outdoor setting on the banks of a river with the sounds of nature and very quieting music in the background.  This is a very gentle and meditative practice, but I am anxious to incorporate this series of routines into my morning rituals. Qi Gong is designed to increase energy and vitality and reduce stress and aims to be transformational.  Chris Pei took me on the most relaxing, disciplined whole-body meditational journey and I loved every moment of it...just wish I'd found this long ago.   I want this to be a way of life for me!

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.

Yoga for Movement Disorders

My latest find is this DVD  designed to be a companion to the book by Renee Le Verrier (although I am using it alone).   Renee is a certified Yoga instructor and Parkinson's patient who specializes in adapting traditional poses for people with movement disorder.  This two-hour video includes: warm-up series; morning, afternoon and evening flows; sun salutation.  There are standing and seated versions of each, as well as tips concerning balance, posture, and tremor.  I am excited to begin a journey with yoga as a daily practice to improve my balance and flexibility and to help rebuid strength. I believe it will be $14.95 well spent.

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.

Yellow Birds for Parkinson's

I've found yet another wonderful website to share with you. Just click on the link in "Favorite Blogs" (at the right) then click on "Blog" and be inspired by this couple's story!

Unfortunately, these birds are no longer available, but the example set by Mike and Anne is one that will benefit all who hear or read their story.

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."

Wobbly Williams and the TryAthletes

Just found this GREAT Blog. http://wobblywilliams/com/  humour, hope and Parkinson's. This blog is out of Scotland and one of their tabs is for TryAthletes; I feel like that is the perfect way for someone of my inability/untried-ability to begin thinking about an exercise program.  As the mother of an Ironman (who now claims to be a Titianium Alloy Man...since his near fatal accident that nearly severed his foot and resulted in a long plate and many screws to hold his foot together at the ankle) I have to admit that I have been totally unmotivated to do much in the way of exercise and my body is showing it.  Now, since my Parkinson's diagnosis, I am convinced that I must become a TryAthlete and get myself on the adult tricycle that sits unused under the carport and get back in the swimming pool, if only with the senior water-walkers.  A yoga class might be fun and I've heard that Tai-Chi is really good for balance. For the past twenty years I've encouraged Don to keep active and I've excused myself because taking him to all his appointments, etc. took up too much of my time.  No more excuses, I've only been kidding myself, anyway...this is long over due! I think that the very least I can do is become a "TryAthlete".

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

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

Submarine Service and Parkinson's...is there a connection?

The question brings with it more questions rather than answers, but having been diagnosed with Parkinson's Disease at age 49; just five years after retiring from the U.S. Navy Submarine Service, Don can not help asking the questions.

     1. How many other submariners have been diagnosed with Parkinson's?
     2. How many have been diagnosed a a relatively young age?
     3. What environmental conditions might have contributed to or caused our Parkinson's?
     4. What about the link between Vitamin D deficiency and PD? How would 36+ months of
          submerged time effect the Vitamin D levels?
     5. How might the geographical locations of sub bases contribute to low Vitamin D levels?
     6. How might exposure to the amines used in the CO2 scrubbers contribute to PD?

The questions continue, but it is impossible to answer any of these until we can answer question #1 and identify those individuals and gather enough data to find any common denominators and perhaps, stimulate interest in further research.

If you, or someone you know has been diagnosed with Parkinson's Disease and served in the submarine service or the bases or shipyards where submarines were maintained or serviced, please help us by leaving contact information with your comments below.

The Dodge: Guts, Glory and Living at Full Throttle

Bellingham, WA (PRWEB) May 31, 2012  Artist and Chef Couple to Embark on a Guts and Glory 2, 000 Mile Road Trip Book Tour in their Classic 1941 Dodge Celebrating Transcendence over Parkinson's Disease by Living Life at Full Throttle. I just found this link and thought I'd pass it along...sounds like a good read.
http://www.prweb.com/releases/2012/5/prweb9557886.htm

   Another book for my reading wishlist....

“Take Charge of Parkinson’s Disease: Dynamic Lifestyle Changes to Put You in the Driver’s Seat” has been named to the Top 20 List of Books in Demand Nationwide by Libraries and Bookstores from Quality Books in the March 1, 2012 Library Journal. A “how-to” for boosting physical and emotional resilience with brain healthy nutrition, exercise, and enlightened caregiving, “Take Charge” contains more than 80 original recipes with the widest variety of anti-oxidant, anti-inflammatory, nutrient-rich ingredients, and culinary herbs and spices known to favorably impact the brain. Author and French trained chef, Anne Cutter Mikkelsen, shares the stirring personal story of how she and her husband, diagnosed in 1993, have discovered how to live well with PD. http://www.prweb.com/releases/2012Top_20_Parkinsons/03Books/prweb9239782.htm

The Best Book on Parkinson's Treatments (written for the layman)

The Parkinson's Disease Treatment Book: Partnering with Your Doctor to get the most from your medications by Dr. J. Eric Ahlskog of the Mayo Clinic, published in 2005 by Oxford University Press (ISBN 0195171934)
http://www.oup.com/us/companion.websites/0195171934/?view=usa
This book is a lot to read, but is written in layman's terms. If you really want to understand your medication options and how the medications work, this is the book for you. Just remember that it was published in 2005 and there are new treatments on the horizon every week. This really helped me understand the doctor's strategies and I was better able to communicate and participate in my care.

These are a few of our favorite things....

Sometimes it's just the little things that make living with Parkinson's more manageable.  Here are some of the things that we have found most helpful:
          1. Shoes with velcro fasteners
          2. Pullover shirts and pants with elastic waistbands
          3. Electric toothbrushes
          4. Plastic urinals (one hooked over a bedside wastebasket and one under the front
                passenger seat in the car)
          5. Bottled water and an extra pill box with a day's supply of medications in the car
          6. A change of clothing in the car (especially underwear)
          7. Adult sized bibs or cover-all aprons
          8. A plate guard (useful to carry in a tote bag when eating out as well as at home)
               Also, foam handle grips for spoons and knives.
   9. A T-handle rocker knife and case (great for cutting food; also carry in tote
                  bag when eating out)
         10. Office chair mats (keeps carpets clean next to bed;under dining chair or recliner)
         11. Grabbers and telescoping magnets
         12. Velcro to replace buttons on shirts (remove buttons and sew them on over the
                buttonholes so  they look like the shirt is buttoned up, then sew velcro behind
                the buttonholes and on the other side, where the buttons were removed)
         13. Rubberized shelfpaper as placemats so dishes don't slide easily
         14. Cereal dispensers, Large storage containers for chips, snacks and
                crackers/cookies (saves the frustration of opening boxes and bags)
         15. Touch lamp on the nightstand (easy to turn on at night)
         16. Lighted digital clock on nightstand
         17. Door levers rather than knobs
         18. Phonebook card holder for playing cards (take an old phonebook to a copy center that has an electric paper cutter and have them cut the book about 1 1/2 inches from the spine; discard the loose pages and with the spine resting on a table and holding the pages together very tightly, wrap masking tape around the "book" lengthwise, securing the ends and leaving the cut edges of the pages to hold playing cards) a clean/new hairbrush will also serve nicely for this purpose
         19. A lanyard for the cellphone keeps it hanging handily around the neck (we both have cell phones and use them often to save steps around the house and when shopping in stores; they are a must have when help is needed because of a fall or freezing)
         20. Book rest or laptop table (wonderful to keep books, iPads, laptops, etc. steady when reading)

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.