On Tuesday evening, April 24, my friend Carolyn and I were enraptured by the beautiful and technically stunning Edison Trio.  The trio consists of Geoffrey Herd, violin, Wesley Baldwin, cello, and Kevin Class, piano–each of whom serves on the faculty of the University of Tennessee-Knoxville.  This ensemble represents some of UT’s finest musicians.

As the final offering of the Episcopal Church of the Ascension’s Friends of Music and the Arts (FOMA) series, the Byzantine beauty of the nave and the excellent acoustics provided the perfect venue for such a concert.  The only downside to the evening was when the music had to end!  Knoxville should take notice of this relatively new trio and be sure to attend their future concerts.

Three pieces (modern, contemporary and Romantic) thrilled us:

Joaquín Turina (1882-1949). Piano Trio No 2 in B Minor, Op 76 (1933)

I was not familiar with Turina, but I learned later that there was no Spanish composer who devoted more energy to chamber music.  Although he spent only his student days (1905-1914) in Paris and spent the rest of his life in Spain, his chamber music is heavily influenced by French masters such as Debussy and Ravel.  The French emphasis on melody and beauty of surface and texture carries into this handsome, short Piano Trio, which uses the “cyclic” technique used by Franck and other French composers.  Consistent with French impressionism, the composer’s working title for the work was originally “Three Nocturnes.” The exquisite first movement themes are stated, elaborated, stated again, but not subjected to the torment of development.  The second movement is in a Spanish-inflected 5/8 meter, has chunky, modal chords for the piano with the two strings scurrying over it – like a glimpse into a tavern full of dancers, it is there and gone.  The finale has shifting moods, opening with the cello and some warning dark chords on the piano, with the main theme stated again at triple speed.  It was masterfully played by this trio.

John Musto (b. 1954). Piano Trio (1998)

Another composer who was new to me was John Musto.  Musto is a contemporary American composer and pianist.  As a composer, he is active in opera, orchestral and chamber music, song, vocal ensemble, and solo piano works.  As a pianist, he performs frequently as a soloist, alone and with orchestra, as a chamber musician, and with singers.  His Piano Trio was greatly influenced by 20th Century American composers such as George Gershwin and Aaron Copland.  The rhythmic energy of this piece kept us on the edge of our seats throughout.  This was a piece for which “moderato” was a misnomer, as its tempo surpassed that and then some!  The harmonic and rhythmic complexities, not to mention the tempi, required virtuosic skill, and the Edison Trio presented that in large measure.

Johannes Brahms (1833-1897). Piano Trio No. 1 in B Major, Op. 8

Brahms is one of my favorite composers, especially of orchestral and piano works.  This piano trio was completed in January 1854, when the composer was only twenty years old, published in November 1854 and premiered on 13 October 1855 in Danzig.  It has often been mistakenly claimed that the first performance had taken place in the United States. Brahms produced a revised version of the work in summer 1889 that shows significant alterations so that it may even be regarded as a distinct piano trio. This “New Edition”, as he called it, was premiered on 10 January 1890 in Budapest and published in February 1891.  Living in the shadow of Beethoven as he did, Brahms was always revising!    Perhaps an “old war horse” of the chamber music literature, the Edison Trio breathed new life into the beast.

There is nothing that lifts my spirits as much as listening to a beautifully and sensitively played live concert.  We were thrice uplifted on Tuesday night!

Several years ago, I had the pleasure and indeed, the honor, of being a part of the Knoxville Chamber Chorale.  One memorable and beautiful piece we sang was composed by contemporary composer Eric Whitacre.  The title of the piece was Sleep.  Performing this in concert left a lasting impression.

Originally set to the text of the Robert Frost’ poem Stopping by Woods on a Snowy Evening, copyright issues brought by the Frost estate prevented the piece from being published.  Charles Anthony Silvestri wrote new text for Whitacre’s music taken from the last stanza of Frost’ poem.  See below to read the complete text.

To hear a choir, click here:  Sleep by Eric Whitacre.

He’s always been a light sleeper, but these days, George is wakeful many nights.  Parkinson’s, anxiety, and bodily aches and pains prevent sleep from comforting him.  By association, my sleep is interrupted as well.  Sometimes he has nightmares; even hallucinations (thankfully, those have been infrequently lately).

On the other hand, I have always (until recently) been a sound sleeper.  Listening to music, reading, or meditating has been helpful for me to wind down and relax to a point where I can sleep.  However, that isn’t happening for me now.

I wish George, with my help, could find just the thing that would turn off the anxieties of his mind, his racing thoughts, and physical tremors.  So far, we have not found the magic pill to do that.  He recently started taking a new medication, Clonazepam, which is supposed to help him.  We’ll see if it works.

We know that early morning exercise can aid with sleep, but George’s mobility challenges make that harder and harder to achieve.

Nothing is so restorative as deep, REM sleep.  Sleep brings peace.  Sleep is Heavenly.

We pray for sleep.

Sleep – Lyrics by Charles Anthony Silvestri

All my life, I have resisted following the rules.  That probably began before I started school.  Early questions I posed to my mama included:  “Why do I have to stop playing to come indoors to eat?” and “Why can’t I watch Daddy kill that chicken?”  It continued at school when I couldn’t understand why some of the other girls were “so sensitive.”  My first grade teacher called my mother to report a playground incident where another little girl had complained that I “hit” her.  In my mind, it was just a “friendly slap,” so what was the big deal?  I was in big trouble with my teacher, but surprisingly, my mama somehow understood and went easy on me, which was unusual.

There are no real rules for caring for a person with Parkinson’s, yet there are activities that must be performed to care for your loved one.  Medication schedules, physical therapy schedules, and doctors’ appointments all follow the “rules.”  However, before you can care for someone else, you must care for yourself.

Caregiver Do’s

1. Take care of yourself.  This means ensure that you get enough sleep, consume a proper diet, and exercise appropriately for your age and physical condition.  I have learned that a good walk can aid the mind as well as the body.
2. Maintain your activities outside the home as much as possible.  For me, this includes attending church and singing in the choir.  Not only is it a spiritual practice, it is also a physical release.
3. Ask for help.  In our case, this includes having an in-home caregiver.  Our son and daughter also help out when they can.  If you don’t have a caregiver or children, ask for help from friends and/or neighbors.  If others don’t know you need help, they cannot help.
4. Join a support group.  This will help you understand that you are not fighting this alone.  UT has a support group, and there is also one in Oak Ridge.
5. Keep records of all medications, doctors’ instructions, and therapy visits.  Watch for changes in your loved one’s condition so medications or therapies can be adjusted.  Having a computer with Excel comes in handy.  Try to keep detailed notes from all doctor visits and phone calls with nurses.  That can make a real difference.
6. Go easy on yourself.  If you’re like me, you are your own worst critic.  No human being is perfect, so forgive yourself if you think you’ve made a mistake.

Caregiver Don’ts

1. Don’t allow yourself or your loved one to give up.  It is said that no one dies from Parkinson’s; rather, you live with it.  That goes for the caregiver as well as the person with the condition.
2. Don’t obsess or worry about things you cannot change.
3. Don’t expect your world to be like it once was.  Serenity can be achieved through acceptance of your situation.
4. Don’t stay with a physician if you think he or she isn’t helping your loved one.
5. Don’t maintain a medication regimen if it isn’t working, but consult with your physician for changes.
6. Don’t lose Faith.

Some days the “rules of Parkinson’s” seem to change.  Every day will be different, so being able to accept things as they come along will help you.

Some days are just the pits.  Isn’t that true for all of us?  We look at our “bad” days and think we cannot deal with any of it.  Someone recently made the comment that “There is someone, somewhere, who would like to have your bad days.”  I’m not convinced that is true, but perhaps it helps to put things into proper perspective.

Take yesterday, for instance.  Isn’t it supposed to be spring here in Tennessee?  Well, it certainly looked like Mother Nature was playing a trick on us.  April 16 had temperatures in the 30’s and even lower with the wind chill.  Sleet showers, really?  It was altogether too cold for this southern girl!  It was certainly a bad day, weather-wise.

Approaching the parking deck at UT Hospital, I was hoping and praying for a handicapped parking spot close to our destination:  the orthopedic building.  That didn’t happen, so we had a bit of a hike.  You see, George has a “mild” case of carpal tunnel syndrome in his left wrist, which is paining him quite a bit.  That diagnosis was made after a nerve conduction test.  We dutifully obeyed our neurologist’s advice to get this appointment and see what needed to be done.  Why do we baby boomers automatically assume that physicians are gods?  I don’t know, but I’m starting not to believe it.

We braved the messy, cold weather to see the orthopedic specialist.  After about an hour wait and an incredible amount of spent patience, the doctor arrived.  Had he previously reviewed George’s nerve conduction test results?  Apparently not, because he exited the exam room to leave us waiting for another 30 minutes.  During that time, I called another doctor’s office to reschedule the afternoon appointment.  (I must “multitask,” you see!)  When he returned, he said:  “You have a mild case of carpal tunnel and surgery is not indicated.”  I told him we had a wrist brace already at home.   The ironic thing is that we (together with our dedicated occupational therapist) had already decided that using a wrist brace at nighttime would help to alleviate his discomfort. 

Do we need all the medical interventions that some physicians suggest?  Maybe so, maybe not.

I could have been angry about all the “wasted time,” the traffic, and the terrible weather, but I recalled the homily that Canon Pat Grace gave on Sunday morning.  The bottom line was that we should look for Christ in everyone we meet.  This includes the cranky receptionist at the doctor’s office, the clearly overworked doctor, and all the struggling patients in the waiting area.

A wise man once said:  “Afflictions may be lasting, but not everlasting.”  I am also reminded of Paul’s words to the Romans:  “Be joyful in hope, patient in affliction, faithful in prayer.”

I have decided our bad day wasn’t so bad after all.

My person with Parkinson’s requires assistance and care that grows each day.  When he was initially diagnosed in 2009, he handled the management of his own medications, continued to be self-motivated to exercise regularly, and continued participating with various social activities outside the home.  As time went on and his disease progressed, I thought I had to assume all the responsibility for his care.  This worked for a while; then, one day a kindly neighbor called to discuss another matter.  The conversation eventually turned toward “How is George?” and I probably said, “Oh, he’s fine.” He had observed us walking in the neighborhood and saw that I was doing more around the house.  Even though I wanted to present a strong, independent persona to friends and neighbors, I could feel our lives changing.

I will always remember what my neighbor said that day.  It was essentially that he had tried to do everything for his aging wife (who was a victim of Alzheimer’s); but he soon learned that he could not handle it alone any longer.  So, he started hiring an in-home caregiver.  His exact words that stuck with me were “it was the best money I ever spent!”

That was an important turning point.  I saw that it was not humanly possible to assume the roles of cook, bottle washer, housekeeper, nurse, social worker, chauffeur, secretary, et al.  By that time, the role of wife had been shadowed by all the obligatory activities.

We are fortunate that we have long-term care insurance.  This enabled us to hire a caregiver agency, and what a blessing that has been.  We now have a regular, mature, and male caregiver whom we love and appreciate for his strength, dependability, and willingness to handle things that I cannot or do not want to do.  More importantly, he has become a treasured companion for George.  Since our caregiver is a guy, he and George can talk about “guy things.”

For all people with Parkinson’s, and individuals who suffer from other debilitating illnesses, it is vital for the primary caregiver to seek and accept help where it is needed and/or offered.  Pride lied to me.  He said I had to do everything myself.  So glad I stopped listening to him!

It takes a village.  Caregivers, physicians, nurses, physical/occupational therapists, family members, children, friends and neighbors all have a position on the Fight Parkinson’s Team.

Tomorrow we see our neurologist for the first time in three months.  That is good, because before the last visit, it had been six months.  There are constant phone calls to the nurse line with questions in between visits.  Generally, we do not receive return calls promptly.  Do I expect too much?  Perhaps, because I would prefer immediate responses.  Finding the correct dosages and balance with exercise, physical and psychological therapies, and diet is a constant battle.

Thank goodness I know how to use Excel!  The medication list is frequently updated.

I expect that at tomorrow’s visit, George’s meds will be tweaked again.  I certainly hope so.  The primary problem we are facing right now (in addition to the lack of mobility) is inadequate sleep:  both for him and for me.  I can deal with most any challenge if I’m well-rested, but lately, I haven’t been.

Our lives now are a blur of doctors’ appointments (primary care, neurologist, cardiologist, urologist, and psychologist.)  The calendar is full.  A Perpetual Calendar and Clock that rules our days.

We will keep moving!

Thanks for joining me!

When the going gets rough, one just has to keep moving.  Pat Summitt, my favorite women’s basketball coach, used to say:  “Left foot, right foot, breathe.”  I agree with that!  You can’t take too many steps at once, or you tend to shuffle and fall.  Big, energetic movements are what it takes to make it through trying days.

Days and nights have rhythm.  The trick is just to figure out your optimum tempo and meter.  Is your dance a waltz or a two-step?  No matter.  It’s your dance, so dance like no one is watching.

Sometimes there is a gap in the musical flow.  The feet may be still, but the music still plays.  Pauses are important.  Breathe when you must, but keep singing!

Mortal life is temporal, finite.  Spiritual life is immortal.  We are on a journey, you and I, and the journey of life goes much smoother with companions.  When times are hard, stop to rest, get a drink to quench your thirst, but keep walking.

I am a Pisces, so I guess that might explain why I love the ocean so much.  The water, the salt, and the breeze cleanses the soul as well as the body.  Float a while, but keep swimming!

Good company in a journey makes the way seem shorter. — Izaak Walton