advice

Staying in Focus: A Bump in the Night

Sorry I have been remiss in writing this blog over the past few days but I have a good excuse. You see, I ran into a wall. Literally. I have always prided myself in being in control of my actions. I do not drink or use drugs other than those prescribed by my doctors. Therein lies the problem. Since my diagnosis of Parkinson’s disease in 2007, I have taken a drug called Mirapex. It helps to control my tremor.  However, one of its side effects is abnormal dreams. For the most part I have tolerated this side effect. My dreams are like watching or being in a movie, vivid and very real to me while I sleep. One of the first things I noticed, or I should say, my husband noticed, was that I would talk out loud on occasion. He couldn’t make out what i was saying, so he called it my “talking in tongues”. The odd thing is. I knew when this was happening because in the dream, I would be trying to shout at someone, or warn them of danger, and my voice would be very weak, no matter how loud I would try to be. I couldn’t speak in the dream because my voice was speaking out in he real world. I never woke up from these dreams with my heart pounding as from a nightmare. but often remembered them in the morning.

The next step was waking up to realize I had just hurled a pillow across the room, or being awakened by my husband because I was clutching his arm. I decided to nix the dose of Mirapex I took at bedtime  to see if that helped and the dreams diminished in intensity until last Saturday at 5:30 in the morning. I was very threatened in the dream I was having, and frantic to escape this man swinging a hook on a fish line at me, drawing closer and closer to my face. Still asleep, I must have  gotten out of bed  and charged across the room The next thing I knew my husband was shouting my name and running toward me. I had hit the corner edge of a wall in our bedroom, then fallen to the floor. It took a few seconds to orient myself and I put my hand to my face and felt blood. Bill helped me up, We turned on the light and I could see that I had hit my nose and the area over my left eye as the blood was coming from a mark on the bridge of my nose and the area above my eye was swelling.

Of course, this happened on a weekend, as usual. I felt okay – no headache, my pupils looked fine, no nausea and dizziness and I didn’t feel like hanging out in the ER for hours, so I just kept ice on the area, along with Vaseline, which i had read boxers use to reduce swelling. I spoke to the doctor on call for my neurologist and she reduced the dosage  a little more until I could see my doctor. Of course, I got a shiner of a black eye from the encounter with the wall, but more than that I was afraid to go to sleep on the chance it might happen again.  A friend suggested I get one of those body pillows to make it harder to  get out of bed in my sleep. I bought one and a cover for it, and pushed books in the bottom to make it heavy. That and 2 large bolster pillows on top make a nice fortress and I wedge myself between that and my husband, hoping he’d feel me trying to get out of bed. We have  a king size bed with a tempurpedic mattress, so unless we are close , one of us can get out of bed without disturbing the other one at all.

I saw my doctor and we are in the process of discontinuing the Mriapex. According to my doctor, when PD patients reach their sixties,  they no longer can tolerate the MIrapex. I had read that taking clonazepam before bed  can also help, as the dreams  are not solely caused by the Mirapex, but exacerbated by it. The tendency toward these dreams is a part of the Parkinson’s disease itself. Since I am already taking clonazepam, I now split the pill in half and take half in the AM and half before bed. Since making these changes, along with meditating a while before falling asleep, I have had fewer dreams  and  sleep through the night. I’ll just have to see how much tremor I have once off the Mirapex  and how I handle my anxiety splitting the clonazepam in half.

It is  a scary thing to have your conscious mind disconnected from your body. . In REM sleep, which is when we  dream, our bodies are paralyzed temporarily by something in our brains. This keeps us from doing what I did. In Pd patients and people with REM behavior disorder, this malfunctions, allowing the dream state to take control. I intend to research this  phenomenon further,

I hope by posting this, I can help other PD patients avoid what happened to me.In the meantime , I hope the doctors find a way to control this, so I can avoid going bump in the night ever again..

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Focus On: Smiles

    a smile is a special gift
   to share with one another
   to do so gives your day a lift
   and makes the world look kinder
   when you see your smile reflected
  on the faces of people passing by
  you’ll know they’ve been infected
  by the twinkle in their eye
  and the smiles swiftly spread
 to others through the day
 and all because you had one
 to kindly give away
          – pc 2012

The other day, while going through some photographs, I spied one of my grandson that I just adore.  And although I think he is  the cutest little boy in the world, it’s his smile that captivates me in this picture.

And I thought about how easily children share their smiles with others, and in doing so, brighten up our day.  Just because we are grown-ups now and busy doing serious things, doesn’t mean we can’t take the time to share a smile with someone we encounter as we dash about.  And smiling is infectious.  When a person passing  by flashes you a big smile, it’s difficult not to return in kind. I’m a lucky one.  Between Evelyn and Gavin, I’m surrounded by smiles that light up their faces whenever they see me.  Talk about the power of a smile.  Nothing finer!

My mother is a great example of this.  She has weathered her share of difficult times in her 89 years of life, but she is always has a smile on her face when she greets other people and everyone she meets  is immediately taken with her.  I think a big part of this is her friendly personality, and a big part of that is her smile.  It makes people feel good to be around people with a smile on their face.

This brings to mind my favorite scene in the movie City Slickers.  Billy Crystal plays the role of a man somewhat dissatisfied with his life.  His pals give him a birthday trip to herd cattle at a ranch out west.  His wife, aware of his state of mind, encourages him to go.  Needless to say, all three of the pals experience revelations about their lives as they face  many challenges.  But when Billy Crystal arrives home, and his wife greets him at the airport he says, pointing to his smile, “Look what I found.”  She asks, “Where was it?” And he replies,”In Colorado.  It’s always in the last place you look.” Funny, but so true.  Sometimes we simply don’t know where or when we lost our smile, but there are ways to find it.

If you come to a point in your life when you cannot muster a smile, you have work to do.  Meditation can help this, as Thich Nhat Hanh, Buddhist teacher and author, writes in his book, Peace is Every Step. Meditation can help, for the source of a true smile is an awakened mind. Meditation  can help us deal with matters that may be the cause of our unhappiness. Thich Nhat Hanh suggests  we practice smiling by doing so when we first wake up in the morning.  A smile, he writes, affirms our awareness and determination to live in peace and joy.  Let the singing of the birds or the slant of sunlight streaming through your window remind you to smile.

Marion Tripp,  a friend of Thich Nhat Hanh, wrote “The Dandelion Poem”, which he includes in his book, Peace is Every Step:

I have lost my smile,
but don’t worry.
The dandelion has it

As long as you can recognize that your smile is somewhere, all is not lost .Open yourself to the help and support of those around you and your smile will return.

Once you have it safely in place on your face, share it with others, and watch the happiness you spread grow and infect the rest of the world.  Who knows, maybe something as simple a s a smile can save us all. At the very least, it can save me and you!

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Focus on Inspiration and Hope

So much to be grateful for these days. I met with my oncologist this week, and nearly five years out now, everything looks clear.  The chances for a recurrence go way down at the five-year mark, so all is good on that front!

I was diagnosed with Parkinson’s about five years ago as well, and have for most of that time been on a dopamine agonist drug, which imitates and supplements the lost dopamine  in the brain.  But about 6 months ago, I began to notice that movement was really becoming a challenge .  Walking actually became a chore, something I had to work at and concentrate on.  I would see people strolling along, or jogging by on the road and wistfully remember when I could do that without a second  thought.  And  I wished I had been more grateful then for that gift.  The following poem reflects that thought. When I saw my neurologist two months ago, we decided it was time for me to start taking Sinemet, the gold standard drug for Parkinson’s.   It actually replaces the lost dopamine, but not without a price.  A little too enthusiastic about its job, after prolonged use, it causes excess movement called dyskenesia: rapid or jerky,uncontrollable movements, fidgeting and the like.  Thus the reason not to use it too soon.

But it makes a world of difference.  My natural arm swing has returned, I can walk more easily.  In my exercises, I can move faster and do things I  haven’t been able to do for years.  My husband and I took a walk this weekend and I actually enjoyed it.  We even  interspersed some intervals of jogging into our walk.  I don’t know how long this gift will last, but I’m going to make the best of it while it does.  I know the clock is ticking in regards to the side effects, but there is hope ahead.  Researchers are working on ways to address this and my hope is that they will  do so before I run out of time.

And now to the Inspiration part of this essay.  Whenever someone is given a diagnosis of a disease or chronic condition, it is so helpful to have someone to look to for inspiration.   For me that would be Michael J. Fox.  We’re all aware of Michael and his dedication toward  finding a cure for Parkinson’s disease, which he has had for 20 years.  Admitting he has bad days too, he prefers, however, to focus on the positive.  Founding the Michael J. Fox Foundation for Parkinson’s Research he has worked continuously to speed the race for a cure.   I believe if a cure is found in our lifetime, a big slice of the credit goes to Michael’s efforts to get researchers to share ideas, to get people to volunteer for clinical trials, to get congress behind the drive for funding this important work.  And he still finds time to act as well.   He was recently named  person of the week by ABC News. Go, Michael!

With so many dedicated scientists, researchers, clinicians and doctors working on this , I am very hopeful we will succeed.

For those looking for inspiration, I urge you to read Michael’s books.  Even the titles reflect his upbeat attitude: Lucky Man,  Always Looking Up: The Adventures of an Incurable Optimist and Something Funny Happened on the Way to the Future: Twists and Turns and Lessons Learned.  Written with humor and honesty, they will inspire.

And although, with 2 left feet, I  was never destined to win the mirror ball trophy, for now I can spin and twirl with my grandchildren, and that is  good enough for me. And the next time you take a walk, remember to be grateful that you can.

Belated Wishes

I wish that I had learned to dance
to glide with grace
my feet in place
I wish that I had learned to dance

(long ago I had the chance)

I wish that  I could really sing
notes as pure
as birds in spring
to be in tune with everything

(I would have loved to sing)

I wish that I could walk with ease
to amble or stride
as light as the breeze
and never worry my feet might freeze

(I wish I could walk with ease)

moving is a challenge now
count your steps
heel to toe
moving is a challenge

(though it wasn’t always so)

I should have taken time
to learn to dance and sing
to appreciate a morning walk
in tune with everything

(when I had the chance
I should have learned to dance)
— pc 2011

Pictures in Poems, Poems in Pictures

There are pictures in poems and poems in pictures
— Chinese Proverb

My interest in photography began when I received my first camera, a Kodak Brownie, when I was still in elementary school.  My interest in poetry began first with reading poems, then later writing my own.   As a child I enjoyed the poems of Robert Louis Stephenson,

One of my first photos. Christmas 1964. I had a little trouble fitting everyone in the frame!

especially My Shadow, and  those of A.A. Milne : Forgiven, Spring Morning and The End.  I  Wandered Lonely as a Cloud by William Wordsworth, Stopping By Woods on a Snowy Evening by Robert Frost, and the poems of Emily Dickinson and Sara Teasdale remain favorites today.  And Trees by Joyce Kilmer was the first poem I ever memorized.

I suppose I am a woman out of time as I prefer rhymed verse to free verse, which is more popular now.  I have written some free verse, but most often my muse comes to me in rhyme and as to where the muse comes from remains a mystery to me, I question it not, and write as I am instructed!  I think what draws me to both poetry and photography is the opportunity to paint a picture of my world, be it with words or with the lens of my camera..  And they work so well together!  Sometimes I take a picture that inspires a poem, other times I’ve written a poem and looking through my viewfinder, see the poem reflected in the image in the frame.  In this case, the picture preceded the poem:

Harbor Sunset

liquid drops of sunlight
sparkle in the bay
and reflect a sky awash in sunset hue
the trees along the shoreline
form a silhouette in gray
and the clouds amass in shades of dusky blue
suspended for the moment
between darkness and the day
I pause to fill my senses and renew
and with deep appreciation
I continue on my way
as the sunset in the harbor fades from view.

Poetry and photography are my “go – to” coping tools.  I can lose myself  for hours  composing a poem  or in trying to get the best exposure for a picture. and worries and concerns just drift away. Best of all,  both of them can be done outside, sitting in a pretty park or while hiking in the mountains..  Back at home I use the pictures and poems in greeting cards, scrapbooks and journals.  I’ve made beautiful books on http://www.snapfish.com

On a more personal level, I explore my feelings and improve my state of mind by writing poems reflecting my journey with Parkinson’s Disease.  Somehow, writing both prose and poetry help to transfer the fears and concerns from me to the paper.  I gladly let it absorb  the worries, and help me to stay in focus on more important things. ( More about this in my next post.)

So grab a notebook, pen and a camera and have some fun!

If you’ve haven’t explored writing poetry yet, here are a few helpful guides:

The Poetry Home Repair Manual by Ted Kooser
How to Write Poetry  published by Spark Publishing (www.sparknotes.com)
Word Painting by Rebecca McClanahan
The Describer’s Dictionary by David Grambs

For photography I recommend taking a class at a local community college.  It’s the best way to learn how to use your camera, especially if you are venturing into using a digital SLR. for the first time. All the buttons and knobs and settings on these cameras can be overwhelming.

Plants, Prose, Photos and Poems

As I was digging happily in my little tree garden (flowers planted around the tree in our front yard,) I realized that I should have added plants to my list of coping tools, along with prose, photos and poems. There is nothing more healing than working in a garden on a lovely spring evening.  Photographing them and writing the poems they inspire can lift the spirit as well.

One can work out a lot of frustrations in digging  a nice big hole for a plant.  The act of placing it in the rich earth, filling in the hole and adding some fertilizer can induce a meditative state — a feeling of being at peace with the earth and building a connection with nature and all living things.

 Pruning the plants, keeping them full and green and removing spent blossoms is much like unloading the leftover bits and pieces of hurt feelings, arguments and disappointments many of us carry with us – these only serve to weigh us down  and keep us from feeling the lightness of a healthier state.  I know i would much prefer to look like a full, green and glossy plant, then a drooping, spindly one barely able to hold up its head. A healthy plant looks up at the sky, is nurtured by the sun and washed by the rain.  A healthy plant is a joy to look at and flowers are the stars of plantdom. I especially like pansies.  Their delicate faces light up in so many wondrous colors!

So take some time to dig in a garden, or even a large pot.  Plant some pansies. You’ll smile back when you catch them smiling at you.