Parkinson’s disease

Saying in Focus: It’s Never to Late to Learn

 

img_6923

Once more I must apologize for falling behind in posting to my blog. I had envisioned my retirement as a nice, leisurely time of life, maybe even having too much time on my hands, but that hasn’t been the case.

I have been able to slow down the progression of my pd  (parkinson’s disease) by keeping abreast of the latest developments and guidance from doctors and physical therapists and implementing them in my daily life.  Exercise of all kinds seems to be one of the most helpful tools, but it does take up time. Recently,  I happened on a website called http://www.invigoratept.com founded by Sarah King, a physical therapist. There is a wealth of information about exercise and nutrition on this site and I have joined Sarah in her challenge to exercise daily, for at least 2.5 hour a week. Today we begin week 3 of the 4 week challenge. She is also doing a series of live videos through her Invigorate Physical Therapy and Wellness Facebook page about nutrition and how what we eat affects pd. I’ve found her links to You Tube video sites of exercises developed specifically for pwp (people with parkinson’s) most helpful.

But physical exercise is only part of the picture. The brain must be exercised as well. My husband, Bill, and son, Steve, and I are into crossword puzzles and word games on our electronic devices, which help me slow down the ‘loss of words’ associated with pd.

I had never mastered Algebra in high school, so I purchased a book entitled “No Fear Algebra”and can actually say it is beginning to make some sense to me. Working out simple equations is like solving a puzzle.

I have always wanted to be able to draw, but was always too intimidated to take a class with other people. But I recently received one of the Great Courses videos – a gift from my husband – on “How to Draw”. This is perfect for me because I can pause the video as often as needed and I don’t have to rush or try to keep up with others. So far I have learned much about line and shape, aggregate shape, volume, figure-ground and positive – negative shape. There are thirty-six lectures with accompanying  lessons so it may be years before I finish.

Finally, throw in my interest in photography, poetry (see previous post for my latest) and reading, and that’s where the time goes. In a sense, having pd has determined the way my retirement will unfold, but if one has to combat a disease, why not learn a little something during the process? After all, it’s never too late to learn.

Staying in Focus: Are You Ready to MOVE!!!

IMG_2958

This year the National Parkinson Foundation fundraiser, Moving Day Triangle, falls on October 31st! My team, Pat’s Patrol, is quickly assembling for the big event – our team should number between 16 and 20. We’re hoping for a real nice day weather-wise, since last year it was cold and rainy, but come what may, we plan to have a good time! Some special spooky events include costume contests, pumpkin decorating, dancing to the “Moving Day Mash”, and trick or treating in the Resource Pavilion. To join my team, use link below.

This is a special day for those of us who deal with, or care for someone who deals with this disease every day.The research scientists and doctors are getting closer and closer to figuring out a cure and every bit of support is a crystal of hope to those of us who fight to keep moving until a cure is found.  60,000 Americans every year join the million already diagnosed, which means that at some time, many of us will know someone who is, or will be, diagnosed, or become a caregiver of a loved one with PD. If you would like to make a donation, it only takes a few minutes, a few minutes that can impact over a million lives Here’s the link :

http://www3.parkinson.org/site/TR/MovingDayEvent/NPFHQ?px=1089647&pg=personal&fr_id=206

Some photos of last year:

IMG_2964 IMG_4136 IMG_4116 IMG_4113 IMG_4118 IMG_4109IMG_4112IMG_4119
IMG_2985c
IMG_2981

Staying in Focus: Daily Prompt: Sweet Dreams (Are Made of This) or Going Bump in the Night

Daily Prompt:What is the best dream you’ve ever had? Recount it for us in all its ethereal glory. If no dream stands out in your memory, recount your worst nightmare. Leave no frightening detail out.

IMG_8359Oh, you just had to get me started on dreams! The best dream I have is one in which I jump really high and find that I can keep myself aloft, for a few minutes, almost flying, but  not quite as effortlessly as soaring through the air. There is a feeling of lightness and freedom accompanying the dream.  Mostly, though, good dreams seem to disappear from my memory almost immediately. Holding on to them is like trying to grasp a wisp of fog in the palm of my hand.

The nightmares, however, can stay with me for a lifetime.  For years I had two recurring nightmares. In one of them I would look up at the sky and see row after row of enemy aircraft flying low overhead, accompanied by feelings of fear and dread. These could be a result of growing up during the cold war and the Cuban missile crisis, which sent us cowering under our desks during air raid drills at school, praying that the flimsy desktop would protect us from nuclear annihilation. 

In the second recurring dream, I was climbing a steep path in a cavern, and I knew something evil lurked at the end, but could not stop myself from moving toward it. Never quite got there, though. Did I fear something waiting to befall me, or fear releasing something evil inside me? Possibly a result of my Catholic upbringing and the fear of the devil’s temptations.

When most people dream, which is during REM sleep, their bodies are actually paralyzed from moving because these dreams are so vivid that without this, one can act out the dreams in reality. Such is the fate of many of us with Parkinson’s disease and REM sleep disorders. Thus, I have bad dreams that are so vivid, I thrash about, talk in my sleep (an interesting aside for any psychologists reading this and trying to figure me out, when I try to talk in the dream, my voice is very low, I can barely be heard. This occurs when I am actually talking out loud in the real world), wake up screaming, or the worst one, when I jumped out of bed, still asleep, and only woke up as I  felt myself falling and my husband calling to me. I had crashed into the corner of the wall in my bedroom, ending up with a black eye and a bloody nose. In my dream, I was walking with friends down a dark road, and coming toward us was a man swinging a sharp hook at the end of rope in a menacing fashion. We panicked and tried to run away as fast as we could. They made it safely away. I hit a wall.

This incident changed my sleeping life forever. REM sleep disorders or lucid dreaming are related to Parkinson’s disease itself, but can be intensified by some of the meds I take. I discontinued the dopamine agonist medicine I was taking, which helps with my tremor, as soon as I could. Coming off that med was no picnic in the park. Fortunately, my bedroom is on the first floor, so the danger of falling down stairs was not a concern. I bought a body sized pillow, weighted it down with books and now I sleep wedged in between the pillow (I have named Dudley) and my husband. I figure I would wake up by the time I was able to extricate myself from my snug little nest.

In addition, I did some research and found out that another med I was taking for anxiety was the treatment of choice for this sleep problem.  So I consulted with my doctors, and we changed the times I take the meds to just before med.Then I bought a couple of sleep solution cds, one called Sleep Solutions by Roberta Shapiro and Deep Sleep Every Night by Glenn Harrold. I listen to one of the tracks on the cds every night before bed. They assure me I can control my dreams. My mantra is “silent, still, sleep.”

This, together with a spritz of lavender on my pillow, and my dream catcher hanging by my bed has makes it possible for me to dream mostly benign dreams. If I have a bad dream, I wake up like normal people do.  I guess the enemy planes and whatever was lurking in that cave have been relegated to the “nightmares remembered only” ´file in my brain. My husband tells me I often laugh out loud in my sleep now, Sure beats going bump in the night.

 

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..

Daily Prompt: Seasonal Scents: Staying in Focus: Scents of Summers Past

  Daily Prompt: S’mores, salty ocean breezes, veggie burgers on the grill, sweaty people on the bus — what’s the smell you associate the most with summer?

 

Staying in Focus: Free Writing for Writing 101

 

This is my 20 minutes of free writing for Writing 101. Please excuse any grammatical errors.

I saw my neurologist today. He put me through my paces and I like a well-trained dog did my best –cross  arms in front of chest and stand up, take a walk down the hall back, touch fingers to fingers, open and close the hands real fast, shrug shoulders, grin real big, squeeze his hands. And while he checks reflexes, the questions, this time are: what day is it? what are the names of the streets outside? what is the governor ‘s name? Bingo, 100% on that one.  Then we discuss the progression of the illness. He notices a slight movement that could be the start of dyskenisia, but a new drug is due out by years end to address this, oh joy, another chemical to put in my body when I get up in the morning. Good news is that Azelect will become generic soon. I really hate taking all these pills but I know I have no choice if I want to keep moving. The alarm goes off  at 6:00 am for the thyroid meds and then at 7:30 for the first dose of carbidopa/levodopa and Mirapex for the Parkinson’s , toprol for high blood pressure, clonazepam for anxiety; at 3:0 0 another dose of the carbidopa/levodopa combo again, and the Mirapex and Azelect. And then at 11:00 the third doses of the dopas and Mirapex, plus an aspirin to deter the return of colon cancer. In between I fit in 4 fish oil capsules, vitamin D, folic acid and a multi-vitamin. They are a necessary evil that keeps me moving and hopefully is slowing down the disease. We discuss some difficulty in recalling words now and then and this is most upsetting because I am a wordsmith. They are my connection to the world. I show him a copy of my book and he is quite impressed. He asks if I plan to write more. Already have, I say to him. To myself I add, Loss of language, of words and communication is the worst thing Parkinson’s can do to me. But overall, I am doing above average he says. Keep up the exercise- he believes this has helped immeasurably in slowing the PD down. He asks about any uncontrollable impulses like gambling or over spending. No, I say. There’s just one place that behavior might  be evident – on WordPress where I post my blogs…

Staying in Focus:Daily Prompt: Let’s Dance

Daily Prompt: Let’s Dance:In my earliest memories of dancing, I’m under my auntie Nancy’s dining room table, (which had been pushed off to the side of the room), watching my mom, dad, aunties, and uncles all dancing on the hardwood floor to a never-ending stack of 45 records, dropping one after the other. I remember foot-high stacks of 45s all around the record player. The song that I remember playing most? Twistin’ the Night Away by Sam Cooke. Every time I hear that song, I remember auntie’s spontaneous dance parties. What are your earliest and fondest memories of dance?

Sadly, I have no fond memories of dancing from a personal perspective. I have absolutely no sense of rhythm and my mother’s sincere attempt to help me by enrolling me in dance lessons lasted about one lesson. I suppose my earliest exposure to dance was watching the various animated characters waltz and twirl their way across the movie screen in Disney films.  A little later, I was an avid fan of American Bandstand, enjoying the music and the gyrations of people in tune with it.

I love music in many forms from classical to rock, folk to pop.  I was 7 years old in 1960, 11 when the Beatles made their Ed Sullivan début, a time when music and dance wove their way into the tapestry of our lives.  Everybody wanted to be in a band.  We all had ‘nine transistor’ radios. We all knew the top ten hits and grooved with Cousin Brucie.

However, school dances were fraught with anxiety. I wanted to attend, to hear the music and participate  in high school activities, but the thought of trying to dance in front of others filled me with fear.

I tried dancercise with a friend once. I was going left when they were going right and I never did figure out that grapevine step. I know the instructor was relieved when I failed to return, because I messed up her choreography.

My lack of rhythm with dance and music accompanied my inability to sing, as well.  I attended a Catholic school and every morning before school started, we were required to attend Mass. One day, in fourth grade, I think, we attended Mass in the choir loft with the church choir director playing the organ.  She was on the lookout for new voices for her choir. I employed my usual strategy of just mouthing the words, without sound. She wasn’t fooled, however, and brought me down next to the organ so she could hear me sing.  She asked me if I were an Alto or a Soprano. You tell me, you’re the one with the, organ and sheets of music in front of you, I wanted to say, but I just shrugged my shoulders. She listened to me sing the next song and obviously couldn’t figure out what I was, either, because she promptly returned me to my seat, and never asked me to sing again. I was happy though; relieved I didn’t have to pretend to sing anymore. Instead, the nuns assigned me to leave the choir early and go down to the teacher’s lounge and put on a kettle of water for their morning tea.

It’s just as well I decided early on not to pursue a career in the performing arts.  There’s not a lot of need for a tone-deaf singer/dancer with two left feet and Parkinson’s disease!

I did not despair, however. I can exercise to the “Oldies” with panache, stretch and meditate to new age music as I do my yoga and tai chi practices and pedal my exercise bike to hundreds of songs on my iPod. Music and movement are in my life, just not in the form of dance.

We each have our own special gifts. Some people can dance and sing, some people, like me, enjoy writing and photography.  I am most grateful for my special gifts. Speaking of which, I have finished the manuscript of my book and am getting ready to upload it. (See my Focus on Fiction Blog for the latest updates and a sneak peek at Chapter 2 ). patcoyle76.@wordpress.com

Once I received my Parkinson’s diagnosis, I realized there was no going back for certain things – like dancing, and that there was a time to let go of others like tennis and driving. To every season, there is a purpose and mine now is to enjoy the gifts I’ve been given for as long as I can. Still, one can wish…

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

and go everywhere I please

(and never worry my feet might freeze)

Moving now is a challenge, though

Count your steps

Heel to toe

Moving is a challenge

(though it wasn’t always so)

and when I had the chance

I wish I’d learned to dance.

-pc2009

Daily Prompt: Staying in Focus: I Am Still Me

Daily Prompt:  I am a Rock. Is it easy for you to ask for help when you need it, or do you prefer to rely only on yourself? Why?

I tend to rely on myself and really avoid asking for help.  One of the things I was most afraid of in telling people that I had Parkinson’s disease, was that it would change the way they were with me. I didn’t want them to see the disease and not see me anymore. I didn’t want anyone feeling sorry for me, or assuming I couldn’t do certain things while I still can.

Aside from taking my pills and exercise I tend not to think about the PD much at all. The day may very well come along when I no longer can ignore it, but no sense dwelling on that now. It’s a waste of the present to worry about the future.

I’ve never wanted to be the center of attention for any reason, preferring to work on the sidelines, stand in the shadows and plow my way through whatever awaits beyond the curve up ahead. Instead of focusing on what I can’t do, I focus on what I can do, and let the rest unfold as it will. One way that I help myself is by supporting the researchers working to find a cure for all people dealing with chronic and degenerative diseases. Supporting this research can give friends and family a direction for getting involved, and dispels the awkward, “I’m so sorry, what can I do?” moments.

My husband and I did a5K ‘on deck for the cure’ walk aboard the Caribbean Princess while on a cruise. This walk I did in honor of my mom and friend, Debbi, both fighting breast cancer. There are walks and runs for just about every disease researchers are working on.

As most of you probably know, The Michael J. Fox Foundation has helped to fund researchers working for a PD cure. Michael is returning to TV this fall on NBC, September 26 at 9:00. He will portray a man with Parkinson’s disease, who is returning to work after 20 years. (A perfect example of art imitating life).The members of Team Fox are asking people to sign up and host premier parties to support Michael and spread the word about PD research. 1,855 people have already signed up to host the premier parties. If you are interested check out:

http://www2.michaeljfox.org/site/PageNavigator/ThinkAble_PremiereParty.

They provide ideas for your party and it will help spread the word about PD and the current research being conducted. So if you know someone who has PD and need a way to show your support here’s one idea you might find both fun and supportive.

Everyone needs compassion, sooner or later. The truth is that we must learn to handle the cards we are dealt, but that is not to say supportive people in our lives cannot walk beside us. Just keep in mind the disease is only a part of a person. It hasn’t changed his hopes and dreams or her need to continue living a life as normal as possible for as long as she can.  And don’t worry. The Simon and Garfunkel song may say “a rock feels no pain, and an island never cries.”  But people do. And you’ll know when to ease their pain and cry with them. Until then, just be their friend.

Staying in Focus: Focus On: Favorite Shoes

Recently, one of the daily prompts was “My Favorite Shoes”.  Distracted by the flurry of visitors  we’ve had this past week, I didn’t get a chance to post this. But after helping friends to move in and shopping with family this week, I feel my favorite shoes deserve some recognition.

My favorite shoes are a pair of Keds sneakers. In fact, I am on my third pair of them. They are great for walking, never pinch my toes, and provide good support, all of which are needed by someone who loves to walk despite having Parkinson’s disease.

These sneakers have taken me for walks on the decks of two cruise ships, on a walking tour of London, along the Giant’s Causeway in Scotland, through the streets of Juneau, Sitka and Ketchikan, Alaska. They have walked in the footsteps of the Beatles, toured the Louvre, ambled along the streets of the beautiful city of Victoria, Canada, and stood on the same ground as Stonehenge has for 5000 years.

Together we climbed the steep hill to the entrance of Edinburgh Castle, Scotland, strolled on the cobblestone streets of St. Peter Port, Guernsey and completed a 5k walk “on deck for the cure” aboard the Caribbean Princess, while at sea.  IMG_2116

My Keds and I have walked up and down hundreds of steps this week helping friends move into their third floor apartment. We have shopped the malls of Raleigh with my buddies, Pat and Becky, during their annual visit. We have walked over bridges and under trees, across fields and along the road.  We have tip-toed over the dew-kissed grass of morning and left shoeprints in the shifting sands of the shore.

There is nothing like a well-worn, well used, favorite pair of shoes sitting on the closet floor, waiting to take me on the next adventure.  But most of all, my favorite shoes are those that bring me home.

 

Staying in Focus: Daily Prompt: On the Edge: Use It or Lose It

 Daily Prompt: On the Edge – We all have things we need to do to keep on an even keel — blogging, exercising, reading, cooking. What’s yours?

Use It or Lose It

I’ve learned a lot during my six-year journey with Parkinson’s disease, especially how important it is to exercise – the body, the mind and the spirit. Keeping these three aspects challenged, keep me on an even keel. Daily physical exercise is vital if I plan to move at all. I usually do a few stretches right in bed  before I get up. I take my medication around 7:30 and by 8:00 I am ready to move. I alternate exercises because I get bored with them after a while.Some days  I use a motorized peddler, striving to keep my revolutions per minute at 85 to 90  I alternate this with the Leslie Sansone Walk at Home program on DVDs . I like these because  a strong musical beat helps me to keep my steps at a steady pace. The DVDs present a variety of walking sessions, from 1 to 5 miles. I enjoy doing these programs because I can pick the length of a program, walk whether it is cold, hot, raining or snowing.  I also do not have to worry about tripping over uneven pavement. The climate is always just right. I follow my aerobics with either a session of yoga for flexibility or tai chi for balance; on the smaller scale, hobbies like painting, cross stitch and jewelry making keep my fingers nimble.

To exercise my brain, I write for my blogs, write poetry, do Sudoku and crossword puzzles, and am trying to conquer my old nemesis, algebra. I really enjoy online classes which I take through the Ed2Go program at my local community college. I haven taken  courses on using Photoshop Elements, Travel Photography, Pleasures of Poetry, Writing your Memoir, Making Money from your Writing and I am beginning a  Writing for Children course now. I really enjoy the exchange  with classmates through the forums and  I find the teachers excellent. I am also writing a  scrapbook style memoir and revising the first draft of a children’s book.  And I musn’t forget photography. I exercise my spirit#ith  meditation, collecting positive quotes and reading books of poetry.  I have  a scrapbook which chronicles my journey with PD. I fill it with poems, quotes and journal entries. Below  is a page from my book of collected quotes and my PD Journal. I have  a schedule that alternates these activities so I never get bored. I certainly don’t do all of them everyday.  I’m sure to leave time for outings with my buddies. This year we’ve gone to museums and movies,  a Lemur sanctuary, the farmer’s market, walks around lakes and “treasure hunting ” where I found  a perfect little  desk for my snuggery (my all-purpose writing/painting/reading/creating room.) My husband and I just returned from  a cruise around the British Isles. We went on

quotebook excursions every day, and I am proud to have completed a 5K walk the deck for the cure while we were at sea. It’s important to keep in contact with friends and family to keep you on an even keel. There i so much I want to do, I IMG_0001_NEW refuse to let the PD rob me  of the opportunity. Right now the morning sun is shining through my window. I have  a whole day ahead of me, and plenty of creative ways to fill  it.

IMG_0438

my treasure; my new desk

What it all come sdown to in the end is use it or lose it, and losing it is not an First of all, sten/option for me.IMG_0428 IMG_0425 IMG_0429