Parkinson’s Disease

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

 

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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.

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

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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:

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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: MOVING DAY/TRIANGLE: A WALK FOR PARKINSON’S DISEASE

PAT’S PATROL

 

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We had our Moving Day event for Parkinson’s disease. It had been warm and sunny prior to the event , but November 1st dawned cold, windy and rainy. It didn’t dim  our spirits, though, and we all had  a great time. My team, Pat’s Patrol raised $900.00 and overall the event raised $177,000.  I was amazed at how many people were willing to walk in the cold, drizzly morning to show their support for us, and how many people with PD  were out there, too, choosing to be a part of the process, helping themselves and others as well. As they said in the opening ceremony, PD is not  a disease, it’s, a challenge, and there were plenty of us  at that event, rising to meet the challenge. My thanks to my valiant team and generous supporters.  Working together we will keep moving toward a cure. There are several possibilities on the horizon to at least slow the progression of the disease (a vaccine) or a better delivery system for levodopa which may prevent the development of dyskinesia. So we cling to hope, and keep moving!

Here are some pictures of the event:

PRE-WALK BREAKFAST  at my house:

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VENDOR AREA: FACE PAINTING,

INFORMATION, FREE STUFF, HOT COFFEE!

 

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OPENING CEREMONY:

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WE MOVE:

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WE CROSS THE FINISH LINE!

Staying in Focus: In Transition

I had been tooling along for quite some time with my Parkinson’s treatments working pretty well, keeping me functioning and moving well enough to allow me to ignore the role this disease was  playing in my life for the most part. That bump in the night I had a few weeks back was  a wake up call in more ways than one.

I am still feeling the effects of coming off the Mirapex, 7 days now, and still having these massive hot flashes that turn my face red and the sweat just pours off me. Today I took a long cold shower. It felt like heaven to be free of those hot flashes, if only for a little while. My neurologist is tweaking my other meds a bit to compensate, but I am not moving as well as I had been. So I have upped my time on my exercise cycler to see if that helps. Our Moving Day NC Triangle event, a fundraiser for the National Parkinson Foundation is on Nov 1st and I am determined to make the walk.

Our team, Pat’s Patrol, has raised over $600.00 so far, and I am grateful to, and proud of everyone who has contributed to our efforts. Our team shirts arrived today, so I’ll be distributing them to the team, and we’ll be ready to go on November 1st! I have 14 friends and family members walking with me, including my two grandchildren, Evelyn (8) and Gavin (5). They were here when the shirts arrived today and were so excited to get them. Events like these not only raise money for research and programs, they give friends and family the opportunity to show their support for those of us with PD, and give us the chance to take an active role in doing something to help ourselves and play an active role in the search for a cure.  I’ll be taking lots of pictures to share with you.

Anyone interested in joining in or donating can find info at:

http://www3.parkinson.org/site/TR?fr_id=1750&pg=entry

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Staying In Focus: Weekly Writing Challenge: Build Your Own: Envision

 

Daily Post:Weekly Writing Challenge: Build You Own:  Choose  a place:  scenic countryside

Choose a first line:  In my dreams I envision a place.

 

During my cruise around the British Isles last year we took bus rides out into the countryside of Ireland, Scotland and England. These photos and your prompts come together in the following poem:

 

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Envision

In my dreams I envision a place

A village nestled in the countryside

Far removed from the rush about pace

Of everyday life.

I sit in my garden, sipping my tea

And the villagers nod as they pass

Some stop by to chat with me

On happenings, this and that

The summer days are slow and warm

The sheep graze on the hill

And if this was the place where I was born

I know I’d be there still.

– pc 2014

A recent daily prompt was to imagine building a  magic tunnel. Where would it lead to? I didn’t finish it because  the appliances in my house, specifically the air conditioner and the freezer both bit the dust on the same day and thre us for a loop. The topic, however, meshed nicely with the  writing challenge.

Of Hedgerows and Tea

Another outcome of my cruise around the British Isles last summer is that  I know exactly where my tunnel will lead. It will lead directly to a small English village located in the pastoral countryside, but not too far from London. This quiet little village will be my refuge from the complications and stresses of everyday life. It will be where I go to rest, to write, to find my muse and refuel my imagination. Once this is achieved, having London nearby will provide for cultural and leisure activities. It’s not far from South Hampton where the magic cruise ships await to whisk us off to see the world.

I plan to have many good years there, but the inevitable will eventually happen and my cottage in the village will become my final.refuge. As I grow older my capabilities will decrease as the PD robs me of movement and other things too scary to contemplate at this point in my life.  So I will spend my remaining days in the garden, sipping tea and finding joy in just being.

However, as we have allowed for the possibility of a magic tunnel, the door  to  a cure for PD is open, we have all the money we need to live comfortably in our cottage , to take cruises whenever we are bitten by the travel bug, and we will live well past 100 healthy years. Now that is my kind of magic!

 

 

 

 

 

 

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: Worst Case Scenario: My Last Day

Daily Prompt: Of all the awful possibilities, what’s the worst possible thing that could happen to you today? Now, what about the best?

The worst thing that could happen to me today would be to find out this was the last day of my life. As I grow older, every day is a precious one, to be lived and enjoyed and celebrated, no matter if the sun shines or the rain falls or the cold winds blow. What would I do if I knew this was the last day to see the sunrise, or the ocean waves roll to shore, to listen to the song of the birds outside my window, or see the smiles on the faces of my grandchildren when they come to visit? My last day to hear the sound of my husband’s voice as we share conversation,  feel his gentle touch and taste his soft kisses?

Well, I would focus on the best thing to happen to me today, which would be to find out this was the last day of my life. For if it was, I would not squander a second. I would fill it, sunrise to sunset with as much life as I could squeeze into 24 hours. I would bask in the sunlight or dance in the rain. I’d play with my grandchildren at the edge of the sea. I’d walk with my husband, hand in hand, leaving footprints in the sand, which last for a mere moment before being washed away by time and tide.  As with those fading footprints, so, too, are the days of our lives. I’d finish my last day sitting on a mountain peak, watching the sun set in a swirl of lovely colors before the light fades away.

Sometimes, I think, because we do not know when our last day will be, we regard them carelessly, and treat them like they will last forever.  However, since  we do not know which day will be our last, we must live each one as if it were. Celebrate the sun’s rise each day, take time to hear the birdsong. Show family and friends we love them, with a phone call or a visit, take time to travel and expand our point of view.  We get so overwhelmed with the business of making a living, we forget to live. We focus on the negative and forget that every cloud has a silver lining. Looking for it takes some effort, but it enriches our lives to acknowledge the good things and disregard the bad.

Take Parkinson’s disease as an example. It was certainly a cloud on my horizon, but because of my early retirement, I’ve had time to do more writing, improve my photography, take courses over the Internet.  I know my mobility will continue to diminish, so we have taken a few cruises to places I never thought I would see in my lifetime, while I can still get around. We shouldn’t put off doing the things we enjoy; life is too short and unpredictable. We need to fill our days with as much joy as we can for as long as we can, because we have only so much time to  live and we must remember to live it well and make it last.

 

Staying In Focus: Daily Prompt: Luckiest People/Lucky Me, Loving You

Daily Prompt: The Luckiest People

Who was the first person you encountered today? Write about him or her

The first person I saw this morning was the same person I see first most mornings, my husband of 38 years, Bill. He is the lucky one who gets to see me with my hair sticking out from my head in one place, and mashed to my skull in another place. He gets to see me before I wash my face, brush my teeth and generally make myself presentable to the world.

However, since I get up, make him an egg breakfast a few mornings a week, and pack his each workday, he chooses to look past my frightful appearance and even kiss me goodbye before he leaves for work.

I consider myself one of the luckiest people, because I have married my best friend Photo39and soul mate and the nicest guy I know. He has stood by my side during the scariest moments in my life. He was there when I experienced complications following childbirth, when I woke up after having colon surgery to remove a cancerous polyp, and sat next to me as the neurologist confirmed the diagnosis of Parkinson’s disease. When I dragged my feet about seeing a neurologist, he wisely reminded me that not knowing would not change anything. If it was there, it was there and we would deal with whatever the future held.

When I stressed over a job situation I found intolerable, he bought me a video of music and whales (I have a thing for whales) to calm me, and took to me to the beach that weekend.

When I joked that the perfect Christmas would be to receive a roll top desk, a fur coat (fake), and a Gone with the Wind video, he made it happen. This Christmas he gave me an official Atlanta Braves uniform shirt (I have a thing for the Braves) and a silver necklace with an Egyptian hieroglyph pendant that spells ‘ I love you.’ (Yes, I have a thing for ancient Egyptians, too). But far more meaningful than material things are the ways he makes me feel special, of his belief in me when I doubt myself.

He never complains when he is rudely awakened by my alarm going off at 6:00 AM to remind me to take my first pill of the day and by my second alarm at 7:30AM when I begin the Parkinson’s meds for the day.

He drives me where I need to go, because I no longer drive.

He took me to Alaska to see the humpback whales.IMG

He took me to Great Britain and was sure to include Stonehenge because, yes, I have a thing for Archeology.

He took me to  a Monkees Concert because, well, you know…

But above all, I have a thing for him, and always will. A few years back, I wrote him this poem, which fits nicely in with today’s prompt:

For the caring, and the sharing

and the way you kiss goodnight

for the loving and the giving                                      IMG                 

and the way you hold me tight

And for listening and supporting me

in everything I do                                                                                             IMG_0002

I wrote this poem

to simply say

lucky me, loving you!