Life with Parkinson's Post #11- Excerpts From My Story entitled 'Isabel'

We opened the unobtrusive front door and stepped inside. The smell that permeated our nostrils was undeniably varnish; newly varnished wood floors. I had never seen anything so beautiful in all my life as this beautiful wood beneath my stocking feet. It was my first experience with wood floors. I was unable to decipher why I loved them so intensely. As we walked from room to room each was the same beneath our feet; gold striped satin that reflected my body as I moved. There was so much room here. I could get lost in the glorious roominess. We were about to embark on our first 'new home' adventure; newlyweds, four kids, and two cats. It would be a trick to make the payment. We decided as a family that we would sacrifice to do it and in return we would have 'room'! It was practically next door to the school our kids would attend for the next four years and in a respectable neighborhood. It was not spacious to some eyes. However, for us it was a castle. Space to walk without bumping corners. We endured a tiny apartment for as long as we could. The most fun we'd had in a long time was sliding from room to room in our stocking feet. There would be no heavy furniture for the first month until the new finish cured. It was a long month with all the furniture piled in the kitchen, garage, and one room with carpet but it was worth it. I was obsessed with the floors. They were a balm for my increasingly troubled mind. I cared for them lovingly. Something about them haunted me. Some months after I had my family settled in I realized why! People danced on floors like these. I could dance on these floors! The one I had to thank for this treasure of knowledge was my new husband, the love of my eternity. Before long, however, the joy of my new home, and lovely dance floors faded into the engulfing cloud of failing health. It was becoming evident to me and my husband that something was wrong, very wrong with me. How could it be? Oh, how could it be?

**************

I continued looking at my dance shoes still upon my feet; feet I had always regarded as somewhat large. They looked much smaller when I wore these shoes. The shoes had a life of their own. My feet did not hurt when I danced in them as if they transferred new energy to my feet each time I put them on to dance.

My eyes wandered to the mirror to determine how my dress had come through the performance. Were there any broken stitches or rips? No. I didn't see any. It wasn't uncommon to rip a seam during a dance. The fabric still felt good against my skin. I stood up in front of the dressing room mirror and began to twirl. My eyes never tired of watching the flaring skirt in the mirror and feeling the air move around me as my feet turned. My arms would move out for balance and the spin would pick up speed; the dress flaring our further. When I came to a stop the dress would bounce back to its starting position next to my legs.

I sat down again as my thoughts turned from my shoes and dress to my dance partner. He loved my flaring dress as much as I did. What a wonderful performance we had experienced. He had made this night possible for me. I suddenly wondered if he had gotten lost on the way to the dressing rooms. As I sat there immersed in my thoughts of him, he appeared in the doorway behind me reflected in the mirror.

"Hey, pretty lady. Do I know you? You are some dancer!" he said with a twinkle in his blue eyes.

"It's a stunning dress. You look beautiful in it."

He paused, his eyes taking me in as his emotions caught in his throat.

"You did well. They loved you. I love you."

It was always like this. He would build me up expecting nothing in return. He was an exceptional dance partner, soul mate and husband. What more could I ask for?

I moved to him and we were immediately swept into each other's embrace. We often remained this way a long while, savoring the heart to heart contact. Neither of us wanted to be the first one to pull away. We, somehow, knew when to release our grasp together. This moment was no different. We pulled back and looked at one another. I saw warmth and happiness in his face.

"You're the one who makes me look good", I replied.

"Thank you. Thank you for tonight!"

"You are most welcome", he answered and softly kissed me.

...to be continued

Life with Parkinson's Post #10- Excerpts From My Story entitled 'Isabel'

I didn't want to take off my dance dress; a dress I had designed and made. It transformed me. It was magic. Each time I put it on I felt like Cinderella. I twirled in front of the mirror. It flared out and uncovered my legs for a moment. I loved creating dresses that flattered a woman's figure yet retained a tasteful modesty. A beautiful, dancing body covered up did not distract the viewers eye from the dance itself and it allowed the them to use their imagination.
I had been taught in my youth to guard my virtue, even treasure it. Displaying myself in a costume that allowed too much information about my body was not an option. This dress was my best effort yet!
My dance shoes were one of my most cherished possessions. I had broken them in for the past five years as I danced. They fit my foot like a satin glove. They were like an old friend. I misplaced them once and cried, literally, in a panic until I found them two days later. They matched my dress delightfully well. I congratulated myself on this match I had made. I didn't want to take off my shoes either. So I didn't; at least not for another few minutes.

****************************************

Two days later I emerged from the fog of yet another migraine headache; one of my worst ones yet. The house was a mess. It made me sad to look at it so I didn't. My family would expect dinner as usual. What would I do for dinner? I was scared to venture out to the store. I was horrified at the thought of being back in the car. But who would pick up the kids? Natalie from the high school, Emma from the middle school, and David from the elementary school. It was crazy to have my kids in three different schools? Why didn't kids walk home from school anymore? My husband worked an hour away; he couldn't help me. I started to cry. Then I started to tremble. Was it trembling? It was like nothing I'd ever felt before. I was completely alone in my silent quest for answers to these seemingly insurmountable questions.......

Suddenly, I felt like I had forgotten something about today, something very important. Oh, what was it? I couldn't remember. More tears. I weakly considered praying for comfort. I had been taught to pray when I had nowhere else to turn. Instead I fell asleep on the couch while April played quietly on the floor, occasionally looking at her mother with the serious curiosity of a two-year-old who sensed the conflict but didn't understand it.

More to come....

Life with Parkinson's Post #9- Excerpts From My Story entitled 'Isabel'

'Isabel' is a story I wrote and even tried to get published. It was, as this writing is, a kind of therapeutic effort on my part to bring out all of my thoughts, feelings, and experiences that were not wholly positive and useful to my health and well being. Writing it completely changed by outlook on my past life and my future. I have changed my mind about publishing the entire story but I would like to share an excerpt or two with you. These excerpts represent my life's goals and inspirations in the wake of Parkinson's.


My breath came in short, hard, but controlled gusts. Sweat threatened to break through my carefully placed makeup and my form fitting dress. My feet felt like two bouncing balls at the end of their bounce. But I was not focused on these sensations. I only heard or rather felt the one thing that kept me moving. I was exultant! I was ecstatic! I was complete!

I had waited for this day for many long years. I was living my dream. I...was dancing. It was something I only thought about secretly, even afraid to consciously acknowledge the dream to myself, until I met my dance partner.

The music was escalating now. This was my favorite part...up into the air I went supported by the solid arms of my partner. Around and around I went, my gown flowing in the air in perfect harmony with the rhythm of the dance. The crowd screamed in pleasure and clapped intensely!

This moment was a culmination of years of sweat, tears and great physical and emotional pain. It was the sweetest moment I had ever experienced. I often asked myself if it was worth it. My answer was always an immediate YES!
It was a brilliant, beautiful move. My partner and I executed it perfectly, the music giving me the permission and the power to finish it. I felt strong yet graceful. The audience solidified the reality of these feelings with their display of gratitude.

The music slowed now. Strong, skilled arms brought me down gently but swiftly like a dove lighting on a fragile tree branch. I touched the ground and again my feet took over; moving my body with exactness, following that glorious music which seemed to flow through my heart and down into my feet. Now the crowd was quiet with anticipation. Many were leaning forward in their seats staring, waiting; not wanting this beautiful display of feeling to end. They were feeling it as much as I was. It would have been difficult not to.

The music ended; slowly, elegantly. My feet stopped! I was looking into the face of my husband; my dance partner. There was silence for a thrilling second. The entire room felt it. We had enjoyed a perfect ending to our dance together as we shared it with our audience. In that second our emotions transferred to one another through our eyes. We understood one another....

The audience erupted with joyous yet respectful applause. I wanted the moment to last forever. I turned with my husband to look at the source of applause. Such fulfillment was unbelievably good. I would do this again; as long as providence granted my body the strength and agility. I acknowledged my partner, then my audience, humbled and filled with gratitude for them. Eyes still watched as we exited the dance floor. As I departed hand in hand with my husband I met their eyes. I saw there a cheerful envy and respect...for my dance, for my partner, and...for me!

*********
It was the first inkling that something was wrong.

I was in the car...again; in my role as taxicab driver to my family. I spent a lot of time in the car running inbetween the kids' schools, baseball games, church activities and sundry other 'things'. Today I was preoccupied with something...? I couldn't move my left ring finger and pinky finger. They were stuck together like glue to the steering wheel. Just for a second...but they had definately been frozen, stuck. What was wrong with my fingers? I raised my hand up to scrutinize the two affected appendages as if my eyes would have the power to erase what I had just experienced.
"I was tired", I reasoned in my mind.
My hands needed something to do other than hold this piece of plastic and metal called a steering wheel that was forever before me. I quickly forgot about my sticky fingers as I arrived at the middle school. Into the car came thirteen-year-old Emma. Without so much as a glance at me, Emma's complaining, dominant personality spilled into the car and quickly filled it almost beyond my capacity to exist with it.
"Hi Mom. You will not believe what Elli did today! I'll never speak to her again..."
Her voice trailed off as I felt distracted again; with what? I was angry. Why was I angry? What was it?
"......I knew it was the worst day of my life, Mom, when I had to pull my retainer out of the garbage while the stupid boys, oh...stupid boys, stood there laughing. They could have helped me, but no, they acted like complete..."

I mumbled something about her having a better day tomorrow. It was my feeble way of trying to quiet the storm called Emma. Emma was so embroiled with the details of her awful day that she did not hear me.
"I would never act like that. What's wrong with boys anyway?" she continued; still not looking directly at me.

Did I imagine it or did my fingers stick together again? Oh, ...where were we? What street wa
s this? Where were we going again? I really wanted it to be home. I realized that Emma had stopped her tirade and was now looking at me.

"Mom, did you hear me? What's wrong?"
There was a look of utter exasperation on her face. In the back seat, my daughter, April, suddenly woke up crying; demanding to be let out of her car seat that she had cruelly been strapped into for over an hour. My whole body cringed at the sound of the frustrated screaming of my youngest child!

"Thanks Emma", I groaned. At that moment I was now fully angry. I wanted to make sure she understood this was not going to happen tomorrow. She would get into the car in silence so I would not have to bear April's screaming. I wanted to explain to my middle daughter that her problems were so small and silly compared to...compared to what? Yes. There were so many problems......

Her older sister, Natalie, a freshman in high school, had problems. April, who would soon have her first birthday, wanted her problem solved right now! Her brother, David, had his complaints as well. Although, David's personality had always been a bit sweeter than all of the girls put together. I wanted to make Emma understand.....but the only thing that escaped my lips that Emma's growing storm cloud did not blot out was a groan of impending pain as I realized I was feeling the small, sharp stab of an oncoming migraine.....


....more to come....

Living With Parkinson's Post #8..My Daily Fear and the Remedy

Each morning of my unusual, tempestuous, adventurous, wacky, bumpy, lovely and exciting life, I have the same thought; "What will today bring?" Then my second thought is always, "How much time will I have to function as a 'normal' woman today?" Most days I know the answer right away. Either, I can't wake up for the life of me because I took my nerve pain medicine too late the night before or I have no movement ability in my left hand or I haven't slept more than 2 hours because of, again, medicines that help pain but keep me awake. A small % of the population react to narcotic medicines this way. I happen to be one.

Some mornings my 10 year old daughter comes in and turns off my alarm that has been beeping for 5 minutes and we fall asleep together for another 5 minutes. She then becomes the mom and tells me to get up. She goes back to her own room to start her morning routine. Always there is a second visit to my room to say 'get up mom', which finally does the trick. I groan and roll to my side before sitting up to prevent any further back pain, a constant for me, and somehow manage to get out of bed. After the initial vertical position I am good to go. We took this picture one morning before school just before dashing out the door.


My fear here is the unknown and how I will handle it this time. I have many choices of activities to keep my mind and hands busy. It rarely involves housework though eventually I give in to the mess. I always have a sewing project in the works, I can start another drawing, I can practice my out of tune piano, I can try to dance, record a ballroom choreography idea (one of my favorite past times), take some pictures, get on the computer, read my scriptures (another favorite), call a friend or on really good days even visit a friend. I passionately love all of these things. But.... my body, such as it is, can handle only one of these activities in a days time, or within just a few hours. Then it's rest, relax, recharge. Until very recently, I have been the kind of person that never stops until I physically fall apart. I have learned a slow, hard lesson. Anyone know what I'm talking about?



So, if I get through one hour of sewing and my back is hurting too much and/or my hands 'leave me' , how will I handle it? If I have agreed to accompany a close friend for a vocal performance at church and my back hurts too bad and/or my hands 'leave me', how will I handle it? If I've been looking forward to our ballroom dance night all week and the very hour before we are to leave I'm hurting or not moving, how will I handle it? Will I have a 'down' day or a 'functioning' day? Will I be alone all day with my thoughts and my suffering body? Will I be able to do anything for my 5th grader today? Or will she be taking care of me? Will I have to go out in public looking like a stiff, zombie? Will I fall asleep driving my daughter to school or home from school? Will I have an appetite today (not usually)? This is my husband's biggest worry for me.

My fear here is again, the unknown. I have not been given psychic powers concerning the future of each day so I do what the rest of humanity does. I wing it. I get help when I need it. I sleep when I need it. I cry when I need it. I eat when I can. I keep taking my meds. I talk with God anytime. I talk with my husband before and after work; with my kids when they are present. I am lucky enough to be able to still have my parents to talk to on a weekly basis. And last but not least, I talk with my good friends who are not afraid of my disease.



I have recently started daily listening to 'guided imagery' and 'affirmations' to heal and help pain. I would highly recommend it. I have a link on this site to a site full of wonderful 'guided imagery' recordings you can download. It has relieved a lot of 'inner turmoil' type thoughts for me, bringing a better day because my body feels better.

Even with all of these positive tools, some days I just feel completely devastated, alone and hopeless. It's the stuff of life, it happens. Then luckily....I have a new day to try again. Really, my one true consolation is that I am not the only one who suffers in this world. Others have it much worse. With or without Parkinson's, I have a lot to offer and I will keep trying to offer it to any takers. Who wants what I have to offer? Interesting question.

I love finding the answer....love it, love it, love it.

Learning about Waterpolo and Parkinson's- what a trip!

Just about the time I started feeling the first effects of PD, I started feeling the effects of waterpolo (WP). My three oldest kids all played WP in highschool. My oldest, Nichole, introduced our family to it. She was tough as nails and throughout highschool and beyond she showed any male intrusion in her world just how tough she was thanks to WP. She endured the game through illness and my divorce, earning the 'Most Inspirational Player' Award from her coach. I learned a few tiny elements of the game with her two years of the game; spent some cold mornings, warm afternoons, and had my first heart palpitation when looking at the price tag on my first WP approved swimsuit purchase. I also learned a WP player, a girl player, was not fully initiated until her first suit ripping ordeal under the water!! Oh brother! Or should I say, oh sister! Where did the sugar and spice and everything nice go? It definately was buried in the water during WP games. Luckily, it is back. Nichole is as sweet as ever unless you walk onto her carpet with shoes....then you see her semi-sweet/clean part. Is that like semi-sweet chocolate chips? I think it is. She loves chocolate...! During college years she challenged some unsuspecting guys who happened to be at the pool to a game of WP. They eagerly accepted and were brutally taught a lesson; never mess with a girl who has been taught well in a pool of tough girls that there is nothing tougher. A solace to my worried mother mind was the day she met the man who loved her 'tough' and let it be. They are now married.

A few years went by and daughter #2, Clair, eagerly took up the sport, although, for another highschool. We had moved and I had remarried. Nevertheless, another adventure was I in store for. This time, my PD was more evident. I had not received a diagnosis or treatment yet. I painstakingly tried to remember when the games were, how much the swimming suits cost (more than the first time!), and how I was going to get through it with a 2 year old. We also had a new addition to our family, my 3rd daughter, Ariana. Needless to say, these years are a little more fuzzy. I hid most of it from my kids, except my 2 year old, who was always with me. I spent days on the couch, depressed, crying, not knowing what was happening to my body. When the older kids got home from school, I would try my best to be their normal mom. It worked for a while.
Clair was also a tough, competitor in the pool. I was beginning to see that my girls were very resilient and I was happy to live a 'healthy body' and athletic experience through them. I traveled to every game I could; around town, from school to school, learning the best place to park and sit to accomodate my slow, clumsy body and to keep my little one from jumping into the pool. I managed to witness some great plays, scoring and lots of 'Clair' personality during her games. I think her coach didn't quite know what to do with her because she learned the game better than he did. She has always been 'the leader' of any group and this was no different. She gave it all she had. During her senior year she gave it up to be editor of the school newspaper.

During Clair's tenure as a varsity player, my son, Cody, also discovered WP. She urged him over from football; a sport that was quickly going to ruin his 'flat' feet. She was a sophomore, he was a freshman. The football team chided him for giving in to a 'weaker' sport. Boy were they in for a rude awakening. During Cody's four years in highschool and his constancy in WP he was transformed from somewhat (somewhat, I say) shy, short, a little pudgy around the middle, and unfulfilled in a favorite sport.... to being the popular, handsome athlete, tall, strong and buff and an impressive, skilled WP player. I still struggled to get to all their games; endured thunderstorms, migraines from too much sun, exhaustion at times keeping up with their schedules. And now I had a 4 year old that hated WP games. Eventually I found sitters for most of the games during their last 2 years of high school. I also missed many games during this time because I was just too sick. But I was determined to look, sit, scream, and cheer like every other parent or spectator. So I worked on it. I carried an umbrella to shade the scorching, California sun. When it was cold, I brought a blanket and a bag of jackets, snacks and water for my 4 year old and to keep my strength up during the game. I would marvel at the healthy bodies playing this rugged game. It took all my strength just to watch it. It was my priority now. The day of a game I prepared myself and did nothing else so I would have the strength to 'not miss it'. I knew all too soon it would be over; these precious years with my WP loving kids would be over.

Clair and Cody were kind of a brother/sister WP icon in our community and I was so pleased with their achievements. They overcame personal obstacles to play WP, not an easy sport; each earning special awards for their perserverant contributions to the team.

Cody went on to play for our junior college being named 'All American' during his second season. Clair married a wonderful man who, during his highschool years(actually Clair's rival school), also played , guess what?....WP!

I spent nearly ten years attending WP games from Modesto to LA to the Bay Area. I went from no PD , through the hellish battle with the 'unknown' and then a diagnosis, small improvements, setbacks, healthier days, more setbacks, never giving up so my kids could have the memories of a mom who was there, watching, filming, sharing, supporting their dreams and accomplishments. There was more than a few days when I wanted to give up but I didn't because they needed me to be there and I needed them to succeed in spite of having a sick mom.

We all made it through. Nichole and Clair, married. Cody, an adult man ( I just still cannot believe it sometimes.) working toward a great future. Me, healthier now than then; still struggling, still have PD, but stronger. These memories are my healing balm, my happy place when I need one. Life goes on....this- my unique, marvelous life that has been indellibly marked by the sport of WP, three brilliant Waterpolo players, and a strange disease called Parkinson's.

~
note* Check back on this post in a few more days when I'll have pictures added!

Tummy Girls

I've been thinking about these pictures for some time and how remarkable it is that from generation to generation the personalities and physical attributes of the parent and child are so evident.

I think Nichole liked being on her tummy better than Brielle. Well, Brielle has her own likes and dislikes all ready. That's the way to be.... State your case and be what you want to be.......That's why they call her their little B!

Different house, different blanket but the same sweet eyes and cute head!


Nichole was quite an animated baby and always, always smiling. I used to call her my little body surfer because this is what she loved to do for hours on the floor. And her first love was, of course, the playtime activity that Brielle loves too- being in her jumpy chair.

Like mother, like daughter......
I wonder what other personality traits will pop up in the future? They can only be beautiful, creative, and sometimes well cleaned. That last one was a 'funny'. It will be fun to anticipate..... I like this Grandma stuff!!

Some of my favorite Photographs

Amazing Sunset !
The people who reside on the open farmland in this higher altitude, plant solid, powerful trees as a wind block or protection for their homes. They withstand great blizzards. We all need such a protecting presence in our lives.

One of my favorite herbs-

Chamomile growing in the wild.

The atmosphere reflecting on the sky. No other canvas captures the colors of our world like Natures canvas!!!

Morning solitude. As I watched this hawk morning after morning come to this spot, I envied his quiet solitude.

The majestic Tetons.

Sun break through the coulds at 8,000 feet. The moving light across the tree tops seemed a powerful presence, a reminder that we are dependent on the elements for life.

This lovely spot was so inviting, quiet sounds of water flowing and hidden wildlife.




The sun saying 'goodnight' to the wheat fields and the trees.

The stunning earth colors in this shot always leave me yearning to return there.

The color of golden fields with majesty in the distance reflects the season and time of day more than any clock or calendar.

You can never watch too much water polo!

More Waterpolo Videos of Cody

Life with Parkinson's Post #7- Is There Purpose or Pain?

I have dwelt on this subject nearly every day for the past 10 years. Why do I have PD (Parkinson's Disease)? How can I endure the pain? Is it more than just pain? Is there a purpose for this disease that controls mylife?

My belief system tells me that there is a purpose? It is a teacher to my soul. It is a guide for my wandering brain. I am the kind of personality that goes, goes, goes and goes some more. I was never content to be a stay at home mom. I would always find things, big things, to get involved in where I could use my creativity and my energy. Well, today all my energy is gone but my creative side is still on fire, needing an outlet. I have been reminded again and again that my time with my family could be short and they should come before any other activity, hobby, job, or interest. Mind you, a woman needs time to herself and especially needs to be able to express who she is every day. PD has taught me to never take for granted even one moment or opportunity to share my love and my service to family and friends. This is done in small ways; ways that do not overtax my body.

PD has also taught me that our bodies our precious tabernacles that house our souls. We have one life, one body and we should take care of it like it was a priceless gem. I'm acutely aware of every nuance of changing pain, weakness, mood, and thought. I do a daily mental inventory of my body's function. I live with daily pain; something that may never be corrected. I therefore, need to have a strengthening system to abide it. Music, dance, solitude, friends, God, family. Although, they are not necessarily in that order, my soul needs each one throughout any given day. Without them, I am lost. So I surround myself with opportunity which does not require great physical exertion to experience my strengthening system.

My friend, Patricia, visited me last night bringing me gifts and her exhuberant energy and conversation. She referred to me as 'a passionate mother'. I immediately said, "Ooh, I like that title!" Being passionate about life is a prerequisite for enduring it. Patricia has helped me see this. Thank you Patricia. Your energy still floats through our kitchen.

I take great solace in reading the scriptures. Whatever religious faith or philosophy you live by can be a good foundation for enduring the pain in your life, whether that pain is physical or emotional. I love the words of Timothy in 2 Timothy Chapter 4 verse 5-9.

"But watch thou in all things, endure afflictions, do the work of an evangelist, make full proof of thy ministry.

For I am now ready to be offered, and the time of my departure is at hand.

I have fought a good fight, I have finished my course, I have kept the faith.:

Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me at that day: and not to me only, but unto all them also that love his appearing.

Do thy diligence to come shortly unto me."

My faith happens to be Christianity. Jesus Christ is my master teacher. When I see him face to face I want him to know I endured, did the work that was required of me in this life (my ministry if you will), I fought a good fight, I was diligent in all things and waiting for me I hope to find great peace, love, and glory beyond anything this world knows. This is what truly keeps me going.

There is purpose in disease and pain. Some days I'm burning mad because my hands don't work and I can't play the piano when I have an opportunty or I can't execute a dance I want to because I'm shaking too much, I have a hard time holding my grandaughter and am afraid of dropping her. The anger eventually dissipates into thanksgiving when I realize how much I have to be thankful for. God is patient and waits for me to remember .....

When I remember, I move forward with renewed strength and find happy, even meaningful moments. This morning as I took my daughter to school, we stopped at the store and as we were walking back to our car we both communicated what a beautiful day it was; clean air, blue sky, perfect temperature. Both of us thankful for the mild weather. Then we heard a little frog croaking and tried to find him in the bushes next to our car. We didn't of course, but it was a fun moment. It was a personal, tender moment of thanksgiving; although seemingly insignificant to some.

I feel the pain in my leg, I try to ignore my slow moving fingers, my stiff posture, my fatigue at 10:00 in the morning. Is there purpose in my life other than being a statistic; one more person out of thousands who have PD? Yes, there is.

Today I had a meaningful moment with my 10 year old precious daughter, I had a phone conversation with my oldest 27 year old precious daughter, I have talked to two friends, I had strength to clean my kitchen, I am planning a visit to some other friends later. I read the scriptures and communed with God. I even had the strength to shower and fix my hair and put on makeup this morning. I will need a nap later, I will take a pain pill and be drowsy for a while but I will never forget the meaningful moments of this day; the people and places and things that made up those moments.

I am passionate, 47 year old woman with PD who has purpose. That's a good thing.

Life with Parkinson's Post #6- PD , A Complication

This morning my thoughts are on health issues I have other than PD (Parkinson's Disease). I started a new medication last night which I pray will help the nerve pain I suffer every day with. I've been taking narcotic pain meds for two years now and it's unpleasant to think of taking them forever, although they do help me function. This new medicine is not a narcotic but it takes the body a few weeks to adapt to it. So this morning I'm dizzy and very sleepy. I drove my 10 year old daughter to school; a little scary. There's no one else to take her.

Two years ago I injured a disc in my lower back; ruptured it. I had two surgeries to repair it. This year in January I had another surgery; a partial hysterectomy. This is opted to do because I endured nearly two years of constant bleeding; not fun. Also, last year for the entire year, I suffered daily migraines. These things were all complicated by PD. I'd go to the ER and the attending doctor would look at my history in disbelief. One said, "Lady, you've got a lot of problems." I said, "yes, I know." A few others tended to think I was in there just trying to get drugs; this was because of the frequency of my visits- 3-4 times a week. I am lucky to have survived it all. I was overdosed on pain meds by a nurse, and just on my own by taking the meds just as they were prescribed. I had many days when I just wanted to lay down and die. It was not my time to go. I have a sweet daughter, Ariana, who cares for me on my sicker days with such compassion for a 10 year old. I've been sick all of her life.

Medical professionals, other than my neurologist and GP really don't quite believe that I could have P. And...they don't really understand the disease. Each time I was in the hospital I had to fight them to give me the correct medication, to remind them again and again that my case is so different because my PD complicates and changes many of the 'usual' protocols. Most of them didn't understand at all and they probably never will. As I read on another blog today, unless you live something yourself it is very likely you cannot really, truly understand it.

The hysterectomy was successful in helping a lot of my aggravations. No more bleeding and pain from my diseased uterus. I also had a bladder repair which has helped me to function better also. I am just getting my 'pre-surgery' energy back. It's been 3 months. By 'energy', I mean something far different than what 'energy' means to someone without PD.

Now, medications.... I have done a lot of research on causes of my condition, tried many treatments, supplements, diets, and more medications. They have all been good and helped me in understanding my cellular structure and brain chemistry. Our bodies are so magnificent; they can really take a beating and still keep going. Last year I traveled to Pennsylvania and Idaho to see doctors and take part in clinical trial treatments. I no longer have migraines- Yahoooooooo!!
I have cut back on my P meds from 4 times a day to 3 times a day and sometimes less.

8 years ago, I was completely frozen on my left side, dragged my left foot. I couldn't tie my shoes or button a blouse. I couldn't cook anymore because I would cut and burn myself, I couldn't dance with my husband, I couldn't put my 2 year olds hair in a ponytail. I got into an auto accident because I blacked out. Now, in 2009, I don't have any visual symptoms to the untrained eye; that is after I have taken meds in the morning and as long as I don't have a virus or any other infection which changes the brain chemistry. I don't have the depression and mood swings anymore. My ambition is back, although I have found over and over again that I really cannot handle big projects like I used to. I love to organize and be in charge; PTA president, Volunteering, Teaching dance classes, putting on showcases, fashion shows, etc....... I have done most of these things in the last 8 years and I always crash after they are over and I'm down for weeks or months. I just got through making all the dresses for a wedding including the bride's. It was such an adventure but when they were done, I was sick.

You say, why do you do it then? Because it keeps me going mentally. I am learning slowly how to keep things simple yet fulfilling. It's not easy to a perfectionist, overachiever. PD changes everything I do and after 8 years I think I'm starting to understand this. I denied it for many years. I play the piano and I love to draw portraits (faces). I do it when I have the 'working hand' windows of opportunity. Very seldom do you see me cleaning toilets when my hands are working. That does nothing for my morale. Don't worry, they eventually get cleaned.

I think back on the past 8 years and shudder at how much I did, trudging along, sometimes falling into a pit for a while, then climbing out and finding my road again. My three oldest kids all went through high school with a PD mother. I tried to be involved anyway. It was tiring, sometimes an enormous load for me. But I knew these years with them would be gone all too soon and I was not about to let this stupid disease keep me from enjoying their teenage activities. They have all been very understanding and supportive for the most part. Now my two oldest daughters are married and tell me they really understand now what I must have endured. My adult son is also supportive and helpful, running errands for me and many other things. And my husband has been an amazing source of strength, enduring patience, and unconditional love. I am blessed.

PD is a complication of life like any other disease. But it doesn't have to be complicated. I have taken steps to eliminate any exposure to chemicals, including installing a shower filter because of the chlorine in our city's water, have worked hard on emotional healing (a lot to do there), and accepted the fact that this is my life, my only life, my only body. I make the best of it. Yes, some days I hate it and try to be angry but it doesn't do any good. I have family, great doctors, supportive friends, a home which is my haven. What more could I ask for? I have asked God to take away this disease and he said, "Not right now". So I live with it the best I can. Right now 9:00 am in the morning, I have full use of my fingers and hands and can type pretty fast. Later on today the slowness and stiffness will return until I take my scheduled meds. Some days I never have any down time. They are glorious days.

I am praying my body acclamates quickly to this new medicine and I can be free of the nerve pain and free of narcotics (which I am dependent on by the way). I stop taking them and within 12 hours I'm in withdrawals. So I hope this new method will work so I can get off the narcotics. It's hard taking so many medications, deciding when to take one so it does not interfere with the other. I get nauseous very easy and often vomit if I don't take the meds just the right way each morning. In spite of all this I am so thankful for these medicines. I would probably be dead without them.

I will probably sleep today, try to sew on a quilt I'm making for my mom, read my scriptures and ask God to help me today, clean my kitchen and my clutter spot in my bedroom. These things will take me all day. My daughter comes home from school at 3:30. Then we are going to make cookies and do homework and wait for dad to come home from work. We'll have an evening together that ends all too soon. I'm so thankful God has granted me one more day to be with my family and to function and find fulfillment. I really am living the dream......

Life with Parkinson's Post #5- Discovering Lifelong Friends

This is a tribute and a huge, loving thank you to my special friends Michy (pronounced Mickey)and his wife and dance partner BJ. They came to Modesto a year ago and are leaving all ready to follow Michy's employment and education opportunities. They have left an indellible mark in the dancing community and on my heart.

They taught me and my husband what excellent ballroom instructors look like, helped me immensely improve my dancing skill, shared literally everything they have with us, brought many positive ideas to our ballroom dance club that needed a facelift, but most importantly they reached out in friendship which will last a lifetime. They are moving to the east coast, so far! But I am consoled in that friends are only an email or a phone call away. Hopefully they will return in two years when Michy's contracted time is up. Hopefully, hopefully...

BJ and I share not only a love of ballroom dancing but we are also both artists, and love to sew. She paints exquisitely. Their humor, wisdom and general cheerful dispositions are contagious and they make friends easily wherever they go. I'm sure there is someone in Virginia who needs their friendship as much as I did and do.

And as a parting gesture of honor and good faith to me and my husband, they have offered to give us a teaching opportunity that they started; teaching ballroom dance to a group of lovely people in the area who still want to learn more. They informed their class tonight that they are leaving soon and introduced us. It means a lot for them to have enough confidence in us to carry on what they started. We will do our best to be somewhere close to their level of teaching, communicating and spreading cheer.

Not long after we met, one night at a dance, they asked my husband and I to share a dance with them. I am so self conscious about my Parkinson's gait, etc. and I don't usually dance with anyone but my husband. I told them about Parkinson's. Michy just looked at me and said, "Ok." Then we had a dance together. I felt comfortable and secure and I don't think he realizes how he has helped my self esteem on the dance floor. BJ taught me some valuable skills in the west coast swing.

Thank you Michy and BJ!!! (I'm crying) . It's not fair you have to leave so soon. (still crying). You'll never know how deeply you have influenced my life. I will never be as graceful as BJ as long as I have Parkinson's but she always makes me feel like I am. (crying harder now).

Many things we go through in our lives like illness are made bearable because of loving friends. These two wonderful souls have made my life a little more bearable. I look forward to many years of friendship yet to come...

Here's to life... and friends....

Life with Parkinson's Post #4- Going to Church

Sundays can be my favorite day of the week! I look forward to Sunday because for my family and me it is a sacred day set apart for worshipping God and fellowshipping with other people who may need friendship and who all need God's love recognized in their own lives. Now as I communicate my view on Sunday worship, immediately I have many concerns, and serious hinderances to my church going. The bricks hit me in the head again! Oh, yea I have Parkinson's. Well, how could this affect church going? Many painful ways. For me, Parkinson's has disabled my body from tolerating any kind of chemical. Now we all know our world is made of up chemical thanks to man's ingenuity and creative work; or is it creative stupidity? I try to be positive but on this point I don't know how. When I go to church I know that most likely the rest of that day and a few days to come I will experience the lingering effects of all the chemicals that come together in a church congregation gathered into a chapel. Women are wearing perfume, men are wearing cologne, after shave, the custodians just used cleaners to wipe down the woodwork, they've just given the carpets a deep cleaning, the large, flourescent lighting emits chemicals into our eyes, the bathroom soap is a harsh, industrial type, the bathrooms are cleaned weekly with chemicals. My body cannot process and eliminate chemicals like yours can. It stays in my blood stream, then into my brain where it continues to hamper the production of neurotransmitters. I was told by my first neurologist that the medical community pretty much agrees on one thing concerning Parkinson's and that is that environmental chemicals are the #1 cause of Parkinson's. Those of us who are unlucky enough to have the DNA marker for it will always suffer because of man's industry. I have my entire house stripped of any chemical. This is one of the biggest reasons I do as well as I do. I see in some peoples eyes as I explain this phenomenon of being sensitive to chemicals that I am surely exaggerating and I just need to get over it. That's ok. You can never understand an illness of this nature, not really, unless you've lived it.

Now, I love going to church. I have a very strong belief system that keeps me going. I need to go to church and be involved as much as I am physically and mentally able. In doing this, however, I sacrifice healthier days. The good people of my church's congregation are so loving and good to me. They all seem to be very intuitive to how I'm feeling; they've known me long enough to do this. There are always some who are insensitive no matter how long you know them. That's ok too. I can't control peoples reactions or what chemicals they bring to church. I can control my outlook and reaction to them. I know how much I can handle and when it's time to go home. For the most part I enjoy Sunday and learning about God's plan for me and for all of us. Parkinson's is part of my plan. I never complain to God about it, anymore.... He reassures me, gives me peace, and tools to deal with it. Many people have it much worse than me.

I am still self conscious about my appearance, shaking body, stiff hands, sluggish speech. These are symptoms one might notice on a down day for me. As with my ballroom friends, most people don't know or forget that I have Parkinson's until something comes along to aggravate it.

Today was a lovely Sabbath filled with the Holy Spirit teaching me. I had a hard time staying awake, and not crying. I take pain medicine which makes me drowsy and sometimes my Parkinson's meds have an affect akin to 'hyperactive'. Drowsy and hyperactive together do not make for comfort. I forced myself to make it through the three hour block of time that my church meets because I needed to be with my church friends and feel God's love today. I learned much, experienced tender moments; I would gladly sacrifice some healthier days for these things. What I find at church is not available anywhere else....Parkinson's is forgotten once again as I am wrapped in the all consuming love and spirit of God whom I most often refer to as my Heavenly Father.

The picture here is of me (in white) and three of my closest friends at church who continually inspire me and care about me. They all have hard things to deal with as well. Yet, they are at church with me and what a sweet thing that is.

I was asked to offer a prayer twice today, sat with my family (my husband, 19 year old son, and 10 year old daughter) then shared time with the women of the congregation learning more about how to keep the Sabbath holy. I made two new friends who are new to the ward (a word our church uses instead of 'congregation'). I am renewed in spirit for another week. Parkinson's or not another week is coming. I'm ready. Mind you, not every Sunday is this positive but I treasure the moment when it is.

Life With Parkinson's- Post #3 "Our Ballroom Dancing Night"

Last night was 'ballroom dancing night' for my husband and me. There was a time when I couldn't move well enough to walk a straight line and I didn't consider for a moment the possibility of dancing. My husband introduced me to the world of ballrom when we met 11 years ago. My physical abilities came and went and returned again. This, of course, is now a seemingly never ending cycle. It is present now more than it is gone. I preserve my strength and prepare myself all week to be able to have a successful 'ballroom dancing night'. It does more for my emotional and physical well being than any other form of exercise or activity. It is a great love for me and a big part of my life; even with Parkinson's. I have to work hard on my form, relaxing my tense muscles (not easy), executing dance steps in such a way that does not draw attention to my weaker, shakier appendages. Most of the general group of people that attend our dances are not aware that I have Parkinson's. Our closer circle of dance friends that I share this information with seem to be dumbfounded that it could be true and are very supportive of my efforts.

Granted, to dance I need to have taken my meds just so that day, have rested the entire day of a dance night, have proper, supportive dance shoes and attire that is warm enough and easy to move in. I also need my dance partner, my sweet, wonderful husband, who makes it all possible.

Last night was like many others. We danced to a live band for about 3 hours, socializing inbetween dances. I now serve as the president of the club so my dance nights are also filled with some administrative responsibilities that I share with an excellent group of individuals who make up our governing board.

We danced waltz's, fox trots, chacha's, rumba's, and west coast swings. When I am on the dance floor, I (mostly) forget I have Parkinson's. I'm like Cinderella; finally experiencing that long awaited, exquisite dance with my prince charming.

The late night and the rigorous exercise make for a tough morning after. It's slow going for the first few hours. However, this morning my hands worked fairly well even before my morning meds kicked in- a very good sign. The emotional high I get from dancing always brings back a higher level of function to my body; the mind/body thing. It is one of my greatest weapons for battling the Parkinson's monster. It is consistently successful in restoring mental and physical stability. So I keep doing it. I get frustrated as I subconsciously compare my sometimes awkward, unsteady posture or steps to other dancers who are free of such a disease. I envy their energy. So I dance in front of the mirror to correct anything that has a Parkinson's look. Periodically I have a friend video us doing a dance so I can watch myself and again make corrections to details I see that are a bit on the uncoordinated side. I have improved a lot by being able to watch myself. My eyes are always watching other dancers, storing away techniques, postures and attitudes.

I love to choreograph and teach where I am qualified. I hope to have opportunities in the future to do more of it. My dear husband always supports and follows my desires and dreams. I am blessed to have him.

In Memory of Monkey

I am sad this morning as we all are to say goodbye to our friend and family pet of 12 years. She was know as Monkey; also Monker Doodles. She passed away peacefully, curled up in our neighbors flower bed underneath a beautiful fern. We knew it was coming. But we're all ready missing her. I found the following pictures that describe her personality best. She has been a constant playmate for Ariana since she was 2 years old.

Monkey getting her first collar and nametag on Christmas morning.

Ariana took this picture on Easter and insisted Monkey be included.

Enjoying a moment with Clair.

One of her favorite places in her earlier years; the windowsill.

A favorite spot for her; on Ariana's lap.

She alway found a way to wiggle underneath or behind something to sleep. This is ground wire we have in our front planters to keep the cats from digging. It was her favorite nap spot for a while.

We'll miss you Monkey............

A Happy Evening, A New Friend

As I sat contemplating how long I would have my hands tonight the phone rang. It was a woman named Barbara who needed someone to alter her teenage grandaughter's dance costume. A retail dance supply store in Modesto gave her my card. After thirty minutes I felt like I had known Barbara and her grandaughter, Taeilore (pronounced Taylor-Aye) my whole life. As I worked on a simple alteration to her costume, they talked to me; asking me all about what I did in my wonderful sewing room. Everything they saw or heard was 'beautiful' and 'wonderful'. I could see right away that the two of them shared a special relationship. There was kindness and respect between them and they emitted that to me as well. We talked about ballroom dancing. They are both interested in learning. I mentioned the words 'Fox Trot' and Barbara jumped up and exclaimed "Oh, the fox trot! How does that go?" She started dancing around in place, smiling. Her grandaughter kindly said, "Grandma, not now." Taeilore wanted to give my card to her dance teacher at her high school. Maybe there will be another teaching opportunity there; I don't know. As they were leaving Barbara handed me payment and insisted on tipping me $5. She said she had a lot of business to bring to me (sewing that is) and said she was happy that God brought me into their lives. That was when Taeilore said, "Grandma, I think you should learn ballroom dancing. You'd love it." I was almost speechless. Not very often do I meet people who are so willing to open up in such a short amount of time. I have a new friend and that is an answer to a prayer.
By the way... my hands gave out on me after I started this post last night. A new day brings new strength- usually. So I finished it this morning. Going back to my conversation with Barbara and Taeilore- I don't even remember how, but she got out of me that I was still kind of recovering from my surgery in January, even that it was a hysterectomy. She was immediately concerned for me and gave me positive advice. I think I remember her saying something about Taeilore wanting to be a gynecologist as a profession and that she should listen to what we were saying so she would know the terminology. Twelve hours later I am still reeling with good feelings from their visit. I am looking forward to the next one.

Life with Parkinson's Post #2

Today was pretty typical. I have gone from extreme fatigue and frustration to feeling good and getting things done. There are moments in every day when I think, "I cannot do this another day." Then my 'transformation ' happens and the negative thought is gone. I am off to conquer another dream. I call it 'my hands coming back to me'. They come and go all day. It depends on how much sleep I've had, what my food intake has been, how stressed I am. Right now, my hands are with me. I've managed a trip to the library with my daughter, a trip to the bank, two loads of laundry and blogging. It is Friday, TGIF! My husband is home for the weekend; he is my lifeline. Tonight we will enjoy a television show or movie and just being home. I feel like sewing.....this is a good thing. I am a sew-a-holic. If I don't feel like sewing I am not doing well. I love to design and make my own clothes. Once in a while, I sew for $ but it's not as fun. Does any of this sound like 'Parkinson's'? Every 4 hours I am reminded that I still have P. when my hands start to fade and I head for the medicine spot on my kitchen counter. If I'm lucky, I'll remember to take them before my hands fade. Some days I take less medicine. Pizza is done. I'm hungry. This is also a good sign. I have a few more hours today to enjoy moving.