“You only know…”

Ever have a song resonate with you so much that you can’t stop listening to it? Its meaning might make you realize something you were in denial about. It could be a metaphor for the season of life in which you find yourself. Its tone or rhythm might shake your core. The singers voice cause your face to hurt from smiling or crying. It always shocks me when a song decides to weasel its way into my mind causing emotion to be unleashed and “ah-ha” moments to unfold.

IMG_7124

I’ve incessantly hit repeat on many a song in my life. Songs written by my favorite singer/songwriters like David Bowie, Tracey Chapman, Bruce Springsteen, Bono, Adele, MeatLoaf, Stevie Nicks, Ian Anderson, Tom Petty and on and on. My current addiction comes from a random Pandora selection. The voice is feminine and high but also has a hint of deep softness. It’s different and oddly soothing. I was surprised to discover the singer to be a man, and once I heard the song I felt it…the resonation of words that strike a cord deep inside. For whatever reason I was touched and a little saddened. I heard the song three times before I actually listened to the words. Once I listened and understood the meaning, I knew why the song stuck with me. It’s about appreciating what you have only when you no longer have it.

It’s not as though I didn’t appreciate the fact that I usually felt well, I just never really thought about it. I didn’t take for granted the assumption that I would live a relatively normal, uneventful, pain free life, it just didn’t occur to me to think otherwise. I didn’t wake up every morning yelling from the roof tops or praising God that my body cooperated with me, just seemed like my body was doing what it was supposed to do. These are things most people don’t take the time to think about. We don’t think about these things until we no longer wake up feeling well. Until we go through the day in almost constant pain. Until our body decides it’s not going to listen to us. Or until I turned on Pandora and a song came on that made me think…too much…about how I didn’t know how good my body felt and how physically unthreatened my future looked until the band Passenger decided to lay it out for me. The basic meaning of the song is that we never “know” until we “know.”

I can’t look back and wish I had known. All I can do now is be grateful when I wake up with energy; when I can go to Crossfit; when my kids smile; when my husband and I go on a date; when my laundry is done; and when I realize moments have passed where I don’t remember that I’m not fully in control. At least from now on I can remember to be grateful knowing full well that any minute things might change.

The song “Let Her Go” by Passenger

 

 

 

Away They Fly

It’s that time of year. Alarms set. Bags and lunches packed. Lack of sleep won’t stop the whirlwind. Up-an-at-em and away we go!

21552235_510888379256159_730533071_nThe morning began with showers, scrubbing and cutting finger nails, checking noses for dried crustaceans, digging for matching socks in my Everest of laundry, and making it to the school on time. Dropping off my children knowing they are safe, and cared for, and educated in a positive, consistent environment makes my heart full. It makes me thankful that I can focus the next eight hours of every day to my three-year-old and my health.

Public school wasn’t always the plan. My dream was to homeschool. We purchased curriculums, rearranged the house, set schedules. It was a wonderful idea. For two years we ran around the house singing songs about Jesus, made epic paper machete volcanos, read countless books, created gooey experiments, and practiced basic skills, morals and beliefs. These two years were playful and fun but also hectic, stressful and inconsistent. Homeschooling isn’t something one goes into blindly. It is a calling. I felt called. My husband, always being my support was all for the endeavor, and without his encouragement, we may have stopped sooner than we did.

Within a year schooling became inconsistent. Fatigue was taking over. Lessons were wavering. My resolve to homeschool was weakening. Before I discovered I had Parkinson’s I thought I was failing, and in some ways, I still feel that small sense of failure. However, as I would soon discover I didn’t have to force something that wasn’t quite working. There is a system in place for those of us who simply can’t, wont or are unable to bring school into their homes. Ah yes, the public-school system isn’t as scary as I once thought. The public-school system has become a savior to my children’s education.

Three months into my sons first grade year I stopped homeschooling and placed him in the First Grade. His first school experiences have been seamless and a major blessing in our lives. It has taken the pressure off attempting to educate three children and navigate a difficult diagnosis. The big step is accepting that I couldn’t do it all and needed help. Putting my son in school was one of the best decisions I have made.

And today it all began again. This time with two. My son is now in the second grade and my daughter in kindergarten. Dropping my kids off at school and picking them up were two moments in the day I will cherish. In those two moments, I didn’t have Parkinson’s. It wasn’t about me. It wasn’t about how I was feeling. It was about my children ready to embark on new journeys and uncharted territory. It was about seeing the excitement and ambivalence in their eyes, and knowing they were going to be okay.  

Stress, my bitch

I’m no stranger to stress. Stress is like an evil presence who threatens to take over your mind…your nerves…your strength and your resolve. Stress is a relentless bitch that nags and pulls and aggravates. She can be pushed and shoved away but she always finds a way of returning and wreaking havoc on your body and your mind.

Stress and I were in an on and off relationship for well over a decade. Our volatile liaison caused scars which can never fully be healed. Stress had me. But I found a way out. Or at least I thought I had.

My history with stress was purely mental and emotional. Once stress and I parted ways I assumed I would never have to look at her ugly face again. I didn’t know she would return and move our relationship to the physical side.

Stress in my life has taken on a new look. I can’t easily tuck her away when I find I’m being effected by her relentless attacks. She now likes to show herself. She moves through my body like a cold chill you can’t shudder away. She curls my fingers and my toes. She jerks my neck and my spine. She steals my sleep and drains my body. She relentlessly shakes my hand. She tightens her grasp on my shoulder, hip, ankle and neck. She creeps into my skull and makes tension ride throughout my head. She comes and she goes, but she always come back for more. Her visits can be aggravating, exhausting and painful.

I’m trying to deal with her the only way I know how. I’m trying to be stronger than her. I’m trying to breath her out; swim her out; rest her out; drug her out. I know that when I let her in she has her way with me. My body is no longer in a place where I can easily fight her off.

For now I can attempt to take charge. I can make her MY bitch and fight to not let her take over. Because I know that when I do I feel defeated. And once defeat sets in I may as well quit. But my parents didn’t raise me to quit. They raised me to always take the next step and move forward. I may have a disease who’s biggest enemy is stress but that doesn’t mean I have to lay down and take it.

 

On A Day Like Today

On a day like today I lay in bed waiting.

My body is speaking,

I am not listening.

“Don’t get up. You can’t get up.”

I get up, and I move.

 

On a day like today I move with added weight.

My body is speaking,

I am not listening.

“Don’t take another step.”

I put one foot in front of another.

 

On a day like today my voice is quieter.

My body is speaking,

I am not listening.

“Don’t talk. Don’t answer. Don’t speak.”

I open my mouth and force the words out.

 

On a day like today my eyes don’t want to open.

My body is speaking,

I am not listening.

“Stay shut. Be heavy.”

I force my eyes open and see.

 

On a day like today my insides are shaking.

My body is speaking,

I am not listening.

“Shake, shake, shiver.”

I take a deep breath and feel the calm.

 

On a day like today the tears try to fall.

My body is speaking,

I am not listening.

“Cry…cry…cry…”

I look at my kids and hold back the tears.

 

On a day like today I am reminded.

My mind is speaking,

I am trying to listen.

“You are strong. You are supported. You have this day.”

 

On a day like today

I get up, and I move.

I put one foot in front of another.

I open my mouth and force the words out.

I pull my eyes open and see.

I take a deep breath and feel the calm.

I look at my kids and hold back the tears.

On a day like today my body says,

“You’re alive.”

And I am going to listen.

-Kelly

The Wizards of Parkinson’s

I was looking forward to my upcoming appointment. I was going to see a Movement Disorder Specialist for Parkinson’s Disease. My general neurologist had hit a road block in treating me. He knew about Parkinson’s disease as it relates to the average population, those 60 and older. Being 35 I was his only Young Onset patient. Parkinson’s is not only difficult to treat in the general population but it becomes even more complicated in those who are younger. We present knew, different or unforeseen challenges. Our progression can be different. Our symptoms present differently. Our course of treatment may vary. In a short period of time my symptoms began to change and vary. These symptoms brought my doctor into uncharted territory, and being the wonderful doctor that he is, he decided to refer me to a specialist. It is recommended that anyone with Parkinson’s have a movement disorder specialist as part of their “care team,” so this was a step in the right direction.

Between August 2016 and present I had gone from tremor and right sided stiffness to pain and cramping in both hands and feet, commonly referred to Dystonia (involuntary, painful muscle contractions). I presented intermittent leg drag, twitching and tremor of my face and thighs, random shocks of pain throughout my body, left sided twitching, random left-handed tremor, weakening grip strength, and weakness in my legs most notably my thighs….to name a few. More symptoms accumulated and my neurologist decided to call in the troops. I was going to need to go see the wizards of the movement disorder world.WereOffToSeeTheWizardbyJohnRomita565

I was nervous and excited for my appointment. I was nervous to see new doctors, but excited to hear what they would tell me. I imagined them telling me how great I was doing, after all my days now consisted of a 5:30am swim, noon Crossfit, plant based diet, hemp oil, and essential oil support. I was doing everything in my power to slow progression, help my body heal, decrease my fatigue and increase my energy. I wasn’t expecting a gold star but I was ready to be told what a model patient I was. That I was one of those rare patients that doesn’t sit around accepting their fate. I was taking the bull by the horns and becoming a warrior for my cause! This however was a figment of my imagination. Sometimes we don’t get a gold star, a pat on the back or an “at-a-boy.” Sometimes we get handed the truth. The truth hurts. The truth is painful. I went in feeling empowered, and left feeling helpless.

The appointment itself lasted 2 hours. Two hours of the first wizard questioning and testing, questioning and testing. “Stand still and try not to fall forward… Stand still and try not to fall backward…Close your eyes, count backwards from 100 by 3’s while holding one hand out in front of you and the other making circles in the air…Tap your left foot….and your right…” and on and on and on. I had been through most of this before but there was something different this time. This was more clinical. It was more cold. It was more unfeeling. I was not with my neurologist who cares about Kelly the person. I was with a wizard to cares about a disease, who finds pieces of the puzzle and fits them together, who is a master at diagnosing and detecting and discerning a disease that is difficult to detect, diagnose and treat. After an hour with the first wizard he made a surprising announcement, he would now need to discuss my case with his boss…the head of the department…the wizard behind the curtain.

Fifteen minutes later the first wizard returned with his boss. Both were serious. Both were unfeeling. Both were staring at me like a lab rat. Someone to “figure out.” A puzzle to take apart and put back together. The all-seeing wizard looked me up and down and proceeded to put me through another battery of questions and physical tests. In my opinion, one can only walk back and forth down a hallway so many times till one just feels like they are toying with you. It’s an unsettling feeling, knowing that every movement your body makes is being scrutinized. Being under the microscope eventually awakened my sleeping symptoms of tremor and jerky movements. As I shook, four eyes were on me…scanning.

My dad being my doctor appointment buddy since the beginning had had enough of the questioning and decided to take a turn at asking the questions. I recall three distinct times when my dad asked, “so from what you can see is there any other possibility besides Parkinson’s.” Because once again we, more specifically I, found myself open to hope. Hope that there was a chance this was all in my head, and I would wake up from this reality only to find that it was all a mistake, a miss-diagnosis, and I would be sent on my merry way. Each time it was the same answer “all the signs, symptoms, tests and history point to Parkinson’s.” I think doctors like to toy with us. Don’t give an absolute diagnosis…let them hang a little longer…let them sweat it out. Due to my negative DatScan (a brain scan that looks at the level of dopamine in the brain, mine showing normal levels of dopamine) there was still a small chance it could be something else. But as stated two previous times, all the evidence suggested Parkinson’s.

Not only was I still left in limbo of being told I most likely had something without a definitive diagnosis, I was also told some hard truths which in my opinion can be left to interpretation. I wanted to reaffirm that everything I was doing was helping, I was slowing my progression. My daily blood, sweat and tears were making a difference. Again, my sphere of hope was shrinking. No, nothing you are doing will slow your progression. You might feel better about yourself. You might be mentally stronger, and with a disease in which the primary non-motor symptom is depression it can help you there. But speaking for the disease…one cannot stop the degeneration of ones’ brain, therefore, no, you cannot slow the progression of a progressive neuro-degenerative disease. Slowly the light in my face dimmed, my posture sank into the seat. I felt helpless. My dad could sense my defeat.

According to wizard number one, I must remember that this is a “slow moving” disease, so I potentially have up to 20 or 30 years till I’m in a wheelchair, so that’s good news! Another blow. I have of course read about this disease from three different books. I have googled the hell out of the internet, and yet, to hear the reality from the lips of a wizard caused defeat to set in a little more. My parents are active 63-year-old grandparents. My dad’s a runner and competes in triathlons and ultra-marathons. My mom does Crossfit. Before I know it, I will blink and I will be 63, and I am being told it’s ok, it’s a slow-moving disease.

The finale of this two-hour visit was being told I needed to return. The medication I am on is the top-shelf medication. It’s the hard-core med of hard-core meds for Parkinson’s, carbidopa-levodopa. It’s the one everyone eventually gets on. It works the best, and unfortunately has some of the worst side effects which can be as debilitating as the disease itself. I was on it because it worked. I was on it because I was told that there were studies that showed young onset persons slowing their progression while being on it. However, the earlier you begin taking it the higher likelihood of developing dyskinesia’s (uncontrollable movements of the body). The wizards wanted me to return but this time I would return off my medication. They want to see me at my worst. They want to be able to determine if I am bad enough to warrant the use of carbidopa/levodopa or if I could hold out for as long as possible and take another medication that though less effective and less powerful will keep my symptoms somewhat in check.

The idea of being off the very thing that lessens my unbearable symptoms for 27 hours is terrifying to me. But it’s also intriguing. How bad am I? How far have I come in one year? Am I as bad or better than I think I am? There are risks to suddenly stopping this medication, including heart attack and stroke. Being off it seems like a game the wizards are willing to play. I suppose I’ll play, what choice do I have?

I went into this appointment with hope, pride and empowerment over my situation. I left feeling lost, angry and defeated. That evening my body crashed. I became flu-like, fatigued, and depressed. Stress has a way to mess with the person with Parkinson’s in a way that leaves you empty and motionless. The next morning my alarm went off at 4:50am. Thoughts flooded my mind. I don’t need to swim, it’s not doing anything for me anyway. But I was already up so I went. I swan for 40 minutes straight and still felt lost. I went to Crossfit at noon and completed 100 strict push-ups, and still I felt defeated. I came home and had a break down. Unfortunately, my three children took the brunt of my outburst. My husband, always knowing me better than I know myself, sent me away. For 2 hours, I drank coffee and read a book at the local Starbucks. I regrouped and came home.

21082250_504439276567736_1348250375_oI reminded myself that no one…no one can tell me what I can and cannot do. If I feel I am going to slow my progression by working my ass off then I am going to do just that. I may not actually be re-growing my brain but I am making myself stronger and healthier to weather this storm and take the blows as they come. A wheelchair and countless other struggles may very well be in the cards, but right now it isn’t. I’m mobile in every sense of the word and I’m not stopping any time soon. I don’t need a pat on the back and empathy from a wizard. Their job is to work their magic and keep me moving. I have all the support I could dream of from my family and friends, and I know that for better or worse they aren’t going anywhere. Having my family, and doing what I do daily makes me feel a level of pride that I have never felt before. It makes me feel alive. I’m not going to give up these feelings any time soon.

So… ok wizards, you do your job and I’ll do mine. And maybe, just maybe, I’ll shock the hell out of them and prove them wrong. Maybe I’ll show them how a progressive disease can be taken as an opportunity to better ones’ self and possibly change the course of ones’ destiny. What do I have to lose?

A funny thing happened on the way to volunteer…

I was raised to volunteer (thank you mom). By the time my brother and I were 10 years old we had already been involved with the Easter Seals, YWCA, Boy and Girl Scouts, PTA events, and countless other volunteer en3907_104377321549_6064499_ndeavors. In middle and high school I spent my free hours volunteering as an aid for students in the Life Skills classrooms, volunteered as an HIV prevention educator, and tutor. In college I assisted doctoral students with collecting research for their dissertations, volunteered for Joint Forces Dance Company, and Birth to Three. I spent two years volunteering as a raptor handler/rehabilitator and docent at the Cascades Raptor Center. I thought I was well rounded. I felt I had a pretty open mind and lacked a judging attitude.

When I ran into my friend RuthAnn Rini lead pastor and founder of Unleashed Community Church I didn’t hesitate when asked if I would like to volunteer with her outreach at Pro Bone-O which offers free veterinary care for those who are homeless. I was to meet her and her lovely family at 8:30am at the local homeless shelter in our area.

Upon my arrival I was alone, and sitting outside on a donation box, watching men go back and forth with shopping carts full of their belongings. During my wait I was yelled at my a gentleman carrying a large quantity of eggs, and was told by a random passer by that he would call the people for me and let them know I was here! Well, no one showed up for me.

Getting nervous that RuthAnn wasn’t showing, I began noticing car after car driving into what looked like an abandoned building across the street. There was overgrown grass and barbed wire fencing. Sure! Let’s have a look! I got back in my car and drove through the gates. There in the front was the Pro Bone-O sign! My sense of joy and relief was stopped abruptly as I began driving through a crowd of at least fifty homeless people and their pets. If I was out of my element 15 minutes ago this brought me into a whole new realm of discomfort. Outside of offering my loose change and a free Mickey-Dee’s burger to the local corner squatters I couldn’t recall a time where I had interacted with someone who was visibly homeless.

I parked my car and got out. I was unsure of what I was supposed to do or where I was supposed to go. The line from the movie What About Bob kept repeating in my brain…”I feel good. I feel great. I feel wonderful. I feel good. I feel great. bill_murray_what_about_bob_i_feel_goodI feel wonderful.” My armpits were soaked with nervous sweat, and my internal tremor was attempting to make a full on appearance. My judgments and pre-conceived notions of “these people” were raging. I couldn’t let them see my nervousness. Show no fear. Act like you know what you are doing. Did I lock my car?! Where was my phone?! What the hell have I gotten myself into?! During this time 15 more minutes had passed and the crowd reach 75 or more. I was at a loss on what to do.

Then, a old metal door opened and someone from inside came out. It hadn’t even occurred to me to open a door. A few minutes later…someone went in. This was my chance! In through the unknown door I went hoping to see RuthAnn’s smiling face. Of course there was no RuthAnn but there were about 10 volunteers scurrying about filling drawers with free leashes, collars, and harnesses; covering tables with free blankets, pet beds, treats and toys; searching filing cabinets for client information; checking dosages for the free flea treatment area; stapling intake forms; and completing countless other tasks.

Feeling accomplished that I had finally arrived I introduced myself. “I’m Kelly! I’m here to see RuthAnn and volunteer with Unleashed Community Church!” Blank faces went about their business. Completely awkward and feeling even less confident I repeated myself to the woman in charge of intake. She didn’t know who I was, who RuthAnn was, who Unleashed Community Church was but she was happy to allow me to shadow her. Feeling relieved to have found a friendly face who would slightly coddle me, I relaxed a little. I subsequently repeated who I was and who I was with a half dozen times. No one knew anything, but they did know they had a volunteer.

I was told to shadow different areas; intake, dog collars, and flea treatments while I awaited my orientation at 10:30 from Jeannie. I had no idea I needed to do an orientation, and had never met or spoken with Jeannie, whom everyone thought I was referring to when I spoke of RuthAnn.

My first official set of directions gave me a gut check. “See those treats? Take some, go out, meet the pets.” Excuse me…You want me to go out and meet scary people and their scary pit bulls and crazy cats? My mind was telling me “hell no!” But my do-good, volunteer, better half grabbed a handful of dog biscuits and headed out the door. I took a deep breath and began to walk around, meet dogs and talk to people. The most shocking thing happened. I wasn’t attacked. I wasn’t assaulted. I wasn’t bitten by a rabid pit-bull. I was greeted with kind stares, timid animals, appreciative words, and above all people who love their animals. People who care enough about their furry family members to make the journey to a bi-monthly clinic, waiting sometimes an entire day outside in whatever weather Oregon has to offer to get the care their animal deserves. Within minutes my walls were broken. My stereotypes crushed. I decided to make the rounds three times.

Some people were certainly “characters” in every sense of the word. One woman looked and dressed like the singer Pink. A Rastafarian gentleman explained what type of dog he was, and said that he had always wanted to be a giraffe when he grew up. His dream was of course shattered when his father told him he couldn’t be a giraffe, looks like a dog would have to do. There were healthy people, and very sick people. One particular woman had a large bleeding sore on her face and threw up right next to me. The shocking and wonderful thing about all of this is no one batted an eye. Not one client, and not one volunteer showed disgust or horror. They simply dealt with it like caring, empathetic human beings.

Two hours into my experience I thought what looked to be RuthAnn. I left the clinic and followed the fluffy blonde hair around the side of the building. And there they were. Unleashed Community Church doing their ministry. Passing out breakfast foods (which I had brought but were now being eaten by the mass of hungry volunteers), talking with clients. Being an ear to listen to anyone wanting to stop and chat a while. That was what I was supposed to be doing. Volunteer for Unleashed not Pro Bone-O. RuthAnn was delighted to see me and hear of my last two hours. I told her to wait a few mintutes and I would tell Pro Bone-O that I had indeed found the elusive RuthAnn and would now be passing out breakfast foods and chatting away with potential clients.

By the time I walked back to the clinic the “Jeannie” everyone told me about had arrived. I explained my mishap to everyone, thanked them for tolerating me and that I would be on my way. But God has a way of directing people. Sometimes it’s not our plan but His. Jeannie shook my hand and said “it looks the universe worked in our favor! You need to do orientation. We want you volunteering with us!” Without batting an eye. I said ok! An hour later I had a clear understanding of Pro Bone-O, the population they serve, and the services they provide. SAMSUNG CSC

In three and a half hours my world opened a little wider. Some stereotypes were broken. I went from nearly full-blown panic attack to a calm, helping heart. In a short period of time I developed a greater understanding of the people whos love for animals goes beyond class. For this time my personal struggles were gone, my eyes were seeing true struggle, true joy and true blessing.

I’ll now be volunteering with Pro Bone-O vet clinic, and will continue to work on my understanding of the world and the people in it.

Thank you RuthAnn for not giving me the clearest of instructions, and for your heart and service to our furry friends and those in need.

 

 

 

Ditch and Switch

I was a list maker. A very obsessive list maker up until 7 years ago when I had my first child and all of that obsessive list keeping went to crap. I remember feeling very accomplished as a kid checking off my long list of self directed house cleaning chores. The smell of lemon aerosol dust spray, blue Windex, green dish soap, toilet bowl cleaners with the tough child proof caps, soft silky fingers after rubbing them along a fresh dryer sheet, and Tide, yes, the smell of soft fresh Tide filmed clothes warm out of the dryer. These might sound like odd memories to have as a child but I enjoyed them. I enjoyed completing my list in a way that helped our home.  As an adult my silky fingered fabric softener memories were dashed as I learned this beloved product was one of the 10 most toxic cleaning products in our home. This on the list with every other cleaning product I grew up believing was keeping our home fresh and germ free.

After much research I came up with my first DIY fabric softener. Vinegar. It was one ingredient. It was cheep, and it did not include a known carcinogen. If I could ditch one toxic cleaning product in my home couldn’t I replace the rest? I went on to make my own laundry detergents, dish soaps, shampoos, deodorants and lotions. Some we would love. Others we hated. I went to the local natural food store and began buying essential oils as they were supposed to have beneficial health properties that could be used in cleaning and beauty supplies.

Eight years into my quest for a toxin free home I discovered something even more shocking. I was using essential oils to boost the benefits of my DIY creations but I was using oils that in-and-of-themselves were toxic, diluted and adulterated. I woulduntitled come to learn that there are four grades of essential oils. Grade A is pure, organic and therapeutic which can be used internally, topically, and aromatically. Everything else is either perfume grade, food grade or floral water all of which are below par to grade A. I was buying some degree of grades B, C or D. I was angry. In my attempt to ditch the toxins I was actually using oils which were potentially toxic.

Two years ago I found a better way. I was leant a diffuser and some grade A oils and was told to use them to support my families immune system. My world opened yet again. I didn’t know you could use oils medicinally to support all systems of your body. I didn’t know there was anything other than adulterated store bought oils. The oils were powerful and my families immune system become stronger. I soon bought myself a kit with 11 grade A oils and took off. I began making roller bottles to support my husbands head tension, added oils to facial pads, dripped oils into my tea, water, and smoothies, added oils to capsules to support seasonal woes, and diffused oils to support a restful nights sleep for my kiddos. There was literally nothing I couldn’t support with these oils.

As I learned I had Parkinson’s disease I was confused. I was not raised on a farm around a continuous array of pesticides. I was not subject to Agent Orange or another product of chemical warfare. Besides a minor concussion I had no previous brain damage or trauma. I had no family history, and a genetic test revealed I had no genetic biomarkers for the disease. My diagnosis was idiopathic meaning “no known cause.” The incidence of Parkinson’s, Alzheimer’s, Multiple Sclerosis, cancers, and other neurodegenerative and autoimmune diseases are increasing at an unprecedented rate. Can we be honest with ourselves and ask the question, why?

I am obviously no expert. I am merely a woman trying to discover what I can do to lessen the probability that my children will develop some common or obscure disorder. In my opinion, though we are not being raised on farms or around mass amounts of chemical toxins, me oils.pngwe are however taking in smaller amounts of carcinogenic, hormone altering, brain degenerating chemicals on a daily basis with everything we ingest, apply and breath. If we want to combat the effects these toxins can have we need to make the change ourselves. We need to literally ditch and switch every product in our homes to ones that are truly natural, organic and plant based.

One of my goals is to get essential oils into every home. I’m not trying to get you to buy kitchen supplies, dresses, nail polish, or jewelry. I’m trying to get you to buy something that will change the course of your life. It will make you and your family healthier. I know I can’t control every bad scenario that may befall my family or myself but I can control what we ingest, apply and breath in our home. And let me tell you something, so can you!

**If you would like to learn more about essential oils and how to live a toxin free lifestyle please go to An Oily Heart on Facebook, and message me if you have questions. Or go to Young Living, select become a member and enter 3522966 as enroller and sponsor. I would love to help you transition to a toxin free lifestyle.**

Do I want to be a “Parkie?”

“Parkie” is an empowering and endearing term used by a Person with Parkinson’s (PWP). Not all PWPs embrace it. Some think it corny to call themselves a Parkie. Some are all in. “Parkie? Yep that’s me!” I have yet to embrace the term as I still feel I am in a vicious battle between the substantia nigra cells and dopamine in my brain or lack thereof. I’m still holding out that my “cardinal” symptoms are simply a figment of mine or my neurologist’s imagination.  I feel that by embracing the term Parkie I am giving up on the tiny hope that I actually have some other bizarre issue which can easily be cured with therapy or a miracle pill. Where is Miracle Max when you need him? I’d gladly ingest a dark, goo covered seed any day!

Unfortunately, my goo covered seeds are tiny white pills taken to synthesize the production of dopamine in my brain. Apparently dopamine is important. Apparently my stupid cells are attempting to stop its production. Within 30 minutes of taking this little white pill for thPD imagee first time my tremor was gone. So why the apprehension in embracing such a ridiculous title you ask? First, sarcastically speaking, who in the hell wants Parkinson’s (PD)?

1 year ago turning on the kitchen faucet changed my life. Turning on the kitchen faucet triggered the start of my uphill battle. Within seconds of turning that damned faucet on my right pointer finger began to twitch. I called my husband over and we both laughed at this strange unceasing tremor. A couple weeks later I was in to see my OBGYN. Why a gynecologist? Why not? I loved her and since I didn’t have a GP I started there. I was quickly moved on to a nurse practitioner, then to a MD, and finally made my way to a neurologist. Weeks of blood and physical tests and a MRI concluded nothing. I was then injected with a radioactive solution and was given a DatScan. The DatScan, though commonly misread and generally inconclusive is the closest thing to a Parkinson’s confirmation there is. When mine came back “normal,” my nuero was stumped. He softly diagnosed me with the more common, more familiar Essential Tremor (ET) characterized by an active tremor, and I was placed on blood pressure medication. By now it had been three months since my initial tremor began. In three months my tremor was worse, pain began creeping into my hands making it almost unbearable to pet my dogs, bouts of complete and utter fatigue took over, stiffness was getting worse and I was frozen in time. I felt as though I could not move forward. My neuro could see that I did not in fact have ET. He decided to give me a medication test. Putting one on the main class of drugs to treat PD, carbidopa-levodopa or commonly known as L-dopa (as first witnessed as helping PWP’s in the book and movie Awakenings), is the final test and most controversial due to an array of negative drug side effects. In most cases if it works you have Parkinson’s. In my case L-dopa worked. I had Parkinson’s.

Being diagnosed with Parkinson’s a progressive neuro-degenerative disease is a hard pill to swallow by itself. Most who are diagnosed are over the age of 60, putting my diagnosis in the more rare Young Onset population which consists of roughly 5-10% of Parkies. My thoughts consisted of “Oh no…not me! I am a stay-at-home mom of three children who need me. I workout. I have a solid marriage. I’m active. Will my children get it? Will I die from it? Will my husband be pushing me around in a wheelchair in 10 years? Will people notice? Will I get dementia? What about…What if…This can’t be…Not ME!! Well one soon comes to realize this way of thinking is less than productive. I decided I would read and re-read everything about PD. I would stop my slow progression by killing it with knowledge. This avenue only works for so long until you realize you’re obsessing over a disease you can’t predict. Parkinson’s is considered to be the “snow flake” disease. No one Parkie is like another. This mere fact makes research and finding a cure more than difficult. It can take ones mind into the darkest corners, and leave you in a constant swirl of questioning…why me?untitled

Well why not me?! Every person has a struggle. Every person is on a course all their own. Every person has a life to live for better or for worse. Nothing in my story makes me too special to develop a disease. After all we all live in a world filled with toxins, traumas, poor diet, laziness, and questionable genetics. We are all in a position to develop disease. So instead of questioning the why and putting the moniker “Parkie” at arms length I am going to embrace it. Parkinson’s isn’t going anywhere soon so what am I going to do about it?

Parkinson’s is a daily battle. There hasn’t been a single day since my tremor began where I have forgotten that I have PD. Though I am not going to let a disease define me, I am going to let it change me for the better. I am going to let it take me where I never thought possible. I am going to let it make me into the person I always wanted to be…someone who fights like hell to live life to its fullest.

When Life Knocks You Down…Do a Burpee!!

Ahhhh the sight of metal racks and scores of vertical barbells and bumper plates waiting to be used; dustings of white powder across pull-up bars, chalk handprints and rope fibers left on the ground; hearing the yelling of guys upstairs upset by an “unfair” game of ping-pong; the allure of a cold post-WOD (workout of the day) cup of Kombucha from the kegerator; untidy cubbies filled with Metcons, lifters, wraps and tape; the smell of victory and defeat from those who previously made it through the WOD you’re about to embark on; the bantering, enthusiasm, encouragement, and prodding from our amazing coaches…these are only a few of the images, sounds and smells that make me love…adore…and need Crossfit.

I’m no weight lifter. I come close to lifting the least. I’m not that fast. My balance and flexibility are crap. Where I lack in Crossfit Games ability (sorry Tia-Clair Toomey maybe next year) I make up for in my absolute desire to better myself.

On the advice of a friend I was encouraged to try Crossfit a sport I had never heard of before. Crossfit is a sport which uses varied functional movements that you can use in every day life. And burpee? What’s a burpee? Crossfit and the “burpee” are synonymous with each other. Basically, a burpee is when you throw yourself on the ground, jump back up and repeat. You might hate it, and you might throw up. It’s been two years since I walked into Crossfit Evviva, and have now thrown myself on that blackened rubber flooring more times than I can count. hulk

I went from being timid, weak and soft to confident, strong and toned. Crossfit forces one to dig deep inside ones self and push past preconceived mental and physical barriers and limitations. Crossfit kicks your ass…and it doesn’t take too long until one begins to like it. Yes, it is a variation of Cool-Aid, and yes, once you drink it you will come back for more. That’s what I did anyway.

Crossfit…or to be more specific, the coaches and the people I see there on a daily basis have changed my life. And they continue to save it.

When I was diagnosed with Parkinson’s I had already been knee deep in barbells and burpees for a year and a half. The number one prescription besides that of hard core pharmaceuticals is exercise. With movement comes improved muscle memory, decreased stiffness, increased flexibility and improved overall mental health. Parkinson’s is a “move it or loose it” disease. Though my goal is always to make it in up to six days a week, there are days my body thinks otherwise, and it takes all of my energy to brush my teeth. In which case I call for back-up…my mom.

I know without a shadow of a doubt that my Parkinson’s tremor would have shown its ugly head years ago if it wasn’t for Crossfit. In my attempt to slow the progression of this disease Crossfit has become one of my chosen medications. Our coach and owner Byron once said something to the effect of “Crossfit gives you the ability to deal with life.” Everyday I walk in feeling some degree of pain in my body or pity for my situation, and every day I walk out in less pain and an increase in mental toughness. Crossfit Evviva allows me to rise to the challenge one burpee at a time.

 

First blog post