Thunderclap....My Mission - Youth Tipped

 UnSHAKEable@Thunderclap was tipped on October 21, 2013





Here it was, September 2013, and I came across this site called, Thunderclap.  Thunderclap was set up to promote causes or messages on sites that could be voiced around the world.  How I found this....I honestly don't remember.  What I do remember is this incredible, amazing push, by people I knew, and people I didn't know.  A push to help me launch my site, UnSHAKEable.  And my greatest supporters, were those who were probably the least aware of my cause......the youth.

I remember reading the introduction to the Thunderclap premise.  It worked as such:
-submit a brief introduction to your site
-decide on a specific target amount of supporters for a 30 day window of opportunity
-have it approved by Thunderclap
-begin promoting your site
-if you reached your goal of supporters, the success would be "tipped".  (your message would be launched to the audience total of your supporters in one, big, "Thunderclap"

And, so I began.  I had this goal in my mind that I would try to educate as many people as I could, about Young Onset Parkinson's. Until Thunderclap, I had no idea where I would even begin to draw an audience
So, what the heck, I decided to submit my idea and see what would happen  I really felt that this would be a long shot, as I looked over some of the causes that had already been "tipped", one of which was, #ThinkABLE, with Michael J. Fox.  Wow!  Big leagues...they had projected 5000 supporters.  I reviewed and studied many of the sites that had been pitched and were awaiting their goals, as well as those sites that had reached their goals.  So, as a result, I set my goal at an attainable, 100 supporters.

With my goal in hand, I sent off my site for approval from Thunderclap.  Within 48 hours I received, "Welcome to Thunderclap, your site, UnSHAKEable, has been approved".  I was ecstatic, to say the least.  Now I would have 30 days to promote and entice 100 supporters.  "GULP"!   This may certainly be a difficult task to swallow.

Surely there must be some interest in Young Adult Parkinson's......right?....but where to begin??  Quite honestly, who would share enough interest to actually throw me some support?  100 to be exact.  Well, it came from the place that I had least expected it to come from...today's youth.

I sent a quick message to all my Facebook "friends".  I know many of them must have been shaking their heads thinking, what the heck is she up to now??  But slowly, a couple of friends and a few family members submitted their names as supporters.  I think perhaps my first attempt netted me a  total of 9 supporters.  Wow....my goal was, WHAT?!?!?  I waited a day or two, spiced up my site, UnSHAKEable, and delivered a hopeful message, again, to my Facebook friends.  I think I was able to conjure up about 5 more.

Thunderclap had a base site with which you could follow the number of supporters for the hundreds of submissions that they had.  The closer a site got to reaching its goal, the closer the site moved up in ranks on their pages.  Mine had at this point, ranked about page 67.  I sat there thinking to myself, "how badly do you want this?  How much would it mean to you to be able to educate people about Young Onset Parkinson's"???  I kicked it into high gear.  I was not ashamed to plead, beg, or simply terrorize my Facebook friends.  Suddenly, the whole mission took on a life of its own.

Friends were encouraging friends, and family, and complete strangers to support, UnSHAKEable.  But what absolutely blew me away, and still brings a tear to my eye, is the force with which the young people I knew, pitched my site to their friends.  It was absolutely astounding and so very humbling to see the supporters adding up, and inching closer each day, to that goal of 100.

My two son's girlfriends, and Frank's two daughters, all of which probably averaged 24 years of age, were on a mission to help me with my goal.  They sent messages to friends, begged for others to invite their friends, and my goal was inching its way daily! I watched my site climbing up higher and higher on the Thunderclap  page status.  These young people, whom I had never met, and whom probably had never even heard of Parkinson's Disease, rallied support that was truly, unbelievable!

With one week to go, I needed 23 more supporters.  These young people kept recruiting, with 12 days to go.....reached 107 supporters!!!!   My message (site) would be launched by Thunderclap.  It had been such a truly awesome, yet humbling experience.  How many negative messages do we hear about, today's youth?  Many.  But when I saw the depth and breadth, that they would go to, to support a cause for each other...my faith in our young adult generation was totally renewed and strengthened.  To see how they would reach out....to a total stranger...just because a fellow friend, buddy, peer, had asked them to.  To throw their hat in the ring for a disease that they had probably never even heard about...well, was just beyond anything I could have imagined!

On October 21, 2013, UnSHAKEable@Thunderclap, was launched to the world.  "Tipped" to an audience of 27,938 to be exact.  And their friends would tell their friends, and so on, and so on.  It was on this day, that I heard a huge Thunderclap ring out a message about Young Onset Parkinson's only through the determination of a few wonderful young people, to support this one crazy lady, who had this crazy idea....that she should share her message with the world.  The message that, by being informed, one could remain, UnSHAKEable!!

Donna....Parkie of One..this way please.....

 April 2014


Have you ever had to wait in line at a restaurant...wait for your name to be called?  Everyone seems to be moving along, being seated, and all the while you are observing delicous food being served, laughter and conversation being shared.....and you just sit and wait.  For a Parkie, that is life in general.

 An estimated seven to 10 million people worldwide are living with Parkinson's disease.  Incidence of Parkinson’s increases with age, but an estimated four percent of people with PD are diagnosed before the age of 50.  Men are one and a half times more likely to have Parkinson's than women.

Wow...those are some stats!  7-10 million Parkies, of which I am one of the 4% diagnosed prior to age 50, and I am a woman.  Feeling lonely yet???  It is very difficult to understand the disease even as one who owns it.  So how can I possibly expect those around me to really grasp what it is like to own, have, live with, bare with, and accept, being a Parkie?  A 49 year old woman, who did not beat the odds, that were in her favour,.  Yep....feeling like a "Parkie of one.."

My friends, most of whom are around my age, are seeing their children off to post secondary institutions, watching them begin careers, or contemplating starting their families.  All of this, while they, themselves my friends, are now peaking in their own careers, planning their road to retirement, and beginning to enjoy an active adult lifestyle free from the worries of raising children.  It has become the age of "our time".  But, me, Parkie of one, is already facing the next junction in life...retirement/health/financial directives of the aging.  I feel very distant from my own, and not fully accepting of the steps I am faced with.  It seems I have not just missed a step or two, I missed a whole staircase that led to the "middle age" floor, and landed directly on the "senior's landing.".

Being in a small town also adds to the loneliness.  Remember, I have had cancer.  Everywhere I went, everyone I knew, either had had cancer, or had someone near and dear to them, with it.  People were familiar with the chemotherapy and radiation treatments.  People were very familiar with, and could relate to what I was actually going through.  I was never, ever at a loss for a fully understanding, compassionate individual who could make me feel understood.  But, there are few women, under age 50, with Parkinson's Disease.

I have attended the local Canadian Parkinson's Society monthly meeting a few times.  Besides the 40 minute drive to and from, the topics and the "atmosphere" are generally geared to those Parkies who are further along in condition and age.  And, of course, the majority are men.  So how do I find someone who can really and truly identify with my condition?  So far, it has been online.  I joined an amazing website where I am able to converse, inquire and participate in a large variety of discussion directly related to what I am going through.  And....being a forum....is open 24/7.  This past year I did miss out on the yearly Parkinson's Convention in Montreal.  It was a huge symposium which more likely than not, will not be held in Canada again for a few years.

So, in my small town, in my small world...Parkie of One....is being called out, as I sit at my computer and bond with people from around the world.  My online family have become a life line to reassurance, information, and sometimes, even a good swift kick in the pants to set me straight.  In this cyber world...as much as we hear the negative aspects,  my online Parkie Family, have become a God Send.  They really get it....have it.....and are always there, 24/7.  Perhaps one day we'll have the opportunity to meet, and I will become Parkie of Many.  

My Motivational Video of Choice

Please take a moment to copy and go to this very inspiring video.  It is not specific to Parkinson's Disease, but is one that reminds me that I have to face each new day as a challenge, and drive to be.  UnSHAKEable


https://www.facebook.com/photo.php?v=600953526647674



 Choose to live with Parkinson's Disease, UnSHAKEably, by fighting the fight.  Have it, don't BE it!                             
                         

Invisible...Most of the Time

March 15, 2014

"You look great!"  Anyone would love to hear that, right???  Well, sometimes it is a difficult thing to hear.  Seriously....I know that sounds odd, but let me explain further.

Parkinson's Disease is often undiagnosed until signs of tremor.  Michael J. Fox first comes to mind when you think of this disease...his almost spastic like, uncontrollable movements.  What most people don't realize is that these, body tremors, are a symptom of high doses of the Parkinson's medication.  The medication, when first taken, in smaller doses, helps small tremoring subside.

So, if the medication controls the tremor, what else does a Parkie (my loving term for those of us with Parkinson's) contend with?  Well, a variety of ailments which are basically, invisible. They include:

• Bradykinesia:
• Rigidity:
• Postural Instability:
• Freezing: Freezing of gait is an important sign of PD that is not explained by rigidity or bradykinesia. People who experience freezing will normally hesitate before stepping forward.
• Micrographia: This term is the name for a shrinkage in handwriting that progresses the more a person with Parkinson’s writes. This occurs as a result of bradykinesia, which causes difficulty with repetitive actions. Drooling and excess saliva result from reduced swallowing movements.
• Speech problems, such as softness of voice or slurred speech caused by lack of muscle control
• Difficulty swallowing
• Sexual dysfunction
• Cramping 
• Excessive Daytime Sleepiness
• REM Behaviour Disorder
• Mood 

So back to my initial stance...when someone compliments me, that I look well, my insides tell quite a different story.  Currently, rigidity, is my enemy.  To explain it quite simply, it feels like my entire body has stiffened up at each joint.  Rigidity causes stiffness and inflexibility of the limbs, neck and trunk. Muscles normally stretch when they move, and then relax when they are at rest. In Parkinson’s rigidity, the muscle tone of an affected limb is always stiff and does not relax, sometimes contributing to a decreased range of motion. People with PD most commonly experience tightness of the neck, shoulder and leg. A person with rigidity and bradykinesia tends to not swing his or her arms when walking. Rigidity can be uncomfortable or even painful..

The pain and stiffness that I am currently battling are totally unpredictable.  I have tried to track whether it is worse after a day with exercise, a day without, after a day of activity, or after a day of very little activity.  So far I have drawn no conclusions.  It is day to day, and sometimes even hour to hour.  But the pain and stiffness is not something that can be seen.  Oh, I may look like a completely normal 49 year old when I am out and about...but don't let that deceive you.

The most difficult part of these invisible symptoms is that the people closest to you (those who live with you) are the ones who do not notice.  I have learned not to complain.  Hell, if I complained with every little ache and pain I have, I would be taken away in a straight jacket.  So, most of the time I try to deal with the pain myself.  That being, keeping on top of medication requirements, and using an ice pack or heating bag when needed, or finally, just trying to find a comfortable position to stay in.  I also have realized, to my own chagrin, that my daily walks, aided by a cane, help my hip pain dramatically.

Yes, there!  It is out in the open.....I will use a cane when necessary.   This is definitely  an issue of vanity for me.   How can it not be, when my 80 year old father lives with us, and is more active than myself?  But, the cane works very well on my daily walks around the block.  When I don't have it to rely on, I find that half way through my trek, I will be leaning to my right side, and my hip and leg are achy, and sometimes it may even  feel like giving out.  My next purchase is definitely going to be a designer cane. The narcissistic part of me has risen!

Much research has gone into the lifestyle suitable for PD.  Of course it endorses exercise (as my Movement Disorder Specialist told ms, "Use it or lose it"). healthy eating that is lean on protein (for the purpose of quicker absorption of the Levocarb) which, does in fact conflict with my Diabetic diet of the requirement of protein intake with carbohydrates. 

So, actually, the long and short of it is, if I cringe when you compliment how well I look, remember, I might just have to kick you in the shin. 

The Tattoo that Keeps on Giving

Endurance

                                                    
It must have been in the year of 2006.  My oldest son had been wanting a tattoo for as long as I can remember.  I had explained that a tattoo is forever, so if he was seriously wanting something on his body that would be difficult to remove, it should be  representative of something very meaningful to him.  So needless to say, he spent about a good year debating the merits of what he actually wanted.  He showed me what he had designed.  It was beautiful....it was a symbol that reflected the important people in his life, his father, mother, brother, grandmother (who had passed) and his grandfather.  Now, how could I argue with that?

So, the big day came and I went with him.  As they were preparing him, I was glancing through a collection of Chinese symbols and reading the meanings behind each.  The above symbol jumped right out at me...screaming...."This is you!!!  This is you!!!!".  Well, really, how could I argue with that?  The descriptive words were: adaptability; resilience; awe-inspiring; overcome adversity; overcome all difficulties.  As my son was prepped and ready to go, I leaped across the room with the book in hand, son probably thinking I am out of my mind, and said, "I want this tattoo.". "Endurance"  The young man looked at me, said, "I've done a lot of father and son tattooing, but this will be a first for a mother and son tattoo."  My son looked proud...until I pointed out that I wanted it positioned at the top of my left breast.  That was when my son shook his head.  I knew that meant, "Oh my God Mom...you are so embarrassing"....but deep down, I think it was a proud moment, in a weird sort of way, for each of us.

The reasoning behind the position of my tattoo was that my left breast had been removed through a mastectomy, and I had had it reconstructed.  I had beaten the pulp out of breast cancer, surgery, chemo, surgery...over the span of 1 1/2 years.  I wanted this tattoo to show what I was made of!  I wanted it where I could see it, and where it would be covered most of the time so that I would choose with whom I wanted to share it with.  So...in bold black and white Chinese symbols, Endurance, is permanently inked on my body.  

By that time in my life, I had endured a lot.  Hodgkinson Disease at age 21, diagnosed Diabetic (insulin dependent) , the death of my mother (at age 56, Leukaemia), and what I felt deep, deep within my soul...a marriage that was crumbling before me. Getting this tattoo would be a constant reminder that I had endured, overcome difficulty, and was resilient.  

That tattoo became my mantra....but little did I know, as much as I loved that tattoo, as much as it was part of me and my personal struggles, it would actually come to define the rest of my life.  Parkinson's Disease.  OK, let us review the words reflecting the inspiration of my tattoo:.  1.  adaptability  2.  resilience  3.  awe-inspiring  4.  overcome adversity, and 5. overcome all difficulties.  Wow.

Suddenly this permanent ink blotch described all the traits that I would need to carry me not just through the bad times....but now,  permanently affixed,  as part of the rest of my life.  You see, I have learned that one of the scariest words to hear is, progressive.  You can't fight that word.  You can't postpone the inevitability of that word, you can't change it.  Parkinson's Disease is p-------e.  Like a HUGE curse word! Progressive.  No significant awareness of ending.  Well...P---------E   THIS!!!  

I ponder whether, endurance and progressive are compatible.  I could endure the tough times I had been through....but will this endurance continue to carry me to a very unspecified, yet, very specific, lifetime of progression?  Does that make sense to anyone else??  I have been given challenges to endure and overcome.  My future with Parkinson's....can I endure what is not only a challenge, but something, that probably in my life time, will never be cured?  Something thats only guaranttee is to worsen?.  P------E  ME!!!!!

I can also look at my tattoo, its significance and see that, adaptability, is now the essential meaning   So heck...I shall keep my tattoo, it shall keep me inspired, and hey, just maybe, the tattoo really doesn't say, Endurance, after all.  I don't know Chinese.  Perhaps he really wrote "I'm a loser" or "Kick me".  I have faith that is says, Endurance.  Now, I just have to keep the faith that I can continue to, endure.  

In the end....Parkinson's Disease.....P-------E YOU!!  (That may be my next tattoo!) .
    

YOPD Video

Please take a few minutes to watch this video on Young Onset Parkinsons..
Educate yourself....and others....so please share.

 
www.youtube.com/watch?v=8Oc2F2Oa71k

It is the Guilt That Will Kill You....

Feb. 25, 2014





        

This sign/poster speaks the truth.  Anyone who loves a Parkie, knows it takes more than a village, it takes the whole tribe.  But, that is where a Parkie becomes riddled with guilt. I am only in stage II and am 49 yrs old, so I can really only speak for Young Onset Parkies when I say....it is the guilt that could kill you.

Before my formal diagnosis, I went through a traumatic divorce which plagued me with guilt as a mother.  Every day, every difficulty my children had, every time they even faltered, the pangs of guilt stabbed my heart like a knife.  At times, I felt it unbearable.  It is only recently that I was able to shed this weight, as I saw my two sons as successful, happy young adults, with so much drive and determination.......what was there to feel guilty about?  It obviously did not hinder them as growing into successful adults.  So, bam!, guilt gone.  Well, only partially.

Parkinson's progresses at different rates, per individual.  You will find that by the time you are successfully diagnosed, your world has already changed....you have already had to depend on someone.  For me, the fatigue was the worst, and most prominent symptom.  I had suffered through unusual fatigue several years prior to my tremor.  And it is usually not until a tremor is present, and sends out red flags, that a diagnosis of Parkinson's is even pondered. And yet, I suffered, and I don't use that term loosely, from daily chronic fatigue.  It became so prevalent an aspect of my life, that my grown children still recollect funny things they did or "got into", when Mom was asleep.

From the moment I woke up, in those early years, the fatigue was all consuming of my day.  I would have great difficulty waking up, and upon doing so, would be overwhelmed by the daily routine of life.  Getting ready, getting the kids up and on to their bus, followed by a 30 minute drive to work.  It was not at all unusual to find myself actually nodding off on that drive.  I would open the windows wide, crank up the radio....anything to help me stay awake until I was out from behind the wheel.  By 2:00 in the afternoon, I would feel like a zombie, going through the motions at work.  After work, I had to face that drive again...windows wide open and radio cranked.  I would walk into the house, greet my sons, and lay down for a 2 hour nap.  Awaken to make dinner, followed by another nap, and then once everyone was in bed, I would finally crash for at least 7 hours, until the whole schedule repeated itself the following day.  That was the first time, as I look back, that I took on the guilt factor.

By the time I was diagnosed four years later, the guilt was just embedded in my being.  I don't know if that was due to my Catholic upbringing, or my history of health issues.  But Parkinson's made me feel guilty, just by admitting I had it.  You see, even I know what is ahead for me.  Progressive, not curable.  I will likely end up in a wheel chair, incontinent, drooling, and difficulty communicating.  I will be totally dependent on, most likely, a nurse.  But realistically, I am looking at that hopefully in 20-30 years.  But, this could be the fate of any of us right?  But for a Parkie, it is not a chance, it is a definitive future.  So, I feel guilty about my circumstance, daily.  How long before I become a burden?  

Above all, I feel most guilty about the things my wonderful caregiver is already having to give up.  My daily schedule includes nothing between 7am-12:00 noon.  It becomes very difficult to plan anything.  Most of my outings wear me down after about 2 hours.  Will he tire of this reality?            ."pang"...guilt.

Funny, it is currently March 4th.  I began this blog post on Feb. 25th.  Ugh!!!  "pang!"....guilt.  I have struggled with this particular post.  It is the first one that I did not complete in one initial sitting.  And the more focus I put on the topic, guilt, the more things are jumbled in my brain...mix together...all the things I feel guilty about...all the things I can't do....all the things I won't be able to do....it is all tossing around in my mind, making this a particularly difficult post to write.

But..then again...it is the guilt of leaving a post on my blog, incomplete, that has made me finally sit down, and complete it.  Perhaps the guilt is there for a purpose.  The guilt keeps me going.  The guilt keeps the narcissistic me, at bay.  Wow....an awe moment!  What started out to be such a negative thing in my life, feelings of guilt, is what may in fact, be the single trait that keeps me focused on possibility, not finality.