Larry King Live :Michael J. Fox and Parkinson's -Part 1/2

Young Onset Parkinson's Disease                                                       April 25/2014

Optimist....Optimism.....Michael J. Fox has even coined himself, The Incurable Optimist.  This is quite evident in this Part 1 of 2 video interviews with Larry King.  Without Michael J Fox, how much would we really know about Young Onset Parkinson's???

 When I tell people that I have Parkinson's Disease, they often stare at me, in a manner which tells me  they are thinking, " Well....I have heard of it......haven't I?".  But if I follow it quickly with, "You know, Michael J Fox..."., I always get a resounding acknowledgement that yes, they do know what it is.

Michael J Fox, in this interview, discusses dealing with Young Onset Parkinson's since the age of 29.  He describes how it affects his everyday routine,  using the example of brushing his teeth.  These little common rituals that we take for granted are things that Parkies dread on the down days, but on better days, can find the humour in it.  And humour is what Michael J Fox is known for.  He does briefly touch on the fact that upon diagnosis, he was not that funny, or optimistic, rather he buried his fears in alcohol.

Here is the Poster Boy for Parkinson's Disease.  At 29....he was living a lonely existence.  After all, it is he, himself that brought awareness of, research in, and funding of the Disease.  He admits, it took him 7 years upon diagnosis to be able to discuss it openly.  And thank God, that he could.  Where would we be without him??  Personally, because of the attention he has drawn to this disease, I am so much more enlightened and confident as a Parkie.

"Don't wish for a lighter load, wish for broader shoulders."  Michael J. Fox.

Enjoy this video clip.

                                                                                                                      

Parkies....Carry On

                                                                                                                                                                             
April 11/2013

I belong to this incredible website for Parkies, which offers a forum where experience, research and knowledge is exchanged in a way in which only someone experiencing the same, really "gets" you.  They are young, old, from Europe, Australia, US, and Canada.  But the common denominator is that each is struggling with their diagnosis, Parkinson's Disease.

A member will discuss an issue of concern, and many will respond.  Some ideas are based on research, while the most beneficial, are based on experience.  At times it can be a warm spot to land, while other times you must distance yourself for a day or two.  These members become friends.   You feel this incredible connection as you struggle with, and help each other through  issues of the day.

Most recently, a member posted about the positive things he has experienced living with Parkinson's.  Following suit, other members added to the list, and before you knew it, we were all finding positive outcomes to our negative experiences.  The following day,. another member posted his song video that inspires him...and likewise, many followed with the links to their song of inspiration.

When I sat down to blog today, it was with the intention that I look at having Parkinson's from a positive perspective.  Until we went through this in our forum, it was a very hard thing to really contemplate.  But supporting each other and adding to the list...some ideas practical, others very humorous, made us look within ourselves and draw out positive, only, thoughts.  Don't people pay through their teeth to experience this exercise with a Psychologist????  My list begins as such:

*being a Parkie allows me to nap without excuse.
*see my future and be prepared for it
*take a forced, yet early, retirement
*be able to claim my own personal chair (my leather recliner!)
*have an excuse for forgetting
*someone else will always insist on pouring the drinks, or passing the gravy
*allows an excuse for me not to attend
*makes people think you look great because they expect the worst
*others volunteer to drive
*will eventually have the best parking spots (handicapped sticker)
*the only schedule I am bound to, is that of my medications
*if the weather outside is frightful, I can just look out at it

The list was not to make light of my disease, but to push my daily negative struggles aside and say, "hey, I've got it, make use of it".   The video, Carry On, just kind of sums it up for me.  Through all the struggles, there are the bits of light that I should allow to illuminate....however sporadic or small.  But always, always...Carry On.

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.