Emotional Flatlining

                                     May 27/2014

Today is just a dreadful, woe is me, kind of day.  For the last week I have been feeling quite well overall.  So much so, that I begin to live in a dream world where I think, dang, they must have given me the wrong diagnosis.  Then, before I can bury these thoughts as reality....shocker!!!....PD rears its ugly head.

More than the tremors, rigidity, and fatigue...apathy is one of the worst side effects of PD.  The indifference, that I can not fight.  It is not depression.  I have experienced that...no, this is quite simply its own category  and a well documented part of Parkinson's.

Today I don't write with any real purpose except for the fact that I just want to sit and cry.  Now..anyone who knows me, knows I am a crier.  I can cry better than the best, at a funeral, wedding, or sad movie.  I actually have to laugh.  Having attended a funeral of an acquaintance's relative, I was mistaken as a family member because of the wailing condition I was in.  Or, there was the time we were watching a hockey game.  The broadcaster mentioned that one of the players had lost their brother in a car accident, earlier in the week.  Later in the game, this player scored and raised his stick up to the sky.  Instantly I was so touched by this gesture, the tears ran like a river.  My sons looked at me, shook their heads and the one said, Really, mom?!?!?".

But Parkinson's has taken emotion away from me.  I can't really say that I don't feel it.  I think I do.  Rather, I just feel flat lined emotionally.  Today for example, I am feeling very low.  Sad.  But I  actually don't feel it in my soul, I feel it in my head.  It is so very hard to describe.

Likewise, I don't feel happiness any more.  I know when I am happy, but my soul, or the emotional part of my being is just the same.  No highs, no lows....just, flat lined.  I told my Movement Disorder Specialist that I just wanted to feel happy again.  And when I say feel....I guess I really mean, experience joy in my soul.

I am very happy right now as my oldest son has an upcoming wedding planned, and has purchased a house with his beautiful fiance.  My youngest son is completing his studies, and will now be a full fledged Firefighter and Paramedic.  A mother could not be prouder!  Or happier.  And I want so much to feel that natural emotion deep in my soul, like a normal person.  But although I am beyond happy, the actually physical overwhelming , exploding feeling of happy, just sits there.  On the surface.  It never moves to reach my soul.

And today I feel gloom.  Not sad.  Gloom seems to be a much better word as you can picture an enveloping fog throughout my soul.  But I can not reach down to the grips of sadness.  This is where I begin to wonder about the brain and body connection.  I know I am sad, sadder than yesterday, but my emotional feelings are just there.  My brain tells me I'm sad, my body just sits there, and does not respond one way or another.

There have been times, though few and far between, where the emotion can rise from a 0-10 in milliseconds.  It is very scary for me, as I have always been a patient, carefree type of person.  So when this volcano erupts in me....I really scare myself.  I don't know how, in that very moment, to contain it.  I will cry, scream, and say things that I honestly did not know existed within me.  It will take awhile to calm back down, but it ends, as quickly as it began.  The only thing is....people are left standing in the path of its fury. 

So ends the week of deception.  And today I am again reminded that Parkinson's has me it its grip.  Feeling the rigidity again, the pain in my hips and leg, the spastic movements every so often that bring me back to reality.  Good days and bad days.  The one good constant in my life, I guess, is that through all the highs and lows of my day, I stay levelled,  emotionally.  Physically my body is fighting back the forces of Parkinson's, but emotionally, he has given me the gift of just being able to tune him out.  A gift....possibly to strong a word.  More like an unexpected note....not signed and sealed, but definitely, delivered.

Shaken, Not Stirred (trailer)

                                                           May 17/2014

In the lonely world of Young Onset Parkinson's, you are driven to find out as much as you can about the disease.  You want to reach out to people who completely understand what you are going through day to day...symptom to symptom.  And who better than another Parkie?!?!  But where are they???? 

When I was first diagnosed I looked frantically online for support.  And by some blessed chance, happened upon the site, Patients Like Me.  It not only offered me updated information, research, charts to complete, statistics and clinical trials, it welcomed me to an incredible group of Parkies in their Parkinson Disease Forum.  These people are scattered throughout the U.S, Canada, Europe, and Australia, but all come to this one meeting room, online, to support , enquire, understand, and befriend the only other people that fully understand the daily struggles a Parkie faces.

Now, horror stories of online chats and forums run rampid.  So, I was very skeptical about putting myself, "out there", or so to say.  But within days, the support and understanding was tremendous.  Who better to ask about the affects you are experienceing, than someone else who has also experienced it. I have clung to them for support, friendship, advice and piece of mind for a little over a year now.

I am branching out now.  I recently joined a group for Young Onset Parkinson's.  Hence, the video above.  Logging in for the very first time, I spotted this video, and was captivated.  I laughed.  I laughed, and laughed some more.  What a unique perspective, humbling, but also motivating.  It wasn't long before the star and producer of the video,  Alexander Tressor, came on and chatted amongst us. 

To speak of these online people as friends, is not that great a stretch.  Amongst our own, we can whine, complain, and someone will listen.  They will say, "Yeah, that happens to me....here's what I do....".  And often, like a good friend, will give you the advise you don't want to hear. 

I know in my mind, and I have been told by my doctor, to walk, exercise...blah ...blah blah..blaaaa....is what I hear.  Then a new perspective,  like that of Alexander Tressor, makes me laugh but also shows me reality...what I don't want to hear....exercise. 

So, as I conclude this entry to my blog, I will grab my walking stick, (ok....it's a cane, alright!!)  and make my somewhat daily...soon to be daily....walk.  Yuck!  So when people ask me where I get my inspiration to carry on...and I respond, "on line", you will know what I mean.  I have a whole new Parkie family out there who inspire me every day.  And hey....they are available 24/7....how great is that?!?!?

The Dreaded Stages....(.music...dumdum dum duuuuummmm)

 A person, upon hearing the diagnosis of Parkinson's, wants to know how long they will be mobile and cognitively sound.  Each person is affected differently, in scope, also in progress.  One knows the end result....it is progressive....and ....well,  one continues to imagine the worst scenario.  Having a guideline, or a timeline of sorts, helps the new Parkie prepare themselves, but also see that stages can last many years.  The stages below are summarized to give the Parkie a feeling of preparation for what is to come.  It is not accurate in terms of how long or how severe the stages may be, but rather a way to identify and compare oneself with the, "norm"

  I guess what I am trying to convey is the fact that once I came across this general outline of what to expect, I could finally come to terms with and yes....even accept...that I had Young Onset Parkinson's...and it wasn't the end of all my dreams and wishes.

Currently I waver between stage two and three.  It may change day to day, or week to week.  Some days good, some days bad, but hey...it can be a game of  "Guess Today's Stage",    And deep down, I believe I am still years away from stage four....so, life is good.  I mean, really, who else has their future laid out in front of them?  I can prepare, and while I am well, can take advantage of the time to do the things I want to do.  I don't have an immediate deadline, but at least I know that I have blocks of time ahead of me with which I can measure my priorities, or complete my Bucket List.  It is like a peek into my future...and...it's not all that bad.
 
HOEHN & YAHR, THE FIVE STAGES of PARKINSON'S DISEASE

*Stage One:
Signs and symptoms on one side only
Symptoms mild
Symptoms inconvenient but not disabling
Usually presents with tremor of one limb
Friends have noticed changes in posture, locomotion and facial expression

*Stage Two:
Symptoms are bilateral
Minimal disability
Posture and gait affected

*Stage Three:
Significant slowing of body movements
Early impairment of equilibrium on walking or standing
Generalized dysfunction that is moderately severe

*Stage Four:
Severe symptoms
Can still walk to a limited extent
Rigidity and bradykinesia
No longer able to live alone
Tremor may be less than earlier stages

*Stage Five:
Cachectic stage
Invalidism complete
Cannot stand or walk
Requires constant nursing care

This rating system has been largely supplanted by the Unified Parkinson's Disease Rating Scale, which is much more complicated.

CNN Special: Michael J. Fox Talks to Sanjay Gupta

                




Michael J. Fox has made the disease of Parkinson's familiar to a mass population.  Without his face, his name, and his foundation for research.....it would be a very unidentifiable, lonely world for the Parkie.  Early recognition and detection is difficult, but important in receiving the right medication to make one's life more comfortable.  Below I have posted 10 of the most familiar early warning signs. 


10 Early Warning Signs of Parkinson's Disease

No single one of these signs means that you should worry about Parkinson's disease. If you have more than one symptom, you should make an appointment to talk to your doctor.
Early diagnosis of Parkinson's disease gives you the best chance of a longer, healthier life.

*Tremor or Shaking
Have you noticed a slight shaking or tremor in your finger, thumb, hand, chin or lip? Does your leg shake when you sit down or relax? Twitching or shaking of limbs is a common early sign of Parkinson’s disease.
What is normal? Shaking can be normal after lots of exercise, if you have been injured, or could be caused by a medicine you take.

*Small Handwriting
Has your handwriting suddenly gotten much smaller than in it was in the past? You may notice the way you write words on a page has changed, such as letter sizes are smaller and the words are crowded together. A sudden change in handwriting is often a sign of Parkinson’s disease.
What is normal? Sometimes writing can change as you get older, if you have stiff hands or fingers or poor vision, but this happens over time and not suddenly.

*Loss of Smell
Have you noticed you no longer smell certain foods very well? If you seem to have more trouble smelling foods like bananas, dill pickles or licorice, you should ask your doctor about Parkinson’s disease.
What is normal? Your sense of smell can be changed by a cold, flu or a stuffy nose, but it should come back after you are better.

*Trouble Sleeping
Do you thrash around in bed or kick and punch while you are deeply asleep? You might notice that you started falling out of bed while asleep. Sometimes, your spouse will notice, or will want to move to another bed. Sudden movements during sleep may be a sign of Parkinson’s disease.
What is normal? It is normal for everyone to have a night when they ‘toss and turn’ instead of sleeping.

*Trouble Moving or Walking
Do you feel stiff in your body, arms or legs? Sometimes stiffness goes away as you move. If it does not, it can be a sign of Parkinson’s disease. You might notice that your arms don’t swing when you walk, or maybe other people have said you look stiff. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem ‘stuck to the floor.’
What is normal? If you have injured your arm or shoulder, you may not be able to use it as well until it is healed or another illness like arthritis might cause the same symptom.

*Constipation
Do you have trouble moving your bowels without straining every day? Straining to move your bowels can be an early sign of Parkinson’s disease and you should talk to your doctor.
What is normal? If you do not have enough water or fiber in your body, it can cause problems in the bathroom. Also some medicine will cause constipation too. If there is no other reason such as diet or medicine that would cause you to have trouble moving your bowels, you should speak with your doctor.

*A Soft or Low Voice
Have other people told you that your voice is very soft when you speak in a normal tone, or that you sound hoarse? If there has been a change in your voice you should see your doctor about whether it could be Parkinson’s disease. Sometimes you might think other people are losing their hearing, when really you are speaking more softly.
What is normal? A chest cold or other virus can cause your voice to sound different but you should go back to sounding the same when you get over your cough or cold.

*Masked Face
Have you been told that you have a serious, depressed or mad look on your face more often, even when you are not in a bad mood? This serious looking face is called masking. Also, if you or other people notice that you have a blank stare or do not blink your eyes very often, you should ask your doctor about Parkinson’s disease.
What is normal? Some medicines can cause you to have the same type of serious or staring look, but you would go back to the way you were after you stopped the medication.

*Dizziness or Fainting
Do you notice that you often feel dizzy when you stand up out of a chair? Feeling dizzy or fainting can be signs of low blood pressure and can be linked to Parkinson’s disease.
What is normal? Everyone has had a time when they stood up and felt dizzy, but if it happens on a regular basis you should see your doctor
.
*Stooping or Hunching Over
Are you not standing up as straight as you used to? If you or your family or friends notice that you seem to be stooping, leaning or slouching when you stand, it could be a sign of Parkinson’s disease.
What is normal? If you have pain from an injury or if you are sick, it might cause you to stand crookedly. Also, a problem with your bones can make you hunch over.

(The above information is from "Medronic"

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!!