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.