Posted by: PD Warrior | February 20, 2016

116 Romans (Achieving Inner Piece)

No, it isn’t a “typo.” I meant to say exactly what I said – “achieving inner piece.”

If we are honest, we are all, one way or another, striving for that all elusive sense of inner peace. What I have discovered while walking down the path of life called Parkinson’s Disease, is that achieving “inner peace” is like putting a jigsaw puzzle together, only to find one of the pieces gone. We will never achieve “inner peace” until we find the “inner piece.”

When I was first diagnosed with PD, I felt as if I had just been stampeded by a legion of Roman soldiers, complete with full armor, replete with a battalion of horse drawn chariots, dragging behind it a bevy of wooden catapults, and a slew of wagons full of boulders to launch at my defenses.

I was, after all , one giant giant fortress, built from the cinderblocks of Parkinson’s, just waiting to be conquered…begging to be invaded…

Wanting to be besieged.

Needing to be ransacked and razed.

So I waited for the inevitable ruin of my life to come. And I waited…and I waited…then waited some more.

And as I waited, with great anticipation, for the doom of PD to destroy my castle, I began to realize something. I began to understand that the circumstances of my life were not a castle, but in reality an ice berg drifting in a vast ocean, and Parkinson’s disease was merely the tip.

You see, like most people, when gazing in awe, or in my case-fear, at the enormity of an iceberg jutting out of the ocean, I never stopped to think that the part of the iceberg protruding from the sea is nothing compared to what lies beneath.

It is never the tip of an iceberg that sinks a ship, but rather the invisible mass that lies just under the surface.

Finally I began to understand that Parkinson’s Disease was merely the proverbial tip of my own personal iceberg, and my life was my own Titanic, and if I didn’t do something about it, I was going to sink myself.

Once I realized that, I began to look at all the things that were lurking beneath the surface, and found they were far scarier than the Parkinson’s Disease above.

Yet, for everything that I saw on this road of self discovery, there was still one central piece missing.

So I searched everything that I owned, and I cursed God because nothing that I owned would fit where that piece belonged.

Then I searched through things I don’t own, hoping that I may purchase what I was missing. And I cursed God because I could not buy anything to fit in the hole in my life.

So I began to sift through the things I wanted, but nothing fit. And I rummaged through things I did not want, all to no avail. And I cursed God louder.

After a while I gave up. I had run out of places to search. I had turned every corner until there was nowhere else to turn.

Out of desperation I looked at the puzzle one last time. It was then that I saw the shape of what was missing. And suddenly I knew where to look.

It was the shape of a cross.

Something that could only be filled by Jesus Christ.

Jeshua.

I had found my inner piece, and with it came my inner peace.

My life has not been the same since.

I watched as Jeshua held back my personal Titanic with one outstretched hand, as he lifted my iceberg out of the water with the other.

Yes, I have Parkinson’s disease and whole lot of other nastiness to go along with it. But I find that matters less and less with each passing day, because I also have Jesus.

I have a testimony to tell, but this is not the time, or the place…at least not yet.

So, instead I will leave you with this:

“For I am not ashamed of the gospel of Christ, for it is the power of God to salvation for everyone who believes, for the Jew first, and also for the gentile.” Romans 1:16

May you all find your inner piece.

Posted by: PD Warrior | February 13, 2016

I’m So Tired…

All my life I have always taken pride in being different from everyone else. In fact, I despise being predictable. Yet I find, at least in some ways, that is exactly what Parkinson’s Disease has made me. Well, aside from the fact I actually have PD, that is.

Most people who don’t know me, don’t even realize I have PD. It is, after all, a disease for old people right? You know…it makes them shake…

And that is where I become unpredictably predictable.

First of all, there is oh so much more to the disease than “the shakes.” Although the most visible aspect of the disease are those annoying tremors, there is much more to it than that. In fact here is a list of things that most people who don’t have the disease don’t realize:

  • Loss of the sense of smell: One of the biggest symptoms of PD is a diminishing, and for some people total loss, of the sense of smell. Almost all of the Parkies I have come to know through the years have complained of this. In fact, studies have shown it is one of the earliest symptoms of the disease, often appearing months and/or years before any other symptoms. As for me? My nose has been shot for years, and although I can’t tell exactly when I noticed it, my sense of smell did fade well before I noticed any other symptoms. It is some thing that I would have never connected to the disease if I hand’t started researching things after being diagnosed. Turns out, those that are in the know, know the nose knows…or something like that.
  • Difficulty rolling over in bed: Or, as I like to call it, the “Turtle, Turtle” syndrome. I was diagnosed with Parkinson’s in my late 30’s, but have had trouble rolling over in bed since my late 20’s, especially when trying to roll from my back to my side or stomach. The muscles just don’t want to move, and in some cases it actually hurt to move in that direction. Most people with Parkinson’s, myself included, initially attribute this to signs of aging and treat it as something they will just have to live with. Myself, I thought it had something to do with a back injury I had during my teens. As it turns out, this is another “early sign” of PD, often appearing before the dreaded “shakes.”
  • Pain: Yes, Parkinson’s can be painful, and I’m not just talking about the emotional pain that comes with having a progressive neurological disease. I’m talking about physical pain. Something that I never knew, even with my training as a Registered Nurse, came with PD. That is something I had to find out the hard way. Some of my fellow Parkies describe it as an arthritic pain, some of them describe it as a “burning” muscular pain. As for me…sometimes it’s an arthritic pain, sometimes it’s a burning pain. And sometimes, late at night, all the muscles in my legs will contract at the same time. Hard! And that, hurts like the devil!
  • Young Onset: That’s right boys and girls, Parkinson’s disease isn’t just for old people anymore! To me, that is one of the most annoying stereotypes about PD. People think that I can’t possibly have it because I am too young. Well, guess what? You’re wrong! I can understand why people used to think that way. But as research has progressed, and more and more has been discovered about PD, it’s become very obvious that Young Onset Parkinson’s does exist. And with the advances of technology, i.e. computers and the internet for research and education (if it’s on Facebook it must be true) there is really no excuse for this myth to be perpetuated any longer. Especially amongst physicians – the most annoying comment I ever heard came from a doctor in my local emergency room where I was being examined. The physician threw the curtain back, with my chart in his hand and started screaming at me, “Why do you have Parkinson’s disease?”  He seriously asksd me that, and then went on to say “you only shake because it’s aside affect of your medications. You don’t have Parkinson’s!” Guess what doc? You’re putting the cart before the horse. I didn’t start taking that medication until 2 years after I was diagnosed with PD. So shame on you for being so assuming and ignorant!
  • Sleep disorders: I have known for years that PD has it’s own set of sleep disorders. Again, that’s something that isn’t common knowledge, and I have to admit I probably wouldn’t have known anything about it if I didn’t have it myself. Parkinson’s related sleep disorders run the gamut from insomnia to sleep apnea. And again, I have both. I knew about the insomnia, but what I didn’t know until reading a research article today, (Parkinson’s Disease Linked to Sleep Disorders, Sleep Disturbances) was that the sleep apnea was also part of the Parkinson’s symptoms. The good news is that the sleep disorders are usually easily treatable. My CPAP machine and a nightly dose of melatonin have become my BFF’s.

In closing, all I can say is that, between battling the myths, and dealing with the symptoms myself, I truly am so tired…especially of being predictable when I thought it was just me!

 

Posted by: PD Warrior | February 9, 2016

Here, There, and Everywhere…

I caught myself looking in the mirror the other morning, just staring, comparing myself to mental images, memories seared into my mind of my father. I’m not sure exactly what I was looking for, but I was looking none the less.

Oh, there were the obvious things, the familial traits. But that wasn’t what I was looking for. All families share genetics, those are the obvious things, but I was searching for something different.

Then there’s the Parkinson’s Disease. My dad came down with PD later in life, where I came down with it in my late 30’s. Toward the end he had the Parkinson’s mask that I am oh so afraid of getting, but again, that wasn’t what I was trying to find.

I was trying to figure out just how much I was like him on a personal basis.

I remember once, as a child, probably in my teens, someone told me I was just like him. And it mortified me! How dare they say that! We were nothing alike, at least in my mind, and I wanted nothing to do with ever being like him. Or so I thought.

It wasn’t that we didn’t get along, because we did in our own unique way. It’s just that I was me, and he was he, and we were two totally different people.

He was quiet and reserved, while I am loud and out going.

At one point, before the Parkinson’s, I was a fairly accomplished pianist. My father couldn’t carry a tune in a bucket to save his life, much less play an instrument.

He had his gardens, and I hate plants.

He was stubborn as a mule, and me? Well, okay, I’ll give you that one. I’m as stubborn as two mules. But that’s as far as the similarities went.

Or so I thought.

Then the other day I caught something in the corner of my eye as I was walking down the hall. It was my shadow. And for a brief second I saw my father in the silhouette I was casting. It wasn’t in the shape so much as it was the stance. It was him.

Do I do that often? Nah, couldn’t be. I smiled at the brief reminder of the man, then went on my way. Business as usual. That was, until I saw it again. Then I started to look for it. Once I started looking, I saw it again, and again, and again.

In everything…

From the way I walk – and granted, part of that is the Parkinson’s, but not all of it. To the things I say; right down to singing stupid little songs to my dog, just as he sang stupid little songs to the dog we had while I was growing up.

So yes,I found myself staring into the mirror, deep in thought, wondering just how much I am like my father. As I came out of my silent reverie, I found myself face to face with the same stupid little grin he always had when he was up to something.

Perhaps whoever it was that told me, all those years ago, that I was just like my father was right. And I’m okay with that.

My father passed away over a decade ago, and I find myself thinking of him often…and missing him. Perhaps I won’t need to miss him quite so much, now that I know I’m carrying a little part of him with me everywhere I go.

Posted by: PD Warrior | February 2, 2016

Who Needs A Doctor When We Have Google?

I remember the very 1st day of nursing school. The director of the Nursing department at my college gathered all the incoming 1st year students together in the auditorium, stepped up to the podium, and tapped the microphone. Once she was sure she had our undivided attention she snapped her fingers in the air. As if by magic all the lights in the auditorium went off and the room went dark, leaving nothing visible except the screen in the center of the room with a single powerpoint slide glowing on it for all to see. The message on the slide very simply said:

Welcome Future Nurses! The light at the end of the tunnel will be turned off in 3…2…

And with a second snap of her finger even the power point presentation went black, leaving us in a state of darkness that could only be described as deafening.

No one knew what to say, so we all said there quietly, saying nothing. As soon as she felt that all of our eyes had sufficiently adjusted to the pitch black, she turned all the lights back on – effectively blinding us all permanently. Or so we thought.

Once we could all see again, she got back up in front of the class and explained that was the 1st of 3 great truths that we would all soon come to understand. She went on to say that in nursing school, as in real life, there would be times when all seemed hopeless. Times when we would begin to think we would not survive. Times when it seemed as if we would never find our way out of the tunnel. She promised it would be then, when the tunnel seemed to be the darkest, that the light would come back on.

Then she passed out a packet of papers, face down, telling us not to turn the packet over until instructed to do so.  Once everyone had received a set of papers she explained to us that it was a pop quiz on the first chapter of the Nursing Text that we should have purchased a week ago and already started reading. Ready…set…go!

We all gasped, as none of us had bought our books yet. We were all going to fail out of class on the first day!

Slowly we all turned our papers over, and there, in big block letters was yet another simple phrase:

Just Kidding!

The remainder of the pages were covered with nursing/health related cartoons, pictures, and jokes.

Truth number 2, she said, was that laughter was not only the best medicine, but if it wasn’t already, it soon would be our best friend. She went on to stress that nursing was no laughing matter. That it was serious business. Deadly serious. So serious at times, that if we as nurses did not laugh, we would cry.

You see, as nurses we are put in situations that no-one but another nurse would ever believe, much less understand. Doctors have the luxury of writing the orders then leaving. Nurses have no such luxury. Once the orders are written we look them over, double checking them. Making sure the doctor did not make any mistakes, then correcting the almighty doctor when we find mistakes. (And we do find mistakes, because you see, even thought they don’t like to admit it, doctors are human too.) We stay with the patients after the doctor leaves the room. We answer the questions that patients and families were too afraid to ask the doctor. We translate the ‘medical speak” into terms normal people can understand. We provide shoulders to cry on. We wipe butts and tears with equal parts of ease and understanding. We see things that no eye was meant to see. We put our hands into places hands were never meant to go. We hold people as life begins, and we hold people as life ends.

And at the end of the day we survive by laughing at things no-one else understands.

Truth number 3 came on the last page of the packet of jokes. It was a simple statement. One that nobody took seriously at first, but one that turned out to be very prophetic. It said:

By the time you finish your nursing education you will have convinced yourself that you have every single symptom of every single disease you have ever heard of.

We all laughed the hardest at the one.

Turns out she wasn’t joking.

Turns out she was also right.

If left to our own imaginations, we all would have diagnosed ourselves with every single disease/malady/unfortunate condition known to man kind. The most important lesson is that not everything is what it seems. Not everything is “textbook perfect.” A lot of diseases mimic other diseases. Just because you might think you have some symptoms does not mean you have the disease. More often than not, a little bit of knowledge is a whole lot of dangerous.

So where am I going with this? How do the three basic truths of Nursing apply to Parkinson’s Disease?

It’s simple, really.

Truth number 1: So, you’ve been diagnosed with Parkinson’s Disease. There is no denying it, that sucks. And for a while at least, the tunnel will seem very, very, very dark. But eventually the light will come back on. Have patience. Have faith.

Truth number 2: Laugh. Just laugh. If you can’t laugh at your self, laugh at someone else. Laugh at me – I can take it. Laugh at something, anything! But laugh. Laughter is, after all, the best medicine. And if you let it, it will get you through like nothing else can.

Truth number 3: Google is not your doctor. Just because Google has convinced you of something, does not make it true. Google is a tool. Nothing more. Use it like a tool. Use it to expand your knowledge. Use it to answer some of your questions. Better yet, use it to help formulate questions to ask your physician. Make lists. Dig. Probe. Enquire. But in the end, trust your physician.

Oh, and be nice to your nurses – we’re the ones that keep the doctor from accidentally killing you!

Posted by: PD Warrior | January 30, 2016

Angry Young Man (The Long And Winding Road Part III)

In my post “The Long And Winding Road,” I talked about the anger that I have had to come to terms with over the past decade as I walked hand in hand down life’s paths with my new BFF – Parkinson’s Disease.

But, truth be known, “angry” doesn’t even begin to describe what I was feeling.

“Hatred,” doesn’t even begin to describe what I was feeling.

Self loathing.

Worthless

Emptiness.

And shakiness…not just from the disease, but from the anger. From the hatred. From the empty  self loathing worthlessness.

With every shuffling, shaking step I took, I found myself asking “why?”

Why me? What did I do to deserve this disease? Was I exposed to something? Did I inherit it from my father, who came down with the disease later in life? And if so, why did I contract it so young? I wasn’t even 40 when this train left the station.

Did I do something so horrible to make God hate me so much? Did I perhaps not do something I should have to make God hate me so much? Or maybe, just maybe, God had abandoned me. Maybe He saw the same worthlessness in me that I saw in myself.

That had to be it!

Or did it?

You see the God I know is no unjustly vindictive. The Jesus Christ that I know is not the embodiment of hate. No, the Savior that I know is just the opposite. The Savior that I know would not cause a disease, he would heal it. The Jesus I know does not see worthlessness in anyone. The Jesus I know shed his last drop of blood for me; gave his dying breath for me.

Those are facts that are just as true as this disease that has so graciously decided to come along for the ride.

So then why? Why me? Why now? why this disease? Those are all questions I asked, cursing God as I did. Those are all questions I asked, denying God as I did. Those are all questions I asked, begging and pleading with God as I did.

Eventually I began to see things differently.

As a nurse, I have been able to connect with my Parkinson’s patients on a more personal level, developing bonds with them that have not only benefited them, but have benefited me in ways I can not begin to explain. I have been able to explain things, using myself as an example. I have understood their angst, and felt their confusion, frustration and fears as their disease progressed.

Soon I realized the question “why me?” was no longer relevant, and has been replaced instead by the more pertinent question “why not?”

And this is only the tip of the ice berg. In God’s time I will give you my whole testimony. Until then, I leave you with this:

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.” 2 Cor 1:3-4

Posted by: PD Warrior | January 26, 2016

Okay, On To Plan B…

One of the most important things for people with Parkinson’s Disease to do is to exercise. It’s good for the heart, it’s good for the mind, and it is obviously good for the muscles. A good exercise program will help with the stiffness that plagues people with PD, and it will release endorphins the body’s natural anti-depressants.

My neurologist has been nagging me…er, I mean “suggesting” that I start exercising on a regular basis for years. To which I always respond with the obligatory head nod and overly fake smile, which both he and I know roughly translates into “who are you kidding? We both know it ain’t ever gonna happen.”

I don’t have the time.

I don’t have the energy.

But for the last several weeks, I’ve been forced to take a good hard look at myself. Besides having PD, I am also diabetic.

And stubborn.

And because I am a stubborn diabetic, I suddenly find that I now need to take insulin shots several times a day.

Now, as a nurse, I have no problem giving myself insulin shots. However, as a patient, I don’t particularly enjoy giving shots to myself. So, now I find I don’t have much choice. I need to start exercising, and lose a little weight. It will be good for my Parkinson’s, and with any luck I will be able to back off on the insulin.

But, as I have already said – I am stubborn. I enjoy exercising about as much as I enjoy giving myself shots of insulin. So, if this is going to work, I will have to get creative.

Now with the Parkinson’s you can’t just do any kind of exercises. You have to be careful, especially if the exercise requires any sort of balance. Treadmills are out. Or at least in my case they are, because of the balance, and the way I shuffle my feet from the Parkinson’s. Elliptical machines are out, again because of the balance. Swimming is out, again because of the balance – not that it requires balance to swim, but when I found out how much it would cost me to join the local clubs/gyms to use their pool I almost fainted!

That leaves my recumbent stationary bike, which although safe, is quite boring.

So I came up with a rather genius plan to make it interesting. I decided I would push myself to “go around the world in a year.” That would be fun! I could plot things out on a map, figure out where I had pedaled to every day, make up stories about the sights I would see at these places… That would be a blast!

Today I began to plan it out: the earth is approximately 24,901 miles…divided by 365 days in a year, that’s only  – you have got to be kidding me – 68.2 miles a day! I might as well just nod my head, and smile my fake smile now, because we all know that “it just ain’t gonna happen!”

It would appear that, not only am I stubborn, but I can be a little stupid at times too. Sixty-eight point two miles a day. What was I thinking?

On to plan B: Ten miles per day. At that rate I should make it completely around the world in 6 years and 10 months…give or take a month…or two…did I mention that I’m stubborn?

 

Posted by: PD Warrior | January 23, 2016

Fearing My Face! (The Long and Winding Road Part II

No, it’s not a typo – I didn’t mean to type “facing my fears,” I meant exactly what I said. “Fearing My Face.”

Although in reality, as far as I’m concerned, the two mean exactly the same thing.

You see, everyone with Parkinson’s Disease has something that they fear, whether they want to admit it or not.

For some people it is the uncontorllable movements – either the shaking of hands, limbs, head, caused by the disease. Or perhaps the shaking that for some people, comes as a side effect of some anti-Parkinson medications.

Others may have a fear of falling. Something that is certainly understandable, considering how many people with Parkinson’s that, like me, have an extraordinary ability to fall for no reason at all, seemingly tripping over molecules of air with all the grace and ease of the the Three Stooges and Keystone Kops all wrapped up in one tidy little package. My nickname isn’t “Mr. Clumsy” for nothing. And, as I so often tell my friends and family, I am living proof that Bumbles really do bounce!

Still others fear the “freezing” that so often accompanies the disease. I am not referring to the kind of freezing that comes from low temperatures. But instead the annoying, and at times debilitating sudden inability to move, where your muscles have frozen in time and space until something happens or someone comes along to help “break the freeze.” Luckily for me, I have yet to experience this personally.

Many fear the future in general. Will I be able to continue working? And if so, for how long? Or, how much of a burden will I become to my family? And then there’s the ever popular “which path will this disease take?” Will my symptoms progress quickly, like some people? Or slowly like others? All of which are questions that I have had through the years.

But what I fear most is my face. (I’ll pause for a minute to let the laughter die down.)

Seriously though, my face is a very discomforting thought to me. (Again, you can stop laughing) Not that Parkinson’s is going to suddenly change my oh, so ruggedly handsome facade into something hideous (I heard that!) But instead I worry that I will get what is commonly referred to as the Parkinson’s Mask. The inability to change facial expressions. The inability to smile.

You see, I use humor in everything. I don’t think I can let a second go by without a smart Alec thought, or a tongue in cheek response. Especially when trying to cope with my PD. After all, laughter is the best medicine. And, if I can’t laugh at myself, who can I laugh at? For me, the day that I can not smile will be far, far worse than anything else I ever face as I continue my journey down the “Long and Winding Road.”

Posted by: PD Warrior | January 21, 2016

The Long And Winding Road

It has been almost two years since my last post, and much has happened. I am older, albeit not necessarily wiser. I am weaker in some ways, yet stronger in others. I don’t have as much time to stop and think as I would like, and yet, sometimes I think too much.

My wife and I decided a week or so ago that we would try to make the journey back to NYC this April to participate in the Parkinson’s Unity Walk in an effort to raise awareness about Parkinson’s Disease, the effects it has on not only those of us who have the disease, but also those that are near and dear to us. And of course to raise money for Parkinson’s research.

And that got me thinking…

I don’t remember exactly when we made the first trip, it was within a year or two of my being diagnosed with PD, but I remember vividly what an eye-opener it was for me. I took lots of baggage with me that year.

No, not the kind you pack your clothes in.

The baggage I took was much heavier than that.

I took a lot of fear and anger with me. Fear of what the future would bring. Fear that I would not be able to support my wife and children for much longer. Fear that I would have to give up everything that I held dear in my life. Fear that my wife and children would resent me for the changes that we would all be facing. Fear that I was going to be mugged, stabbed and run over by a bus or subway train – it was New York City, after all – I had never been there before in my life, and truth be known, until then, had no desire to go there at all. I had heard that the Big Apple was noisy, dirty, rude, full of crime and all sorts of loathsome things. And we all know that everything you see on TV, read in the papers and see on the internet is absolutely true.

Then there was the anger. I was angry at life for giving me this disease. I was angry at myself for getting this disease. I was angry at God for letting me have this disease. I was angry at the doctors that misdiagnosed me at first (there is nothing really wrong with you, it’s all in your head, don’t you know you are too young to have PD?) I was angry at the people who felt sorry for me. I was angry at the people who didn’t feel sorry for me, and everyone else I met along the way.

I approached that first trip with the idea that I was going to hate NYC, and that I was going to be the only one there who had it so bad. I was going to be the only one there with struggles, and I was going to show the world!

I had no clue what I was going to show the world, but… I…was…going…to…show…the…world!

Wow was I wrong.

I did not show the world. Instead the world showed me.

First, I fell in love with NYC right from the very second I stepped off the plane. The sights, the sounds, the atmosphere, the people, the culture, the architecture, the art. Everything. Hook, line and sinker. The people were friendly. The city was amazing, and best of all- I didn’t get mugged or run over by any form of public transportation. As for my first NYC cab ride? Well, that’s a story for another day.

Then there was the Unity Walk itself.

Turns out, I wasn’t the only one in the world with Parkinson’s Disease.

Central Park was filled to the brim with literally thousands of fellow Parkies. And guess what? I didn’t have it nearly as bad as many of the people I came across. And, what’s more, it didn’t seem as if any of them were angry. I didn’t see any “woe is me” attitudes. I didn’t see anyone giving up on life. Instead I saw thousands of people united for a cause, electrified, proud to be there doing whatever they could do, celebrating that they could do it. And like the Grinch on Christmas morning, my heart grew.

That was almost 10 years ago, and as I said in the beginning, much has changed. Life has gone on. I’m a little older. I’m a little slower. I’ve learned a few things a long the way, forgotten a few things more. And that’s okay. With the help of my wonderful wife, my amazing children and my beautiful grandchildren, I have come to realize the most important thing of all:

“I may have Parkinson’s Disease, but it does not have me!”

That’s right, I said ask what your PD can do for you!

It’s so easy for me to get lost in the annoying, painful, uncomfortable parts of Parkinson’s that I often I forget that there is an up side to this disease. How can that be, you ask? How can there be an up side to shaking uncontrollably? To stumbling inconveniently? To fumbling for the right words? To mumbling when the right words are there?

The answer is simple: It could be worse.

PD is a nuisance, and at times an embarrassment, and a hinderance. But it is not a death sentence. It can slow you down, but it doesn’t have to make come to a complete stop. It can change the path your life takes, but that doesn’t make the scenery any less beautiful.

The key is to let go and trust. 

Trust your doctors, question them always; research what they have to say, but in the end trust them. Battling this disease is a team sport, not an individual event.

Trust your family and friends. You may not always like what they have to say. You may not like the fears they have, and you certainly don’t have to like the fact that they are afraid for you, but in the end trust them. If nothing else their fears, their decisions, their wants and needs for you are based solely on their love for you. And once again, fighting this disease is a team sport, not an individual event. 

Trust yourself. Within reason, that is. If you are like me, you probably aren’t willing to admit there are certain things you can no longer do. Your body knows, however, its limitations. Trust what it is saying to you. Rest when you need to. Adjust the way you do things. But never, ever let the disease get the best of you.

Those are all things that you can do for your PD.

Now, what can your PD do for you? Any thing you let it.

I used to consider myself a decent artist. I could draw, I could paint, I have even sold some of my art. I can no longer draw or paint, at least not up to my standards. But I soon discovered another outlet for my creative instincts – woodworking. With this new found hobby I can take my time, go as fast or as slow as I need to, and with a little luck and patience I have been able to create some things that I would have never even considered if it were not for the PD pushing me down that road.

I have discovered a passions for writing – first as an outlet for my frustrations, then as a way to help others. Heck, I even wrote a novel. Granted, I haven’t been able to get the book published, but I wrote it none the less.

I have discovered New York City! Well, I didn’t really discover it. I mean it’s always been right where it is, but I discovered that I really like the “Big Apple.” Quite an accomplishment for the like of me. Normally I don’t like big cities. In fact, I avoid them like the plague. Give me a pack of matches, a pocket knife and drop me in the forest and I will be a happy man. Put me in the middle of a booming metropolis – not so much. Yet I pushed myself to go to NYC when I was first diagnosed with PD to participate in the Parkinson’s Unity Walk, and found out that it is a magnificent place. I was able to go to the Metropolitan Museum of Art, see the Statue of Liberty in person and attend a broadway play. Again, all things that I would have never done if not for this disease. Heck, I even got to rub elbows with the likes of Michael J Fox. Well, we didn’t exactly rub elbows…more like his bodyguard shoved me out of his way, but hey- it’s a start!

So, what can PD do for you? Anything you let it.

 

Posted by: PD Warrior | April 23, 2014

Good To The Last Drop

Nope, I’m not talking about coffee. In fact, I hate the stuff.

What I am talking about is my clumsiness. If I’m not tripping over the lines in the floor, I’m running into something. Or, in today’s case, dropping something. Oh, who am I kidding? It would be more note worthy if I didn’t drop something.

Most of the time it doesn’t bother me. I have, for the most part, come to terms with my alter-ego “Captain Clutz.” But some days, like today, the simplest disasters send me right over the edge. You see, when I am doing something like unloading the groceries, or carrying my dinner plate, a bowl of grapes and an overly full glass of milk into the living room, I absolutely hate to make more trips than absolutely necessary, and I am way to stubborn to admit that, even if I didn’t have Parkinson’s, balancing several items while trying to avoid stepping on the dog and cats while traversing the obstacle course of furniture in my house is not really a good idea. Add a long day at work into the picture, coupled with not really feeling well, and the situation was a recipe for doom right from the word go.

So you guessed it – one trip into the living room with everything I needed for a not so well balanced meal (pun intended) turned into multiple trips into the living room with paper towels, dish towels, cleaning agents, and more towels…and more towels after that.

Luckily my wife was there to softly remind me that “It’s okay.”

Over the years I have come to realize several things:

  1. As long as I have PD, I will continue to trip, stumble, shake, fall and drop pretty much everything I touch, and there isn’t I thing I can do about it.
  2. The world isn’t going to end just because I trip, stumble, shake, fall and drop pretty much everything I touch, no matter how mad I get or how big a fit I have.
  3. PD is never going to leave
  4. Thankfully, neither will my wife.

And as long as that last one is true…well, then it’s all good.

I love you Stephanie!

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