What Do You Do When You Have Young Onset Parkinson’s - Fighting Back, Part 1

So you get the diagnosis, Parkinson’s… but wait, I’m not old.  How do I have PD? The neurologist explains to you that they’re not exactly sure how; there could be several factors. Your reaction is sad, angry, confused, numb, all of the above which is normal when someone tells you that you have a disease and oh by the way we just don’t have a cure quite yet for it. By all means take a moment to feel sorry for yourself and take one more moment to feel bad for your spouse and loved ones. They will be affected by this, too.

"Now it’s time to get to work," is what I told myself.  What is in my arsenal? What do I have at my disposal to fight and live the best life I can while research is being done to find a cure?

Exercise and nutrition seem to be a must as more and more studies tout the benefits for those with PD (consult your doctor before starting any exercise program). Educate yourself so you can be proactive in managing your own health care. Help your doctors help you. Keep a log or journal about what you are doing, extra supplements you might be taking, sleep patterns, exercise, diet, etc. Meditation and a positive mind set can help deal with PD mentally and emotionally, as well as memory games to help with cognitive abilities. You could get involved in local support groups, or participate in clinical trials to help with research which will help in the development of new therapies and one day possibly a cure. Write a blog and reach out to the PD community so we can share stories and support one another as we fight this together. Remember YOU ARE NOT ALONE!              

      

So what are you going to do? You can take the woe is me approach or you can become determined. We can draw the line in the sand and become unwavering, relentless, never say quit, fight for every inch and moment of your life, determined. It won’t be easy.  Parkinson’s is relentless, but we need to be, too. I have chosen to LIVE with PD and not merely exist. The New Year is coming and with every new year, hope.

In part 2 of this series, Fighting Back - How to Start an Exercise Routine.

I am Pat Younts and I Move to Live.

To give and be thankful

Our American holiday of thanksgiving is a wonderful day of food and celebration that brings family and friends together. We have this special day to remind ourselves to be thankful for what we have. It reminds us to live a life of addition, not subtraction, for what has been given to us. But what do we really have? Possessions come and go; fortunes can be won and lost. As Parkinson’s makes my life challenging and things are slowly taken from me, the things that I realize I truly have and am so very thankful for are my family, friends and since the day cannot be promised, I have this moment. Life is made of moments and the people you spend them with. My moments have become precious to me. I have been so very blessed for the people in my and my family’s lives and for your love and support.

I wish that the rest of the world would share this day with us, and that we all would live our moments free of anger and judgment of others so there can be peace on earth and good will to all.  

 Wishing you the happiest of Thanksgivings, Pat

I am Pat Younts, and I Move to Live

 

 

The Turtle and the Parkinson's Man

My dear friend and long time client Karen was giving me a ride home from our Thursday workout. As usual we were chatting about important subjects like world peace and global warming or was it sports and bad drivers? At any rate homeward bound we were when Karen all of the sudden noticed something moving on the side of the street as we passed it.  If you have ever golfed with Karen, you know that she has eagle eyes and nine times out of ten she will find your golf ball no matter where you hit it, most likely attributed to her being a phenomenal photographer.  A quick glance in the rearview mirror confirmed that it was a turtle and according to my mirror that turtle was “closer than he appeared” and walking out towards the street. Our friend the tortoise was heading towards impending doom. “Hold on, I’m flipping a U.” Karen quickly turned the car around and headed back. Would Mrs. Eagle Eye and Captain Parkie reach our shelled friend in time or would the dastardly commuters make turtle soup out of him? Stay tuned to next week’s episode………

Okay, I won’t make you wait. One more quick U turn put us in hot pursuit of the soon to be victim. “Quick! Get out and grab him!” Karen shouted. “I got him,”…..wait…. she said quick. Captain Parkie lacks that super power. The irony of it all -- a do-gooder with Parkinson’s chasing a turtle, but I had no time to contemplate things. A life was in danger. Using my Jedi powers I raised my hand and brought the oncoming traffic to a halt or was it just the universal gesture to stop? Still no time to think. Could I get there in time? I want to point out that he clearly had a head start, but with a burst of speed, actually a slow shuffle, I caught our green necked friend and answered the age old question of who is faster a man with Parkinson’s or a turtle, nuff said. Our good deed was done as our grateful friend headed back towards the stream and back to his family not knowing exactly what occurred because it all happened so fast.

My friend Karen is a kind soul. She is her brother’s keeper

and the finder of lost children…….and golf balls.  My family and I are blessed to have her and her husband Mark as our friends.

 

I am Pat Younts and I Move to Live.

Steps to Throwing a Wedding

Step One - You need a bride and a date

“We picked a date,” my son and now daughter-in-law told us. Great! My wife and I were overjoyed that my son would marry his high school sweetheart, Samantha. If we could pick our child’s soul mate for him, we would have picked wonderful and beautiful Sam.  I do not have the words to express how happy we are that she is part of our family. She is all a mother and father could wish for their son.   

Step Two - We do not need a wedding planner?

For everyone out there who has done this themselves you know the monumental under taking that it is, but with a can do attitude and a year to plan, how hard could it be? We defiantly boasted….Fast forward to the night before the wedding - As we know, Parkinson’s for me tends to magnify my emotions, thus the overwhelming urge to curl up into a fetal position and cry when I saw how much we still had to do. Don’t cry at the wedding, I told myself and I was going to start a day before.  

Back to present time….and I quote myself, “we could put this together in a month if we had to!” Other equivalent boasts throughout history:  Waterloo, that sounds like a great place for a big victory by me. Maybe put up a nice bed and breakfast after we win, you know, retire.  Napoleon

Step Three - You need to plan

The door on my office should have said War Room, and we were at Defcon 2.  I think that’s bad. At least it is in all those movies I watch and if not, it was definitely fourth and goal, the bases were loaded, a must make free throw,  and we had to pull our goalie as it all came down to a free kick to make that 20 foot putt to win the game. That’s what it felt like….every day of that week leading to our joyous event. My son, the calm rock he is, was steady and supportive as his bride-to-be thought of one more thing to add in as my wife would interject her own thoughts on the subject thus extending the length of time that I stood there my Parkinson’s tremors steadily increasing because a moment earlier I heard those frightening words, “Could you come in here? We need your opinion on something.” Actually a few of my ideas did make it through into the plans and in the distance there was hope like an island to a survivor of a shipwreck. I would just have to swim past all those teal and blue sharks that happened to be the wedding colors.

Step Four - You need family and friends

I always thought a test of friends and family is when you ask them if they could help you move. I was wrong. The measure of your friends and family is when without hesitation they answer yes to the questions: Can you perform the ceremony, have the rehearsal dinner at your restaurant, make the cake, play the violin, sing, DJ, photograph, video, decorate, transport, set up, and take down?   I have found that the one thing about Parkinson’s is how much I count on my friends and family. It simply amazes me at the love, kindness, generosity, and support that they give. This post is a thank you to all the wonderful people that made that day so special. We love you all so very much!
    

Golf, Parkinson’s, and Our Friend Jim

You walk towards the tee box, club in hand, your conscious mind telling you to be confident as your subconscious mind tells you different. You tee the ball up and it sits in front of you perfectly still. You look down the fairway in the distance. A flag stands defiantly, protected by sand, water and trees. You step into nature's arena. It is both polite, beautiful and at times unforgiving, like the siren’s song of Greek mythology. The course beckons you to her impending hazards. Golf is a game of self-mastery, strategy, and precision, executed one shot after another until the odyssey is complete as your ball rolls gently into the hole.

Despite Parkinson's Disease, the game of golf still gives me great joy to play. It is a wonderful way to spend an afternoon. The game teaches me many lessons by the people I play with and have played with. One of those lessons was taught to me by an old golf mate, Jim. A few years ago my dear friend Karen who I regularly golf with met me for our usual Friday afternoon on the links, but on this particular Friday Karen said we would be joined by a friend of hers, Jim. She explained to me that Jim worked out at the same fitness facility and was recovering from some health issues. He had not golfed in over a decade and wanted to get back into the swing of things so to speak. I knew that Karen being the kind soul she is probably had a great deal to do with encouraging Jim to get back into the game.

It was our usual Friday tee time at our local golf course. Jim pulled into the parking lot. Karen said she was going to help him with his bag. I was not sure why at first until I saw him get out of the car.  Jim was missing a leg from the knee down. How great that despite this challenge he was willing to give golf another try. Jim approached me hand extended with a big smile on his face. I would come to find as time went by that this was how Jim viewed life, with a smile. The round started and we were all curious to see how he would manage to play, considering his age, a long lay off, and an artificial leg. Our curiosity was answered as one shot after another went straight down the middle, not far but straight. We were all amazed. In between Jim beating us on what seemed to be every hole, I learned more about our new golf partner as we played. The subject was brought up about his leg. I assumed an accident of some sort was the reason for the missing appendage. Jim explained that he was missing his leg because of diabetes and if that was not enough, there was his liver transplant, and the reason he was working out….to get his strength back from the chemotherapy he went through because of the lung cancer that was in remission. If Jim had a dog that ran away, he would have had a great start to a country song. All the rounds of golf that Jim played were always filled with a tale of a great shot he made or something funny he said or did. On one particular round of golf at a course that was by a small airport that hosted vintage plane shows on the weekend, Karen told me Jim was staring at the planes fascinated by the sight of the relics flying so low as they passed over head that he never took his gaze off them even as they went behind him. Karen looked back to comment about the sight and burst into laughter when she saw Jim laying on the fairway, falling backwards off of his artificial leg, smiling, laughing, and watching as they flew by while his leg stood there in the middle of the golf course.

I would always ask Jim how he was doing.  “Pat, I would complain if I thought anybody would listen,” he would tell me as he chuckled. Jim rolled with life’s punches. He could have complained,  but didn’t. He played the game for the best reason - - to spend time with friends.

A few years later the cancer came back. Jim golfed as his strength allowed him and always with a smile. Karen gave him this great game back and us the privilege of his friendship. She honors Jim by sponsoring a hole in his memory at our golf tournament. I know he would have liked that. I have learned golf is a game best shared, not taken too seriously, and passed along to others.

Thanks Jim for the best golf lesson I ever had.

 I am Pat Younts and I Move to Live.

Fearless in the Face of Parkinson’s

Each day I wake up and defiantly get out of bed, ready to push my disease out of the way and go forward, not letting any of my limitations slow me down. With my vanity still intact and a can do attitude I embrace each day. That sounds pretty good, doesn’t it? Images of bounding  out of bed, jumping into the alligator tank for a quick wrestle to start the day before chopping wood to heat the stove to cook a breakfast of - you guessed it - alligator steaks. Actually I have a gas stove; chopping wood sounds like a lot of work and not the best idea for someone with PD to be swinging sharp things. As for the alligator, my wife says I can’t have one. For someone with Parkinson's, the simplest things can feel like an epic struggle: getting out of your bed sheets in the morning and dressing yourself can feel like wrestling an alligator; brushing your teeth in the morning can sometimes take as much effort as chopping wood; and preparing alligator steaks would be like putting creamer in my coffee and trying to hold my spoon steady enough so most of the cereal goes in my mouth and not on the kitchen counter. The smallest of things can seem like an epic struggle for many of us with PD. So what is fearless?   

Fearless for me is still doing the small things, things that I would not have even given a second thought to before Parkinson’s. It is not running a marathon or climbing a mountain or biking 100 miles or doing those epic feats of inspiration by those special few who are battling Parkinson’s. I am talking about what other people do every day - open the toothpaste, carry a drink across the room without spilling most of it, getting my keys out of my pocket or for that matter anything out of my pockets.  

I was given some wonderful gifts over the holiday season that you would consider to be prohibited on the PD gift list if such a list existed - an iPad and a smartphone. Why would I get something that requires me to use a steady finger that I no longer have? Because I can still manage to work around my PD to do the things I want to.  Sure it’s frustrating and slow like the thought of teaching my wife to play golf. It requires patience and being just a little bit fearless. Now I had that moment of parkey doubt, thinking with the sensitivity of these devices I am never going to get any use out of them. As it turns out, I wouldn’t know what to do without my iPad and smartphone. Both are tools that I use every day. Now for me using a handheld device can be very similar to wrestling an alligator, a bit all over the place, so I have learned to make things manageable.  I set my phone down when I use it. Speakerphone and voice command features come in quite handy. Holding the phone up to my ear or getting it out in time to answer it seems like...well, you guessed it, more alligator wrestling. I put my iPad on a stand for ease of use. Taking photos or video is not so easy, but I have found a great tripod accessory that will make that much more manageable. Problem solved.

This disease can make the simplest things feel like we are wrestling alligators, so what do we do? Just stop doing the things we normally used as Parkinson’s makes them more difficult? The fear of finding out you no longer have the ability to do something is a stark reality we live with.  For me, just giving up as things become a challenge and accepting defeat instead of finding a way to work around them for as long as I can is unacceptable. Now…. if I can just keep… my computer… mouse… steady…. enough to hit….there published.          

I am Pat Younts and I Move to Live.

Hope is not a plan with Parkinson's

Hope is not a plan, but every great plan gives you hope. Someone is taking a big swing at you. Do you hope they miss and stand there or do you take action and duck? Do you hope to win the lottery or do you…..wait that one is just hope.  A speeding car is coming at you. You don’t hope it stops. You move.  Those elaborate traps the bad guys always used to try to kill James Bond, you know the ones -- they always left him in the room alone and hoped it would work out. 007 did not hope the laser would stop. He planned ahead by wearing a watch with a laser or did it have a super magnet, no…. it was a girl he charmed; actually it might have been all three.  That’s why we have so many sequels, Bond always had a plan.

This brings me to the story of 300 hundred Spartans who got together while the rest of their country stood around and threw a big party to honor the local deities as the largest army in the world was coming to conquer their small city state and steal the Spartans secrets to perfect abs and chiseled physiques. Okay, you know what I am talking about if you saw the movie -- or it just might have been a little empire building by the Persians. Either way King Leonidas was not going to sit by and hope that the armies of Greece would have enough time to get mobilized and do something about it. He took 300 of his best warriors and headed out to slow down the oncoming Persian juggernaut. The plan was to get to a place called Thermopylae, “the hot gate”, a small pass where the overwhelming numbers of the Persians could be managed and valuable time could be bought. Now for all you history enthusiasts there was a very important naval battle being fought by the Athenian politician Themistocles and helping out the 300 were 700 Thespians and 400 Thebans contributing to the effort.  The Spartans fought together shoulder to shoulder, carried big shields and long spears. Their near unstoppable phalanx formation along with six pack abs and a win or die trying attitude made them the wrong Greeks to have picked a fight with. The Spartans were better trained, conditioned, and worked as a team. That’s how they got the job done.

Being proactive was the key to slowing down Persians, not sitting around and hoping things work out for the best. It’s easy to do nothing and hope someone else will get things done. It’s easy to be compliant, to accept your station in life, and simply exist. Now do not misunderstand me, I am a firm believer in hope. Hope is a positive state of mind. Hope is what gets me up in the morning and allows all of us to think of a better future. We need hope.       

Parkinson’s is our Persian army. It is undefeated, it seems unstoppable, and it’s coming our way. We need a plan to slow down its effects until help arrives. I diet, work out, meditate, everything I can do to slow the effects of PD until a cure is found. I take a lesson from the Spartans. When facing overwhelming odds, get to a manageable place until help arrives. How did it work out for the brave 300? They bought precious time Greece needed to hand the Persians an epic defeat. We all hope that we will do the same to Parkinson’s. It also led to a great movie that inspires this Parkie to fight a little harder every time I watch it.  

I am Pat Younts and I Move to Live.

(Remember always consult your doctor to find the best plan for you.)   

Valentine's Day and Parkinson's

They say love is blind, love is unconditional, “All you need is love”, sang John Lennon. I could go on but I think you get the idea. It is Valentine’s Day, the one day of the year where we pay tribute to the greatest emotion the world has to offer, love. What would you do for love? What price can you put on it? Untold fortunes have been lavished upon the altar of love in order to show the extent of one person’s unrelenting affections for another. Love has inspired an artist to cut off his ear and a king to launch a thousand ships, songs to be sung and poems to be written, and chocolates to be put in a heart shaped box.

For me, love is a wife who can only see the man she married those many years ago -- as he was, not the shaking hands or the slowness of his body. Her love is my shield that protects me and the armor that gives me comfort. Her touch lets me believe I am still the same as I always was. After all these years, it is her love that inspires me and keeps whole.

For all those who still love all of us who fight life’s adversities whatever they may be, Happy Valentine’s Day!

I'm Pat Younts and I Move to Live.

Fighting Parkinson's

Rocky runs up the long rows of steps, the steam of his breath shooting into the cold Philadelphia air. His gray tattered sweat clothes soaked with perspiration had no sponsor’s logo on it, no media there to impress, and no fanfare cheering him on. There was nothing there to tell anyone what was driving him to push his body to its physical limits. When he reaches the top of the steps, he turns raising his hands triumphantly. He had not fought Apollo Creed yet. The victory he was celebrating was over himself.

The biggest opponent we normally face in life is ourselves. Overcoming fear, doubt, our own insecurities, and inner demons, add to that the doubters and naysayers and unforeseen obstacles, victory in life can often be elusive. Rocky was a long shot, a down and out club fighter whose best years were behind him, a true underdog. How many times in life do people find themselves the underdog?

At some point in all of our lives we all have been there, the chips of life stacked against us. Where does our motivation, our inspiration come from to meet this challenge? What keeps a person on that path to persevere over life’s obstacles?

It would be wonderful if we could hear inspirational music every time we needed that extra motivation to stay on track, to fight harder. Rocky heard that music clearly. It told him to wake up and drink the eggs, to get out and run before the sun had risen. The music he heard was a symphony of self inspiration that was performed in his own mind over and over again pushing him to face his challenge. I can hear that inspirational score, the wonderful piece of music composed for the film. It has been played time and time again in countless sport venues when a team is down, telling them it's time to reach inside themselves to push past the fatigue, past the fear to do what seemed impossible and overcome adversity.

We fight Parkinson's every single day, a test of our will, a championship fight for many simply to make it through that day, but we fight that fight. Like Rocky we need to wake up and hear that music, a loud symphony that inspires us. When do you decide that you will hear the music and do what is not easy, but necessary to take control of your life? What is your plan, what is going to make you reach down day in and day out to reject failure and strive to only accept success in anything you do? How do you get up after life knocks you down? You have to want to. The will to fight is borne in each of us. The question is what are you going to do about it? Will you fight for your wife, husband, children, family, friends or simply to let someone else know you are not alone in this, that there are many just like you who refuse to take a knee and be counted out? Ding…ding…life’s bell has rung, come out fighting!

I'm Pat Younts and I Move to Live.