Someone to watch me, Parkinson's Disease on video

Parkinson's Disease requires ME to tell my Doctors how I am doing and I need someone to tell me WHAT I am doing.  Sound confusing?  It isn't really.  I know how I FEEL but don't know how I LOOK, unless I fill my house with mirrors or set up cameras everywhere and that would be a humorous reality show. 

It sounds crazy, but except to comb my hair in the morning, I never SEE myself during the day. I didn't have a clue what I really looked like, until this weekend.  I set up video camera and recorded myself doing my normal things.....using computer, watching TV and walking.  Boring stuff.  Until I watched them. 

I never knew my right foot does a weird snake like dance in the air when I try to do anything with my right hand.  I had no idea I was walking with my arm flailing outward.    I know my arm gets jerky in the evenings, but didn't know the amount it jerks depends on the intensity of what I am watching on TV.  Criminal Minds?  Jerks like crazy.  An old black and white comedy?  Very little.  I had no idea I was sitting there watching TV every night with my mouth hanging open and my head cricked to one side.

It was scary seeing myself, and also educational.  According to my Wonderful Husband, I don't make these movements all day, just at certain times, and some are worse than others.  He says sometimes I sit quite still.  It looks painful, but isn't, so at least that's one thing to smile about.  The other plus is all the extra calories I burn. 

PS: I don't have these extreme movements all day long, just when my medicines are at their peak.  YES, these jerky movements are side effects, only the last one, mouth hanging open is caused by the PD.

You can find all my videos on my YouTube channel:
https://www.youtube.com/user/ParkinsonsHumor 

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

Shake, shake, shake - Parkinson's Disease Tremors

I remember seeing a group of men with musical instruments at a Bluegrass Festival about 20 years ago.  This one man's hands were shaking terribly, so badly, I was afraid he wouldn't be able to pick up his squeeze-box (a small accordion type instrument) that sat next to his chair.  I was right.  The fellow next to him picked it up and placed the strap around his neck.  The music started and this man carefully and with much difficulty placed his hands on it and began to play.  As soon as he grasped it, the shaking stopped and he played flawlessly.   It was incredible to watch and the group got a standing ovation when they were done, but as soon as he quit playing, the horrid shakes were back and the man next to him, helped him put the instrument away.  

Playing squeeze box

I knew the gentleman had Parkinson's Disease, I'd seen shaking hands before.  I went up to him and praised his playing.  He told me he was only 86 and had been playing since he was a child.  Neither of us mentioned the shaking hands.

This is the most common and easily recognized symptom of Parkinson's.  Tremors.  Almost all of us Parkies have them at some time or the other.  They come in two flavors, resting and action.  I've had both.  The gentleman above had the more common type, resting.
   
I started out with the action type, my right hand was fine, until I tried to use it, then it would shake uncontrollably, which made it very difficult to write, drink and eat.  I was forever picking up food off the floor and spilling my drink.  I started using my left hand and soon became so proficient that people thought I was a true lefty.  However, I never mastered writing left handed, so I gave up writing.  My Wonderful Husband took over the writing jobs, checks, grocery lists and even Christmas cards. 

My writing before:

You can click on picture to enlarge it, click the X to return

And after:

Quite a difference, right?

However, these tremors are not always a bad thing.  If I could time them to music, I bet I'd be a heck of a tambourine player and if James Bond stops by, I can make him a martini, shaken not stirred.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

What does Parkinson's Disease feel like? Part 2 - Rigidity

Rigidity.  That's the proper term for it, however, just plain stiff is a better description and it is now my main problem from Parkinson's disease.  

This stiffness can be hard to describe to someone who has never felt it.  Muscles normally stretch when they move, and then relax when they are at rest. In Parkinson's disease, the muscles of an affected area are always contracted and won't relax.  That's why you see us with our hands clenched into a fist sometimes.   

When my drugs start to wear off, I can feel my neck stiffen and then the stiffness spreads to my right arm and both legs, making it hard to rise from a seated position.  If I tried to come up with an accurate description, I'd say it feels like concrete drying.  Or maybe being starched.   Do people use starch anymore?  Oh, heck, my age is showing!  Anyways, it's a distinct feeling.  Kind of like when you have a bad fever, but without the chills and sweating.  Things just tighten up and sometime ache, too. 

 

Not fun, not at all like getting stiff from booze.  Hmm, wonder if getting drunk would counteract it?  Doubt it; I'd probably end up a stiff stiff with a bad hangover.

Stretching is a good way to counteract the tightness.  Exercise may be the best medicine for us and it is free.  However, you should concentrate on exercises that stretch your muscles instead of contracting them, since the Parkinson's contracts them for you.  Speaking of stretching, I need to go do that now, been at the computer too long.   

This is how I hold my hand when I sleep at night, either under my pillow or against my leg, depending on which side I am sleeping on.  Why?  So I don't wake up with a fist I cannot open.  I usually have a distinct hand print on my leg from the hand contracting during the night, but that's a bit to risque to photograph, so you will just have to take my word for it.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

What Parts of Your Body MIGHT be Affected by Parkinson's disease?

YumaBev's squirrel

Any part of your body you can voluntarily move MIGHT be affected by Parkinson's disease, as well as some parts of your body that move on their own. That doesn't mean they WILL be affected. It all depends on your squirrel in your dashboard. 

(If you are lost right now, read What is Parkinson's? ) 

An online Parky friend sums it up very well. She says that we Parkies are all in the same boat, we are just on different lakes. Some folks still have a working boat motor, some are using two oars, some just have one paddle and others are really "up the creek without a paddle." She has a sense of humor, too. It all depends on your particular squirrel, as well as the time of day and how long you have had Parkinson's. 


My day usually starts with a working motor and then settles somewhere between two oars and one paddle. I have been up the creek without a paddle, but it could be worse, I could be in the ocean during a hurricane!

So, what are some of the weird parts that can be affected?  
How about eye lids? Yup, we tend to blink less.  
How about curling toes? Sometimes they really curl under or up, sometimes it just feels like they have and they are perfectly straight.  
How about your bladder? Yes, I said bladder. You know the commercial for men with prostate problems, talking about difficulty starting the stream? It can happen with Parkinson's.  

I know this because it happens to me. I feel like I really need to "go", but can't get it started. So, I used a trick learned from the Alzheimer's people. I hung pictures of waterfalls all over my bathroom walls and it works every time.  Why? It works because a different part of your brain reacts to photos. Just like some Parkies who have difficulty starting to walk, will do fine if they hear music or hum a marching band type song to themselves. Running water in the sink can help, too.

Every day is different with Parkinson's, but by the end of the day, I can always find something to laugh about. I hope you can, too, even if you are NOT a Parky. 

Yes, this is the Wonderful Husband

Clicking on the colored words will open a new window and take you to a different story or link.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

What does Parkinson's Disease feel like?

People often ask me that question and I have thought about it a lot over the years. Probably the easiest to duplicate is the lack of dexterity in my fingers and hand. Want to give it a try? See what it feels like?

Okay, go dig out your winter gloves. Got them? Good. Now, we will set up some tests for you. Grab a deck of cards or a stack of dollar bills. Are you wearing a shirt with buttons? If not, grab one out of the closet. Ready? 

YumaBev trying to button

Put the wrong glove on backwards on your dominant hand. Now, try to deal the cards or count your dollar bills. Having trouble? Now try to button or unbutton those buttons. Fun, isn't it? That's pretty much what my right hand feels like 60% of the time. The other 40% of the time, my meds are operating at their peak, and then it still feels like I have an invisible glove on, just not the wrong one backwards. So, now you can understand why I could no longer work as a bank teller.

There is no pain in my hand or fingers like you get with arthritis. There is no tingling, numbness, loss of strength or feeling. The fingers just won't cooperate with my brain. If I need to open a jar of pickles, the right hand is the one I use, when I can get it to grasp the lid. It makes cutting steak difficult, trying to coordinate both pushing down and moving back and forth.

So, we Parkies adapt. My Wonderful Husband cuts my steak when my fingers won't. I donated all my shirts with buttons to the Salvation Army or now wear them like this. See, I just tie the tails in a knot and skip the buttons. It works for me, and looks fashionable, too.  Plus, it was fun shopping for the right color tank tops to wear under them. 

YumaBev fashion - Parkie style

YumaBev's Parkie fashion

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

Okay, Seriously...What is Parkinson's Disease?

Parkinson's disease is caused by the death of little neurons in an area of your brain called the substantia nigra (black substance), which is somewhere above the spinal cord. These little gray cells, as Hercule Poirot would call them, make a chemical called dopamine.

Dopamine is the stuff that helps your brain send messages to movement related parts of your body. As these neurons die off, less dopamine is produced and the messages get garbled. These garbled messages cause a myriad of symptoms, ranging from twitching pinkie fingers to becoming stiff and rigid like a mummy. Symptoms can change from hour to hour and day to day, but progressively becoming worse as more neurons go to gray cell heaven.

Each and every Parky (nickname for people with Parkinson's) can have different symptoms. Most start with just symptoms on one side of their bodies. Mine was my right hand, bad for a right handed person. If I had been a lefty, I might not have even noticed for awhile. Most notice a shaking or tremor as the first sign, others never get tremors and just feel like their limbs got filled with concrete when they weren't looking, others have dexterity problems. My first symptom was the inability to double click my computer mouse with my right index finger, even though I had done it the day before with no problems. These discrepancies can make diagnosis very difficult.  

There is no test for Parkinson's. Rule out everything else and then make an educated guess.  In my case, it took eight years before someone guessed right.  Another YOPD (Young person with Parkinson's) I met online, got the right guess the day after she noticed something amiss. The average for us Youngsters seems to be a couple of years. The Doctors are looking for other things, not an "old persons" disease and sometimes tell us that it's all in our head. That part they are actually right about. It is all in our head, it's just not imagined.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

What is Parkinson's Disease?

If you read the medical definition of Parkinson's disease, it sounds like a drawn out oxymoron:  "Parkinson's disease is a degenerative neurological disease characterized by involuntary movements and lack of movement." What?

I like to think of Parkinson's disease as a communications problem. My brain is saying one thing and my body is doing something else.

  

Parkinson's reminds me of a boy I knew in high school. He had an older car, a fixer upper. This car seemed to be possessed. One day, you would turn on the radio and the headlights would come on. The next day, you would turn on the wipers and the horn would blow or the turn signals would come on. It seemed like gremlins were re-wiring the car while he slept. It drove him crazy. He never knew what was going to happen when he got in the car to drive to school in the morning. Every weekend, he would search under the hood for the problem and find nothing. No blown fuses, no burned wires, everything looked kosher.  

YumaBev's squirrel

Then one day he saw some seeds on the floorboard. That's strange, he thought.  The car was closed up tight and locked. The next day he found more seeds. He did some digging and found that a squirrel had been nesting inside his dash. It was scrambling around all night and sneaking out in the morning. This was the cause of his electrical problems; seeds, twigs, pieces of trash all hidden behind the dash.

Parkinson's is a lot like that squirrel in the dash, messing around, so you don't know what will happen when you try to blow your horn.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

I am Special

I AM SPECIAL and I have a sense of humor.  I have Young Onset Parkinson's Disease (YOPD), also known as early onset. What does Young Onset mean, exactly? It means that instead of waiting until my late sixties to get this disease, I was precocious and got it in my thirties. This makes me special, just like Michael J. Fox, but without his bank balance. It also means I didn't have to wait until 62 to collect Social Security or 65 to get on Medicare. I get both now, thanks to Parkinson's. Of course, the check I get is no where near what I made when I could still work, but I don't have to commute or wear heels!  

I may be special, but I am not rare. For awhile, I thought Mr. Fox and I were the only Young Onsets out there. I was wrong. I found a chat room for us Parkies (an affectionate term we call ourselves) and have since found quite a few other precocious people out there, some in their early twenties.

A sense of humor is a requirement when you have Parkinson's. Not only is it a good idea to be able to laugh at your predicament, but laughter helps your brain produce more dopamine, which is the "stuff" we are lacking and causes all of our weird symptoms. 

I was never, what I would call, normal. I was always small for my age, and a couple years ahead of the rest of the class in school. 

My Mother used to say I had "an old soul". Maybe it's that "old soul" that got the Parkinson's.  

Darn! Maybe I am not special after all.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!