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Wednesday, February 29, 2012

Kokopelli

Kokopelli is a mythical creature and his likeness is found all over the south western United States. Almost every home in my neighborhood has a Kokopelli symbol on something or the other. I asked my neighbors, most of whom are senior citizens, what they thought Kokopelli was known for and they all had the same answer:  Good Luck. That gave me a chuckle.


I had been seeing Kokopelli for years, and I wondered what exactly Kokopelli was all about. After I got diagnosed with Parkinson's Disease, I thought that with his stooped posture that he might have been a Parkie. So, I did what any middle-aged geek would do and I Googled it. Every article I could find on Kokopelli all said the same thing. He was a fertility god, he brought babies to the village maidens.


With that knowledge in mind, I began to see just where Kokopelli was featured and I chuckled often.  There is a Casino with a kissable Kokopelli featured prominently at the entrance. I guess that's so money reproduces (probably the Casino's). There is a Kokopelli at a funeral home (not sure who or what is reproducing there, but I don't want to find out).  There are Kokopelli's on ashtrays, coffee mugs, t-shirts, hats and even restaurant menu's and golf balls.  


So, as you can see, when I walk around my neighborhood and see all the Kokopelli's, I have to laugh that the only houses that don't have any visible ones are the two houses which actually produced babies in 2011.  


And yes, we have a couple Kokopelli's in our home, too. For Good Luck, of course! 





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 Parkie Day!

Friday, February 24, 2012

Charting Parkinson's Disease Symptoms, The Results

A while back I wrote a story about how I made a chart of my symptoms for several days prior to a visit with my Neurologist.  The wonderful people at the Michael J. Fox Foundation featured my story on their blog and made me a guest blogger (MJFF Guest Blogger) which was quite an honor, to say the least. To read that story, follow this link: Charting a Parkie.  
Based on the findings on that chart, we adjusted my medicines.  Well, it's been a couple months on the new drug routine and I thought you'd be interested in my results.  


I WAS taking a Stalevo 150 and a Requip 1 mg (see Notes below), at 7am, 2pm and 9pm and this is what my chart of symptoms looked like for an average day.


clicking on it will enlarge it


As you can see, there aren't a lot of 10's and I was spending most of the day waiting for the medicines to work.  A 10 is the best I expect to feel on any given day, not what a 10 would be for a person without Parkinson's Disease. 


Based on that chart, we decided to lower the strength of the Stalevo and increase the number of times I took it.  I NOW take Stalevo 100's at 6am, 10am, 2pm, 6pm and 10pm and the Requip 1mg at 6am, 2pm and 10pm (see Notes below).  My cell phone alarm goes off to remind me and since it was going off so often, I used some humor and it plays "I Want A New Drug", the Huey Lewis song from the 1980's.


I am very pleased with the results and this is what my chart looks like on an average day.


Clicking on chart will enlarge it


Notice how many more 10's there are.  If there was some way to make today's 10's feel like last year's 10's, it would be fantastic, but that ain't going to happen.  I am worse than I was last year, and much worse than I was 2 years ago, but I am still doing better than I was the day before I got diagnosed, so life is good, yes very good (and I still feel better after eating chocolate chip cookies)!


PS Every Parkinson's patient is different and what worked well for me might not work for another patient. And what works well for me today, may not work at all next week.


Notes:
Stalevo 150 is a brand name combination of 37.5 mg carbidopa USP, 150 mg levodopa USP and 200 mg entacapone
Stalevo 100 is a brand name combination of 25 mg carbidopa USP, 100 mg levodopa USP and 200 mg entacapone
Requip is a brand name of 1 mg ropinirole

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 Parkie Day!

Monday, February 20, 2012

Parkinson's Disease and My Foot

My left foot goes crazy almost every day around noon.  If I'm walking across a parking lot at the time, it can be a problem.  When it happens, it's called dystonia by the Parkinson's Disease Doctors, I just call it cramps. (read my Parkinson's Lingo story)

Just toes or whole foot
Sometimes my whole foot tries to turn itself inside out and other times, just my toes curl under.  The cramping itself isn't very painful, but my foot doing somersaults inside a shoe is, and trying to walk on it is extremely painful, even barefoot.  I usually try to sit down and wait it out.  If I catch it soon enough, I can sometimes stand on my tippy-toes and stretch it out or place my bare foot on the cold tile floor (which distracts my brain) and make it go away sooner.  


Little feet, big slippers
I have a hard time getting my shoe off my foot.  I am trying to balance on one leg and wrangle a distorted foot out of the shoe. For that reason, I wear oversize boot-type slippers around the house.  My feet are small and yet I wear big slippers that make me look like Big Foot.  I keep telling you that you've got to have a sense of humor to survive Parkinson's Disease.


Clicking on a picture enlarges it
Most of my Parkie friends get similar cramps.  If they happen first thing in the morning, it's most likely because our brain has run out of medicine while we were sleeping.  I used to get painful leg cramps that would jerk me awake.  I ended those by taking my last dose of medicine later and doing specific stretches right before bedtime.  I also increased my intake of potassium rich foods.  


The foot cramps I get now are most likely caused by too much medicine in one side of my brain.  I have Parkinson's Disease symptoms on both sides of my body, but my left side is the least affected and therefore, the muscles get over-stimulated and my foot cramps. 

Most of you know, by now, that I like to write song parodies (read I Re-write the Songs  ) so, of course, I wrote a song about my foot cramps. It's called The Bendy Toe Blues and clicking on the > below will play it for you. Enjoy!









You can find all my videos on my YouTube channel:

Clicking on 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 Parkie Day!

Monday, February 13, 2012

The Energeezer Parkie - Living with Parkinson's Disease

Bev's battery
Christine Miserandino wrote a wonderful story called The Spoon Theory (Spoon Theory) to explain to her friend what life was like living with Lupus. I have a slightly different way of explaining Parkinson's Disease and use my peculiar sense of humor. I say I'm like the Energizer Bunny, except my battery has Parkinson's and doesn't hold a charge like it should, so I am the Energeezer Parkie.  


100%
Everyone has had experience with rechargeable batteries, in cell phones, laptops, cameras, tooth brushes or power tools. We know that when the batteries are brand new and reading 100% charged, they work for days. However, after a while, a 100% charge only gets you half a day or just hours.  


Warning, battery dying!
This morning, I slept great, woke up feeling good and decided to do the laundry. After the second load was done and the third was in the washer, my battery suddenly died and it was only 10:30 am. It was all I could do to finish the laundry and then I told my Wonderful Husband that I needed to lie down a bit. It was 11:25 am and I asked him to wake me at noon for lunch. I could hear him in the kitchen and I woke up on my own. It was 1:30 pm, I had slept for 2 hours!  


When I asked him why he didn't wake me, he said "You needed the rest." Now you know another reason why he is the Wonderful Husband.


Which one did I get today?
The problem with having Parkinson's is you don't look sick. I wake up almost every morning with my battery reading 100%, but I don't know which battery I got. Did I get the 10 hour battery, the 6 hour battery or the 2 hour one? I never know. I will never have a brand new battery again and I have accepted it, but when you wake up feeling 100% and then crash 3 hours later, it makes it difficult to plan your day.


The good news, for me anyways, is that sleep recharges my battery, so a nap can get me through the day.


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 Parkie Day!

Wednesday, February 8, 2012

What a Cat Taught a Parky

Cat's Twitter page
Cat is my blind friend that I met through Twitter.  She uses a screen reader software designed for the blind to "read" what is on her screen. Twitter is her main connection to the outside and she "talks" to people around the world. She is curious, smart, sympathetic, and fun, plus she has a great sense of humor.  She willingly answers questions like "How do blind people ...?" as long as they don't get obscene.  And she likes to help people as well.  When she saw a post about how my fingers stutter when I type, she came up with some great suggestions for Parkinson's Disease people who have trouble typing. 


The first one is called Filter Keys and it is a keyboard setting that basically ignores bouncing (trembling) fingers. The second one is called Sticky Keys and it allows us to hit one key at a time. The third one is a dictation setting so your computer will type what you speak.  I never knew these settings existed, but apparently they teach blind people about them, and she told me!  


Here is how to find them if you use Windows XP or 7.


Filter keys in XP.  Control Panel, Accessibility Options, Accessibility Options again, mark the Use Filter Keys box, then click Settings, you have 2 options: Ignore repeated keystrokes or Ignore quick keystrokes and slow down the repeat rate.  The first one is better if your fingers tend to type the same letter more than once, you can set the length of time for extra strokes to be ignored and there is a test area to try it out before OK-ing the settings.  The second one would be better if your fingers tend to hit multiple keys at once and it also has various settings and a test area.  
Sticky keys is useful if you have trouble holding more than 1 key down at a time, like Shift and a letter (or Ctrl-Alt-Delete).  It lets you hit them in sequence one at a time.
You can also find settings to adjust the size of the type on screen and configure your mouse for left hand and single click instead of double click.


Windows 7, Control Panel, Ease of Access, Change how your keyboard works, Turn on Filter keys (or Sticky keys) and the settings follow.  Mouse adjustments in there, too.  And 7 has speech recognition, so you can set it up to type what you speak (built in dictation). 


Flipped up rug
Cat also suggested that you look around your home and think what you would change if you were expecting a blind visitor. What's laying around that she might trip over, stumble into or bump her head on.  All the things that can hurt her can also hurt a wobbly Parkie and falls can be devastating to all of us.
Cord to trip on


Everyone should have a Cat for a friend, I'm glad I do.  Find her on Twitter, she is @song_bird1987.
Other stories about Cat:
How to explain Parkinson's to a Cat
How do I describe a Fox to a Cat

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 Parkie Day!

Monday, February 6, 2012

Da Gold Medal

On Friday night, February 3rd, 2012, my Wonderful Husband and I got together with 10 of our neighbors and went to our favorite restaurant, Da Boyz, located in downtown Yuma, Arizona.  They have excellent Italian food and we go often, usually in a gang of 6 to 20.


Marilyn Deer
We made reservations ahead of time and got the Marilyn Monroe room. This room has pictures of Marilyn all over the walls and even a Marilyn deer (it's a buck, which makes it even funnier). They also have an Elvis room and a Pack Rats room, but I like the dolled up deer (it shows they've got a sense of humor).


Lasagna, yummy!
I love their lasagna, it's almost as good as my Wonderful Husband makes, and I don't have any clean up to do afterwards.   I also like their black & white print plates.


Some of our Gang enjoying dinner
Our waiter was a young man named John and I'm not sure he knew what to make of us, we are a pretty silly bunch.  I took him aside and told him not to pay attention to anything we said because we just got released from the sanitarium.  I think that he might actually have believed me.  


Our Gang will throw a party at the drop of a hat.  We have had a "Cut the tie off the new Palm Tree" party, a "Got a new dining room table" party, and even a "what the heck, it's the last Thursday of the month" party.  If we can't come up with a reason, we'll make something up or drop a hat.  My blog reached 10,000 hits a few days before so this was a 10,000 Laughs party (and a good excuse to eat cake)! My friends teased me and they said I looked pretty good for being "hit" so many times and that I was "one tough cookie" for laughing at my Parkinson's Disease.  


Sharon presenting the Gold Medal
My Wonderful Husband didn't tell anyone the reason for this party, it was going to be a surprise, but I got surprised instead.  My neighbors had decided that I deserved a gold medal and they presented me with one.  It was a grand ceremony and even though it was just the logo cut off a sack of flour and glued to a blue ribbon, it meant the world to me and I will treasure it always.


After the presentation, however, I became a big old softy.  I tried to tell them how much their friendship meant to me, but I got all choked up and couldn't get the words out, instead tears ran down my cheeks, but I was laughing inside.

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 Parkie Day!

Friday, February 3, 2012

All the skinny on this Parkie

Roseacea causes red face
I am fairly healthy, except for Parkinson's Disease , but I still spend a lot of time in Doctor's offices.  The medicines I take for  Parkinson's can cause melanoma, so I see a lady Dermatologist twice a year for a complete skin check.  I've had 2 cancers cut off my nose already.  She treats my Rosacea, as well (that's why my face looks red all the time).



Dr. L comes in, looks me over and scolds me because my arms and legs are darkly tanned.  I tell her that I can't help it, I tan really fast.  She looks puzzled and says "But you are blonde.  Are you a natural blonde?  Of course you are, even your eyelashes are blonde.  How long does it take for you to see a difference in color?" 


 Ten minutes, I answer.


 "Ten minutes?  And you see a difference?  That doesn't make sense, you have fair skin, you shouldn't tan at all."  I just shrug my shoulders.  Dr. L is almost as white as the shorts I am wearing in the photo.

The hair on my body is short, baby fine and blonde and I have so little of it that I don't have to shave my legs!  Yippee!  This amazes Dr. L, she just can't believe it.  She says I am the least hairiest adult she has ever seen and asks if I have always been like that.  No, I answer, I used to have thick black hair all over me.  She looks puzzled again, and then laughs.  I'm not sure she understands my weird sense of humor.

Tiny toe nail
I have always been different, my fingernails are see-through and bend and nail polish will not stick to them.  My baby toenail is so tiny that I can barely cut it.  My hair and parts of my face are very oily and the rest of my skin is very dry.   


What can I say?  I am an anomaly, I shouldn't tan, but I do.  I shouldn't have Parkinson's either, but I do. I shouldn't be a Happy Parkie, but I am. 

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 Parkie Day!