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Wednesday, March 28, 2012

Parkinson's Disease Aware In Care Hospital kit

When I first heard about the National Parkinson Foundation's Aware In Care kit, designed to help Parkinson's Disease patients get the best possible care when hospitalized, I ordered one right away, then I shared the ordering information on my Facebook and Twitter pages.

My kit came a few weeks ago.  I looked it over and decided it was important, so I showed it to my neighbor, Carole, who volunteers at our local hospital as a patient advocate.  She ordered one and plans to talk about the kit at the next Hospital Board meeting.  I told all the people at my local Parkinson's Support Group about the kit and helped 18 of them order kits for themselves.  It's a good thing my neighbor is warning the Hospital because I am certain these kits will be appearing with Parkies coming in for treatment.
My Aware in Care kit sits near my coffee cup, so I always know where it is


The kit is small, but packed with useful information:
Contents of kit
1. The Hospital Action Plan brochure: It has great advice about planning ahead for your next hospital stay, emergency or planned.  Hint:  Make sure that everyone knows EXACTLY WHERE the nearest hospital or care center is located, before an emergency comes up because getting lost on your way isn't humorous.  Make sure you can FIND your kit in an emergency, I keep mine next to my coffee cup, because I ALWAYS know where my coffee cup is.
2. The Medical Alert Card: This should be filled out and carried in your wallet at all times.  Hint: Have someone who can write legibly fill it out for you.  It won't help you if the EMT's can't read your scribbled writing.  
3.  The Parkinson's Disease Medical Alert Bracelet:  This gave me some trouble.  I have difficulty with clasps, so I could NOT put it on by myself.  My Wonderful Husband (a former jeweler) solved the problem by shortening the links and making it just loose enough that I can slide it on without unhooking it.  The front of it says to look for the wallet card and
Bracelet slides on and off
the back of it has a 1-800 number for PD info.
4. Medication Form Pad:  This is a whole pad of forms to list your medications and exactly what time you take them, so update it each time you have ANY changes. Hint: It might be a good idea to have someone else fill this form out, too.  I have one in my kit and copies in the glove boxes of both family cars, just in case I don't have the kit with me if an emergency comes up.
5. Magnet:  Use this magnet, in the hospital, to display a copy of your Medication Form.  It will stick right to the end of the bed where your chart hangs.
6. Parkinson's Disease Fact Sheet:  A simple explanation about Parkinson's and how IMPORTANT it is for us to get the right medications at the right times during our hospital stay, as well as warnings of medications that can have potentially bad side effects.  Hint:  I made copies of mine and gave one to each of my Doctor's to put in my chart and I also put a copy in each car's glove box.
7. The "I have Parkinson's" Reminders Slips are to be given to EVERY person who will be taking care of you in the hospital.
8. A Thank You Card: To give to the staff member who did their best to give you high quality care. Hint: the one you'd give an A+ to.  (Not the prettiest or handsomest one, give them your phone number instead, hee hee)


Hopefully, I won't ever need to use my kit, but just in case, I think I'll be able to squeeze Parky Penguin and my pajamas in the kit along with a toothbrush and comb.  
Aware kit, Parky Penguin and my pajamas
And just in case the nurses are a bit grumpy, my jammies ought to give them a smile, at least.  Don't you agree?  
Follow this link to order yours today. Sorry, but it can only be sent to USA addresses. National Parkinson Foundation's Aware In Care Kit  I almost forgot the most important thing, these kits are FREE, yes FREE, so order yours right now.

Attn Non USA Readers: If you go to the website (click colored links above) and click Kit Contents, most of the forms are down-loadable, so you can print out and make your own kit. 


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, March 26, 2012

Parkinson's Disease and Dancing

I love to dance! I have always loved to dance and having Parkinson's disease isn't going to stop me from dancing. Dancing uses a different part of your brain than walking, so it is very beneficial for people with Parkinson's to dance (and it's fun).  


Young YumaBev at dance competition
Back in the late 70's, my dance partner Dwayne and I used to enter (and often win) dance contests around central Florida. We were a good team and used to do some pretty spectacular lifts and tricky routines. I wore skimpy costumes and high heels and felt like a dancing queen.  


YumaBev cowgirl
In the early 80's, my competition days ended and Dwayne and I went our separate ways. I got married, became a widow, got married again, but I still liked to dance. Line dancing became popular in the 90's, no partner was needed and I soon mastered all the dances, including the ones with tricky footwork. Of course, what I really liked was the cowboy hat!  


Now it's 2012 and my feet aren't coordinated enough to do the fancy steps, but I still put on old disco tunes or a country song and shuffle around to the beat. I like it! It makes me feel like that dancing queen from 30+ years ago and maybe, just maybe, it will help me maintain my balance and my ability to walk for many more years to come. So, friends, put on some music and dance, dance, dance.


Use some humor, put on Shake (Sam Cooke), Shake Your Booty (KC & Sunshine Band), Shake Your Body (Michael Jackson), Country Girl Shake it for Me (Luke Bryan), The Shake (Neal McCoy), Shake It Up (The Cars) or Walk Like An Egyptian (The Bangles). 

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!

Sunday, March 18, 2012

Pharmacology of Parkinson's Disease

Reading all the fine print on those fact sheets that come with Parkinson's disease medications is confusing and boring, so I decided to use humor to try to explain it.  I got the idea of using farm references by the phonetic pronunciation of Pharmacology (FARM-a-college-ee).


Parkinson's disease is caused when certain neurons in our brain die and quit producing dopamine.  Low dopamine levels cause the signals from our brain to our muscles to get scrambled and produces the erratic movements. Okay, easy enough, just give us dopamine.  The solution sounds simple, but there is a catch: our bodies are very protective of what it lets in the barn (brain) and dopamine can't even get on the farm.  
Dopamine - stay out!!!


The scientists developed levodopa which can get on the farm, but by itself, levodopa causes intense nausea and vomiting and turns into dopamine and still can't get in the barn (brain).  The scientists found that by adding carbidopa to the levodopa, they could prevent it from becoming dopamine and quell the nausea.  Carbidopa is like a Judas Goat, it leads the levodopa past the guard dogs and right into the barn (brain). The combination of carbi/levodopa is called Sinemet.
Sneaks the dopamine in

The problem with Sinemet is that our bodies try to get foreign items out of our bloodstream.  It takes about 45 - 75 minutes from mouth to blood stream and then our efficient blood cleansing organs get rid of it about an hour later, so not much makes it into the barn (3% according to the experts).


The scientists went back to work and found out that if they added another drug called entacapone (Comtan), they could keep the Sinemet in our bloodstream longer and therefore more can be herded in to the barn known as your brain.  The brand name combination of Sinemet and Comtan is called Stalevo.
Herding more into the barn


Comtan has a wonderful side effect of making your urine turn bright yellow, orange or even brown.  This has a tendency to freak out the lab techs when they ask you to pee in a cup.  It is my own personal observation that this yellow stain also creeps into your saliva and perspiration and I am pretty sure that it is staining my teeth as well (just call me mellow yellow).


There is another class of drugs called dopamine agonists. These drugs aren't designed to replace the missing dopamine, they are designed to make the receptors that use dopamine work better without it. It's kind of like dangling a carrot in front of a donkey.  
Agonists act like a carrot and can cause you to act like a donkey


There are 2 main agonists: Ropinirole and pramipexole, known under the brand names of Requip and Mirapex. These drugs do such a good job of stimulating the receptors that they can cause dangerous obsessive or compulsive behaviors such as gambling, uncontrollable shopping or risky sexual activity.  IF you are taking an agonist, you need to be aware of these potentially life altering side effects and find someone you can trust to monitor you. On the up side, agonist's have also been tied to increased creativity.  People start writing poetry or take up painting when they had no interest prior.


Rasagiline (Azilect) and selegiline (Eldepryl) are other drugs that are used in Parkinson's and are in a class of medications called monoamine oxidase (MAO) type B inhibitors.  They work by increasing the amounts of certain natural substances in the brain and act similar to the agonists.  They are often prescribed to recently diagnosed Parkies in an attempt to delay prescribing the Sinemet.


There are many other drugs used to either treat the symptoms of Parkinson's or the side effects of the drugs we take to relieve our symptoms.  


Treatment of Parkinson's consists of easing our symptoms only.  None of the currently available medications will stop the progression or cure it.  Over time, Sinemet causes unpleasant side effects (Parkinson's Drugs Side Effects) and becomes less effective, requiring us to take higher and higher doses, so Doctor's try to reduce the amount of it we take or delay its usage.

The reason Sinemet loses its effectiveness is the brain needs healthy dopamine producing neurons to convert the levodopa into dopamine, and, as the disease progresses, there are less and less neurons to do the converting.


I wrote a song about Sinemet, well, just the lyrics, the music is borrowed.  Have a listen:






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, March 12, 2012

My Birthday was GREAT!

I woke up early on my Birthday. Waking up early is normal for me (Parkinson's Disease and Sleep), but I woke up extra early that day.  I wrote a story about the first few hours of my 52nd Birthday and people have inquired about the rest of my day. 


The rest of the day was great!  
The neighborhood Jeeping gang sang to me before they took off for the day. 

My Twitter and Facebook accounts were full of Happy Birthday wishes as were my email and regular mail boxes and of course, there was the big banner that greeted me when I came back from taking photos early in the morning.  

George, My Walking Buddy and Freida treated us to lunch, then I had a little nap to Recharge my Battery


After dinner, we went over to George and Freida's house for cake.  Freida is an excellent baker and while I normally do not like cake, she has managed to make one that I LOVE.  It tastes like cinnamon rolls and Snickerdoodle cookies, both of which I love.  Willie and Sharon were there as well.  I got to blow out candles while everyone sang Happy Birthday to me.


Everyone complimented me on the sweater that I was wearing.  My Wonderful Husband gave me that sweater the first year we were married.  Yes, it is 26 years old!  


It was, definitely, one of the best Birthday's I've ever had.


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

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!

Thursday, March 8, 2012

Reflections of me at 25 and 52

Today, March 8th, 2012 is my 52nd birthday.  I woke up at 4:44 am and I was born at 4:44 pm.  I started thinking about my 25th birthday and how much my life changed that one year.


I spent most of my 25th birthday alone and crying. The boy I was dating had dumped me the night before and then everyone forgot my birthday. Everyone.  I didn't blame them, my Mother had died 6 weeks earlier, so no one was thinking about me.  Life was awful, my husband had died in a fiery car crash two years earlier and then I watched my Mom slowly die of lung cancer.  I wished I was dead, too.  


My Mother came to visit me in a dream that night. She scolded me and told me to shape up and get on with my life.  It was very real, like she was standing right there, so I went to counseling, gave up my apartment and moved back home with my Dad, found a new job and started taking some college classes.


A couple months later I ran into a male friend that I hadn't seen in many years.  Our friendship took up right where it left off.  We enjoyed being together. One day, I asked this friend if he would ever consider marrying me. He said Yes, but thought we should at least date first. We did.  We got engaged on July 24th and married on December 14th.  


My Wonderful Husband and I have been together ever since then.  My 25th year started out in tears and ended in love.


Tonight will be a full moon, my 25th birthday was also on a full moon.  I went outside early this morning and snapped pictures of last night's moon as it was setting.  I don't remember seeing the moon years ago, but I am sure I did.  


As I came back towards the house (in my jammies and slippers with 2 coats on), this sight greeted me as I walked up to my door.  My neighbors had gone to the trouble of making a Happy Birthday Bev! banner and hung it on my porch, then they put slinky's in the bushes.  I don't know when they did it, but it must have been very early.


When I turned on my computer and checked my emails, Twitter and Facebook, there were lots of birthday wishes.  At 8 am, I climbed back into bed and snuggled up to my Wonderful Husband.  I think that this year is going to be a very good one.

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, March 7, 2012

Day Four of my vacation from Parkinson's Disease (the final day)

Thursday, March 1, 2012, Day Four of my vacation from Parkinson's Disease started way, way too early.  It was after midnight before I got to sleep and I woke up at 4 am. We didn't need to pick Lynn up until later, so I let my Wonderful Husband sleep in.  I played on the computer and started writing this series of humor stories.  
Lost? Read Day One and Day Two and Day Three


We picked Lynn up at her hotel at 10 am and she and her Dad posed for some pictures, then we headed through the desert towards Phoenix, 200 miles away.  We stopped at In-N-Out Burger and grabbed a bite and then fought our way through the traffic and dropped Lynn off at the airport.  It was a tearful goodbye for all of us.  Lynn is his only daughter.


I  always drive in the big cities because I was born with MapQuest pre-installed in my brain's hard drive.  On the way out of the airport, my brain's hard drive froze and I took the wrong exit.  I didn't have a map with me, so I had to keep taking exit after exit until I got headed towards home. Needless to say, getting out of Phoenix was a huge nightmare and totally stressed me out.  By the time we got to Gila Bend (a town in the middle of nowhere), I had enough.  I pulled over and my Wonderful Husband drove the rest of the way home through 100 miles of desert and cactus.  


We got home about 5:30 pm and I crashed, I just had to lay down.  An hour later, we ate the rest of the subs we'd bought the night before and I put on my jammies and flopped on the sofa.  Lynn called when she got home, which was 9:00 pm our time and I went to bed soon after.  


My Wonderful Husband asked me if I missed being around people my own age (Lynn is a few years younger than me) and doing his Daughter's kind of fun.  Hell no! was my answer.  I may look like I'm in my 30's, but I'm actually 51 and most days I feel like I'm 80 or 90.  


So, after my 4 day vacation from Parkinson's, I still haven't caught up and it's a week later. 

Maybe I need a vacation?
  
PS  I've still got the tan!







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!

Tuesday, March 6, 2012

Day Three of My Vacation from Parkinson's Diesease

Wednesday, February 29th, 2012, Day Three of my vacation from Parkinson's disease started early, at 5 am with terrible leg cramps again.  IF you are lost read Day One and Day Two


Before the spray
Lynn wanted to get some tan while she was here, but the weather wasn't cooperating, so I called and made appointments for both of us at Sprayed Rayz, to get spray tanned. It would be a "girls" thing (her Dad stayed home). I picked her up at the hotel at 11 am. Neither one of us had ever done this before, so I went first. Jonna was patient with me and managed to follow along with my wiggling body (the dyskinesia didn't get the NO PD memo either) and then it was Lynn's turn. The instructions were to wait six to eight hours before rinsing off and we looked like we had rolled in mud. 


What the heck, Lynn said. I don't know anyone in this town, let's go pick up my Dad and go eat, so we did. He said he'd never had lunch with two pretty mud wrestlers before (ha ha, his attempt at humor). We ate at our favorite local Italian restaurant, Da Boyz and then we went over to a casino nearby.


all tanned up
Since Lynn was a new casino visitor, they gave her $10 to play with.  I'm not sure, but I think she won enough with their money to pay for most of her Mexico treasures. After awhile, it was approaching "rinse the mud off" time so we headed back to the house, stopping to pick up some Subway sandwiches on the way. I rinsed off first and was pleasantly surprised at how natural my new tan looked (not to mention the lack of tan lines, hee hee). Lynn rinsed off next and she was just as pleased.  


We spent our last evening together just sitting around and talking and once again, we took her to her hotel at 11 pm.


I had survived another vacation day from Parkinson's and I was tan, can't get much better than that.

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, March 5, 2012

Day Two of my Vacation from Parkinson's Disease

Tuesday, February 28th, 2012, Day Two of my vacation from Parkinson's Disease started at 6:40 am, when leg cramps jolted me awake (I guess they didn't get the NO PD memo). I did my usual morning stuff and we picked Lynn up at her hotel at 10 am and headed for Algodones, a little Mexico border town about 10 miles from Yuma, AZ. (IF you are lost, read Day One of my Vacation )


future Rodeo star?
Lynn wanted to look for a new purse, some medicine and jewelry (all available at bargain prices).   As we started across the border, my left foot decided to cramp (I guess it didn't get the NO PD memo either).  I figured we'd be out of there by noon, I was wrong. At 2 pm, we found a bakery and had jumbo fresh baked cinnamon rolls for 70 cents each. The only picture I took was a humorous one of a little boy riding a dog.  It was too crowded to take pictures of her shopping so I found places to sit as Lynn and her Dad shopped.  


We wandered around and around and Lynn got right into the bargaining spirit that is the way of life in Mexico.  She happily scored a real leather purse, several bracelets and some very nice necklaces for "better than cheap stuff at Walmart" prices and picked up some gifts for friends back at home in Orlando. She bought some antibiotics for her dog and some fancy face cream for herself and her Dad picked up a bottle of Kahlua for a neighbor.  It was 4 pm and we decided to leave.    


Step-daughter Lynn in Mexico
Oops, there was a line to get back through the Border and it was FOUR blocks long.  We stood in line, well, honestly, Lynn and her Dad stood in line. I would find a bench up ahead and sit down and wait for them to catch up to me and then repeat the process. Most of the people in line had gray hair and were giving me funny looks as I sat, but I didn't care.  It took 2 hours to get out of Mexico. Lynn posed on a bench and let me take an official picture of her in Mexico.  


After we finally got back to the USA, we took Lynn to Famous Dave's Bar-B-Que for dinner and then came back to the house.  We sat around and visited until 11 pm when we took her back to the hotel.


I had survived Day Two of my Parkinson's vacation (kind of).

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!

Sunday, March 4, 2012

Day One of my vacation from Parkinson's Disease

On Monday, February 27th, 2012 at 4:30 am, I decided to take a vacation.  My step-daughter, Lynn, who is nearly my age was coming for a visit and I decided that I would NOT have Parkinson's Disease for the four days she would be here.  


Montelucia Resort
We left the house at 7 am and drove 182 miles to the 4-star Resort in Scottsdale AZ where she had spent the weekend on business (she had flown in on Friday from Orlando FL). The first 165 miles were easy (nothing but desert and cactus), the last 17 miles weren't. She showed us around the resort and treated us to a late breakfast.  The service was excellent as was the food, but they had trouble locating a straw for me (I guess most people don't use straws at breakfast). My shaky hands apparently didn't get the NO PD memo.  We left right after eating and headed back home, the first 20 miles were terrifying and stopping for gas was just your average nightmare.  

An hour or so later, we stopped in Gila Bend, AZ, and had an ice cream cone, took a bathroom break and snapped a picture of the town's humorous Welcome sign.  Lynn was beginning to realize that she was in the middle of nowhere and Yuma was only 100 miles farther into nowhere.


Freida's yummy cake
We arrived at our house at 3:30 pm and I wanted a nap, but instead, I washed some clothes for Lynn and showed her around our home. At 5:30 pm, we went over to our neighbors for dinner.  Sharon made Cornish Hens, broccoli and rice pilaf and Freida made Caesar salad and Lemon creme cake. I don't know what their Husbands did, probably set the table and dug up the extra chairs.  Lynn was seated next to me and instantly cut up my Hen so that I could eat it (she remembered my troubles with knives).  



 We sat around gabbing and telling stories and then we played a game where we each drew a picture of a pig and learned all about ourselves from our drawings.  My piggy looked like he was doing a wiggle dance.  Then I taught everyone how to draw a swan by making a number 2 and Freida showed us how to draw a 3-dimensional box. 
How to make a swan from a number 2


Pretty soon it was late (for us) and we drove Lynn to a nice hotel nearby (not a 4-star resort, but nice).  We decided she'd be more comfortable there, especially with me wandering around the house in the middle of the night.  


By the time we got back home, it was 11:30 pm and I was ready for bed.  I had been up for 19 hours.  I had survived Day One of my Parkinson's vacation.

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!