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Friday, July 27, 2012

I'm in a Sticky Situation

For a while now, my neurologist has been mentioning Deep Brain Stimulation (DBS) surgery for my Parkinson's disease. The Movement Disorder Specialist I saw last year mentioned it, too. I have taken the first small step (or giant leap) and made an appointment for a consultation with a neurosurgeon. I hope he has a sense of humor because he'll need one.


I should be concerned about the usual things associated with brain surgery, such as having holes drilled in my head, but I am not (well, maybe just a little).


I am worried about the sticky stuff: the tape they'll stick across the IV line in my arm to hold it in place, the EKG pads they will stick fast to my chest to monitor my heart rate during surgery, and whatever
they will stick across the holes they've drilled in my head to protect me from infection. 


Why am I sweating the sticky stuff? I am allergic to sticky stuff. Put a band-aid on my arm and the skin reddens, blisters and then takes on the appearance of a severe burn. The same thing happens with those sticky pads on an EKG machine. My skin doesn't like sticky stuff.


This allergy has made for some interesting medical ingenuity over the years. One surgeon used a tube-top to hold bandages in place after a breast biopsy and even though the EKG pads were placed on my chest the very last thing before surgery, and taken off as soon as possible afterwards, I still had red welts on my chest weeks later. My dermatologist used my glasses to hold bandages in place after she removed skin cancers from my nose. I have even improvised myself. I cut the top off a sock to protect my arm when I burned it while ironing and found that a partial glove protects a cut finger.


Burned my arm ironing.


So, I am concerned as to how they are going to manage the sticky stuff during and after the surgery (if I decide to go through with it). Maybe they can use honey or jelly, they are sticky and I'm not allergic to either one, but then I might attract ants or bees (and I am allergic to both). It's definitely a sticky situation. 


PS My sticky situation started right about the same time as my Parkinson's symptoms. Prior to that, I had no problems with band-aids at all. Coincidence? Hmmm 

Sunday, July 22, 2012

Parkinson's Disease: Life in the Slow Lane

It happened again this morning. I was doing laundry and folding the items as I pulled them from the dryer. I normally fold fast, so, why was I having such a hard time folding this sheet?  

I learned how to fold stuff when I worked at Disney World as a teen. I worked in Re-Wrap. Visitors open packages, look at the items and then purchase unopened ones. All the opened items (shirts, towels, bedding) went to Re-Wrap. Items that weren't damaged were re-folded, re-wrapped and put back in the shops and I was one of their best. 

So, what was going on today? I wasn't stiff; I could bend my joints easily, so it wasn't the rigidity thing. I was just moving in slow motion. I thought I knew the answer, but I wanted to double check, so I went online and searched "Parkinson's slow motion", and there it was.  

Bradykinesia - slowness of movement. 

Darn! I now had another symptom of Parkinson's to add to the list. I may have had it for a while and just mistook it for rigidity, after all, the effect is almost the same, you can't move fast. 

Since my body wasn't rigid, what was causing the slow motion? I read all the medical gobbledygook and decided it was a speed problem. The instructions from my brain to my hands used to come at Star Trek warp speeds and now they were coming by Pony Express.

When I explained this to my Wonderful Husband, he chuckled and said “I think your horse died.” I agreed.

Looks like we both still have a sense of humor.



 Yee Haw!

Monday, July 16, 2012

Don't Fall for Me

Falling in love is great, falling asleep is good (unless you are driving) and falling down is bad, very bad. I wish I could write this story with my usual humor, but I can't. You see, Parkinson's disease related falls can have serious and sometimes deadly outcomes. 

Several of my neighbors have fallen in the last year and many of my Parkie friends have fallen as well and for some of them, their falls proved fatal. Even my Wonderful Husband took a tumble about six months ago and still has a discolored knee to remind him to be careful. So far, I have remained upright, but I am overly cautious.

Some of the things I do to prevent myself from falling probably look funny to whoever sees me doing them, but I don't care. I always sit down to put on or take off my shoes and socks, always, even if it means sitting on a curb to remove the giant "grain of salt" sized pebble that is stabbing me in my foot as I walk with George and Freida in the mornings. Yes, I can probably still balance on one foot and do it standing up, but why take a chance on breaking my arm?


Broken arm

I sit on a chair or lean my backside up against a wall to take off or put on my shorts or jeans. Always, even in winter when the wall is cold (that will wake you up real quick). 
Chair next to closet

I take extra care when stepping up curbs, walking on uneven surfaces and navigating steps. I have tried my best to "fall proof" our home. I only use the walk-in shower which has grab rails and seating, no more tubs for me. Fancy throw rugs are history, to easy to stumble on. Even the height of our bed is designed to make it easy for me to get in and out of. There is a shelf in the garage and another one right inside the entry door, where I can set my packages so I don't try to come in the door with both hands full. 

A few Parkies I know haven't been so lucky; one has fallen multiple times, in her bathroom, because her feet and walker get tangled in the rug on the floor. Get rid of the rug, I said. But she won't. Why? Because it matches the shower curtain, towels and window coverings and it looks pretty. 

Another one has fallen both up and down her entry steps when she tries to take her two dogs out for a walk, she gets tangled in their leashes. I told her to have her son build a little fenced in area, right outside the door, so she can let the dogs go out by themselves, and then she can come down the steps, holding on to the railing, sit on a chair, put the leashes on the dogs and take them on their walk. Has she? Nope, she doesn't want to bother her son. 


Foot in a cast
Another one tried to climb up into his truck with both hands full, fell over backward and ended up with a huge knot on the back of his head and a dozen smashed eggs. All he had to do was open the other door and put the packages on the passenger seat and then his hands would have been empty. 

Why are these folks so stubborn? I don't know. If I woke up blind tomorrow morning, I wouldn't jump in my car and try to drive. I wake up every morning with Parkinson's, that's the reality. So, I sit on the side of the bed and make sure my legs are going to work before I head for the bathroom. I don't want to fall and I will do everything I can to prevent it. 

Shirley is a very good Parkie friend of mine, and as her Dad was losing his battle with Parkinson's (he, too, had taken a few falls), she asked me to write a song about Angels. I wrote Angels in the Corner about a girl who was feeling hopeless, and then suddenly realized, that her Angels were in the corner, as always, watching over her, and that everything would be alright. Shirley's Dad is now one of HER Angels. 

I have plenty of Angels in MY corner, watching over me, so be careful. Please don't fall, for me.

In memory of my most recent Angels: Jim, David and Dick.



video


You can find all my videos on my YouTube channel:

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

Tuesday, July 10, 2012

Parkinson's Humor - The Book...an update

I have turned my blog stories into a book.  

Why create a book? Why not? It's another way to spread the laughter.

I found out that getting a book published by a major publisher is nearly impossible, however, my friends in the local writer's club said you can self-publish and eBooks are the future and you can do-it-yourself, if you can figure out the complex formatting requirements. So after much research, I created an eBook for Amazon, so people with various eReaders could download it.


Book cover
Much to my surprise, I also had a lot of requests for a regular book, so I went back to work and created and self-published a paperback version,which had completely different formatting, of course. I did all the work, designed the covers, made sure it looked like a book should and uploaded it. This paperback version is available on Amazon. 


back of book
I can purchase the books directly through the printer and sell them myself, which is what I am doing right now. I write these stories in hopes of brightening someones day, which in turn, brightens mine.

I would love to be able to give the books away for free, but I didn't have the winning numbers on the lottery ticket I bought last week and Publisher's Clearing House didn't ring my doorbell. I am hoping to recruit some sponsors, but it takes time. 

So, if you are reading this and would like a copy of Parkinson's Humor, the book, contact me at yumabev@gmail.com and I will send you one for $15.00 + actual postage (USA and Canada only) The rest of the world, it's just too expensive for postage. I'll even sign it.
Yuma Bev singing

If you are a Parkinson's Group and would like to use my book as a fundraiser, I will sell them to you at cost and you can keep all the profits for your group.

If you would like to be a sponsor, or had those winning lottery numbers, please contact me and we'll see if we can spread the laughter to those who need it most.

Have a Happy Parkie Day!

yumabev@gmail.com


Sunday, July 8, 2012

Parkinson's Disease: Marching to a Different Beat

In the summer before I started Junior High school, I decided to play clarinet. Why? Because of Barbie. Barbie was my best friend and lived next door. She was a year older and had everything this twelve year old did not. She was pretty, with thick wavy hair and straight teeth. And while I was still wearing clothing sized for first graders, she wore teen size clothes and needed a bra . Barbie played clarinet, so I wanted to play one, too.
Barbie

The school held a band camp. The first thing they taught us was how to march, not how to play anything, just how to march. We had to take two steps for each yard line on a football field. I marked lines on my driveway with chalk and practiced until I could step off exactly eighteen inches, even with my eyes closed. I never was a good clarinet player, but I was an excellent marcher. For years, I could accurately step off how many yards something was, until Parkinson's Disease affected the way I walked and stole my built in yardstick.

In my ongoing effort to learn how to undo what Parkinson's has done to me, I attended a Music Therapy program at the Parkinson's Conference in Irvine, CA, a couple weeks ago. The speaker stated that music could be used to improve your gait and help your brain re-learn how to walk normally. I was already doing Treadmill exercises recommended by another speaker at the same Conference, so I decided to add some music. I picked out some favorite tunes, including some I used to play in my school band days (Louie Louie and Tequila) and concentrated on walking to the beat. I noticed a big difference right away. My gait evened out and my arms began to swing like normal, plus it was fun thinking about those teenage years. 

I actually enjoy Marching on my treadmill and the improvement in walking seems to be lasting all day. Maybe I'll get my built in ruler back. (Honey, where's the chalk?) 
Bev playing clarinet
Hmm, I wonder what ever happened to that old clarinet?

This is video of me walking on treadmill, and then adding music. Click on > below. 




video

So, my Parkies friends, put on some Marching music and get walking to a different beat.

You can find all my videos on my YouTube channel:
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 or your favorite online book seller. Thank you and have a Happy Parkie Day!

Monday, July 2, 2012

Parkinson's Disease: Mind over matter, gray matter

People are always surprised when I answer Black & White as my favorite color, not blue or pink or yellow. I like the definitive contrast, it's like yes or no, right or wrong, good or bad, night or day, hot or cold, yin or yang, humor or sadness. 


Some of my Black & White shirts
I have more Black & White shirts in my closet than any other color (zebra print, polka dots, stripes, floral, checks, you name it, I probably have it). In pants, jeans in various shades of blue dominate, but only because they match so well with the Black & White shirts, however, I'm always on the lookout for zebra print jeans like Rod Stewart or Madonna might wear. 

          
Black & White dishes
I have Black & White print dishes, Black & White accents on trash cans, file boxes, pen holders, the paper shredder and the background for this blog. 


I even have a Black & White bedroom and it's one of a kind, because I made the quilt and curtains myself.  


Black & White bedroom
Black & White bedroom



Parkinson's Disease ribbon
And then I got Parkinson's disease and there is nothing Black & White about it. It's all gray. It's a disease of our brains or gray matter. No two people have the same exact symptoms or react the same way to medications, even the ribbon for Parkinson's disease is gray. 

I guess it's fitting, because everyone knows that if you mix Black & White together, you get gray, but I wish at least one thing about Parkinson's disease could be Black & White.

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 or your favorite online book seller. Thank you and have a Happy Parkie Day!