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 

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!

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 Parky 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 Parky 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.

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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

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

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. 

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:

https://www.youtube.com/user/ParkinsonsHumor

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!

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!

Parkinson's Disease Research: Exercise

I went to three Parkinson's Disease seminars recently and the common theme was exercise is good for people with Parkinson's Disease. I can't say this was news to me, but I did learn the science behind it. 

YumaBev and Anna from NPF 

I heard some humorous quotes like "Would you rather exercise one hour a day or be dead twenty-four?" and "Exercise can slow down the escalator to Parkinson's hell". Both of these are paraphrased because I've lost my short term memory (if you find it, please return it). 

So, here's the scoop. People are lazy and people with Parkinson's Disease are worse. We can blame the laziness on the loss of dopamine, which not only helps control movement but is also one of the "feel good" chemicals in our brain. And since doing the things we used to do no longer "feels good", we Parkies tend to get lazier. 

Researchers know this, so they gave rats, which are also lazy, Parkinson's Disease symptoms by injecting them with MPTP or something similar.  They then measured the movement abilities of the Parkie rats and compared them to non-Parkie rats. They took brain scans of both as well, and carefully documented the results. 

They then split the Parkie and non-Parkie rats into two groups: One group was allowed to do as they wished and the other group was forced to exercise by placing them on treadmills. It seems cruel to force them to walk or run, but I guess that's why they use rats and not cute little puppies or kitties, most of us don't feel sorry for rats.

The results were exciting. The Parkie rats who were forced to exercise showed vast improvements over the Parkie rats who did nothing. The difference was noted not only in their movement ability, but changes were visible in the brain scans as well. The forced exercise didn't show much change in the non-Parkie rats (except maybe they were skinnier). 

This proves that exercise is a very good thing, but you can't force people with Parkinson's Disease to walk on treadmills, so we need to be motivated. Those quotes I mentioned above motivated me. I usually walk every morning, but now I have added walking on a treadmill to my daily routine and I feel better already. Here is my first day and third day video (and I'm much prettier than a rat).

Did you see the difference? 

So, my Parkie friends, don't be lazy rats, get up and exercise (and if you have a treadmill, use it).

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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!

Parkinson's Disease Research: Botched Recipes

Most everyone knows Parkinson's Disease is caused by a loss of dopamine producing neurons in our brains, but most people don't know HOW the scientists get lab animals to have Parkinson's Disease symptoms so they can be used for research (they don't go looking for animals with shaky paws). I went to a Parkinson's Disease symposium hosted by the UCSD Movement Disorders Clinic and the Parkinson's Association of San Diego and found out. 

Back in the late 70's, the illegal drug culture spawned amateur home chemists who were cooking up concoctions in their kitchens, using available drugs (both over the counter and prescription) and anything they could find in chemistry sets and under the kitchen sink. They would try their creations out on themselves and friends and if the desired high was achieved, they would make huge batches and sell it to others.

typical illegal drug lab

This is what happened in the San Francisco, California, area back in 1982. One of these enterprising home chemists created something which he called New Heroin and began selling it to local addicts. The chemical abbreviation for his creation was MPPP, which stands for words I can't even begin to pronounce. Unfortunately, one day, he messed up his recipe (he was probably high at the time) and ended up producing MPTP, another long unpronounceable chemical abbreviation, instead.  

All of a sudden, addicts were showing up at area emergency rooms, looking like they had advanced Parkinson's Disease. The onset was swift and irreversible, something had killed off most of their dopamine producing neurons and the public was warned about a dangerous new drug out on the streets. Eventually, the home laboratory was found and destroyed, but not before dozens of addicts were adversely affected.

A Neurologist in the area, having been called in by the hospitals, realized the potential of this mistake and now, thanks to this botched recipe, scientists are able to give lab animals MPTP, or a variation of it, which causes them to have Parkinson's like symptoms, so they can be used for research.

Scientist

The humor of this story: A stoned druggie screws up making a concoction to get himself stoned and ends up causing people to turn into stone and ultimately helps people with Parkinson's Disease get un-stoned. You can't get much more ironic than that.

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

The ABC's of Parkinson's Disease Handwriting

One of my earliest symptoms of Parkinson's Disease was a change in my handwriting, though I didn't realize it at the time. Difficulty writing is the main thing I hate about having Parkinson's Disease, and even though I joke about it in my songs, in reality, I don't find anything humorous about it. 

The medical term for it is Micrographia, which simply means small writing. Our letters tend to get smaller and smaller and closer together until we can no longer read it (heck, I don't think even a Doctor could read mine). Add in some tremor and most of us just quit writing all together. I fall into this category.

Everything I have read has said the handwriting problems can't be fixed with therapy or even the DBS procedure, so I pretty much gave up hope of ever writing again, until this past week.

I went to several Parkinson's seminars in Southern California last week and heard a speaker talk about reprogramming our brains to normal. She was discussing the idea of using large exaggerated movements to show our brains that small wasn't normal and she mentioned handwriting. She didn't elaborate, but I put on my thinking cap and decided to try an experiment.

I hope you will experiment with me.

Please take a piece of paper and write the following: The quick brown fox jumped over the lazy sleeping dog 1 2 3 4 5 6 7 8 9 10 and sign your name.

Now, watch this video and do exactly what I do in it.

(It takes less than 5 minutes, what have you got to lose?)

Please do the exercise a total of 3 times, I was holding the TV remote control in my hand, but you can use anything larger than a standard pen. 

Now, please write the same thing as you did before and let me know if you see a difference (send me an email at yumabev@gmail.com). I was completely amazed at my results. 

The improvement doesn't last, but why should it? Parkinson's Disease is working against you 24 hours a day, so we have to keep fighting it. I found the improvement lasted a day or two, then the writing returned to small & illegible, but if I did the exercise again, or something similar, the improvement came back. I am thrilled to be able to write again and I hope you get similar results. Here is my before and after:

Before and After the exercise

Please let me know if you get similar results. yumabev@gmail.com  Thanks.

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 Parkie Day!

YumaBev gets new glasses

Optical, dental, pharmacies line the roads

When I was in Mexico last week, I got an eye exam and new glasses. Just like Pharmacies and Dentists, Optical Shops are prevalent in Algodones. I didn't need a change for distance, but I did need a change for close-up (easier to get new glasses than lengthen my arms). This particular change has nothing to do with Parkinson's Disease, it, unfortunately means I'm just getting older. Darn, I can't blame it on the PD!

Lots of frames

We got there early, and surprise, the Algodones Optical Shop was already open, so I had a chance to try on some new frames before the optician arrived at 8:30am. They have frames of every size, shape and price range. I tried on a few and then got called into the exam room.


First he checked my pressures for glaucoma, they were good. He had me read the distance chart and began the usual "Which is clearer, lens A or B?" routine. Next he handed me the small print card, and my hands promptly began to shake. My tremors aren't bad, unless I am holding something in my hand with my elbow bent. I don't read books for this reason and I read the newspaper with it laying flat on the dining room table, so I don't have to hold it. Finally, he held the card for me and we got to where I could read the smallest type. He sent me out to pick out frames.

Rows of frames

Picking out new frames is difficult, and I rely on my Wonderful Husband to choose what looks best. He hates this, but I tell him he sees me more than anyone, so I only care if he likes them. I tried on dozens and we finally settled on a smaller frame than what I usually wear. I found a duplicate and gave both to the girl behind the counter (it was buy one, get one free). 

Not these frames

Not these frames

The Optician came back over, took some measurements and I was done. I decided to add some tint to one pair and asked to have my old glasses made into sunglasses. They said my new glasses would be ready in 2 hours, so I left and went to my Dentist appointment.

When I was done at the Dentist, all 3 were ready, my 2 new pair and new "old" sunglasses. They did some final adjustments, gave me a couple of cases and cleaning cloths and I wrote them a check for $50 (now you know why I go there). I checked out my new sunglasses and my brand new ones. I really like them, Hubby did good!

new frames

new sunglasses

We strolled the sidewalk where you line up to leave Mexico and headed back across the border. 

In winter, there are people for blocks 

Not a bad day, walked over at 8:15am, got Rx, new glasses and teeth cleaned and walked back at 11:30.

Clicking on colored words will open a new window with another 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!