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Wednesday, October 21, 2015

Back to the Future, My Future

YumaBev's butterfly ring
On July 24, 1985, my Wonderful Boyfriend asked me to marry him. He had bought me a beautifully delicate butterfly ring. I said yes, of course. I love butterflies and I still love my butterfly ring 30 years later. Other than my wedding band (which was my Mother's), the butterfly ring is the only jewelry I always wear.
Our Engagement Photo
On October 9, 1985, my Wonderful Boyfriend and I went to see the movie Back to the Future, starring Michael J. Fox and Christopher Lloyd. To be honest, I was more familiar with Lloyd's acting work than I was with Fox's. Sorry, Michael, but I had never watched Family Ties

Back then, I was busy with our wedding plans. I was making my bridesmaids dresses and had started on them the day we saw the movie. 


Lynn, Lani,YumaBev, Randolynn

December 14, 1985, started off with an overnight thunderstorm. Since relatives had come in for the wedding, I ended up sleeping in a different bedroom. The downspout for the rain gutter was right outside and I remember the gravel from the roof making a loud pinging noise as it rattled down the spout. I didn't get much sleep and was concerned the rain would ruin our wedding day.

The weather on our special day turned out to be perfect! Blue skies with puffy white clouds and temperatures in the 70's. At the end of the ceremony we each picked up lighted candles and jointly lit a single candle; two lives becoming one. 


YumaBev and Wonderful Husband on their wedding day! 

As the years flew past, my Wonderful Husband I enjoyed many, many sunny blue days together and only a few stormy ones. We were there, together, when our only Grandson was born. We traveled to all 50 states and made friends all over the USA. We lived in the moment and didn't worry about the future. We were also together, sadly, when we lost people we loved; my Dad, his Son, my best friend Jeremy. 


Newborn Grandson 

I had no idea back in 1985, how much I would end up having in common with Michael J. Fox. I don't remember when I heard that he had Parkinson's (PD). I knew so little about PD then. My only experience with PD involved the elderly customers at the bank where I worked. Their hands shook as they tried to sign the back of their checks.

Even when my Dad got diagnosed, I knew very little. I was, at that time, symptomatic for several years but did not know I had PD. It doesn't matter. What matters now is the future of all the people with Parkinson's I've met, online, from all over the world. If you can afford it, please consider making a donation to the Michael J. Fox Foundation for Parkinson's research.

My future with Parkinson's is uncertain, but I know I can count on my Wonderful Husband to be there for me. And he knows, he can count on me to be there for him. We will spend our future, just as we have spent the last 30 years: Together, with Love and Humor. 


30 years later, still laughing and enjoying life, together

PS  October 21, 2105, the Back to the Future II date is also my Wonderful Husband's birthday! 

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Sunday, October 18, 2015

YumaBev DBS - 3 Years Later

October 18, 2015 is THREE years since Dr. Norton made me a member of the exclusive "Yes, I do have holes in my head" club. So, the big question is...How I am doing?

First, the positives from my DBS for Parkinson's disease surgery:

My sense of humor is still intact! My witty quips take a lot longer to find their way from my brain to my mouth, but sometimes the delay and my slurred speech makes them funnier. 

My main Parkinson's disease motor symptoms are under control: Tremor is gone, unless I'm under extreme stress. Slowness of movement (bradykinesia) only happens when I am very tired. Rigidity only happens if I stay in the same position too long or get tired.  

I am still taking carbi/levodopa medicine. Prior to surgery, I was taking five or six 25/100's per day. Now I take a total of two, cut into halves, primarily for speech and that ugly upper lip curling thing.


Voltages are low
My DBS settings are very low, so my generator battery should last at least five years.


Battery  level is good

The small amount of hair they shaved off has just about caught up to my overall length, but my Wonderful Husband (who cuts my hair) still hasn't got used to the weird bumps on the top of my head and behind my right ear. They really do feel like I'm about to sprout horns or antennae. 


Just a few inches shorter on one side

I am sleeping well and an average of 8 hours a night. I know I must dream, and sometimes try to remember them as I waken, but by the time I get out of bed, the memory is gone completely.

On a secondary health note, my third post breast cancer mammogram was okay, so that is very good news.

Now for the negatives:

Fatigue is still a problem. It can come on suddenly; with little warning and when it does, I am done. I must stop what I am doing and rest. When it happens, it feels like I'm wearing lead-lined clothing, every part of my body feels heavy. Sleep usually is the best way to fix this problem, so naps are a part of my daily routine. 

Speech: My speech varies between almost normal to unintelligible depending on my medicine cycle and the situation. My mouth just doesn't work right. I drop consonants in the beginning of words or syllables in the middle. 
For instance "Are you ready for breakfast" may sound like "eryu eady fo eakfass." My Wonderful Husband has become quite adept at deciphering what I am trying to say.

The volume varies as well. The thing I miss most is the loss of inflection and tone. I can speak clearly, if I shout or want to sound like a robot, but it's hard to remember to speak that way ALL the time. And who would want to? 

Give me a microphone, however, such as when I am speaking in public or at our support group meetings and I can force myself to speak clearly. Doing this requires all my brain power and afterwards, I am totally exhausted. I never thought that talking would be such hard work. 

And yes, I know all about the LSVT-LOUD® program, but it's not available locally as outpatient therapy and even if it was, I couldn't afford the co-pays. 

Multitasking: I find I can no longer multitask. I no longer have multiple tabs open on my PC, I must do things one at a time. It takes me longer to figure a 20% tip, when it used to be automatic. I must never leave the stove if I am cooking something. I cannot type a blog story while the TV is on. I have turned the Bluetooth off in my car and now let the phone go to voicemail if I am driving. The built in GPS in my brain is still intact, so I have no trouble finding my way around town or even in big cities. But the radio must be turned off. 

Cognitive issues: My short term memory is worsening. My facial and name recognition, which was never good to begin with, is awful. I run into people who know me and I don't have a clue who they are. They may not even look familiar. This is especially true if I see them out of context (i.e. seeing someone from the support group at the grocery store). That being said, I still know and recognize my close friends and family and I can remember their names and birth dates. The good thing is I can watch a movie that I know I have seen sometime in the past and not remember how it ends. This has made my TV viewing more pleasurable. 

Balance: Braking is still a problem, so I am extra careful stepping off curbs or walking down inclines. The other balance problems are improving with each exercise class I attend. 

The question I get asked the most is...Would I have the DBS surgery again?

My answer is a resounding YES! 

All the negatives listed above may have happened even without the surgery. They can all be part of the normal progression of Parkinson's disease. I know for certain my motor symptoms would definitely be much worse without the surgery. 

Let's let the videos speak for themselves.

Before DBS video:
video


Three years later video:


video


To watch all my videos, visit my YouTube channel:
https://www.youtube.com/user/ParkinsonsHumor

Monday, October 12, 2015

YumaBev's Big Summer Adventure

I made big plans for the Summer of 2015. I had a few months off from our local Parkinson's Disease Support Group meetings. I had told a few neighbors that I may not be around to check on their places. I looked at maps, checked out cruises and train excursions, checked hotel prices, got the tires rotated on my car and the oil changed. I was all set.

Then I got an email inviting me to attend a special Support Group Leader conference: in Phoenix, Arizona, in the beginning of July. So, the plans got put on hold and instead I read a book. 

It was Most of Me by a Parkie friend Robyn Michele Levy. She and I had traded books a few years ago, but I had never read hers. It's about her own journey with both Parkinson's and Breast Cancer and I just couldn't bring myself to read it any sooner. Robyn has a bawdy sense of humor, and I laughed quite a bit as I read it. I loved it!

Right after the Group Leader conference, my step-daughter and Grandson came to visit and we had a wonderful time. After they left, I got out my maps again. We were just getting ready to head over to the beach when wildfires broke out in California, right along our route. So, once again, I cancelled our plans and read a book.

It was Both Sides Now, by Alice Lazzarini, PhD. Alice was a research scientist, working on finding a causative gene for Parkinson's, when she got Parkinson's herself. Talk about a bizarre twist of fate. It's an excellent book, more about the workings of a researcher and I learned quite a bit. I contacted Alice and sent her a copy of my Parkinson's Humor book. Alice's book was one of the few useful things I got out of the Group Leader Conference.

After finishing Alice's book, I once again dug out my maps. This time, I thought we'd head up to Alaska to see friends who had invited us to come visit. Then our phone rang. It was our Alaska friends, saying "Don't come, the smoke from the wildfires is terrible. We can't even go outside." So, I read another book. 

The next book I read was Parkinson's Diva by Maria De Léon, MD. I've known Dr. Maria for several years, though we've never met in person. She was the person I called when I woke up after breast cancer surgery and couldn't move my arm. 

Her book is specifically geared for Women with Parkinson's. Besides being a Movement Disorder Specialist herself, she also has Young Onset Parkinson's. Another bizarre twist of fate. 

Her book details many of the female gender related sides of Parkinson's and I think it should be required reading for every medical school student! She also has helpful hints for us Parkie gals who still want to be, in her words, Diva-licious! It was a wonderful book and one I will cherish.

It was now mid-August, so it was either go now or give up and stay home. I planned a trip to Montana. We have Winter neighbors who have a Summer home there. We were planning to leave when the phone rang. It was Montana. There were wildfires all around them, too. The heat was awful, the smoke was choking them and they were headed back to Yuma early. So, I tossed the maps in the trash and read another book. 

The last book I read was In This Together by Ann Romney. Yes, that Ann Romney, the wife of the Presidential Candidate. This book is about how she and her family handled her diagnosis with Multiple Sclerosis (MS). As we Parkies are well aware, neurological illnesses affect the entire family and it's even harder when Mom is the one who becomes ill. 

I didn't know anything about MS prior to reading it, but the similarities with Parkinson's are interesting. I learned a lot from her book, and the timing was perfect, because I was asked to speak about how "Humor is Good Medicine" at a MS conference here in Yuma. 

All these books had something in common, they were all about how Women deal with chronic illness. They all realized, just as I did, that you need the three H's; Hope, Humor and plenty of Hugs. 

So my big Summer adventure turned out to be a READING adventure! And that's just fine. I got to sleep in my own bed with the temperature set just right. It gets hot in Yuma, but there were no wildfires. Who knows, maybe next Summer, I'll forget about traveling and just read. I've pretty much been everywhere anyways, so why bother to go see it again. 

Anyone want to trade books? 



PS All these books are available from Amazon.com

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Wednesday, October 7, 2015

The Tin Man Tries for Gold, Wins with Silver

Back in May, I had a woman come talk to our Parkinson's Disease Support Group about the SilverSneakers® fitness program. There are no Parkinson's specific exercise programs available in our area. The extreme Summer temperatures were already here and most of us had stopped doing outdoor activities, including going for walks. I thought it might be a fun way for my group to keep active and socialize, and all in air-conditioned comfort. SilverSneakers® is a fitness program for older adults and is offered as a free benefit through many insurance programs. 

My hopes were dashed when the overly-enthusiastic instructor started talking about "cardio" and "squats" and "lifting weights." By the time she left, she had scared the daylights out of our mostly sedentary group, myself included. I should have gone and checked it out, but I was afraid of falling or getting hurt. Trust me, there is nothing humorous about getting hurt when you have Parkinson's.  

In late August, I met an older lady at the Post Office. She asked if she could go ahead of me in line, because she was late for her SilverSneakers® class. She was using a walker and moving very carefully. Curiosity got the best of me and I asked how the classes were? She said they were great and she did the entire class sitting down. She proceeded to brag that she was the oldest in class, at 89!


Between the Summer heat and my foot problems, I'd
Parkie Tin Man Carl Ames
been too inactive. M
y Parkinson's riddled body was beginning to feel like the Tin Man from the Wizard of Oz; rusty and badly in need of lubrication. I decided to get some class info. It was a benefit of my insurance, and I could use all the facilities for free, not just the classes. My Wonderful Husband went with me to the first class.




Sarah, the instructor (not the one who came and talked to our group) told us to do whatever we felt comfortable doing. If you need to sit; sit. If you start to feel pain; stop. She said there was only one rule: You must keep breathing! No one was allowed to stop breathing in her class. This made the others laugh. 

As it turns out, the "cardio" is moving our feet to music. Similar to basic line dancing steps. The "squats" are done hovering over a chair, not squatting down by the floor and the "weights" are optional and start at one pound. We do stretches and balance exercises. We squeeze rubber balls or toss them in the air and try to catch them. We alternate between sitting and standing. We concentrate on different areas of the body on different days, but always move our whole body every class. The various movements change as well as the music, so each class is different and doesn't get boring. 




So, we started. I was in the back row, right next to the 89-year old from the Post Office. It only took a few minutes to realize I have two left feet. What happened to the Disco Queen of bygone years? I kept tripping over my own feet! When she added arm movements to the footwork, I found I could NOT do both. I found myself holding on to the chair for balance and I sat frequently. But I made it through the entire class! NO ONE cared that I was slow, stumbling or sat down! The others were encouraging and friendly (even though I was obviously the youngest one there, except for the instructor).


Here is a video of me I made after the first class:



video


Classes are three days a week and I haven't missed one yet. My Wonderful Husband decided he'd rather do the more strenuous pool exercises, so he goes his way and I go mine and we meet up after.


After a few weeks of classes, my rusty Tin Man body is feeling much better. Sure, I had a few muscle aches at first, but at least I KNEW what caused them. It is much easier for me to get up from sitting. I am standing up straighter. The biggest improvement has been in my balance! Watch my after video:



video


All in all, I'd say I was definitely a WINNER! I've got golden hair, silver sneakers and bronze skin to go with my Tin Man body! 

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To find a SilverSneakers®class near you, visit their website: https://www.silversneakers.com/


To watch all my videos, visit my YouTube channel:

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