A New Challenge for YumaBev

It's been awhile since I've written a new story and I apologize to all my readers. 

In February of last year (2012), I had an abnormal mammogram, which is not unusual for me, however, I didn't follow through with the extra testing they wanted. Later on, I found a lump in my right breast, just prior to my DBS surgery and told no one, not even my Wonderful Husband. Why? I was afraid it would make me ineligible for the DBS if it turned out to be cancer. Because it seemed so huge to me, I was terrified it would show up in the pre-surgery chest x-ray. It didn't, but still I never told anyone. Then I had another mammogram in March of this year (2013) and, of course, it was abnormal. This time, I went through the extra testing and found out it was cancer on April 15th. 

Do I regret not doing anything about it last year? Absolutely not. Why? Because to me, QUALITY of life is way more important than quantity and I don't think I could face what's ahead without the DBS and how much it improved my quality of life. However, keeping this secret almost destroyed my marriage. My Wonderful Husband's first wife never woke up after brain surgery and it turned out she had cancer. I didn't want to put him through that again, so instead, I tried to push him away. I said mean and hurtful things to him and actually told him to leave.

Fortunately, for me, he's just as stubborn as me (maybe more so) and he didn't leave. Keeping my secret took it's toll on me as well, the stress of not knowing is worse, I think, than the cancer itself. 

SO, here's the plan, for now. My lumpectomy is scheduled for May 7, 2013 in Tucson. Dr. Thomas Norton (my DBS surgeon) got me the best breast surgeon he knows, Dr. Vanessa Roeder and we have requested Dr. Robin Kloth to be the anesthesiologist (she got me through the DBS, so I trust her). Once the lumpectomy is done and all the bits and pieces Dr. Roeder removes are examined, in detail, I will find out if it has spread to my lymph nodes. My guess is it will be a week before we know more. More stress of not knowing to deal with. After that, radiation of some kind or another and maybe chemo (let's hope it's just radiation). 

Because of my Parkinson's, the recovery time will be longer and because of my allergy to anything sticky, I decided against a mastectomy. Did I make the right choice? I don't know. That's the problem with breast cancer. You have to decide which surgery you want and then find out if it was the right one.

So, wish me luck, say a prayer or two for me and say three or four for my Wonderful Husband and hopefully I will be back being silly very quickly. Besides, my Wonderful Husband treated me to a new sequin gown,  so I have to get well enough to actually wear it somewhere.

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

You Have Just Been Diagnosed with Parkinson's, Now What?

First, don't panic. Go ahead and get mad, throw a fit, cry for a while, then get over it and get on with your life. It's just Parkinson's disease, it won't kill you. It could be a lot worse, you could have cancer.

Second, find out all you can about Parkinson's, go to the Parkinson's Association websites (I have links on here), talk to other Parkies (link to chat room on here), join a local support group. The more you know, the better you can do what's right for you. Don't count on your Doctor to tell you how to handle this, their job is to treat the part of your brain that is messed up. It's your job to figure out the rest. If there is a Movement Disorder Specialist (a neurologist who is a Parkinson's expert) within driving distance, try to see him or her. If not, see a neurologist, your primary care doctor isn't going to know enough to treat you properly (even though they may think they can).

Third, laugh. Laugh a lot. Parkinson's will make you walk funny, talk funny, write funny, think funny and make funny faces, so you might as well have fun with it and laugh.

Fourth, plan for your future, now. If you are younger, you will probably need to quit working before you thought you would, so start planning to be able to go without a job until you can get approved for disability (which in the USA can take several years). If you are considering moving into a different residence, think about stairs and tight hallways and tiny bathrooms that might give you problems down the road (the key word in this sentence is might).

Fifth, start being pro-active right now. Eat more fiber; it's not hard, buy a cereal with whole grains (Cheerios, Frosted Mini-Wheats or Raisin Bran). If it's not what you are used to, mix it in with your regular cereal. Buy whole wheat bread (they make some that tastes just like white bread). Add some carrot sticks to your evening snack, or a Caesar salad at dinner. 
Exercise or at least get up off the couch and move. Take a walk, stretch up and touch the top of the door frame every time you walk through a doorway, take extra long steps on the way to the fridge to get a bowl of ice cream. Parkinson's will make you curl up and get small, so fight it by doing things bigger.

Sixth, pay attention to what your body is doing. Make a chart of your symptoms, especially when you have a new prescription medicine or changed the dose. There is no testing for Parkinson's, YOU have to tell your Doctor exactly what is going on, so pay attention. Did that weird sensation start before or after you took that new Rx? Did the new Rx make you feel better or worse? Did it improve the tremor but cause another symptom? You NEED to know this.

Seventh, learn the Parkinson's medical jargon. After all those years in Medical School, your Doctor has forgotten how to talk like a normal person. He will only speak "Neuro-lese", so you best Learn the Lingo.

Eighth, talk to your family. The natural impulse is for them to "take over" and do anything that you have trouble doing. Tell them, nicely, that it is best for you to continue to do as much for yourself as you can. So what if it takes you fifteen minutes to button your shirt, you just need to start earlier. Ask them to please ask you IF you want help. If you do need help, ask for it, but be sure to say thank you afterwards, and mean it! Your whole family is affected by this Parkinson's thing, and they are just as scared, or more so, than you are.

Ninth, be aware that you are going to change both physically and emotionally. You may find yourself sleeping less, you may not enjoy the things you used to. Your face may become blank. All of these things can be harder on your family than it is on you, so try to be extra nice to them and explain ahead of time what might happen, so they can be prepared. 

Tenth, don't take Parkinson's too seriously. A positive attitude is actually beneficial for us. Laughing can stimulate your brain to produce more dopamine, so go ahead and cry, get mad, but then become a Happy Parkie. Keep a positive attitude, it REALLY does help.

And last, beware of people touting miracle cures. Yes, they may make you feel better for a little while, but if it was a real cure, one of the big Parkinson's Foundations would be shouting it from the rooftops.

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

YumaBev becomes the Top Banana

For the last couple of years, I have been attending our local Parkinson's Support Group meeting. I am the youngest member and the silliest one, too. In January, our current leader, Greg, decided to step down and asked me to take over the group. I said yes and within an hour or so, all the official paperwork was done. So, now I was the Top Banana and even had the costume to prove it.

February was my first official meeting and mostly I just gave people information about upcoming seminars, what to do if you have to go to the hospital, the dreaded "exercise is best" talk and threw in some laughs as well. 

NPF's Aware in Care Hospital Kit

At the March meeting, I played my before and after DBS videos and we all sang along to my song parody called Winter Wonderland. 

I try to keep the meetings upbeat and informative; this time handing out flyers for a little known benefit that might help some of our Parkies who are Veterans, and another about a USB Medical Bracelet from the Muhammad Ali Parkinson Center. 

I'm hoping to get the Mayor of Yuma to come to our April meeting and personally bring the Parkinson's Awareness Month Proclamation. And after that, who knows. Most of our members will be heading back north soon, but the rest of us will find something to do over the long hot Summer. 

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

YumaBev goes Jeeping

I went Jeeping in the desert with my Wonderful Husband three days last week. Now, that may not sound like something worth writing about, but it is. You see, going out Jeeping is something I would never have attempted prior to my DBS  surgery. Why?
1. Climbing in and out of a Jeep would have been a near impossibility.
2. Bouncing around would have jarred my rigid body too much.
3. I would not have been able to relax, and my Parkinson's symptoms would be aggravated.

Driftwood Jeepers

Most of our Jeep group are couples and my Wonderful Husband is one of the few singles. I don't mind his going alone, but this past week was different. Valentine's Day fell on Thursday, which is Jeep day. I assumed they would cancel Jeeping, but no, they did just the opposite. They planned a special Cupid trip and they wanted ME to come along!

Large saguaro cactus

Jeeping is an all day event and I was worried, so we took a trial run with one of our neighbors on Tuesday. I did fine, until the last time I climbed back into the Jeep. I miscalculated and bonged my back on the door frame. Ouch! It left an ugly bruise, but I was fine by the next day.

Thursday morning arrived and I was ready; sort of. I was still nervous about spending ALL day in the desert. We packed some lunch and took off. The first part of the trip was fairly smooth. When we stopped for lunch; "Cupid" gave all us girls silk roses, heart shaped plastic rings and heart shaped candy. Then "Cupid" had another surprise; a cake! So, there we were, in the middle of nowhere, surrounded by sand and cacti, eating cake. It was fun.

Valentine's cake, in the desert

After lunch, the group split up. Most took the more challenging and bumpy route back home. We went back the way we came and another Jeep with first-timer passengers came with us. I had survived a whole day in the desert. An hour or so later, all 24 of us went out for dinner. It was a good day and I was glad to spend it with my Wonderful Husband and all our friends.

Others taking a bumpier route

A few days later, I went out again; just hubby and me, this time. They are building a new solar electrical plant in the desert nearby and he took me over to see it. It was interesting.

Our little jeep

Will I go again? Probably not for awhile. But it is nice to know that I CAN go.

PS This was the most exciting part of the trip. Look closely. Do you see the person climbing up the rock? No, it is NOT my Wonderful Husband, it's someone else's.

Rock climbing neighbor

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

Young Onset Parkinson's Disease Awareness Film

As a person with Young Onset Parkinson's disease, it aggravates me when people, especially those in the medical profession, makes comments that I am too young to have Parkinson's. "NO, I AM NOT," I want to shout, at the top of my lungs. I know most people think of Parkinson's as an elderly person's disease. Many think Michael J. Fox is a rarity or quite possibly the only one, but he isn't. There are hundreds of thousands of Young Onsets in the world, maybe millions, and yet, we remain hidden and ignored.

My goal for 2013 is to raise awareness of Young Onset Parkinson's disease, so I made a slide-show type film for the American Brain Foundation's 2013 Neuro Film Festival.  

I asked and received permission from 46 individuals to use their photographs and personal stories in my film. I was shocked by how long it took many of them to get diagnosed properly. I thought my eight year journey was unusual, but it seemed to be the norm. Many were told the exact same things: you drink too much caffeine, you are just under stress, you don't get enough sleep, you are too young to have Parkinson's or my favorite; it's all in your mind.

My film is simple: a slide show with narration, no fancy cinematography, no high tech graphics, no custom music, but I think it makes a good point. All those smiling faces are Young Onset Parkinson's patients. 

Please help me spread awareness about Young Onset Parkinson's disease by watching and sharing my film. 
To watch my film, use this link:  Not our Father's Parkinson's  or view it below.

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

Movie Night at YumaBev's

My Wonderful Husband and I both became Classic Movie fans in the mid to late-seventies, but for totally different reasons. He used to watch them to unwind AFTER work and I used to watch them to stay awake AT work. I worked as an attendant at the Orlando Airport parking lot. This was back in the days when the Orlando, Florida airport was about the size of the Yuma, Arizona one now, just four gates and a parking lot that held about 300 cars.

I used to work the overnight shift on Bob’s days off. The last flight came in around 2 am, and the first one in morning didn't leave until 6 am, so there were about four hours with nothing to do. We had to take inventory; write down the tag numbers of all the cars in the lot, but that only took 30 minutes. So, to stay awake, I watched Bob’s 12-inch TV. This was pre-cable or satellite dish and believe it or not, there was only one TV station in Orlando that ran anything but the test pattern after midnight. This station ran old movies; from the forties & fifties. Bob’s TV was black & white, but so were most of the movies, and so I became hooked.

TV station test pattern

Fast forward to 2013; all of my neighbors have owned RV's, some still do. One of them was telling a story recently about how his wife hauled almost 500 pounds of rocks back up north one year in their Motorhome. This reminded my Wonderful Husband and me of an old 1953 movie starring Lucille Ball and Desi Arnaz called The Long, Long Trailer.

We ordered a DVD of it online and had a movie night at our house. There were 13 of us and even though I have seen this movie many times, most had only seen it once (probably when it was new) or not at all. They knew the premise of the movie; too many rocks in a camper, so they all showed up carrying rocks as their price of admission! This was going to be fun, and it was.

They brought rocks for tickets

Sharon brought a huge paper bag filled with fresh popped popcorn, Nancy brought traditional “Movie Theater” candy and Jeri brought peanuts. We made sure everyone could see and hear. The movie began and so did the laughter and squeals of “OH, NO!” “Look out!” and “These people are crazy!” I’m not sure which I enjoyed most; watching the movie or watching the others.

If laughter can extend your life, then we added quite a few years to each of ours in those 103 minutes. Keep an eye out for it, on one of the Classic Movie channels, and have a few laughs yourself; who knows, you might become a Classic Movie fan, too.

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

Post DBS Results: Three Months After

It is now three months since they drilled holes in my skull, inserted wires and hooked them up to electricity (in the form of a generator implanted in my chest), so it's time for a DBS Surgery update.

The good news:

YumaBev hair growing back

I haven't had a single foot cramp since the morning of my surgery! My Parkinson's tremors, rigidity and slowness of movement are pretty much gone. I am taking less than half the medicines I was prior. My Stone Face has lessened. I have almost no dyskinesia. My hair is growing back (with more gray in it, unfortunately) and my sense of humor is intact, none of it leaked out.

The bad news: None really, except I can't wear strapless gowns anymore, but that's okay, they were always uncomfortable. 

No more strapless gowns

Since my last DBS update, I have made two more trips to Tucson, Arizona for programming. One just before Christmas and one last week (Jan 11, 2013). The one before Christmas was done by Dr. Norton, my surgeon, and the one last week was done by Stephanie (who runs a DBS programming clinic at Tucson Medical Center). Dr. Norton's settings took care of my tremor, rigidity and slowness. 

That being said, I am still having trouble with my upper lip, not only does it want to curl into an ugly sneer, it also tightens so that when I try to speak, it doesn't move, making me look and sound like a very bad ventriloquist. Stephanie tried some different settings, and I actually got relief for a day or two, but now my right foot wants to turn inward when I walk, so I think I may just forget about it and just continue to take the carbi/levodopa for my lip.

I still get tired very easily, and this past trip to Tucson was a very long day. My Wonderful Husband was "under the weather" so I made the trip alone. I won't do that again. 

YumaBev using chopsticks

I am sleeping about seven hours at night, on average, which is an improvement over the four to five before surgery. My dexterity has improved; buttoning buttons is no longer a problem and I actually ate with chopsticks the other night, however, my handwriting may actually be worse and my typing is erratic. My fingers seem to rest a bit too hard on the keyboard at times, causing things like thiiiiiiiiiiissssssss. 

All in all, I am very pleased with the results. The DBS surgery fixed, for me, everything Medtronic promised it would (tremor, rigidity, slowness). As for the rest, it is not a cure and will not fix everything. I still have a degenerative neurological illness and will continue to get worse, but for now, it's nice to be able to get myself dressed and undressed, fold sheets again and get up from a chair without help. 

Who knows, maybe I will be able to do a Parkinson's Humor Road Show this summer. I already have two bookings so far (one in nearby California on March 6th and one in New Orleans, Louisiana on April 6th) and I am sure there are hundreds of Parkies and Parkinson's support groups to visit along the way!


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

Visiting with Roy and Lynn

I first came in contact with Roy Roden six months ago through my Facebook page. He had just had DBS surgery and told me how pleased he was with his results. Roy and his wife, Lynn, were in Miami, Florida which is pretty far from Yuma, Arizona. However, they would be coming through Yuma in a few months, so we made plans to meet.

Roy and Lynn had an ambitious plan, they were going to ride bicycles from Seattle, Washington back to Miami, Florida, a distance of over 4500 miles to raise awareness about Parkinson's. Now for those of you in other countries, that's like riding from London to New Delhi, or from Sydney to Perth and back again, or from Cape Town to Casa Blanca. In other words, it's a very long way to drive in a car, much less ride a bicycle. You can read all about their journey on their website: PD Challenge 2012. 

They started their trip in November, and spent a great deal of time riding in the rain (it was the rainiest November/December the Pacific Northwest ever had). I promised them sunshine when they came through Yuma and, fortunately, I was able to deliver. 

YumaBev singing

They arrived here on Thursday, Jan 3rd, and my Wonderful Husband and I met them for dinner at Daybreakers Cafe (which also has karaoke). We ate dinner and then went and sang karaoke. We had a good time, no one threw tomatoes at us and we stayed until closing time of 9 pm (Yes, 9 pm, Yuma is a town filled with seniors, so places open very early and close early, too). 

Friday and Saturday, we both had other things to do, so we didn't get together again until Sunday, Jan 6th. We invited all four of them (Roy and Lynn have her brother David and a friend Holly traveling with them) over to our house to go Jeeping. Most of my neighbors have Jeeps, and since the area around Yuma is desert, Jeeping is a favorite pastime around here. The four of them piled into Jeeps and my Wonderful Husband and some neighbors took them on a ride down the Wash and over some dunes to a nearby place where people fly radio controlled planes. When they came back, my Wonderful Husband took David (Lynn's brother) out for a ride in a Polaris RZR, a smaller all terrain vehicle designed just for playing in the sand and climbing over rocks.

Then we all met for dinner at Pizza Hut. We had a great time and even though we could have gone back to the cafe for karaoke again, we passed. We were all tired, so we called it a night. 

Monday started off early for all of us. Roy and Lynn were our guest speakers at our local Parkinson's Support Group meeting (which also happens to meet at Daybreakers Cafe). He talked about their bicycle ride, the wonderful people they'd met along the way and the importance of exercise. Then our support group gave them a donation, we exchanged t-shirts and posed for pictures and they got ready to continue their bike ride back to Miami.

Please go to their website, PD Challenge 2012 or their Facebook page and if they will be riding near you, please give them a call and meet them for lunch or dinner, or invite them to speak at your local PD support group. They are all wonderful people and it was a privilege to meet them in person.

Lynn and Roy Roden

Holly and David 

YumaBev, Roy and Lynn

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

I'd Like to Get to Know You

As the new year starts off, I am thinking about you, the people who read my stories. I know a few of you from the Parkinson's Chat Room, some from Twitter and Facebook, but mostly I just see the country or city/state of your IP address. 

Red dots indicate visitors to my blog

There is someone in London who always gets here from my Handwriting story (that must be what you bookmarked). I have another regular from the Australian Capital Territory. (Could it be Governor General Bryce or her sister, who has Parkinson's?) I have regulars from New York City (Mike Fox?), Washington DC (President Obama?), Beverly Hills CA (Ellen?) and Mountain View CA (Google's Anne Wojcicki or Sergey Brin?). Could any of these famous people read my stories? I doubt it. They are most likely just regular people like me. 

Then there are the people from Germany, Italy, Russia, China and Brazil. How do you decipher my stories. Do you read American or does Google translate really work? And if it does, does it still make sense? I am curious about you.

Everyone who reads my stories knows a lot about me, but for the most part, I don't know who you are. Are you younger than me (52) or older? Do you have Parkinson's, know someone who does or in the medical field? 

I want to know about you. I want to know your names, where you live, how Parkinson's has affected you. I want to feel like we are truly friends. And, if I am ever in your "neck of the woods," I'd like to meet you in person, give you a big ol' hug, and say Have a Happy Parkie Day!

Please share your stories with me. My email address is YumaBev@gmail.com.

Who knows, maybe I will share some of your stories with the rest of the world, unless you ask me not to.

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

How Long have You had Parkinson's disease?

I get asked this question, a LOT and I really don't know how to answer it correctly. I was OFFICIALLY diagnosed at age 47, on August 30, 2007. But is THAT the correct answer?? 

The Judge at my Social Security Disability hearing said my Parkinson's began a year earlier, on August 1, 2006.

I used to THINK my Parkinson's started in the summer of 1999, when I couldn't make my right index finger double click my computer mouse at work, but was it THEN?

Or did it start EARLIER? Like back in 1995 when my handwriting suddenly got smaller.

My Wonderful Husband says my right hand had a very slight tremor before we got married, and that was back in 1985. So, was it THEN?

Or does it date back to my childhood? I was acting out dreams (and scaring both my parents or the neighbors I would awaken by ringing their doorbell at 3 am) when I was about nine or ten.

Does it have to do with the big crack in my skull I got when I attempted to occupy the same intersection at the same time as a UPS truck at the ripe old age of six?

Does it date back to my birth? My Dad had Parkinson's. Is it a family thing?

The answer is: I DON'T KNOW.

NO ONE KNOWS. Not my Doctors, not the experts, no one.

But does it really MATTER?

Except for the purposes of determining the amount of my disability check, I'd say NO, it doesn't really matter.

BUT, how do I answer the question when I am asked?

I usually say THIRTEEN years, because it was in 1999 that I became AWARE that there was a problem. Prior to that day when I went into work and couldn't double click my computer mouse, I was OBLIVIOUS. 
I didn't even NOTICE that my handwriting had changed. I only realized it a few months ago while researching a story for my book, Parkinson's Humor.
I didn't KNOW I had a tremor when we got married until hubby mentioned it to my Doctor a few years ago.

So, maybe the best answer is...


TOO LONG!