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Wednesday, December 4, 2013

Walk Quietly and Carry a Big Stick

My Parkie friend Rick lives in northern Maine and makes walking sticks in his spare time. Last Spring, I traded him a copy of my Parkinson's Humor book for a walking stick. I didn't get to use it over the Summer. Since my DBS surgery, I sleep later and I have missed many sunrises. By the time I would get up, it was just too darn hot to walk.

However, now that the weather is cooler, I started walking again. Usually, I walk late in the afternoon, about 4:30 pm. My neighbor, Freida, walks with me. 

Sometimes I walk by myself, in the morning, and the one day I forgot to take the walking stick with me, I needed it. Not for walking, but to fight off a fierce dog that decided to chase me; barking and trying to bite me. So, I turned around and in my gruffest voice possible, I barked right back at it and then stomped my foot and finally, it decided to run off back home. Needless to say, I don't walk past that house anymore, but from now on, I always remember to carry my big stick.

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Wednesday, November 20, 2013

A Parkie Speaks to Future Doctors

My phone rings and it is Adam, the Medtronic DBS Therapy representative from Tucson, Arizona. I met Adam during my DBS surgery and he was with me when I had the final scalp surgery a few months ago. I joke with him about only recognizing him when he is wearing a surgical mask. He appreciates my warped sense of humor. He has called to ask if I'd be willing to come to Tucson speak to a class of first year medical students about living with Parkinson's disease? I say YES! He asks if he may give my phone number to Scott Sherman, MD, PhD, who is the Associate Professor of Neurology at the University of Arizona. Again I say YES. He laughs and says he knew I would say yes and that he'll be back in touch with me after I hear from Dr. Sherman.  

A few weeks later, Dr. Sherman calls me. We talk about my Parkinson's, my DBS and his medical school students. He asks if I will be nervous speaking to a class full of students and I assure him that when it comes to public speaking, I am a pro. I ask him if I could become a patient of his and have him take a look at my DBS settings. I am convinced the settings are causing my mood problems. He says yes and will set up an appointment for the same day I speak to his class. He says either he or Adam will be back in touch to make all the arrangements.

A few days later, I hear from Adam and Dr. Sherman. Adam has made hotel reservations for me and my Wonderful Husband and would like to take us to dinner the night before I speak. Dr. Sherman has made an appointment for me right after lunch on the same day I speak to his students. He warns me his class starts at 9 am and he would like me there at 8:30 am. I say no problem, I'm up early.

My Wonderful Husband and I drive over to Tucson, get checked in to our hotel and a while later, Adam and his beautiful wife Liz, pick us up and treat us to a fantastic dinner at El Corral. He drops us off back at our hotel around 10 pm, and says he'll pick us up at 7 am. Seven? Yes, he says, seven. Dr. Sherman wants to meet me before his first classes start, which is 8 am. So, we set the alarm and go to sleep.
Liz, YumaBev and Adam

Adam is already waiting outside at 6:45 am, doesn't he ever sleep? We meet with Dr. Sherman in the campus coffee shop and everyone except me has coffee (I don't like coffee.) I have a big cup of ice water and a cinnamon roll. We visit for awhile and then Dr. Sherman heads off to teach his 8 am class. It amazes me how down to earth Dr. Sherman is. He's like the guy next door (only a lot more educated). The three of us visit and drink our drinks until it's time to find our way to the classroom. I find the tech guy and make sure my PowerPoint and videos will play and the mic is set for my voice. 
Adam and YumaBev waiting for class to start

The class starts with Dr. Sherman speaking about the medical basics of Parkinson's disease and then it's my turn. Within five minutes, I have the whole class laughing, including Dr. Sherman and Adam. I do my PowerPoint and show the class my before DBS video and then offer to answer any questions. Dozens of hands go up and I answer questions until time runs out and the students have to leave for their next class. After class, I sold a few books, mostly to students who had relatives with Parkinson's. My Wonderful Husband was supposed to be taking pictures, but he got too engrossed in my speech (even though he's heard it before) and forgets. Adam, who was sitting next to Dr. Sherman, tells me afterwards, that Dr. Sherman kept making comments like, "She's right" and "She's funny" and "She really knows about Parkinson's." 

Dr. Sherman's medical students

Dr. Sherman thanked me and headed off to his next class. Adam drove us back to the hotel and headed off to work. We checked out, ate lunch and went to Sherman's medical office for my appointment. I gave him a signed copy of my Parkinson's Humor book and he bought a extra copy for his staff. Then we talked about me and my problems and he adjusted my DBS, giving me a new "A" setting to try for my mood problems. 

I told him that I'd really love to speak to his neurology residents. He said he'd think about it. He thanked me again for speaking and we left and drove back to Yuma. 

Dr Sherman and YumaBev
I tried the new "A" setting and my mood changed back to the Happy Parkie I used to be. The difference was amazing! Come to think of it, so is Dr. Sherman.

My favorite quote of the day? Dr. Sherman, "Well, you have either just convinced them all to become neurologists or scared them so they won't!" Hopefully I encouraged them to become more than neurologists, hopefully, I encouraged them to become Movement Disorder Specialists! 

Saturday, September 28, 2013

Parkinson's is a Little Disease

In my bio, I reference Parkinson's as a little disease and even though Parkinson's disease has a HUGE impact on the lives of those affected by it, it is, in many ways a "little" disease. Let me explain. 

Parkinson's disease is caused by the death of little neurons in the little kidney bean sized areas of our brains called the substantia nigra. Neurons are little, very little; it would take hundreds to form the period at the end of this sentence. 
See how little the area is?

With Parkinson's, you tend to get little. Your handwriting gets little, your steps get little, your movements get little and even your voice gets little.

You don't wake up one morning with full-blown Parkinson's disease; it sneaks up on you a little at a time. Michael J. Fox, probably the world's most famous Parkie, noticed that his little finger twitched a little, not a whole bunch, just a little.

Parkinson's makes it difficult to do little things, like button buttons, thread a needle or shave your underarms. 

If you ask the experts, and they give you an honest answer, they will say little is known about Parkinson's. I asked my primary care physician how much he learned about Parkinson's in medical school, and his answer was, "Very little."

Every EMT and paramedic knows the signs of Heart Attack and Stroke, but most know little or nothing about Parkinson's. Heck, even hospitals know so little about Parkinson's that the National Parkinson Foundation created a little Aware in Care kit to educate them.

Holding my Aware in Care kit

When I went for the consultation for DBS surgery, the Doctor said, "We will drill two little holes in your head and insert little leads, which will be connected to a little generator."

When I started writing these little stories, I had no idea they would be read by so many people on this little old planet in the middle of a huge universe. So, I promise not to let this little disease take away my big sense of humor.

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Friday, August 30, 2013

Time will Tell

Today, August 30, 2013 is the six year anniversary of my Parkinson's disease diagnosis. Many things have happened during that time; some good, some bad, and some I can't remember.

Time seems like it's flying by, and my concept of time has diminished. When my Doctors ask me questions like, "When did these symptom start?" or "How long ago was this test done?" I have no idea whether it was last month, or six months ago. I have to go home and look it up. I have a medical file on my PC, so the tests are easy to find. I have kept a daily journal, something I have done for years, so I can go back and see just when that particular symptom started. Without these, I'd be lost. 

It's not just medical things that I can't remember. I can't remember when I last saw friends or when I went to see a show and this concerns me. I'm sure my Parkinson's has progressed, even though my motor symptoms haven't; due to the Deep Brain Stimulation surgery I had done in October 2012. 

I have been through a lot this year; breast cancer surgery, three other surgeries, and way too much stress. Has this caused my "time" problems or is it something else?

I don't know, but maybe, come next August 30th, I won't remember any of 2013 and that might be a good thing. Time will tell...

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Sunday, August 25, 2013

DBS: Oops, We Have a Scalp Problem

My final visit with Dr. Norton, the neurosurgeon who did my DBS surgery in October of 2012, should have been in January of 2013, but life got in the way. My Wonderful Husband had some health issues and couldn't drive, then there was a freak blizzard in Tucson which required cancellation of an appointment and then I caught a bad cold and had to cancel another appointment. I finally got to see him in late March 2013. Dr. Norton checked my DBS settings, took a quick look at my incisions and declared me "done with him." He said I should have any follow up programming changes done with Stephanie or with Adam, the Medtronic representative when he comes to Yuma. I gave him a hug and we headed back home.

April of 2013 came and all hell broke loose. I had an abnormal mammogram, which required an ultrasound and then a biopsy. No big deal; this had happened before, so I wasn't concerned. I guess I should have been, because on April 15, 2013 I was told I had cancer in my right breast, and the tumor was just below the DBS generator in my chest. The surgeon I met with in Yuma had never seen a DBS generator before and that made me nervous, but surgery to remove the tumor was tentatively scheduled for May.

Then on April 20, 2013, I felt something "gooey" on my scalp, near the right cap from the DBS surgery. It wasn't blood, just oily. My Wonderful Husband looked and couldn't see anything, until he got out a magnifying glass. There was a very tiny, pin head size spot, where he thought he could see wire or a screw. Phone calls were made, photos taken and enlarged and then emailed to Tucson. 
The spot was really very small, this has been magnified.

Dr. Norton called me very early on Monday morning, April 22, 2013 and said we'd better come right over. So we packed some clothes and took off. He took a look at it and decided it was a wire showing, but that it hadn't come through the skin, yet. It needed to be fixed so surgery was scheduled the next day. 

While I was there, I told him about the cancer and my nervousness about the Yuma surgeon who'd never seen a DBS unit before. His answer, "I'll take care of it and get you the best breast surgeon in Tucson." Dr. Norton called me later in the day to say he'd made an appointment for me on Wednesday with a Dr. Roeder. 

Tuesday, April 23, 2013 I was back in the Operating Room with Dr. Norton. He re-shaved the right side, cut me open, re-arranged the wires and sutured me closed.

On Wednesday we met with the breast surgeon, scheduled the cancer surgery for May 7, 2013 and headed back home to Yuma.

We went back to Tucson on May 3, 2013 to have the scalp sutures removed. Since my cancer surgery was scheduled for a few days later, we just stayed in Tucson. On Monday morning, my Wonderful Husband looked at my scalp and there was a spot that didn't "look right," so back to Dr. Norton's I went.

My scalp had pulled apart between where two of the sutures had been, so I was scheduled to have it fixed, again, on May 9, 2013; two days after my cancer surgery.

Dr. Norton once again, re-shaved the right side, moved the wires some more, and put in even more sutures. This time, he let the sutures in longer and I went back on May 20, 2013 to have them removed. 

I also had a follow up with Dr. Roeder the same day, she said they'd gotten all the cancer, so I decided against any follow up treatment. The oncologists I saw were recommending radiation, but that would have required moving my DBS generator, but after all the scalp problems I had, I said NO.

All went well for about ten days, then my Wonderful Husband spotted some tiny whitish things sticking out of the incision on my scalp. More photos were taken, enlarged and emailed to Tucson. Dr. Norton decided to call in an expert, Dr. Ley, a plastic surgeon to fix my scalp this time.

The white things are Vycril sutures working their way out

On Friday, May 31, 2013 we went back to Tucson and stopped to see Dr. Norton and then went to see Dr. Ley. It seems the tiny white things sticking out of the incision were Vycril sutures, ones that are put under the skin and should have dissolved. Only in my case, they didn't. Instead, they tried to work their way out through the now closed incision.

Dr. Ley said he should be able to fix it and surgery was scheduled for the following Friday, June 7, 2013. Since he had never operated on a person with wires under their scalp, one of the Medtronic representatives, Adam, came to the hospital to show him where the wires were located. My surgery was done on Friday night. Dr. Ley did what he called z-plasty and used a different type of under-suture, just in case my body was rejecting the Vicryl sutures from before. So, once again the right side of my hair was shaved, a little bigger area than the previous times. This time it was much more painful, plus not only did he suture the incision closed, he also used a surgical glue called dermabond.

Z-plasty with sutures and dermabond glue on my head
It was close to 11 pm before I got out of the hospital, so we stayed in a hotel right next door and met Dr. Ley on Saturday morning at his office nearby. He gave me the all clear to head back to Yuma, told my Wonderful Husband what to look for and scheduled a follow up appointment for June 24, 2013.

Dr. Ley and YumaBev at his office Saturday morning

Everyday my Wonderful Husband would look at my incision and it all looked good. As my hair grew back, it lifted the glue off my scalp and itched like crazy, but I didn't touch it. Finally, June 24, 2013 came and we went back to Tucson. Dr. Ley very carefully cut away the glue and removed the sutures. It took more than an hour. After he was done, he said he thought it would be just fine, and it was! There was an occasional piece of blue suture that would pop up, but within a day, it would fall out on it's own. 

The reason this happened was no one's fault, I just didn't have any extra skin on my scalp. Dr. Norton has done well over 700 of these surgeries and I am the only patient he has had this problem with. However, he now uses a different method of opening and closing the scalp, just in case. There was NEVER any infection.

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Monday, August 12, 2013

The Good, the Bad, the Ugly and My Sequin Dress!

I never had any problems writing humor stories about my life with Parkinson's disease. I'm not sure why, but I think it's because I felt terrible prior to getting diagnosed and within a day or two of taking carbi/levodopa I felt a whole lot better, so sharing my happiness was easy.

Breast Cancer is different. I am having a hard time finding anything funny about it. Prior to my diagnosis, I felt fine. I didn't have any pain. Sure, I had the lump in my breast, but I assumed, like most of the Doctors who examined me, that it was scar tissue from a previous benign biopsy. It wasn't, of course, so like Paul Harvey would have said, "Here's the rest of the story."

May 7th, 2013 started way too early; we went to the hospital, where I got into the lovely surgical gown and way too big surgical socks. A nurse did the usual list of medications, allergies, weight, blood pressure, have you eaten, blah, blah, blah and then the fun began...

First, I went to radiology, where they injected radioactive stuff into my right breast. From there we went a few blocks away to another building where they put a locator wire and some blue dye in the same breast. A mammogram was done to make sure the wire was in the right spot and then it was back to the main hospital.

Next we were off to the obstetrics department where they normally deliver babies, I'm not quite sure why I went there instead of the main operating room, but I didn't ask. A nurse started an IV in my arm and within minutes, I complained that it felt strange, so she took it out. The anesthesiologist came in, said she'd do the IV in the surgery and off we rolled. 

The next thing I remember is waking up and feeling like I was in an oven. They had hot blankets piled on top of me, trying to stop what they thought was me shivering uncontrollably. I wasn't shivering at all. I was having internal tremors from being off my Parkinson's medicines and having my DBS unit turned off all day. They quickly removed the blankets, but I was over-heated and ended up getting sick to my stomach. Guess I have to add one more thing to my "hospital" list, or better yet, I think I'll just stay away from hospitals altogether. 

While I was still in recovery, I went to reach for something with my right hand and my arm wouldn't move at all. This was very bad. You should have seen the faces of the Doctors and Nurses, they went completely white. They didn't know what to do. The surgical staff couldn't get in touch with any of the local neurologists or neurosurgeons because they were all in Phoenix watching a new DBS procedure. I had them go get my cell phone from my Wonderful Husband and call Dr. Maria De Léon, a Movement Disorder Specialist who also has Parkinson's. Thankfully, I had her personal phone number and she told the Surgeon what had happened to my arm.  

Fortunately, the feeling slowly returned and now, three months later, my right hand and arm are back to pre-surgery normal. What caused this, who knows? But it's another reason for me to stay away from hospitals.

We left the hospital that evening and came home a few days later. The Doctor called on Friday and said something like, "The margins were clean and so were the lymph nodes, so we think we got it all." This was very good news. 

The ugly bruise on my arm from the "strange feeling" IV is still visible months later, but the blacks and blues from the breast surgery disappeared within a month. How strange is that? By the way, I was showing off my newest sequin gown at a party for the APDA in Arizona just 10 days after surgery!

Ugly bruise is still visible months later

YumaBev in her newest sequin gown.

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Friday, August 2, 2013

Saying Goodbye

My beloved Dr. Zonis is retiring and closing his practice. I am very happy for him and his beautiful wife Perla. They will have lots of free time; to travel and spend time with their family. He has been my "superhero" for almost six years and has been helping other patients for over 38 years, so he really deserves his retirement, but at the same time I am sad.

I will really miss both of them. He has been more than a Neurologist to me; I think of him more as a friend (even though I only saw him as a patient.) I gave him a big hug at my last appointment, as always, but I didn't know that might be the last time I would see him. And that makes me sad, too.

Bev and her beloved Dr Z

As a patient with Parkinson's disease, my choices for a new Neurologist aren't too difficult because there are Movement Disorder Specialists in Phoenix, Tucson or San Diego (3+ hour drive each way.) At least for now, I can drive to see one of them, however many others here in Yuma can't make that kind of a drive, so I have been calling other Doctors in Yuma (familiar with Parkinson's), trying to put together a list for those support group members.

I'm not sure how to say Goodbye to a couple like Dr Zonis, his wife Perla and his wonderful staff. I guess I really don't want to.

PS Dr. Zonis got bored being retired and re-opened his practice in January 2014.

Sunday, July 7, 2013

23andMe; Why I Spit for PD

23andMe is a personal genetics company based out of California, and as a research partner with the Michael J Fox Foundation, they are trying to find genetic markers for Parkinson's disease and those already diagnosed with Parkinson's can get their tests done for free. 

I ordered my free testing kit more than a year ago. It was easy; spit in a tube, send it back, fill out some surveys online. My results were surprising though. There is absolutely no doubt that I have Parkinson's disease and yet my results came back saying I was "Below average" risk for Parkinson's. My results also said I have a "Below average" risk for breast cancer as well. Looks like even my genetic profile has a warped sense of humor!
YumaBev's DNA results for Parkinson's 

How can this be? Well, it just means that my Parkinson's isn't due to one of the known genetic mutations, such as LRRK2 that has been making the news lately. So, how did I end up with Parkinson's?

My Mom
Soup. Yes, soup. When my Mom's egg and my Dad's sperm got together, a pot of genetic soup was created from combinations of each of their respective DNA. My DNA soup dictated that I would get my Mom's hourglass figure, button nose and her phenomenal sense of humor. Unfortunately, it also dictated that I would have my Dad's thin straight oily hair, his big crooked teeth and quite possibly HIS Parkinson's as well. Things could have been worse; I could have had his nose.
My Dad

As for my breast cancer, I'm pretty sure my genetic soup had nothing to do with it. I think my breast cancer was caused by a hormone replacement therapy drug prescribed to me by a local gynecologist back in 2010. 

I am not complaining about my soup. Sure, I wish I didn't have Parkinson's, I wish I had thick curly hair, too. But I do have Parkinson's and my hair is getting thinner every year. As for the breast cancer, I am upset, I was NEVER told this medication could cause breast cancer!

So, if you have Parkinson's, won't you consider spitting for 23andMe? Maybe, just maybe, our collective giant pot of Parkie soup might one day, lead to a test for Parkinson's or even a cure. 

IF you haven't been diagnosed with Parkinson's and are still interested in getting your DNA soup analyzed, you still can by following this link 23andme for non Parkies! There may be an extra shipping fee if you are not in the USA.

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Thursday, May 2, 2013

A New Challenge for Bev

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. I can't remember ever having a "normal" mammogram. Just prior to my DBS surgery, I found a lump in my right breast 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. As soon as I had my final DBS follow-up (March 2013), I went to my primary Doctor, told him about the lump and had another mammogram and, of course, it was abnormal, again. This time they ordered extra testing and I found out it was cancer on April 15th. 

Do I regret not doing anything about it sooner? 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 surgeon he knows, Dr. 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.

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Wednesday, March 13, 2013

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, 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. Laughter will stimulate your brain to produce more dopamine, so it really is the best medicine! 

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.

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Tuesday, March 12, 2013

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 Wondering. 

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. 

You can find all my videos on my YouTube channel:
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Tuesday, February 19, 2013

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
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Thursday, February 7, 2013

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. The sketch below is how Parkinson's is depicted in Medical an old man.

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.

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Friday, February 1, 2013

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.

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Friday, January 18, 2013

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!

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