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Sunday, November 29, 2015

YumaBev Plays Doctor/Patient

Scott Sherman, MD, PhD invited me speak to the University of Arizona Medical School students again. This would be my third visit. Maybe I should've asked for course credits or at least a U of A shirt? Just kidding.                        

Dr. Sherman wanted to try something different this time. The students would have to use their Clinical Reasoning skills to come up with possible diagnoses, what tests to order to confirm/rule out their theory and how to justify the tests ordered. These were first year students who were ALREADY having to think "Will those pesky insurance companies pay for this test?"          

I would start at the beginning of my Parkinson's symptoms, and gradually add more, until someone guessed correctly. I would try to "present" just like it happened in real time. After each symptom, the students would ask questions and try to come up with diagnoses. By the way, this would not have been possible prior to my DBS Surgery as my symptoms would have been too obvious.

In order to not give the students any clues, the class was being headed by Alice Min, MD, PhD, who teaches Emergency Medicine. Also in attendance were Paul St. John, PhD (Cellular & Molecular Medicine and the Clinical Reasoning course director) and Todd Vanderah, PhD (Anesthesiology, Pharmacology, Neurosciences) and of course Dr. Sherman. My favorite Medtronic rep, Adam, was also there, wearing a Medtronic emblazoned polo shirt, but the students would have probably assumed Cardiology, if they even noticed his shirt. 

Dr. Sherman (Neurology and Physiology) introduced me simply as Bev from Yuma who has come to tell you her story. The classroom was full and the faculty had to stand as there were no seats. My Wonderful Husband was in the corner, behind the podium, so he was only able to get this one photo for you. 

I started off by saying, "You have to imagine me as a 37 year old." 
Dr. Sherman quipped, "Oh, 2 years ago?" (Who said Doctors don't have a sense of humor?)
I replied, "Good one Doc, but you could have said 10 years in the future." 
This caused the entire room to burst out laughing.

I told them about my job as a bank teller working part time in the drive thru, reaching up to grab tubes and how intermittent pain began in the area between my right scapula and my spine. The students asked me to describe the pain (hot, burning) and what tests were done. I said x-rays and a referral to chiropractor and ortho. They came up with Repetitive Stress or Nerve Impingement as possible diagnoses. I told them the x-rays were normal. Ortho prescribed physical therapy, which I did with no improvement. Chiro did full spinal x-rays, several adjustments and used a TENS unit which provided no lasting relief. 

Three years go by, I had changed to an office type job, and one day I could no longer double click my computer mouse with my right index finger (or any of my right hand fingers.) They asked about numbness or tingling (none), asked if I had right side weakness (no). At this point, they were still thinking nerve or back problem. 

I told them that a few months later, I began to have difficulty writing. My hand felt almost like writer's cramp. I asked the students if they still wrote notes by hand, which elicited another round of laughter. 

They asked about tremors (there weren't any then, so I said no). A student suggested it could be Dystonia, which surprised both me and Sherman. When questioned as to why she thought so, the student didn't have an answer. 

I told them that several months later my right hand began to shake, but only when I tried to use it. They asked me to demonstrate, so I did. A student asked if I had a loss of sense of smell (no) or if my writing had gotten smaller. I hadn't noticed it had, so I said no. Possible diagnosis of Essential Tremor was brought up.  

Several months later I was referred to another Ortho, where x-rays and T-spine MRI were ordered (with the area on my back highlighted with markers.) Both were negative and I was referred to a Back Specialist who said "I have a waiting room full of people that I know exactly what is wrong. I don't have the time to figure out what your problem is." He referred me to Pain Management, who gave me some type of shot in that spot on my back. The shot did nothing. They asked about Depression or Mood changes (no). One asked if any Dr. had done any finger to thumb or flipping hands palm up/palm down tests (no).

A year or so goes by and I wake up one morning and can't move my neck without intense pain. My primary Dr. prescribes muscle relaxers and orders a Brain and C-spine MRI (since now he had a good enough reason to satisfy the insurance.) Both come back negative. I am referred to a Neurologist who diagnoses me with Essential Tremor, and prescribes propranolol. By this time, my Father had been diagnosed with Parkinson's, so I ask if I could have it also. I am told, absolutely not. 

The tremors are under control, but my symptoms slowly worsen. I end up with a frozen right shoulder, so it's back to a third Ortho, who gives me a cortisone shot and exercises to do at home. My right arm is always curled up; my right hand is in a fist. 


My right foot thuds down when I walk; my right arm doesn't swing when I walk. I feel tense all the time and startle easily. My movements on my right side become stiffer and slower and worsen daily. Within a few years, I can barely move at all. I need help in dressing, getting up from sitting, cutting my food. 

At this point, several shout out Parkinson's! And we tell them they are correct. One student asked if I ever had a DaTscan. I said no (it wasn't approved yet.) 

I explain how I finally got diagnosed (see The Letter) by Dr. Zonis, who did his Neurology residency at the University of Arizona! What treatments were tried, the side effects of the various medications and that three years ago, I had DBS surgery. 

A student asked how back pain and a frozen shoulder were related to Parkinson's? Dr. Sherman didn't really have an answer, other than to say it was a common presentation in Young Onset PD and what most often caused them to seek medical attention. I told the class that I thought it was a combination of the rigidity and constant muscle tension (dystonia) putting abnormal strain on one side of the body. 

I said, "No matter what type of medical professional you become, you will run into people with Parkinson's, so if the symptoms don't have a clinical reason for them, think NEURO. Don't be afraid to think outside the box." 

Dr. Sherman thanked me for taking time to come and speak and I got an enthusiastic round of applause from the class. 

Several students came up to me, after class, to say they had relatives with Parkinson's or to ask more questions. I gave copies of my book to Dr. Min and St. John, who both seemed surprised that I had written a book. I asked Dr. Sherman if I could possibly speak to his Neurology Residents one day. He said he'd work on it!  

Right after class, I had my check-up with Dr. Sherman and my Wonderful Husband and I headed back to sunny Yuma.  

I had a wonderful time playing "patient" with these future Doctors and I hope I left a lasting impression on each one of them.

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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:

Three years later video:


To watch all my videos, visit my YouTube channel:

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

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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:


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:


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:

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Tuesday, September 8, 2015

YumaBev and Her Shoe Shopping Adventure

A few months ago, I diagnosed myself with plantar fasciitis. My feet were improving somewhat, but I went to see my Doctor just to be sure. She confirmed my diagnosis and added prescription strength naproxen to my daily drug regimen. Then she looked at the brand new shoes I was wearing and said, "You NEED to wear better quality shoes, or your feet will never heal."

Sounds simple, right? Wrong.

I have worn the same type sneakers for DECADES: Velcro, wide-width, plain white, boring and cheap. My feet are short, but they are also wide, so my current shoe size is 6.5 W.

Kmart sneakers

The name changed, but the shoe didn't
I used to buy Kmart brand. It was simple; walk in, grab my size, try them on just to be sure they felt okay, pay for them and I was done. Over the years the size grew a little larger and the "brand name" changed, but they were the exact same shoes. During our traveling years, I would buy them whenever we were near a Kmart. If they were on sale, I'd buy two. A few years ago, the closest Kmart to Yuma, which was 80 miles away, closed, and I was stuck. I could no longer easily get my beloved sneakers.

So, I started buying the Walmart brand, interestingly named "Betty" which was my Mother's name. They fit okay, not the same, but okay. They didn't last as long, but were half the price of the Kmart brand, so it was a good deal. Or so I thought. I was wearing these brand new shoes when my Doctor scolded me.  
Betty sneakers

I left the Doctors office in a quandary. I haven't shopped for shoes for decades. I didn't know how or where to begin. 

First I went to a store with the word Famous in their name. It was a Monday morning and the store was almost empty. There were shoes everywhere and to be honest, it was a bit overwhelming. I started at the far end and looked for shoes in my size range. The few boxes I found with size 6.5 on them were way up high, beyond my reach. I asked the only employee, who was busy gossiping with the mall security guard, if she could help me. She looked down at my shoes and said, "I hope you don't need Velcro, because we don't carry those." I assured her that I could tie laces, but needed wider width shoes. She went and got two boxes down from the shelves and went back to gossiping. I tried them on and both were way too tight. Since all the smaller sizes were way up high and I got no additional help, I left.

From the Famous store, I walked next door to Kohl's, but ran into a similar problem finding my size. I did try on one pair of Skechers at Kohl's, but they were too big. They didn't have any smaller sizes so, I gave up and went home.

The next day, I went shopping again. This time, I headed to the Skechers Outlet store. As I walked in the door, I felt overwhelmed once again. Too many choices can cause anxiety for some people with Parkinson's and apparently I am one of them. 

The Manager of the store came right over and asked if I needed help. I told her what I was looking for and my size. She said, let's go sit down and measure your feet to make sure. She then went and brought two pairs of shoes to try on. After I tried them on, I told her what was "wrong" with each pair. She then went and brought two more. Within 20 minutes, I had shoes that fit my feet perfectly! 

I really liked the brightly colored ones, but the only ones that fit my feet were rather plain. I had my choice of gray or white. Since gray is the color of the Parkinson's Awareness ribbon, I bought the gray pair. 

My Parkinson gray Skechers

The Manager said I could get a second pair half off within 45 days. After wearing the gray pair for a few weeks, I decided they fit better when I wore thin socks, so I went back and bought the second pair, a size larger, to wear with my thicker socks. The price was reduced, so by waiting a few weeks, I actually saved money! 

The shoes were not cheap. The gray pair cost about six times more than the Walmart Betty's, which would start to come apart after 2 months. I've been wearing the Skechers all day, everyday and 6 weeks later, they still are like brand new. 

2nd Pair of White Skechers

Now all I need is some colorful laces to brighten them up. Maybe pink for Breast Cancer Awareness? 

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Tuesday, July 7, 2015

Leaves: Leave Me Alone

There are many reasons we chose Yuma, Arizona, to be our home: warm Winters, 360+ days of sunshine, low humidity, no mosquitoes, and a supposedly maintenance free yard. Some people attempt to grow grass, others plant oleanders, bougainvilleas, and other non-native shrubs. They plant both native and non-native trees. Some make their yards look like a tropical jungle, filled with flowering plants, trees and shrubs. We, however, have taken maintenance free to an extreme. We have plants that require almost no pruning or trimming. Our total landscaping package consists of three golden barrel cactus and three agave plants. That's it! No bushes, shrubs or trees. We decorate with unique rocks and ceramic pots instead.

My front yard

So, how is it that EVERY day, I am outside filling up bags with leaves? It is Summer, not Fall, there shouldn't be ANY leaves in my yard, and yet, every morning and evening it's the same: leaves, leaves and more leaves.

This is just a weeks worth of leaves

The answer is simple: Wind and Winter Visitors. 

Most of my neighbors are only here from October until April and while they are here, they meticulously take care of their yards. They trim their bushes and vacuum up the leaves. During those months, the wind blows from the North; away from my home.

But after they leave for the Summer, the wind changes and blows in from the South. All the leaves from their shrubs, bushes, plants and trees, which grow like crazy while they are gone, end up being carried by the wind to the Northeast corner of our subdivision and right into my front yard.

Where all the leaves come from

So, every morning and evening, I go out and pick up leaves. I am lucky that they tend to collect in the gas and water line access cut-outs in the concrete and in the corner by the wall. 

I always wear thick gloves when picking up these leaves. Why? Well, first of all, some of the leaves have thorns, but the main reason is... 

you never know what might be hiding in the leaves! 

I should be furious, but I am not. I've been picking up leaves at least twice a day for a couple of months now and have noticed that my ability to bend over, to get back up from squatting, and my balance has improved. 

Does that mean I enjoy picking up everyone else's yard trash? NO! 

It just means I've found a silver lining in an otherwise unpleasant task if you live in Yuma, Arizona, year round. 

Tuesday, June 2, 2015

You've Gotta Learn to Walk This Way

Exercise is a necessity if you have Parkinson's disease and walking is a great way to keep moving. One of the realities of living with Parkinson's disease is that your gait will change. These changes happen so slowly, you may not even notice that your arm no longer swings or that you walk like you have a ten pound weight attached to one ankle. 

Medications can reduce the rigidity, but if you've been walking this way for a long time, it can be difficult for your brain to learn a more normal gait. 

Prior to diagnosis, I had a very distinctive gait. I lurched. Neighbors could tell it was me from four blocks away.  

My right leg was very rigid, my right hand was always clenched into a fist, my right arm didn't swing and my right foot seemed to thud down as I walked. People, including medical folks, thought for sure I had a stroke. 

After diagnosis and medications, my gait slowly changed, and I lurched only when my meds wore off. One of these times, made for a humorous story involving a dance contest

As the disease progressed and I began to take more and more medications, my gait changed again. My movements became slower and my left foot would cramp. Gait changes can cause pain in your knees, hips, feet, back, neck and even shoulders due to postural misalignment and in my case, I had left hip pain that woke me every morning along with occasional charlie horses. Not fun.

Fortunately, the last foot cramp I had was the morning of my DBS surgery and as the settings got optimized and I reduced the amount of medications I was taking, my gait slowly changed again. The charlie horses disappeared but I now added left knee pain in the mornings. I would get out of bed and within ten minutes, I'd be out walking. It seemed the only way to relieve the hip and knee pain.

Sometime in the last year or so, I realized that my left knee and hip had stopped hurting and therefore, I was sleeping longer. Yippee! Hooray! 

However, I began to notice something new a few months back. When I would first get out of bed, the bottom of both feet would hurt for the first three or four steps I'd take. Since walking seemed to relieve the pain, I began walking even longer distances. But each morning, the pain was worse and then, throughout the day, if I sat for more than 15 minutes, the first few steps I took were very painful.

I considered going to a foot doctor, but decided to ask others with Parkinson's first. They came up with a possible answer: Plantar Fasciitis. It seems my gait had changed again and my feet were slapping the ground as I walked instead of rolling normally from heel to toe. The more I walked, the more I aggravated my feet. 

I had my DBS settings adjusted, bought brand new walking shoes, reduced the amount of time I walked and paid close attention to exactly how I took each step. If I get distracted, I begin slapping my feet again, especially my right foot. It's been a few months now, and my feet are slowly getting better, but I am still walking.

Here I am, at age 55, trying to learn how to Walk This Way.

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

Tuesday, May 12, 2015

The Parkinson's Humor Blog gets an Award

When I started this blog almost four years ago, it was a place for me to put down the wacky thoughts and humorous musings of my sleep deprived, Parkinson's prescription drugged mind. So I was rather surprised when I got an email informing me that my blog was named as one of the Best of 2015.
It all began because I was wide awake and alone with my thoughts at 4 am. There isn't much you can do in the middle of the night, without waking everyone else up. You can't vacuum or wash clothes and there's nothing on TV, so I would go online to find another Parkie to chat with. I would share funny stories with these strangers on the other end of the World Wide Web. I was amazed at how many people from other countries could type in English and somewhat embarrassed that I can barely type English. I learned to say G'day Mate and what "made redundant" & "knackered" meant.

Sometimes they would say, "You should start writing these stories down" so I started this blog. And soon, some of these strangers became friends; comrades in this reluctant war we were all fighting called Parkinson's. Over the years, I've been lucky enough to meet some of them in person. 

Soon people began asking if I could put my stories into book form, so they could share them with relatives or friends. That is how the Parkinson's Humor book got published.

My blog was being viewed by people all over the world and my stories slowly began to change. I began to write about ways to cope with the various symptoms and ways to help get the most out of your Doctor visits. I had the ability to decipher the medical mumbo jumbo and translate it into a language we can all understand.

Then I began my DBS surgery journey and my stories changed again. My life changed as well. I was no longer wide awake at 4 am. I was back to sleeping alongside my Wonderful Husband, until he woke up. I had less time to spend in the chat room and less time to write. I was busy enjoying the new, more active life the DBS surgery gave me.

The chat room where I had spent so many sleepless nights decided to shut down. But Facebook was becoming a global phenomenon, and soon I belonged to dozens of Parkinson's related Facebook groups.  

With the Facebook groups, people could ask a Parkinson's related question and have two dozen answers from around the world in a few hours. I started my own Parkinson's Humor Facebook page and shared links to my blog stories on there.

I don't write as many stories as I used to, but I personally answer emails from people and contribute to the Facebook groups. I run our local Parkinson's support group. I also speak to groups and medical school students about Parkinson's. In other words, I keep busy.  

I was honored and surprised to have this blog voted as one of the top Parkinson's blogs of 2015.

Thank you very much.

Yuma Bev

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Saturday, February 21, 2015

Friendship and Fun with Davis Phinney

I've attended several Parkinson's disease conferences and they all have similar formats. Most of the speakers are Doctors, Neuro-surgeons, and Researchers. They have technical slide presentations and use fancy terminology they learned in medical school. They speak way too fast for our dopamine deprived brains to absorb what they have said. Some attempt to add humor, but mostly they forget they are speaking to Patients, many of whom can't recall the name or dosage of their Parkie meds much less understand these type of slides:

The Davis Phinney Victory Summits are different. I've been lucky enough to attend two of them; in Phoenix, Arizona, during a rainy day, in January of 2013 and a few weeks ago, on Feb 7, 2015 in Las Vegas, Nevada. The theme of these seminars is Living Well with Parkinson's and most of the speakers give practical advice on how to do just that. Some still have complicated slides and some still speak too fast, but I've not seen anyone fall asleep.

They have planned Movement Breaks in between each speaker and attendees are encouraged to get up and move. The afternoon sessions are divided into smaller groups (Nutrition, Speech Therapy, Fall Prevention, DBS, etc.), so you have a choice of what you want to learn about and can get a more personal discussion going. 

My Las Vegas friend, Kip and I were invited to be part of the DBS session as a panel members and we were more than happy to answer questions regarding our DBS experience. After all, who knows more about DBS from the perspective of the Parkie than a Parkie with DBS? 
YumaBev and Kip discussing DBS 

Because I was a panelist, I was invited to a reception the evening prior and that's when I finally got to meet Jill. She and I met several years ago, in a Parkinson's Chat room in the wee hours, when we were awake and everyone else was asleep. Jill lives in British Columbia, Canada, and we have kept in touch via Facebook ever since. Jill was attending as an Ambassador for the 4th World Parkinson Congress.
YumaBev and Jill 

One of the best parts of the Victory Summit was getting to meet other Parkies. I got to re-connect with some I've met before and I got to meet, in person, some I've only interacted with online, either through this blog, Facebook, Twitter, email or the old Parkinson's Chat Room.

David & YumaBev
YumaBev & Heather 

Carl & YumaBev
Cidney & YumaBev
YumaBev & Michelle
YumaBev & Jill 

If there is a Victory Summit near you, please go. I can almost guarantee that you will leave inspired to Live Well with Parkinson's. And be sure to tell Davis Phinney I said hello.
Davis Phinney

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