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Friday, April 15, 2016

Celebrating A Life Before Parkinson's

As the leader of our local Parkinson's Support Group, I try to attend the Memorial Services of our members who have died. So far, I've attended three and all were people with Parkinson's, not their spouse or care-partner. There have been more than three, but they either died elsewhere or didn't have a service locally. 

At our monthly meetings, I'm so busy, I don't get a chance to socialize as much as I'd like to. As a result, it's not surprising how little I know about their lives before Parkinson's, so I enjoy the Celebration of Life slide shows that are now standard in Memorial Services. It's interesting to see old photos of them working, playing with their children and grandchildren and enjoying life. They had interesting careers and accomplishments. Their friends tell humorous stories about them. And all I knew was a very small part of their life, the Parkie part. 

I was surprised to see Jon, a member of our group officiating at a service recently. I had no idea he was a retired minister and he had no idea that I knew the deceased. Jon had only recently joined our group and the deceased had stopped coming over a year ago because his disease had progressed. Jon knew the deceased son, but didn't know his Father had Parkinson's, until he was asked to do the service for them. 

The spouse probably won't remember that I was there. And that is okay; that is not why I go. I go out of respect. Respect of a life well lived. Respect that they fought Parkinson's as long as they could. I feel sad for the spouse/care-partner though. They've been taking care of their loved one 24 hours a day, 7 days a week and now it just ends. I don't feel sad for the Parkie though, because their battle is over and now they are finally at peace. 

Some spouses will come to an occasional meeting after their loss, just to say hello, but most I never see again. It's just too painful for them and I understand. 

You know, I've spent most of my adult life around retired people. Most do NOT talk about the work they did. Instead they talk about their life now and the things they enjoy now. Things such as fishing, golfing, Jeeping, quilting, crafts, card games, concerts, karaoke or travel. They hardly ever mention their children or grandchildren because they usually live elsewhere and their friends have never seen them.

Life is a series of adventures and Parkinson's was just a small part of most of these people's lives. I wonder how much it will be a part of my slide show? One thing for sure, they'll be lots of laughter at mine! 

Wednesday, March 9, 2016

A Terrible Birthday Present, Especially for a Parkie

When I woke up on the morning of my 56th birthday, something wasn't right. My throat was kind of scratchy. I hoped it was just allergies. After all, almost every desert plant was blooming like crazy and everybody was sneezing and sniffling. But as the day went on, it became more apparent that I had received a surprise birthday present that I neither wanted nor could be returned. 

Now I understood why I was achy for the previous few days. Now I knew why my usual 20 minute nap the day before turned into two hours and didn't make me any less sleepy at my normal bedtime. Now I knew why I hadn't been all that hungry at meal times.

Someone, somewhere had given me a Darn Cold for a present. I don't know who or where. Parkinson's and Darn Colds don't like each other and I don't like either one of them! There isn't anything humorous about getting a Darn Cold, especially on my birthday! 

Fortunately, we didn't have much planned for my birthday. Just lunch out with friends. By the time we got back home, my Darn Cold was in full swing so I decided to make it a party.

My nose was running, I was sneezing and I felt awful. I didn't have a fever, thank goodness, so at least it wasn't the flu. I'm glad I got my flu shot though.  

By pure coincidence, my neighbor Jeri had dropped off a birthday present while we were out. She made a quilted tissue holder from fabric scraps. This would definitely come in handy! 



So, I dug out my Darn Cold party supplies and settled in for the duration. These parties tend to last for at least a week, sometimes longer. First, I put on my snug-fitting old tee shirt that I use with the Vicks® VapoRub™ and climbed into my snazzy pajamas. You might as well look good if you're stuck going to a party that you'd rather not attend.



Then I emptied the M&M's from my new sippy cup (another birthday gift) and filled it with juice and added an immune system enhancer tablet. 





Then I got the rest of my Darn Cold party stuff out: Pseudoephedrine for the runny nose, Guaifenesin cough syrup for the chest congestion you know is arriving soon, Honey lemon flavored cough drops and of course, the Vicks®. I keep all these items together, just in case I need them. 
  



My Wonderful Husband took Lysol® wipes and tried to disinfect everything I may have touched. And I tried to avoid using my hands to turn on lights or open doors. Hopefully this will be a Darn Cold party for one and maybe those Darn Cold viruses will get bored and leave early. In the meantime, I'll enjoy the M&M's, because everyone knows you can't have a party without chocolate



Be sure to check with YOUR doctor or pharmacist to see what you should pack for your Darn Cold party.
Also, you may need extra doses of your Parkinson's medications while you are partying. 

Thursday, February 18, 2016

A Parkinson's Symposium in Yuma

The APDA Power over Parkinson's symposium in my hometown of Yuma, Arizona, had been in the planning stages for months. A suitable venue had been booked. Email invitations had been sent out. Flyers were printed and handed out at our support group meeting. Members took extra flyers and posted them in their Doctors offices and in the clubhouses where they lived. The Yuma Sun newspaper ran a detailed story about it on the top of page A2 and continued to run a smaller notice in the "What's Going On" section every day. Public radio station KAWC ran a PSA about it. RSVP's were rolling in like crazy.



Everything was going great, until the day of the event. Two Parkinson's Specialists from Tucson would share their expertise with the Yuma medical community at a "professional lunch" event prior to the public event. I had provided a long list of area physician groups, neurologists, clinics, rehab places and even the Professors of the Nursing and EMT programs at the college to the APDA. Space had been reserved at a restaurant near the hospital. Lunch would be provided free. Everyone on the list was contacted and invited to attend. Guess what? Only FIVE responded! An endocrinologist and 4 non-medical staff from the rehab hospital. 

I live in this town. I know these medical offices close for lunch. The restaurant was near to their offices and yet, none of them wanted to learn anything NEW about Parkinson's. I felt bad for the visiting Parkinson's specialists, but we had a nice visit over lunch. Doctors are normal people when not at work, they tease, laugh and tell jokes! And then it was on to the public event.        

By the time we got to the venue, the parking lot was full and we had to park half a block away. All 150 seats were taken and the staff scrounged up some more chairs and squeezed them in around the perimeter of the room. 


Dr. Kathryn Bradley spoke first. She went to the University of Arizona Medical School in Tucson and did her Movement Disorder Residency at Vanderbilt University in Nashville, Tennessee, before returning to Tucson to work at the Center for Neurosciences. She gave an easy to understand presentation and answered lots of questions. 
Dr. Bradley

After a short break, Dr. Thomas Norton spoke. Dr. Norton is the neurosurgeon who did my DBS surgery and has worked at the Center for Neurosciences in Tucson since 1973. His presentation was a bit more technical, but after all, you can't make talking about drilling holes into peoples skulls humorous, can you? Well, I probably could!

He answered questions and then he got asked the one question that comes up at every Parkinson's seminar I've attended: What about medical marijuana?  

His answer was the same as all the others who've been asked. He's heard anecdotal stories, from patients, that it helps them with tremor, rigidity, pain and sleep issues, but that there hasn't been much clinical research done on it.

I spoke last. I told the people about our support group and that I had some of my Parkinson's Humor books for sale and it was over. The Docs headed back to Tucson and I came home and wrote this story. 


PS: Why isn't more research done on marijuana?
Even though use of it, either for medicinal or recreational purposes is legal in some US States, it is still illegal FEDERALLY. 

Why is this? Back in 1970, the US Government decided that marijuana (cannabis) should be declared a Schedule I substance. This classification means that it has a high potential for abuse and no accepted medical use. Because of this classification, the researchers don't want their grant monies rescinded, or face federal fines, so not much research is done. Getting the classification changed is unlikely any time soon, though researchers have been trying since 1972.

FYI: Here in Arizona, medical marijuana is legal with a State issued ID card, however, if you drive through a US Customs & Border Patrol check-point (they are on all the roads near the southern border) and they find your medical marijuana, they will confiscate it, because they are a Federal agency. 
YumaBev and Dr. Thomas Norton

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Monday, February 8, 2016

Disability Review: Do You STILL Have Parkinson's?

The last job I had was back in 2003. My step-daughter got me a job as a banquet server at the country club where she worked. If it hadn't been for her, they'd have fired me the first day. My hands shook too much to carry trays of food, pour wine or even refill the guests water glasses. I was a glorified busboy and not even good at that. I quit, much to their relief, after about three months.

I had given up trying to work in banking or do any kind of office work the year before. I could no longer write, my right hand couldn't use a computer mouse, and the pain in my upper back from trying to use my right hand was excruciating. As much as I wanted to work, I was physically unable to. I would have applied for disability benefits back then, but was told, "No diagnosis, no disability."

So, I kept going from Doctor to Doctor and finally applied for Social Security Disability on the same day my Parkinson's disease diagnosis was confirmed, September 11, 2007. My Wonderful Husband filled out pages and pages of forms because my writing was illegible. Medical records were requested from all the Doctors I'd seen since 1999, when my first motor symptoms became noticeable and began to interfere with my ability to work. 

Stress makes Parkinson's symptoms worse and there is nothing more stressful than dealing with government agencies. We filled out all their forms, attached copies of all the medical records I could get my hands on, and waited.

The first denial letter came, with instructions on how to appeal their decision. We appealed, added more medical records, statements from past employers and waited. The second denial letter came, with instructions on how to appeal for a judicial hearing. I contacted an attorney and appealed, and waited. My hearing before a judge finally happened in April of 2009, and the judge ruled in my favor. She was friends with former US Attorney General Janet Reno, and had watched her Parkinson's symptoms progress, so she understood the disease. This is the end of the story, right? Wrong.

In February of 2012, I get my first Disability Update Report form. They want to make sure I am still disabled. They want to know if I am better or worse, and want me to list ALL the medical appointments I've had for the previous two years. More stress. Fortunately, I have a file with all my medical records in it, so by the time all my appointments had been listed, there were 27 of them. A few weeks later, I received a "We've decided that we don't need to review your medical records as this time" letter.


In October of 2014, the second Disability Update Report form comes in the mail. It is a carbon copy of the first one. We learned after the first one to keep all my appointments recorded on a computer file. Having easy access to a list reduces the stress for both of us. This time, we list 50 appointments and 7 surgeries. A few weeks later, I get the "no medical review will be necessary" letter. It's pretty obvious, I am NOT getting better and will NOT get better in the future.


Parkinson's is on Social Security's official list of disabling conditions considered severe enough to qualify someone for disability benefits. "Parkinsonian syndrome with the following signs: Significant rigidity, bradykinesia, or tremor in two extremities, which, singly or in combination, result in sustained disturbance of gross and dexterous movements, or gait and station." Maybe someone should also inform Social Security that Parkinson's is a chronic, progressive and degenerative disease with no cure.

I am writing this story to help all the others with Parkinson's disease who are receiving Social Security Disability benefits. You will most likely receive these Update Forms every few years, so start keeping a list of ALL your medical appointments to reduce your stress. 

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Sunday, January 31, 2016

Partners in Parkinson's

Yesterday, Jan 30, 2016, my Wonderful Husband and I got up at 4:20 am, left our home in Yuma, Arizona at 5 am and drove 185 miles (300 km) to attend the Partners in Parkinson's event in Phoenix. 

We have been to many Parkinson's disease conferences over the years and have even helped plan some in our own hometown, so why get up early and drive so far to attend yet another one? This event was being sponsored by the Michael J. Fox Foundation and I wanted to see if it would be different. I was also hoping to see some Parkie friends.

When we got inside, one of the first people I saw was Carl Ames. He was staffing the Davis Phinney info table. As I looked around, I noticed there were no pharma or Medtronic tables. The info tables were for PD foundations, speech, occupational and physical therapy providers, exercise & wellness programs, research facilities and other resources for Parkies. 

We got checked in, got some breakfast and went to find a seat. The place was packed. They announced later that this event had the highest attendance so far, over 1100 people!

The event started with a moderator, Dave Iverson, a nationally known journalist who has Parkinson's himself. He interviewed three local people with
Parkinson's on how & when they got diagnosed, and how Parkinson's has changed their lives since. One of them was Brian Baehr, who I met several years ago, at a Davis Phinney event. Brian believes that exercise and challenging himself has helped him a lot. Another one was Jean Burns, a humor blogger like myself, and an ambassador of the upcoming World Parkinson's Congress in Portland, Oregon (Sept. 20-23, 2016.) I met Jean several years ago as well. The third person was new to me, but like Jean and Brian, refused to let Parkinson's beat him. The audience members were encouraged to write down questions for them. 

The next session was a re-enactment of an appointment with a Movement Disorder Specialist using a recently diagnosed man, his wife and a Phoenix area physician named Holly Shill, MD. Since many people with Parkinson's are treated by their primary care physician or a general neurologist, this session gave some insight as to why seeing a Parkinson's specialist could be beneficial. A short break was taken after and many people went up to speak to Dr. Shill. I introduced myself to her and was surprised when she said "I've heard about you from my patients."



The next session was Dave interviewing three people directly involved in research. We learned about potential new therapies in development and some trials that ended in failure (CoQ10 and Glutathione.) They all stated the known fact that so far, there is nothing out there that can slow down, stop or cure the disease and warned people not to be exploited by hucksters proclaiming a cure. Many clinical trials end abruptly because the people taking the placebo (sugar pill) show the same or more improvement than the ones who actually get the therapy being tested . Why is this? It is because just thinking that something will work, can cause your brain to produce more dopamine. This extra boost can make it seem like it is working, but unfortunately, the effect doesn't last. 

The event had a very patient centered format. There we no physicians using big fancy words, no complicated slides designed to impress other physicians. Just a Parkie interviewing people who answered in terms everyone there could understand. They weren't pushing drug A or a particular surgical intervention. They talked about all the various choices of symptomatic relief, but just in general terms. In my opinion, Dave Iverson did an excellent job of moderating this event. He asked the kinds of questions that I myself might ask if I was ever given the chance to speak to these type experts.  

They provided us with a tasty lunch and because of the long drive home, we left right after the next session, which was how to go about getting a team together to help you navigate this journey. On our way out, we saw Mick. Mick met us in the hospital cafeteria the day before my DBS surgery back in 2012. Mick &  I have been online friends for years, but rarely see each other in person, except at Parkie events. It was nice to see him looking so well. 

I gave out a few cards promoting this blog, and we headed back to Yuma. We got home just before dark. If there is a Partners in Parkinson's event near you, do yourself a favor and go. You might learn something, meet some nice people or find a new Doctor. If you go, be sure to tell Dave Iverson that YumaBev says hi.  

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Wednesday, December 30, 2015

Gimme, Gimme, Gimme

As I sit at my computer desk, (yes, I still happily use a desktop PC, complete with a wired mouse and keyboard) trying to come up with an end of 2015 blog story, an email pops up from a Parkinson's Disease non-profit asking for a last minute, end of the year "tax deductible" donation to keep them afloat. Every few hours, for the last few weeks, they pop up. Some from newly created Parkinson's groups I've never even heard of. 

As much as I'd like to be able to donate, the reality is "tax-deductible" means nothing to me. My income is so low, I'm not required to file tax returns, but must anyway to renew my Arizona Property Tax Exemption for Disabled Individuals. 

Some state legislator said, "Let's make people who are disabled, some cognitively impaired, complete both Federal and State Tax forms, with the bottom lines often being negative numbers, just to prove they don't have huge incomes, so they can save a few hundred dollars on their property taxes each year." Who says the government has no sense of humor? 

Sorry, my mind tends to wander. This explains why I head to the kitchen to eat breakfast and end up picking long blonde hairs up off the area rug instead. Okay, where was I? Oh, yeah, working on a story. Ding! There's another email. 

Maybe I should write about all these non-profits. It seems to me there are way too many of them, all competing for a limited amount of funds. Before you start shouting at me, I don't have anything against groups advocating for Parkinson's. But do we really NEED several dozen of them? All paying salaries for management and staff. Many duplicating the same things the others do. To be honest, I don't know why many of them were created. Ding! Another email. 

I'm pretty sure I know WHY Michael J. Fox started his own foundation. He wants a CURE and is willing to use his clout to help fund research. I also know why the lobbying group PAN was formed. To push the Parkinson's "agenda" to Congress and occasionally succeed. Though no matter how many letters and emails I sent to MY so-called representatives, I always got the same "Party-line" response back from them. Congress is only interested in getting re-elected and keeping their big-money donors happy. So unless they are personally impacted by Parkinson's, they don't really care about those of us living with it. Ding! Another email.       

Every year, I get invited to attend the PAN forum in Washington D.C. The registration fee is $300 and that doesn't include travel costs and hotels! That's almost half my monthly income. I also get invited to PAN's Morris K Udall dinner, which is even more expensive. 

Speaking of food, I'm hungry. Did I eat breakfast? Oh, look, there's a dust bunny hiding under my desk. Ding! Another email. 

Oops, sorry. I got distracted again. Back to my story. I've attended several Parkinson's conferences over the years, sponsored by various non-profits. The one I enjoyed the most was the Davis Phinney Victory Summit, they focus on LIVING with Parkinson's. 
Davis Phinney
I helped set up a half-day conference here in Yuma (with Medtronic as a sponsor) and got my favorite Doctors to come speak. But, after you've been to a couple of Parkinson's conferences, they get boring. The only part of them I enjoy is meeting others with PD whom I've only met online. But due to the format of these conferences, you don't have ANY time to socialize. Ding! Another email.

I have a little bit of extra money saved, so who should I give it to? I've already "Paid it Forward" at the Davis Phinney Victory Summit I attended in Las Vegas. I sponsored someone during the Unity Walk as well. I sent a donation to Wikipedia because I use it for info often. I've sent free copies of my Parkinson's Humor book to people who I thought might need a laugh or two. I've given local Parkies rides to the Doctor or to our support group meetings. Ding! Another email. 

Who has helped the Yuma area people with Parkinson's the most this year? Who has helped me the most? Maybe I should use this as a deciding factor. In this case, the answer is easy. It's the instructor who teaches the SilverSneakers® exercise classes. I think I'll give her an end of the year tip! It won't be tax deductible, but that doesn't matter.

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:
video


Three years later video:


video


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

Monday, October 12, 2015

YumaBev's Big Summer Adventure

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Anyone want to trade books? 



PS All these books are available from Amazon.com

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