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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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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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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I'd Like to Get to Know You

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

Red dots indicate visitors to my blog

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

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

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

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

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

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

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Dr. Z and Me

I went to see Dr. Z, my Neurologist, on Wednesday, April 18, 2012.  Going to see Dr. Z is like visiting a friend, I have been seeing him every 2 - 3 months since August of 2007, when he first diagnosed me with Parkinson's Disease.  


My visits always start the same, Bonnie or Malinda sign me in, then Perla shows us (my Wonderful Hubby always comes along) to an exam room and in few minutes, Dr. Z comes in, smiles a big smile, and says: Hello, Mrs. Ribaudo, Mr. Ribaudo, how are you today? He shakes both our hands and sits down.


Part one of my visit was as his patient.  He asked me how I was doing with the dosing changes we made last visit (3 months ago).  I told him I was having bad left foot cramps (my lesser affected side) everyday around noon (during peak on time) and that I had tried cutting back my Stalevo 100's to 4 times a day (after Charting my symptoms) instead of 5, to see if it made a difference.  The foot cramps had disappeared and the slight increase in off time was acceptable to me, so he wrote down the new dosing times and said okay.


We then discussed the possibility of replacing a couple of the Stalevo's with plain Sinemet (I am concerned about the potential negative side effects of the higher doses of entacapone, the extra ingredient in Stalevo). Dr Z said I could try it, but do it slowly and carefully chart my symptoms.  He said I might need to take a half pill in between doses and wrote me a prescription.  I asked about reducing the Requip (also due to potential side effects), but he suggested just one change at a time.  I am to report back in 2 months, sooner if problems occur.


Part two of my visit was as a Parkinson's Advocate.  I showed him the Aware in Care Hospital Kit and told him to expect patients to be bringing them in.  He asked if he could order some to hand out and I said yes and gave him the info.  I told him the Neupro Patch had received FDA approval, again. I showed him the Proclamation from the Mayor and my two stories featured on the Michael J Fox Foundation blog. I then asked him if I could take a picture of him for this story.  He seemed embarrassed, but said yes. 


He then gave me my usual hug (yes, we end every visit with a big hug), shook hands with my Wonderful Husband and went off to take care of another patient. Now you all know why I love my Dr Z.  

Bev and Dr Zonis

Dr. Julio Zonis, his beautiful wife Perla (who is his office manager) and Malinda and Bonnie (the girls who do the rest) always take excellent care of me!


PS  Every Parkie is different and finding the right combination of medicines, doses and timing takes patience.  Charting has really helped me and my Doctor, however, what works for me will probably not work for anyone else and what works for me this week may not work next month. Discuss any medicine changes with your Doctor.


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Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon or your favorite online book seller. Thank you and have a Happy Parkie Day!

Charting Parkinson's Disease Symptoms, The Results

A while back I wrote a story about how I made a chart of my symptoms for several days prior to a visit with my Neurologist.  The wonderful people at the Michael J. Fox Foundation featured my story on their blog and made me a guest blogger (MJFF Guest Blogger) which was quite an honor, to say the least. To read that story, follow this link: Charting a Parkie.  
Based on the findings on that chart, we adjusted my medicines.  Well, it's been a couple months on the new drug routine and I thought you'd be interested in my results.  


I WAS taking a Stalevo 150 and a Requip 1 mg (see Notes below), at 7am, 2pm and 9pm and this is what my chart of symptoms looked like for an average day.

clicking on it will enlarge it

As you can see, there aren't a lot of 10's and I was spending most of the day waiting for the medicines to work.  A 10 is the best I expect to feel on any given day, not what a 10 would be for a person without Parkinson's Disease. 


Based on that chart, we decided to lower the strength of the Stalevo and increase the number of times I took it.  I NOW take Stalevo 100's at 6am, 10am, 2pm, 6pm and 10pm and the Requip 1mg at 6am, 2pm and 10pm (see Notes below).  My cell phone alarm goes off to remind me and since it was going off so often, I used some humor and it plays "I Want A New Drug", the Huey Lewis song from the 1980's.


I am very pleased with the results and this is what my chart looks like on an average day.

Clicking on chart will enlarge it

Notice how many more 10's there are.  If there was some way to make today's 10's feel like last year's 10's, it would be fantastic, but that ain't going to happen.  I am worse than I was last year, and much worse than I was 2 years ago, but I am still doing better than I was the day before I got diagnosed, so life is good, yes very good (and I still feel better after eating chocolate chip cookies)!


PS Every Parkinson's patient is different and what worked well for me might not work for another patient. And what works well for me today, may not work at all next week.


Notes:
Stalevo 150 is a brand name combination of 37.5 mg carbidopa USP, 150 mg levodopa USP and 200 mg entacapone
Stalevo 100 is a brand name combination of 25 mg carbidopa USP, 100 mg levodopa USP and 200 mg entacapone
Requip is a brand name of 1 mg ropinirole

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!