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Saturday, September 24, 2016

World Parkinson Congress - Final Day

We were up early today and had breakfast with Pertti and a grad student from India. That's one of the brilliant ideas behind the World Parkinson Congress. Doctors, researchers, grad students, therapists and people with Parkinson's and their care-partners are all treated as equals and may attend any program they want to. 

We grabbed my stack of books and went to my Poster presentation on how I use humor to educate about Parkinson's. I gave a free copy of my Parkinson's Humor book to everyone who stopped by.  

My Poster  presentation

When I was done with my presentation, I wandered through the exhibit hall and ran into James Beck, Ph.D (he's the Chief Scientific Officer at Parkinson's Foundation). James and I have been Tweeting back and forth for years, so it was nice to finally meet in person.
YumaBev and James Beck Ph.D
Soon after, Israel Robleto walked up and said hello. I know him from Facebook. 

YumaBev and Israel Robleto

I was tired, so we went back to our room for a quick nap. I'd been looking for Jill Carson for three days and finally found her at the closing ceremony.

YumaBev and Jill Carson
They announced where and when the 5th Congress will be: Kyoto Japan, June 2-7, 2019. If you get a chance to go, do it.

I posed for one last photo with Parky Raccoon, the World Parkinson Congress mascot.

YumaBev and Parky
We said our goodbyes to old friends and new ones and went back to our hotel. We head for home in the morning. Attending the 4th WPC was a once in a lifetime event for us. I missed the 3rd WPC in Montreal due to breast cancer and Japan is just too long a trip for me. I loved every minute and am so glad I got to meet so many Parkie celebrities in person.

PS I finally got my camera shy Wonderful Husband to pose for a photo.
Wonderful Husband

Friday, September 23, 2016

World Parkinson Congress - Day Two

The theme for Day Two was inspiration! Read on.

We got to breakfast at our hotel earlier today and sat with Jari and his room mate, Pertti, from Finland. Jari and I had been emailing each other during the summer. Jari also had DBS for his Parkinson's disease . His bumps are a bit more noticeable than mine. He also has a great sense of humor.
Jari from Finland and YumaBev
Jari (on left) Pertti (far right)

Jari travelled to the USA with a large group from Finland (Team Oiva) and they did some sightseeing prior to the Congress. They rented some vans and drove from San Francisco to Los Angeles and then on to Las Vegas before flying to Portland. We talked about Parkinson's, DBS and the crazy traffic in California.   
The Finland group along the Pacific Coast Hwy

We went to a special lunch time presentation called Living Well with Parkinson's. This featured four people living with Parkinson's; Linda Olson, Brian Grant, Tim Hague Sr and Andy McDowell.

Linda Olson went first. She was a petite woman who walked awkwardly to the podium and was helped onto the tall chair by her husband. She became a triple amputee in her 20's and got Parkinson's thirty years later. Her enthusiasm and can do spirit was contagious and she claimed to have a HAPPY gene in her DNA and wished she could give HAPPY transfusions to all of us. If you want to read more about her, follow this link to Bruce Ballard's blog story about Linda. He has pictures and the full story. 

Brian Grant, a former NBA basketball player was next. He's a big man, 6'9" and his first words were "How do I follow her?" which drew quite a laugh from the crowd. He played in the NBA for 12 years and began to notice his one leg felt awkward when he jumped. Then he had some hand tremors. Depression was a big problem for him and he'd love some of Linda's HAPPY blood. Brian believes exercise helps his Parkinson's and has a foundation in the Portland area.
Brian Grant & YumaBev

Tim Hague Sr was next. He started off by saying that he'd like a HAPPY blood donation, too. Tim and his son, Tim Jr competed in and won The Amazing Race Canada. 
Tim & YumaBev

Unfortunately, they couldn't get Andy's slide show to load, so the moderator took questions from the audience instead.  

After that inspiring event, we left and had lunch at Burgerville with folks from InventivHealth. 

Then we went back to the Convention Center and found the Radio Parkies quiet room. Christine, from Belgium, showed us their set up. Every show is pre-recorded, so they don't have to worry about speaking difficulties and they can "fix" the occasional stutter or awkward pause. Great idea! She set up a recorder and we started the interview. I happened to mention that years ago, I wrote some song parodies about Parkinson's. Christine turned off the recorder and asked if I ever heard of a song called Just Another Day of Parkinson's. I laughed and said, "Yes, it's one of mine!"   

You'd have thought she just met Elton John. She got so excited. Apparently, it's popular in Belgium's Radio Parkie, but they have been afraid to play it without permission. So, I promptly gave her permission to play any of my songs on air, but warned her I wouldn't be responsible if people called and complained about how badly I sing!

After we were done, we wandered around the exhibit hall, met some more Parkies and then we went back to our hotel room for a rest.
Pat, YumaBev, Cidney Donahoo
YumaBev & Donna Boyd
Joey & YumaBev
YumaBev & LaDona Molander

That evening, we went to a music program at the Eastlund Hotel. David Sangster, who I knew from Twitter, was there and I finally got to see the UK phenomenon Tom Isaacs perform. Several other people with Parkinson's performed and it was a wonderful evening. It was after 10pm before we made it back to our room.
Tom Isaacs 

I never made it  to a single educational seminar, but that's okay, because it was an exhilarating day!

Thursday, September 22, 2016

World Parkinson Congress - Day One

Our first full day of the World Parkinson Congress started late because we both overslept. I guess all the travel caught up with us. Our hotel, the Quality Inn, had a free breakfast buffet included, and we managed to get there right before they closed. As we were eating, a lady with a WPC badge (I think the entire hotel was filled with attendees) recognized me and asked me about DBS. I explained the procedure and gave her the link to My DBS Story blog

We headed over to the Convention Center to hear Dr. Okun speak about what to expect long term with DBS, but instead he spoke about using DBS for other purposes. Someone tapped me on my shoulder. It was Sherryl Klingelhofer from Tillamook, Oregon! She is a Master Fitness Trainer who makes videos of Parkinson's specific exercises (link on left sidebar.) Her Dad had PD. She is staying at the same hotel as we are. It was exciting getting to meet her in person!

We walked over to the exhibit hall where I had a meeting with Emilie, one of the representatives of St. Jude Medical (another DBS manufacturer.) St. Jude had the best multi-berry smoothies at their booth. 

As we were finishing up, her next appointment arrived and it was Karl Robb, from Virginia, another long time online friend! Karl is a blogger and author and also runs a PD support group. A link to his Soft Voice blog is on the left sidebar. Karl was diagnosed with PD at 23.

We visited a bit, and then we wandered around and saw Sara Rigarre from Sweden! Sara blogs about self care awareness at Quantified Self. Sara has had PD symptoms since she was 13.

Next I filmed a Tips & Tricks spot for my Twitter friend David Sangster from the United Kingdom and The Cure Parkinson's Trust. David was diagnosed at 29 and runs the Young Parkinsons Network in Manchester, England. 

As I was leaving David, I ran into Gretchen and Michael Church from Florida! They are married authors, advocates and both were diagnosed in their 30's. Both have had DBS surgery. 

I walked over to take a look at the selection of books in the Book Nook and took a picture of my book.

By this time, the day's events at the Convention Center were winding down and we only made it to one educational seminar (Dr. Okun.)

We walked back to our hotel, relaxed a bit and updated my Facebook and Twitter pages and then went to the Support Group Leader Reception (more free food) at the nearby Doubletree hotel.   

We sat with Karyn from Australia and the Radio Parkies group. My Wonderful Husband was a radio station and nightclub DJ in his working life, so he really enjoyed learning how they broadcast over the internet. We agreed to stop by their broadcast room sometime tomorrow for an interview.
Christine and Andre Radio Parkies

Sherryl was there, too, and we walked back to our hotel together. She told me she saw us yesterday when we were checking in. She was swimming in the pool. I saw a woman swimming, but didn't recognize her (probably because she wasn't wearing her trademark hat!) It was another full day of fun and I can't believe how many celebrities in the world of Parkinson's disease I've met already! 

You probably noticed I am wearing a jacket in almost every picture. It was 107° when we left Yuma, so being in Portland where the temperature was about 68° was cold to me. When I get chilled, I scrunch up and it causes me pain.   

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Wednesday, September 21, 2016

World Parkinson Congress - Opening Day

Our trip to the World Parkinson Congress was almost complete. We only had a short drive to get there, so we stopped to see the famous Multnomah Falls, which is just 30 miles east of Portland, Oregon. This scenic waterfall is visible from I-84, a main east-west highway. In fact, there is a parking area between the east and westbound lanes so you can stop and walk under the highway to get a close up look. We took a few photos and a selfie or two and then drove to our hotel. 

It was early for check-in, but they had one room ready, so we parked in the garage and took our stuff to the room. Then we walked the block and a half to the Convention Center to pick up our name tags at the registration table and pick up our WPC satchels full of goodies. 

We were headed back outside to find a restaurant when a WPC volunteer offered us each a box lunch from a table stacked high with them. We told her we were NOT part of the pre-congress seminars, and that we had just checked in. She said, go ahead and eat. It was after 2pm and we were hungry, so we sat outside and ate.  

After lunch (which was yummy) we went to find the Poster Session area and hung my poster display. 
YumaBev with her Poster display

We tried to get the general layout of the place; where the sponsor/exhibitors were, where the big events would take place, and most importantly, where the restrooms were. As we were wandering around, I saw Michelle Haub from Kansas. We'd met at a Davis Phinney Victory Summit a while back. Several people came up to me and asked if I was YumaBev. Most had read this blog or my Parkinson's Humor book and recognized me from the photos. It was great meeting them and giving and getting hugs.

By this time, my shoulder was hurting from carrying the satchel. It must have weighed at least 4 pounds. 
WPC goody bag

We walked back over to the hotel, and took a quick nap. Then we changed into dressier clothes and walked back over for the WPC Buddy Reception. My Las Vegas friend Kip was one of the Buddy Program coordinators and he was there with his wife Kitty. I never did meet my assigned Buddy; she had other plans that evening.

I did, however, FINALLY get to meet Karyn in person. Karyn lives in Australia and is the chat room friend who convinced me to start this blog! Karyn started a Young Onset PD group in Australia called Young @ Park, blogged about her DBS surgery and is active in the PD community.
Karyn from Australia and YumaBev

It was wonderful to see her and get to talk in person. Also there was my Buddy from the Montreal WPC, Nancy. Karyn's Buddy, Robynn was there, also. We all had been emailing each other for several months, so we had a great time visiting with each other.

Next thing we knew, it was time to go to the Opening Ceremony. Karyn sat with us. The WPC Choir sang (they rehearsed online!) and then there was the opening speeches and welcome to Portland video from the Mayor. Brian Grant, a former NBA basketball player, who has Parkinson's spoke. Then Muhammad Ali's eldest daughter, Maryum spoke. 

Then we all moved to the Sponsor Exhibit hall for the Welcome Reception. Almost every exhibitor had either food or beverages of some sort. There were egg rolls, sandwiches, smoothies, and desserts. We ran into others I knew online, checked out the exhibits and snacked. Soon it was over and we walked back to our hotel.

It was a fabulous day, but I was exhausted and went right to sleep.

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Tuesday, September 20, 2016

Everything is Peachy

This story begins twelve years ago. My Wonderful Husband I were still living and traveling full time in a RV back then. We were staying at a campground, near the Columbia River in Oregon during the summer of 2004.  

The campground was situated along a tributary river that fed into the Columbia and we were lucky enough to get one of the few riverfront campsites. We had a tree close to the water on our site so we had some shade. We'd sit in our lawn chairs and watch the people fishing and water skiing. We could even see the big barges going down the Columbia. It was Heaven. 
Riverfront camping in 2004

The weekend came and people showed up with their tents, campers and boats. A family who was camping near us, but not on the water, asked if they could tie their boat up to the tree, so they wouldn't have to trailer it in and out all weekend. Absolutely, we said, and thought no more about it. 

The next morning, someone knocked at our door. It was the boater with a paper bag full of fresh fruit. We said thank you. There were cherries, apples, and peaches. I ate an apple with my breakfast and my Wonderful Husband had some cherries, both were delicious.

We weren't sure what we would do with the peaches. I had tried fresh peaches before and didn't like them. Wonderful Hubby had fruit allergies as a child, so he had never tried fresh peaches.

The next morning we decided to try one of the peaches. I didn't like the taste or texture, but my Wonderful Husband absolutely loved them. We asked the boater where, exactly, he had gotten the fruit. For the rest of that summer, we went across the river to an orchard in Washington. I'd get apples and he'd get peaches. 

When we got back to Yuma in the Fall, he bought peaches in the grocery store and they were awful. We never made it back to Oregon, so Wonderful Hubby never got good peaches again. 

Fast forward twelve years and the World Parkinson Congress  (WPC) is in Portland, Oregon. The route I planned to get there wasn't the shortest or the most direct but it would take us right near that orchard from a dozen years ago. I didn't know if it would still be there or if they would have any peaches left, but I was willing to take a chance. I didn't tell Wonderful Hubby because I didn't want to get his hopes up. 

As we were driving along I-84, enjoying the view of Mt. Hood in the distance and watching the barges on the Columbia River on our right, we drove past that campground we had stayed at so many years before.  

All of a sudden, Wonderful Hubby remembered the peaches and asks if I remember where the orchard was. Yes, I said, the bridge is up ahead and I've been planning on stopping there ever since I found out the WPC was going to be in Portland. 

We went across the river and turned down the side road to the orchard, keeping our fingers crossed. The trees were barren, but up ahead the fruit stand was open and there were boxes of peaches! 

Wonderful Hubby jumped out and went inside. They had picked the last peaches of the season a day or two before and would be closing the stand in a few days. They cut one open so he could have a taste. It was delicious, he said. He ended up eating the rest of it and he bought a whole box of peaches from their cooler, so they'd stay fresh longer. After all, we wouldn't get back home for about a week.

Box of Peaches

Now all I had to do was make room in our car. I hadn't thought about this part. We squeezed them in between our suitcases and headed off to Portland. It was colder in the hotel garage than in our room, so we left them in the car during the WPC.

On our way home, they got moved inside at each stop and placed right in front of the room air conditioner. They made it all the way back home to Yuma and he shared some with the neighbors. I thoroughly enjoyed watching him savor every bite.

Everything about our trip to Portland turned out to be just PEACHY! 

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Monday, September 19, 2016

Hitting the Jackpot

The Karaoke Finals were done and now we had two and a half days to get to Portland, Oregon for the World Parkinson Congress. We left early Sunday morning and got through Las Vegas before the traffic got bad. We topped off the gas tank and headed north through the desert on Highway 93.  

Northbound, we had the road to ourselves; there were no cars in front of us and none in the rearview mirror. Southbound was a different story. We kept seeing sports cars whizzing past us. Corvettes one right after another. They had signs on their driver doors, but we couldn't read them, they were just a blur. Must be a Sunday morning car club cruise, we thought. Then we noticed other cars with signs on their doors flying by; Ford Mustang, Chevy Camaro, Dodge Charger, Porsche, Ferrari, Lamborghini, Nissan 350Z and Mercedes. This was definitely not a Sunday cruise. 
FAST Camaro

When we got to the NV 318 shortcut, the road was closed northbound and a State Trooper was parked nearby. There was a yellow Corvette parked off the side of the road, with a sign on the door, so we pulled alongside, in my yellow Sonic and asked what was going on. It was a charity event called the Silver State Classic, a legal way to drive your car as fast as you want. Since the event wasn't over and we needed to keep moving, we turned around and took the long way which added an extra hour or so to our travel day. 
YumaBev's NOT VERY FAST Sonic

As we headed north, several of these sports cars passed us. They had license plates from States north of Nevada, so we assumed they had already raced and were now heading back home.
Very FAST Corvette

It was getting dark when we got to Jackpot, Nevada, where we stopped for the night. We watched some TV and went to bed early. When we got up the next morning, there was a old 1940's Ford parked next to us, with the Silver State Classic sign on its door. He must have a souped-up engine in that old car!    

Hey! I have an idea. How about a "Fast Cars for Slow Parkies" fundraiser for the Michael J. Fox Foundation? 

What should have been a very boring drive ended up being exciting as we watched all the exotic cars zoom past us. We definitely hit the Jackpot. 

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Sunday, September 18, 2016

Surprises at the Karaoke Finals

We were all packed for our trip and our first stop was only 200 miles north of Yuma. We decided to go see the Talent Quest International Karaoke Finals in Laughlin, NV on our way to Portland, Oregon. We hadn't been back since the dance contest incident back in 2011.

We had such a great time the last time, I don't know why we haven't gone back. I think we just got lazy. It's easier to just stay at home. But since it was on the way, we decided to go. We got there on Thursday, and watched some of the preliminary rounds. The talent was very good. I don't know how the judges narrowed it down each round. I spotted a contestant wearing the perfect karaoke t-shirt while watching his girlfriend compete.

All the competitions were held in the same venue, so it went on from 10 am until almost midnight each day. There were six categories, Male & Female Pop, Male & Female Country, Male & Female Masters (over 50 years old and can sing any type of music) plus Duets. There were singers from all over the USA as well as Canada, Australia, New Zealand, and some who appeared to be speaking Russian when they weren't singing. I always find it amazing when people can sing in American with no discernible accent but can't speak that way.

For the Saturday night Finals, they had narrowed it down to five singers in each category, plus two duets. By this time, we had heard some contestants sing a couple of times. Each contestant had to sing a different song in each round and they were judged not only on their singing ability, but also on their costumes, stage presence and showmanship. You couldn't just stand there in a t-shirt and sing; you had to put on a show. I bet they all had extra luggage fees.

Their outfits were amazing. There was colorful lamé fabric, skin tight jeans sprayed with fabric shine, sequins, bright belt buckles, fancy hats, rhinestones and glitter everywhere. And these were the MEN!!!

The ladies were dressed up, too. But none took the time to pose for pictures. I think they were in a hurry to get back into their comfortable clothes. 

The camaraderie between the contestants reminded me of our Parkinson's disease community. They were giving each other encouragement, and sharing hats, belts and rhinestone bling as well as offering helpful tips. Some come back every year, not to compete, but to visit with the others.

During one of the elimination rounds, I saw a familiar face in the audience. It was RL Bell, a contestant on America's Got Talent. I walked over and said hello and told him how much I enjoyed him on the show. He was very friendly, so I told him about this blog and asked if I could have a picture with him, and he said yes. 
YumaBev and RL Bell

The Finals started at 7 pm and we got there early to get a good seat. You had to buy tickets for the Finals ($12) but all the other rounds were free. What a deal.

All the singers were very good, and during a break between categories, they had a wedding. Yes, a wedding. One of the Talent Quest staff got married to a former contestant. They said all their friends were here, so they decided to go ahead and get married. Only the bride, groom and one emcee knew about it ahead of time. That was an unexpected surprise. 

During another break, one of last years winners sang. Then RL Bell sang and the winner of the Duets from the 2011 contest sang. I recognized them, too. When the winners were announced, I was in total agreement with their choices. I wonder if they need any judges? Nah, being a spectator is much better.   
Duets winners from 2011
It was after midnight before the "show" was over. It was, by far, the best $12 I've spent in years. 

Reminder to self, don't be lazy, make plans to go again next year.

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Wednesday, September 14, 2016

Health Insurance Companies...BOO !!

So there I was, cruising along down the Parkinson's Disease Highway in my very own Happy Parkie bus.

The weather was sunny, there wasn't much traffic and the road was well-maintained. I was enjoying the ride as well as the scenery, just relaxing and listening to my humorous song parodies on the radio. 

All of a sudden, up ahead, I saw a huge barricade across the road. "ROAD CLOSED!" the sign said.

Well, not really. It was my computer screen shouting at me. Or was it me shouting at my computer screen? Does it even matter? I was getting upset and everyone knows stress is bad for Parkies. So, WHY was I upset?

I was on my Medicare Advantage Plan website, checking to make sure all of my Doctors were still in-network before calling to make my regular October appointments. Dermatologist, yes. Primary Care Doctor, yes. Gynecologist, yes. Nearby laboratory, yes. All my appointments are made. Smooth roads ahead.

Hmm, while I am on here, I better double check and make sure Dr. Sherman; my Movement Disorder Specialist is on the list. After all, I already have an appointment with him in November, right after I speak to his class of medical school students

Warning! Warning! ROAD CLOSED ahead! 

My Happy Parkie bus came to a screeching stop, sliding sideways and kicking up a cloud of dirt. 

Dr. Sherman's name wasn't popping up like the others. I re-entered the Tucson zip code and carefully typed S-h-e-r-m-a-n. Nothing! I tried a different Tucson zip code, still no Sherman. No matter what I tried, Sherman was no longer on my insurance company list of Doctors THEY think I should see.

I don't need this right now. I am leaving tomorrow morning for Portland. I sent Dr. Sherman a quick email, and tried to calm down and finish packing for our trip. As I went to sleep, the words "Continuity of Care" kept bouncing around in my head. I know how important it is to have an established team of health care professionals, especially with a chronic disease like Parkinson's. 

"Continuity of Care is concerned with quality of care over time. It is the process by which the patient and his/her physician-led care team are cooperatively involved in ongoing health care management toward the shared goal of high quality, cost-effective medical care."

My Continuity of Care just evaporated. I will need to find another Movement Disorder Specialist. IF I can find one accepting new patients, it will likely mean a six-month wait for an appointmentThis means pages of paperwork for my Wonderful Husband to fill out, again. Plus I will need to educate my new Doctor about me and my DBS settings; what they have tried in the past; what worked and what didn't. In other words, this will be a huge pain in the neck. 

Morning comes and I have decided to deal with it when I get back home from Portland.

I check my email and there is a reply from Dr. Sherman. He knew nothing about the insurance change, and says he will try to work something out for my upcoming visit.

I asked a doctor friend how they decide what insurance they will take and was told they have little choice in the matter. The insurance companies decide how many providers they need in an area, and then they pick the ones they want and sign them up. 

Don't our insurance companies realize how difficult it is to change doctors? Do they even care? It's not like I can just call one and get an appointment for next week.

I don't WANT to find a new Parkinson's specialist. I like the one I have. 
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Friday, September 9, 2016

Sad Feet to Happy Feet

My feet had been bothering me for several months. The pain was different than last year. I wasn't sure what was wrong with my feet, but I thought I had better find out. I called to make an appointment with a Podiatrist and hoped I could get in before October. The receptionist asked if I could come in the next day. I said YES. Apparently someone had cancelled right before I called. Lucky me.

I stopped by later that day and picked up the forms so my Wonderful Husband could fill them out for me. The next morning I went in for my appointment. I explained to the Doctor that my feet hurt intermittently; some days were bad, other days I had no pain at all. He asked if they hurt when I first got out of bed (plantar fasciitis) and I said no. He had me walk, stand and manipulated my feet. He said my Achilles tendons were very tight and my one leg was shorter than the other. He grimaced when I told him I had Parkinson's and a DBS neuro-stimulator. He said having Parkinson's complicates things. Duh!

He put a lift in the heel of my one shoe and gave me some stretching exercises to do and said come back to see me in a month if you don't have any improvement. 

I went home and did the stretching exercises. Since this looked like something I would have to figure out on my own, I started paying very close attention to how my feet were affected by my Parkinson's medication cycle and DBS settings.  

I noticed that when my Parkie meds kicked in, two things happened. My feet would stretch and twist themselves awkwardly and I would walk on my tip toes, but only for about 10 minutes. If I was sitting down during these twice daily episodes, my feet were fine. If I was standing or walking when it happened, then my feet would hurt the rest of the day. This explained the intermittent foot pain. 

Since I was only taking half of a carbi/levodopa pill twice a day for my speech issues, cutting back wasn't an option, unless I wanted to be mute. (No snide comments from the boys out there!) 

I lowered my DBS settings a bit, but the stiffness and slowness returned. I tried adding another half a pill with the lower settings and finally found a good combination. I lowered my DBS settings by 2 tenths on each side and increased the carbi/levodopa to four halves a day and actually improved my speech! 

Within a few days of figuring all this out, my feet stopped hurting. I am still doing the stretches the doctor ordered. This Happy Parkie now has Happy Feet.