The 10-Year Anniversary of My Parkinson's Diagnosis

To be honest, TEN years ago, I wasn't feeling very optimistic. I still had my sense of humor, but I was becoming very discouraged. I had been sending out "The Letter" to neurologists for weeks and weeks and had not received even one reply. Since I had been previously told, by multiple neurologists, that my problem was NOT Parkinson's disease, I was completely clueless as to WHAT was wrong with me. There were only three names left on my alphabetical list of neurologists within 500 miles of home. Two W's and a Z. I almost gave up, but I decided to go ahead and mail those last three letters.

My symptoms were getting worse every day. I needed more and more help with normal daily activities. Whatever I had was progressing at an alarming rate. I knew that within a matter of weeks, I would no longer be able to walk. 

My Essential Tremors were being managed fairly well by the propranolol, unless I was upset, then my whole body shook uncontrollably. It was the stiffness, lack of dexterity and coordination and the feeling of being completely tensed up that was getting worse. 

I could barely bend my leg to put pants on. Walking was becoming more and more difficult. My right leg felt like someone had put a 50-pound concrete cast on it from hip to toe. I didn't have enough dexterity to fasten the hooks on a bra. Buttons and zippers? Forget it, no way! I had to stand with my arms above my head, like a two-year old, and have Wonderful Husband take my shirts on and off. (He actually seemed to enjoy the taking off part!) It was almost impossible for me to get my right arm behind me to get my arm in a sleeve. I could no longer get up from a chair without help. My neck was frozen in a forward position, I couldn't turn it left or right. There was no pain, it just wouldn't move.

Anything that required any skills of my right hand were gone. I now did everything one-handed using my left. Wonderful Husband cut up my meals into bite size pieces. I could no longer even manage to put my hair into a pony tail. My right hand was balled into a fist and my right arm curled up against my abdomen. If I forced them straight, they curled back up as soon as I stopped concentrating.
  
I was so tense, every time the phone rang or a passing train blew its horn, I jumped. Sometimes, even my Wonderful Husband saying "Hey, Honey" startled me. If he came up behind me and touched me on the shoulder, I'd startle so badly, I'd almost fall over. The only thing that gave me any type of relief was sleep. It seemed like I felt best first thing in the morning or just after waking from a nap. 

Days went by and I had heard nothing from the last three letters. I didn't know where else to turn. Everything orthopedic had been ruled out, as had a brain tumor. 

Then on Tuesday, August 28th, 2007, the phone rang, and I jumped. Wonderful Hubby answered it and handed the phone to me. It was a woman's voice, saying they received my letter, and that the Doctor thought he could help me. Could I come in on Friday at 3 pm? I said yes, and handed the phone back to Wonderful Hubby so he could write down the doctors name and address. The doctor was in Yuma, only about 35 miles away. 

The next day, the phone rang again, and again I jumped. It was the same woman, saying they had a cancellation and could I come in tomorrow, Thursday, August 30th, 2007 at 11 am instead? I said yes. The Doctors name? Dr. Zonis, the last name on my list. I would later find out the woman who called was Dr. Z's wife. 

I wasn't holding out much hope, I had doctors tell me before that they knew what was wrong...and then they didn't know after all.

We went and Dr. Zonis gave me a quick neurological exam (finger touches, foot taps, touch finger to nose) and proclaimed Parkinson's. He wrote a prescription for generic Sinemet, told me to get it filled at Walmart and to come back the next week. I asked if he was sure. He said he was positive but that I would know within a week. He said he KNEW it was Parkinson's from just reading my letter. 

YumaBev and Dr. Z 

He asked about my work history and I told him I'd been unable to work for several years. He told me to go to Social Security TODAY and file for disability. His office person told me where it was located. 

We left his office, dropped the script off at Walmart and went straight to the Social Security office and filed for disability. We had some lunch, went back to Walmart, picked up the medicine ($35) and went back home. I took 2 pills that day (Thursday), and 3 the next. While watching TV on Friday evening, I noticed my neck wasn't stiff. I still remember saying, "My neck feels like jello, I can move it."

It's hard to believe that was 10 years ago! A lot has happened during those years. Dr. Z retired, changed his mind, re-opened his office and then retired again. The medicine helped me greatly, then it started not helping as well, so I had DBS surgery. 

I started this blog, wrote a book, took over running the local Parkinson's support group and I made it to the World Parkinson Congress last year in Portland, Oregon.

If you had asked me 10 years ago today, where will you be in 10 years? I'd have answered, "Dead or completely bedridden." But here it is, 10 years later and I am neither. 

As for the Essential Tremor, turns out I didn't have it after all. Apparently the neurologist who diagnosed me got that wrong, too. 

And it is all thanks to one Doctor, whose wife took the time to read a letter, show it to him and then decide to help me. I often wonder what happened to the other dozens of letters I sent out. Did anyone actually take time to read it? 

PS Dr. Z knew I didn't have insurance, so he wrote the prescription for double strength and had me cut the pills in half to save me money. Later on, he gave me samples and would get extra from the various pharmaceutical reps for me. He only charged me $30 a visit. Now that I am on Medicare, my co-pay to see a specialist is $40. I'm afraid there aren't many people out there in the medical field like him, which is sad. I hope he's enjoying his retirement, he deserves it. 

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

Lights, Camera, Action

So, my phone rings and it's Adam, one of my favorite Arizona Medtronic representatives. He asks, "How would you like to be a movie star?" I answer, "Sure, as long as it's not an x-rated movie." We both laugh.

Adam says Medtronic is looking to do some patient stories about DBS and Parkinson's and wonders if I would be interested. "Heck, YES!!" I say.

Adam says filming will take place in Phoenix, Arizona, gives me the potential dates and says Anna, the Marketing Manager at Medtronic will contact me.

We hang up and I turn to my Wonderful Husband and say, "I'm going to be in a movie!" He says, "What have you done now?" Poor fellow, I'm always volunteering for some thing or another.

 Anna calls and gives me the details. It sounds very exciting. She sets up a conference call for a few days later with us and the film people. They ask a lot of questions about my DBS surgery, if I will be nervous in front of a camera (NO!), if my Wonderful Husband would be willing to be part of it (he says yes, reluctantly) and various logistical type things. I warn them about my weird sense of humor, but they have already checked out my blogs.

Anna and the film crew are coming from Minnesota; I hope the Phoenix temperatures don't melt them (predicted high on film day is 108°F.) A few days later, I get an email with directions on where to go, when to arrive and what to bring along (laptop, DBS controller, extra wardrobe changes.) 

The day comes and we drive to the resort hotel in Phoenix, got checked in and the first thing they do is feed us Mexican food for lunch (yummy.) And the first thing I do is spill beans on my jeans! Wardrobe change! It's a good thing I brought extra clothes.  

During lunch, we get introduced to the film crew.
From Blue Moon Productions of St. Paul, Minnesota:
Will, Director/Producer
Jeannie, Producer/Interviewer
Jeff, Audio Engineer
Eli, Director of Photography

and from the Phoenix area:
Dori, Stylest/Makeup
Jarrod, Gaffer/Grip 
Abel, Production Assistant

Then it was hair and makeup time: by the time Dori was done, I didn't look anything like the YumaBev you are used to seeing. Jill, another Arizona Medtronic rep was there and she asked my Wonderful Husband, "Doesn't she look beautiful all made-up?" His reply, "She always looks beautiful." (Good answer!) 

Dori applying makeup to YumaBev

YumaBev after makeup

Part One would be me talking about my life before Parkinson's, after diagnosis and medications, before DBS and my results after. I would be chatting with Jeannie and following her prompts. We went upstairs to a different suite and were set up to start filming when I heard a whirring noise. It was landscaping day at the resort, so the sound guy had to stop us every time he could hear the noise of leaf blowers or lawn mowers in his headset. Occasionally, it would happen mid-sentence and they'd ask me to start over. (I guess they don't realize I can't remember what I just said.) 

Jeannie, Jeff listening and YumaBev

I tried my best to speak clearly and to not touch my face or hair. Dori would come over to apply more lip gloss, adjust my blouse or tame a flyaway hair. When they were done, Will the director, took some still photos with a camera.

Jeff (in headphones), Dori (adjusting my hair) and YumaBev

I got out of the way while they moved items and reset for Part Two: Wonderful Husband's turn. He got makeup too. Afterwards he says, "If George Clooney wears makeup, so can I."

Jarrod getting lighting right for Wonderful Hubby

Part Two was similar to Part One, complete with the leaf blower interruptions. Jeannie would prompt Wonderful Hubby as he told his side of the story.

Jeff, Eli and Jeannie

From where I was sitting, I could see both him and what was actually being filmed on a monitor. I don't know how I did, but Wonderful Hubby looked great! It was very educational to watch all this. Now I know why it takes a year to make a two-hour movie!

Director Will watching Wonderful Husband on monitor

Part Three was me blogging, so they had to move items and reset the lighting. I went downstairs to change into a different blouse and get my laptop. Dori retouched my makeup. We had a problem though. I could not get my laptop to connect to the wifi and I must be online to blog. Anna said, "Use mine." Great! Except I couldn't remember my password. After a brief delay, I reset my password and went back upstairs. Anna's laptop was different than my old one, but I think we made it work. And yes, I was starting to compose this story!

Eli filming YumaBev blogging

Part Four was to be my Wonderful Husband and I preparing a meal while making small talk. I was supposed to chop veggies for a stir fry while Hubby helped. After some discussion, it was decided that Hubby would be in charge of the knife and I would help him (smart move, unless they wanted a blood filled horror film.) He diced the provided veggies quickly while I rinsed them and dropped them in a pan all while talking about karaoke songs. And we were done with the inside filming. All that was left was Part Five...me driving.

The film crew moved to the hotel entrance and I went to get my bright yellow car. I was to put my drivers window down, drive up to the reception area, exit the car and walk inside without looking towards the film crew. Keep in mind, it's 108° outside! 

I drove around the building, stopped, climbed out and...I didn't pull forward far enough. So, around the building I go and...this time I pulled forward too far. So, around the building I go and...another guest pulls in right in front of me. Around the building again and...I finally get it right! Yippee!

I wonder what the front desk staff and hotel guests thought of this bright yellow car going around and round? It reminded me of the car chase scene in The Pink Panther movie, all I needed was a gorilla suit!

We posed for some candid photos, gave and got lots of hugs and we were done. The film crew started packing up and we went and parked the car. Anna invited us to go out with them for dinner, but to be honest, I was exhausted. They had a small complimentary buffet in the lobby, so we walked over there to eat...guess what? Yes! Mexican food, again! 

YumaBev and Anna from Medtronic

After eating, we walked back to our room. It took several makeup remover wipes to get my face clean. We watched a movie and went to sleep early. It had been a very long day.

The next morning we see Jeannie at breakfast, pose for a selfie and as soon as the traffic cleared, we headed back home to Yuma. 

Jeannie and YumaBev

I don't know if they will use our story, if they do, I will let you know. If they don't, it was an enjoyable, educational experience and we both had a good time. 

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

A Cure for Parkinson's Disease?

I get them weekly. They come via email or through social media but most arrive as comments on one of my blog stories. They usually send several with the exact same wording, because the sender doesn't understand why their "comment" isn't showing up at the end of the story. 

They don't know that I read every comment before approving it to be published. This is not to filter out any negative comments, but it is to filter out obscene (yes, I do get x-rated comments!) or predatory ones.

They usually start like this:

I was told by doctor that I had Parkinson many year ago with horrid shaking. I was given medicines that caused bad problem. Then I found Dr. X's herbal treatment and within days, I was completely cured. Dr. X tried to market his cure but was refused by the government. I will share secret with you. Go to website or call this number. 

These messages always have misspelled words and improper grammar and the cure always seems to happen within days of taking this 'treatment.'

IF you go to the website, you will see that this same treatment also helps every other ailment out there. Notice I said 'helps.' The website will be very careful about using the word cure. You have no idea what exactly is in this herbal treatment. If you spend the money (which is never inexpensive) to buy this stuff, you may be ingesting harmful ingredients. And if you do feel better, it's probably just a placebo effect that won't last.

Don't be an April Fool, beware of snake oil salesmen.

If there ever is a proven cure, trust me, the Michael J. Fox Foundation will know about it.

How to Track Your DBS Generator Battery Life Using the Programmer

The Medtronic DBS generator in my chest has a battery life span that varies depending on my individual settings. The higher the settings needed to control your Parkinson's symptoms, the shorter the life span. My battery is over four years old and still doing good. Others I know had to have theirs replaced after two years. Many don't realize you can check the battery life using your patient programmer.

It is a very simple process. All it takes is a few clicks and I will show you the steps below. I will use the word GENERATOR when I am talking about the surgically placed unit in my chest that delivers the therapy to my brain. 

This is my DBS programmer. It has a small white button on the bottom right side that turns the programmer on and off. There is also a larger white button at the top left that is used to turn the generator on or off. I will be using the ORANGE button with the check mark on it for this tutorial.

Place the programmer, or the attached antennae on top of your generator and press the orange button. When I do it, this is what my screen looks like.

Now, see the box outline around the center line where it says OK? The OK means that my generator battery is OK. But what if I want to know how much life is left? I use the arrow buttons on the bottom of the programmer and push the right arrow once. This is what my screen looks like after.

It says OK and 2.89 V. 

When my generator was brand new, my reading was 3.20 V. A year ago, it was 2.98 V. In January, it was 2.91 V. When it gets down to 2.61 V, I will get an ERI message warning me it's time to contact my doctor to schedule surgery to replace the generator.

Sometimes the outline is around the top line. 

This line tells me the generator is ON. If I use the arrows and move it to the right, it will display the programmer batteries. The AAA batteries in the patient programmer. 

It says Low and 25%. So I need to put new AAA batteries in my programmer. PS I use rechargeable ones.

You can use the up & down arrows at the bottom of the programmer to move the outline box on the screen. 

I check my generator battery once a month. That way, I can see how quickly it is discharging. In my case, I should be good for at least another year. 

An easy way to remember is....generator life is always displayed as V and programmer batteries as percentages.

PS This tutorial is for the Medtronic DBS non-rechargeable generator.

Meet Kathryn Bradley MD

For those who follow this blog regularly, you know that a big detour got thrown into my Parkinson's disease road trip when I found out that my Movement Disorder Specialist, Dr. Sherman, was no longer on my insurance companies list of clinicians I could see. I would need to find a new doctor. I was not a Happy Parkie and found no humor in this detour at all.

Luckily, I managed to find a replacement, Dr. Kathryn Bradley, also in Tucson, and in the same medical practice as the neurosurgeon who did my DBS surgery, Dr. Norton. When I called for an appointment, the first "new patient" one they had wasn't until February. I could wait.

I had met Dr. Bradley once, when she came to Yuma with Dr. Norton for a seminar I helped arrange. She had attended the University of Arizona Medical School in Tucson before going on to Vanderbilt in Tennessee for the rest of her training. 

Since I was going to Tucson in November to speak to the medical school students, I decided to write to her and explain my situation. I didn't need any adjustments to my DBS settings or any medication refills, I just needed to get established. Perhaps, they could squeeze me in, on one of two specific days? A few days later, I got a call, and an appointment the same day I would be in Tucson. It pays to take time to write a letter (in fact, that's how I got diagnosed!)

I went to my appointment and to be honest, I didn't expect much. I knew they had squeezed me in, so I expected a quick hello and see me again in six months kind of visit. I was wrong. Dr. Bradley gave me one of the most thorough neurological exams I have ever had. She did the usual open/close hands, thumb/finger touches and watched me walk. She had me follow her finger with my eyes and looked into my eyes with a light. She used the little reflex hammer on my knees, ankles, wrists and elbows. She had me push up/down with my arms, squeeze her hands with mine. She had me take off my shoes and socks and ran the sharp thing along the bottom of my feet. She checked my balance by tugging me from behind. 

She asked me about my other medical history, sleeping, exercise and eating habits. She was surprised I was doing so well with such low voltage settings and the little amount of carbi/levodopa medication I was taking, especially after finding out I have had Parkinson's for 20 years or so. I told her that Dr. Norton had obviously found the right spot. Needless to say, I was very impressed.

YumaBev & Dr, Kathryn Bradley

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

DBS Update: Four years later

Well, it is now FOUR years since I had DBS for my Parkinson's. 

My DBS stimulation settings are lower than they were a year ago and I am taking less Parkinson's medication and yet, I am doing better physically. 

This makes no sense to my former and current Parkinson's specialists or my Medtronic representative. I saw all three of them when I spoke to the Medical School students in November 2016.

According to the Medtronic rep, my DBS settings are below "clinical therapeutic values."  

I don't know why these settings work for me, but they do. 

DBS settings Nov 2016

I got a new camera since my three year update, and it isn't compatible with the Movie Maker software on my ancient PC, so I can't provide a video update. 

This was one day's worth of medication prior to DBS.

3 Requip, 7 Sinemet, 1 Thryoid

This is one day's worth now! 

1/2 Sinemet, 1 Thyroid

Quite a difference, right?

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

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!

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.   

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

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.

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