The Patient's Voice - A PCORI Experience

I wish I could say I did this for purely noble purposes, but I have to admit, part of the draw was being able to travel to Washington D.C. for the in person panel reviews. Now that I'm home, I'm still very glad I went, but for different reasons. To attend and be the voice, the advocate of patients in the decision making process for funding clinical studies is an amazing and humbling experience. 

I found out about PCORI from my niece, Anne Schuster, who received her Master's degree in Health Economics at Johns Hopkins University. She knew I had been on patient panels at the University of Colorado Medical School and School of Pharmacy and she knew I valued the chance to speak on behalf of patients. She suggested I apply.

I was assigned 4 applications to review under 3 different criteria. I did not have to grade the appications on technical merit. There were plenty of scientists to do that bit. The criteria we looked at as patients were: whether the study identified a critical gap in knowledge, whether the study was patient centered, and whether there was adequate patient/stakeholder engagement in every stage of the study proposal.

If it was a challenge for me to read and determine the strengths and weaknesses in each of these areas, I know it was even more of a challenge to write up the proposals. PCORI is unique in insisting upon patient and stakeholder engagement and many scientists are struggling to figure out just what this means. So far, I'm truly impressed with the work the organizations have done in this area. For our part as reviewers, it was helpful to have a mentor to guide us and answer our questions. My mentor, Kayte, was very patient.

After writing up my critiques of each application and submitting them, it was soon time to go to Washington DC for the in person panel review. We started early on Thursday with breakfast and a short training. Then we were welcomed by Dr. Joe Selby, the Executive Director of PCORI, and others. Then came the actual panel reviews. We presented and discussed each application before giving them our individual scores. Everyone had a chance to speak and everyone's voice was respected equally. The discussions were quite lively. 

Dinner was lively the first night, too, as Kayte and company cheerfully welcomed me to sit at their table. I found out what PCORI mentors and staff do when they're not working. Before long, someone mentioned the new tequila diet, which certainly must be a great idea for another study proposal. The conversation went round and round and I laughed till I hurt. At some point, the originator of the tequila idea looked at us seriously, "But no salt and no lemon. This is a clinical study." And we all collapsed laughing again.

After dinner, I went for a walk with a very nice young doctor. Most of the doctors seem young and I felt a bit like a grandma. Oh, right. I am a grandma. We walked around a few blocks and then back to the hotel, where a nice staff person saw me and came over to give me directions to my room... again. Time to rest up for another day of reviews.

If invited, I would do it again. I believe in what they are trying to do.

Interested? There are many ways to get involved. Start here! Let me know. Maybe one day we'll be on a panel together. 

 

It's the People

The best thing about traveling is the people, especially when traveling alone.

I'm on my way back to Denver from DC, my first trip as a PCORI reviewer. I didn't know what to expect, except I knew I'd be with a lot of scientists, doctors, and other professionals. Though I was a patient reviewer, I also knew they would listen to me and take me seriously. The patient perspective carries a lot of weight in PCORI.

All along the way, I've run into the loveliest people. It's amazing and humbling how the simplest moments can mean so much. I'm grateful for all these moments.

It started before I left Denver. I am grateful to the man in security who whisked me off into the fast lane, put my bags through for me, didn't ask me to take off my shoes, and had me through security in less than 5 minutes. At the gate, I got a nice surprise when a familiar face appeared and I learned that my friend, Thom, from our Rainbeau dance club works for Frontier and just happened to be working at my gate. He made sure I had everything I needed and sent me off with a smile and a hug.

From my time wandering along the National Mall in DC, I'm grateful to the two women who chatted with me and helped me figure out directions. Actually, we worked together. If you ask someone on the Mall for directions, you're more likely to find out they're from your home town and they don't know where they're going, either. I'm also grateful to the young man working at the Franklin D Roosevelt Memorial who gave me real directions, including a map, and walked me to the bus stop, just to make sure I didn't get lost....again.

I'm grateful for everyone who directed me to the right subway, to my hotel, and to my room. The hotel I stayed at was the Wardman Park Marriott Hotel, the one close to the National Zoo. It was EXCELLENT! I highly recommend this place. It is an interesting building.... M. C. Escher kind of interesting. To go from the lobby to the 1st floor, you take the elevator UP one flight. To get from the lobby to my room on the 5th floor, I had to take a different elevator DOWN three flights. In between was approximately 20 miles of hallways and desks and more hallways, and helpful staff who were always happy give me directions... with a smile. They would even check with me later to make sure I had found my way. Thankfully, I brought my scooter.

The PCORI experience I'll write about later, but for now, I'm on my way back home, sitting in the middle of the row on the most uncomfortable airplane. I hope no other airlines decides to copy Frontier's new seating. But my seatmates were great. The young man sitting by the window didn't seem to mind when I asked him if he could look out and tell me where we were. He taught me how to say “good morning” in Amharic. I still can't pronounce it. When the plane started to descend, I asked him to teach me how to say goodbye. I figured I might have it down by the time we landed. I got this one much quicker... “Ciao!”

Last, but not least, when I went to get on the shuttle, the driver greeted me by name. Chris had made the reservation and the driver was looking out for me. And, of course, Chris and Emma came to pick me up at the shuttle stop.

I'm home, exhausted, but happy. I got lost all over town, on the trains, and in the hotel. If I'd had a smarter phone, I probably wouldn't have needed to ask for directions.

What fun would that have been?

I have to say, Franklin was particularly hot that day. Very hot. Bronze statue in full sun. 

I have to say, Franklin was particularly hot that day. Very hot. Bronze statue in full sun. 

Mrs. Reinhart Goes To Washington

It might look like I'm working, but in reality, I haven't been able to concentrate on doing much reading and studying today. Tomorrow morning, long before any sensible person is out of bed, I'll be on my way to the airport and off to Washington D.C. 

This has been planned for awhile. While I'd like to say I had very noble reasons for applying to review funding applications for clinical studies, the trip to DC was the real incentive. I love to travel. I love seeing new places and finding my way around a new city. I enjoy meeting and talking with people from all over the place. I love to travel. Because I am leaving at such an early hour, I'll get a chance to explore a little. Maybe I'll see the White House? I love to travel.

Maybe if I say it a few more times, I'll stop being nervous. I LOVE TO TRAVEL! 

It didn't work. This trip is just a little bit different from my usual travels. For one thing, Emma won't be coming with me. I'm going all by myself. Solo. No one to pick up my shoes for me when I almost leave them behind in security. When I arrive in DC, there won't be familiar Ronald McDonald House staff to greet me. I'll have to buy my own lunch and dinner.

It's a work trip, of course, and I have to be prepared to give my presentations on Thursday and Friday. Yes, I'm nervous. Not only will I not know anyone, but this is a PROFESSIONAL meeting. People are wearing "business casual" clothing. I finally consulted a former colleague and friend to guide me in finding something that didn't look like middle-aged retired kindergarten teacher. I can do this... and hopefully, not squirm my way through the meetings. The others on the panel will be scientists, doctors, and other experts. And me. What in God's name made me think I could do something like this? 

What if my Parkinson's and dystonia kick in big time? It does when I'm nervous. What if I start walking wonky, my balance is off, and I start slurring my words? What if they think I'm drunk? Okay - do I have my "I am not drunk" card with me? Check. 

So, yes, I'm nervous. Instead of reading and preparing, I've been panicking. I've been to the store twice already getting toothpaste, tooth brush, and deoderant. The hotel experience is one I haven't had in years. I couldn't remember what I needed to bring. Almost... I almost wrote a friend to ask whether I needed to bring soap and shampoo. How many pens do I need to bring? Will I need some paper? Where are the socks I had hanging on the clothesline? What if I run out of deoderant?

My family (Chris and Emma) gently reminded me that, though neither of them had ever been to DC, they were fairly certain I could find a store there. 

I'll be fine. I've got my clothes, my notebook, my computer, my phone, all the various cords that go with phone, computer, and scooter. I have "The Last of the Dragons" by E. Nesbit, my little book of Welsh phrases, and my knitting. I'll admit, the last three are security items. Don't laugh.

I'll be fine... as long as I remember my shoes after I go through security. 

Pray for me? Let me think about it.

I'm not embarrassed by my Parkinson's. I don't want sympathy because of it. I don't generally say much about it, but when an old classmate of mine was taken aback after I told her I was retired, I was suddenly self conscious. Not wanting her to think I had retired because I didn't want to work, I told her it wasn't my choice, I had left teaching after I was diagnosed with Parkinson's disease. 

She looked at me earnestly, put her hand on my arm, and said she was sorry. I was confused at first. Sorry I was retired? Oh. That's right. I have Parkinson's disease. She asked if she could pray for me. 

It was my turn to be taken aback. Not that I have anything against prayer. There is a lot I question about religion and spiritual matters, but holding an individual in warmth, interest, and love is not something I question. Whether or not there is a God listening in and acting on their prayers is secondary.

Regardless, I have not always been comfortable with the Christian idea of prayer. When our daughter did so well in the NICU after being born at 28 weeks gestation, a colleague told me she was sure Emma was doing well because so many people were praying for her. Something in me snapped. And... the little girl who died in the NICU the day before? Did she die because not enough people prayed? I know all the standard Christian responses to this and I still struggle with it.

For now, I have my own request. If anyone wishes to pray on my behalf because I have Parkinson's disease, please do not ask God to cure me. I do not want a miraculous, magical cure. You're welcome to ask God to nudge the researchers in the right direction for a scientific cure. A miraculous, magical cure would only affect me. That's not fair. If there is a cure to be had, it should be for everyone. I'm sort of a spiritual socialist.

I stumbled around before answering my old classmate. Yes, of course she could pray for me. I just wanted her to realize I see my Parkinson's as much as a gift as anything else. There are so many people I wouldn't have met, so many things I would never have been able to do, and so much I wouldn't have learned if it I didn't have Parkinson's. Those of you who read my blog know this already. I hope she will forward a message of gratitude with her prayer.

On the other hand, my husband has become an expert in the Heimlich maneuver. I'm not sure he looks at this as a gift, so... if anyone is listening up there, I could use a little help with the whole chew, swallow, breathe thing. 

(I'd even take the magical miracle cure for this one.)

WE ALL WON TODAY!

“No union is more profound than marriage, for it embodies the highest ideals of love, fidelity, devotion, sacrifice, and family. In forming a marital union, two people become something greater than once they were. As some of the petitioners in these cases demonstrate, marriage embodies a love that may endure even past death. It would misunderstand these men and women to say they disrespect the idea of marriage. Their plea is that they do respect it, respect it so deeply that they seek to find its fulfillment for themselves. Their hope is not to be condemned to live in loneliness, excluded from one of civilization’s oldest institutions. They ask for equal dignity in the eyes of the law. The Constitution grants them that right.”

Read more: http://www.politico.com/story/2015/06/supreme-court-justices-opinions-memorable-quotes-gay-marriage-119477.html#ixzz3eEeg8QBM

California Dreaming

We knew it would be tight, but we had to go. Only about 35% of the dogs raised and trained to be service dogs are actually matched with someone who has a disability. It's complicated because the dog has to have just the right disposition, be very healthy, and want to work. So when Emma got the call saying that Lexus had been matched and would graduate from her team training, we were thrilled! Emma was, of course, invited to come and hand off Lexus to her new owner during the graduation ceremony in Oceanside, California. We had to go. 

Day one:  

Up at 3:30 am to fly out to Orange County. The flight was smooth and nice and there was a man with a service dog in the seat directly in front of us. The dog looked so much like Lexus, it surprised me when it didn't recognize us. When we arrived, we picked up our rental car and headed out to Oceanside. 

We couldn't check into our accommodations right away because school was still in session. So we went down to the beach, which was only 4 blocks from where we were staying. Had there been others at the beach, we would have immediately been recognized as tourists. (OMG! Water! OMG! Palm trees!) We took a lot of photos.  I was amazed at how cold it was. 

We stopped at the store, picking up peanut butter, bread, and jelly, before checking in with our hosts. Thank you to Kristen and Patrick Arrastia for allowing us to sleep in their lovely kindergarten room. It was magical, like sleeping in a story book. 

Day 2:  

It rained most of the night and we got up to this beautiful complete rainbow.

We had to be out of the kindy by 7:30 am. Down to the beach again, we never got tired of staring at the ocean. I was amazed by the power of the waves rolling in one after another. Though it was cold, there were a few surfers out there.  I would have been terrified. As it was, I startled and jumped out of the way when the tide came in too close to my feet! 

 

Today we had a tour of the training facility at Canine Companions for Independence. It's impressive! They can house over 90 dogs at one time and the work they do is amazing. The dogs are taught approx. 40 specialized commands and can turn lights on and off, open doors, retrieve a soda from the fridge, and press the button for the elevator. Some dogs go to individuals with disabilities, some go to facilities, and some go to families with disabled children.

After the tour we stopped at a couple of shops in town and had some ice cream.

 

 

 

Day 3 - This was it! Graduation day! We arrived at CCI at 9:30 am and were given instructions. Then we went to brunch and met the man who was matched with Lexus. Buddy and his wife, Sheri, are lovely people. Buddy's first service dog, Hilary, died last year and he misses her very much. It will take time for Lexus and Buddy to form the same kind of partnership, but I'm confident they will.

Then, a reunion with Lexus, a drive to the place where the ceremony would be, and... everything seemed to go so fast. 

 

 

Just before the ceremony started, Lexus was brought back to Buddy for a TV news interview. Afterward, she was back with us, but could see Buddy across the room. She was not terribly happy to be separated from her new friend. 

The bond they are beginning to form is obvious. It's also obvious Lexus enjoys working. People ask us how we can raise a dog for 18 months and then give it up. It was hard! I remember when it was time for Lexus to go back to Oceanside last August. We weren't able to come ourselves so another family took her. We left Lexus playing happily with Vanessa's dog and it didn't hit us until we got to the car. Emma and I both had some tears, then we went to visit our local animal shelter for a dog fix.

All that went away as soon as we saw Lexus with Buddy. Now, all I can think is how lucky she is to have found such a great friend and partner. I'm sure she'll work hard. 

 

Day 4 - We left our storybook house and family. As I stepped into the kitchen to return a few dishes and leave a card, the inside door opened a little and 2 1/2 year old Josie looked in. I said good morning. She didn't say anything, just looked and slowly closed the door again.

We were driving to Palm Springs and needed to be on the road early...so I'd have time to get lost. I got lost... sort of. I missed one turnoff and we went a slightly longer route, but we made it in, a little later than planned, but we made it.

My friend, Harold, took us to lunch at a lovely Mexican restaurant and we ate in the garden and listened to a young man playing guitar. After lunch, Harold gave us the scenic tour past several houses belonging to celebrities. Then we went back to his house and met his husband, Jeff, and chatted even more. Jeff went over our driving directions so I wouldn't get lost on our way to LA. All in all, it was a really nice visit.

Jeff's instructions were perfect and we arrived at Kelly's apartment exactly two hours after leaving Palm Springs. Kelly is one of my former kindergarten students and has been friends with Emma for years. She had her roommate, Zippy, hosted us for the next two days. We watched the movie, Mortdecai, the first night. I know it got terrible reviews, but we laughed all through it and enjoyed it thoroughly. 

Day 5 - 

A slower day. I took my scooter and explored the neighborhood while the girls watched some program on the computer. In the evening, Kelly and Zippy arranged for us to join them watching a production of Julius Ceasar at The Noise Within Theatre. 

Day 6 -

We spent the morning at The Grove, a shopping center where Zippy reported seeing more celebrities than anywhere else she'd been. I suspect any celebrities were trying hard to not look like celebrities, and since there were many people who seemed to be trying hard to look like celebrities, we may or may not have seen any. What would we have done if we had recognized someone? Nothing. We'd be tongue-tied and awkward, and our luck, we'd find it was a celebrity look alike. So why did we go? We were that close to Hollywood, it wouldn't have seemed right if we hadn't. 

Back to the airport. We drove from The Grove back to Orange County/Santa Ana/John Wayne Aiport. Maybe it was first time visitor luck, but we never ran into bad traffic the entire time we were in Los Angeles. I also found the drivers to be gracious and polite. Anytime I turned on my blinker to change lanes, someone let me in. We left in plenty of time to get lost, so of course, we didn't. And our flight was delayed. I was exhausted. I know I'll crash this week, but it was worth it. I was happy when we finally arrived in Denver and home at 10 pm. 

Emma, however, was still California dreaming.

 

 

 

Always Darkest before the Dawn

I got up growly today. Snarling at my husband, who dared to be still asleep in bed, blankets pulled up to his chin (God, he looked... happy... damn him), I lurched out to the kitchen and took my meds. How long will it take for them to take this time?

I'm retired. There is no earthly reason I have to be up by 6:30. It's way too early, but my legs decided to argue. If I didn't get up, they threatened to get out of bed without me. Hah. I'd like to see them try. Restless leg syndrome isn't for wimps. You have to be strong and not let your legs call the shots. Get up one day at 6:00 and the next thing you know, they'll have you getting up at 5 am and going on a 5 mile run before breakfast.

I managed to hold them off till I got sick of trying to hold them still, then I got up out of self defense. Fine. I'll get the animals fed, take the laundry off the clothesline, and make breakfast. Then, if the legs have moved enough and the meds have taken effect, maybe I can have a nap.

It's raining. Not a light quiet sprinkle, but a downpour trying to make up for the last drought.  I put on my boots, coat, and hat. I slipped and slid out to the chicken yard and barely managed to get the grain out without falling on my ass. The chickens refused to come out of their house. As I walked back, I saw a couple of squirrels happily devouring the expensive feed. I growled at them, but they continued eating. As for the soaking wet laundry, it could stay outside.

Back in the house, I started to heat water for tea and sat down at my computer to see the news of the day. I should know by now. Don't get your first peek at news for the day on the internet. The weird news floats to the top and I was greeted with:

"Nebraska Woman Sues All Homosexuals", "Obama plans to invade Texas, kidnap George W. Bush, and create a new kingdom of liberal darkness", "Anti-evolution Legislation Introduced in Alabama House", and "Chance of snow for Mother's Day"

It was enough to make me want to crawl back in bed and pull the covers over my head. My legs, however, were still restless and the feeling had drifted up to my arms and chest. I did a few stretches then got my cup of tea and tried to curl up on a soft chair.  Mmmm... the tea did wonders for me and I reminded myself it is always darkest before the dawn.  My craziest symptoms often come up just before the meds kick in and... yes... My muscles were starting to relax and I could breathe easier again.

The rest of me relaxed, too. I know our country is making progress, even though it often seems to take 2 steps back for every 3 steps forward. We're still making progress and, unfortunately, when progress becomes noticeable, it often comes with violent backlash from those who oppose it. I'm trying to stay positive, but it also takes work to continue taking those forward steps. We're doing what we can. We're getting more involved with city politics, which is where we can make a difference. In the coming weeks, we'll be helping to get signatures for a petition, going door to door handing out leaflets, and I will continue to carefully watch the actions of our local school board, which has become incredibly dysfunctional and disrespectful towards teachers and students. I'll also continue to speak out on behalf of my friends in the LGBTQ community, whose presence brings such beauty and richness to our world.

Okay, for now, it's time to take another deep breath, let my muscles finally relax, and... nap. If I'm to do all that work, I'm going to have to rest up. I curled up on the couch and was almost asleep when I heard my husband walk in the room. As I dozed off, I imagined him snarling at me. I had dared to go to sleep again, just as the day was getting started.

And I'm sure I looked happy.

So Many Different Ways to Be Beautiful

Reprinted from Studiofoxhoven 2

When I was young, my best friend was a little girl named Gina who was quite vocal about how she wished she was a boy. She even wadded up kleenexes and put the wad down the front of her pants because she wanted a penis so badly. I didn't think anything about it. Children usually don't. We had a great time climbing trees and hiking through the wild areas near our neighborhood.

All was fine until I joyfully came home one day and announced to my mom that I was Gina's girlfriend. I was too young to get the icy tone accompanying my mother's response of "what do you mean by that?"  I said that since Gina thought she was a boy and I knew I was a girl, I was Gina's girlfriend. At age 9, friends are friends - period. We had fun together.

We moved to Colorado soon after and I missed Gina and my old neighborhood terribly. Being shy and quiet, entering a new school mid year was torture. I hated it. I wanted to go back to my home and my friends. There was something else, too. My innocent comment had obviously made my mom very nervous. I had never been a "girly girl". I liked climbing and hiking and catching lizards.. I did not like playing with dolls and I hated Barbies. The label of Tomboy was a badge of honor.
.
By the time I was in high school, the dress code had changed and, for the first time, I could wear jeans to school. This can't have helped Mom's anxiety about my lack of femininity. At a time when it was stylish to wear old overalls and t-shirts, I was scolded for not wearing nice clothes, not curling my hair properly, and teased for being small breasted.

In my mom's defense, in the 1970s homosexuality was still listed as a mental illness by the American Psychiatric Association. It was also a crime. Scary stuff. She needn't have worried. I am straight. It's just who I am. I could no more make myself lesbian than my lesbian friends could make themselves be straight.

Perhaps it's no wonder I struggled with what it meant to be feminine. I know I wasn't alone, not by a long shot. Struggling with identity and figuring out how to fit in and still be a unique individual is the definition of high school. With the feminist movement of the 1960's and 70's breaking down barriers for women, we were all dazzled with the possibilities ahead of us. It was exciting and overwhelming for us, but must have been puzzling and threatening to some of our parents.

There are still times I hear the voice in my head, letting me know I'm not attractive and not feminine enough, but I can deal with it now. I'm lucky to be married to a wonderful man who doesn't insist on me being a girly girl. In fact, generally when I've felt the most insecure about my identity has been when I have to deal with professional women.

The struggle is okay. It's made me into the weird person I am and hopefully more understanding of others who struggle. I know I've had it easy compared to friends I have in the LGBT community. There is no way I could ever claim to understand what they have gone through. I often wondered if Gina's parents tried to squash her desire to be a boy. Did she get into trouble because of what I said? Was she teased at school? Did anyone try to make her someone she wasn't? Wherever she is and whoever she has become, I hope she knows how much I valued our friendship. I hope she's happy and doing well.

And coming full circle, I have always had close friends who are part of the LGBT community. Now, as I dance with a lovely, inclusive gay square dance club, I realize more and more how comfortable I am with this community. It's a place where everyone is accepted. I delight in seeing one young man occasionally come to a party dance wearing a dress and heels. Actually, I'm totally impressed seeing anyone square dance in heels. And I'm delighted I don't have to.

It's a place where I never hear the voices in my head tell me I'm not attractive and not feminine enough. It's a place where I've learned what my new friends learned long ago: there are so many different ways to be beautiful. Male and female, masculine and feminine are not opposites. They are splotches of many colors on an artist's paint filled palette and often run together, making even more beautiful colors.

I was not ladylike, nor was I manly. I was something else altogether. There were so many different ways to be beautiful.
— ~Michael Cunningham - A Home at the End of the World