Hello, Chicago! Hello, Dolly!

“Money is like manure.

It's not worth anything until you spread it around to help young things grow.”

Ephraim Levi

From the beginning, when we first learned we would be coming out to Shriner's Hospital in Chicago for our daughter's medical care, we began to dream about going to see live theater in this amazing city. I had visions of walking downtown and seeing the theater name in lights and watching grand shows such as “Hello, Dolly!” The closest we got was looking up showtimes on the internet. After pricing them, we settled for a couple of homemade brownies and a dvd borrowed from the front office.

We're at Ronald McDonald House again. It feels like home. We once were able to stay at someone's time share at a resort hotel. I've got to tell you, Ronald McDonald House has spoiled us. The 5 star resort hotel was nothing in comparison. Is there any other place where you can come downstairs to the kitchen at 10:00 pm in your pj's and have a late snack? Or find beautiful little rooms hidden away, filled with books and cozy armchairs? This house has a hidden staircase leading to a turret playroom. I am certain no hotel could be even remotely as comfortable as Ronnie's house. We've been here a lot.

Last night, our house manager, David, asked if there was something we'd like to do before we leave. The theater shows came to my mind immediately and I looked up showtimes. Amazingly, “Hello, Dolly!” was being performed at the Drury Lane Theatre, not too far away. I thought it was a long shot. We would surely be told it was too expensive, but nothing ventured, nothing gained. I wrote down the information and left it for David in the office.

The next morning, Lisa Mitchell, our house director, came and told us we could pick up tickets at the box office for the 1:30 show. WOW! It was like magic. She explained to us they had been given a grant from the Barnett Family Foundation just for the purpose of allowing families to have things to do while they are away from home. What an amazing gift.

It was an amazing afternoon! Lit by huge chandeliers, the Drury Lane Theatre is elegant and beautiful. Though most people know the characters and story of “Hello, Dolly!” from the movie with Barbara Streisand, we know them from Thornton Wilder's play, “The Matchmaker”, which was performed by the Denver Waldorf High School seniors last spring. I would say the actors in this production measured up quite well.

Karen Ziemba was strong and confident as Dolly Levi and David Lively brought to life the tough-as-nails Horace Vandergelder. My favorite characters are Cornelius Hackl and Barnaby Tucker, played by Jeff Diebold and Lee Slobotkin. I didn't think anyone could play these roles better than Collin Montrose and Miles Justice. I wouldn't say Jeff and Lee were better, but they were as good. I especially loved the part when Barnaby starts to shake as he learns how to dance.

We thoroughly enjoyed seeing the musical version of this play. The singing and dancing added to the pure joy and fun to the story. It is a play with a big heart and the performance manifested this beautifully. It was an afternoon we'll always remember.

Thank you to the El Jebel Shriners in Denver who sponsored our daughter's medical care. Thank you to everyone at Shriner's Hospital in Chicago for all your wonderful work. Thank you to Ronald McDonald House for welcoming us, and thank you to the Barnett Family Foundation for the gift of music, dance, and fun as our daughter recovers from surgery once again. Everyone of you have made Ephraim Levi's words come to life: “Money is like manure. It's not worth anything until you spread it around to help young things grow.”

Because of you, a lot of young things are growing very well, indeed.

A Room Filled with Love

The room was crowded with guests at the retirement party. In addition to her coworkers from the University, her family and friends showed up as well, some of them flying in from out of town just to come to the celebration. They all came to honor this remarkable woman. They also came because Bellverie really knows how to party.

Someone asked Bellverie Ross, Executive Assistant to the Dean of Students, Office of Student Affairs at the University of Colorado at Denver, what she was going to do now that she's retired. After all, she's worked for 36 years. The diminutive 71-year-old replied with a laugh, “I'm going back to work in a couple of months!” It's true, too. She'll return on a very limited basis to head the Senior Auditing program and a few other things.

I first met Bellverie two years ago when I was contemplating taking a college class or two. We spoke on the phone and in person. When she found out I had Parkinson's, she encouraged... no, she insisted I take classes now while I am still able to get around. One of her daughters has Multiple Sclerosis. She knows well how quickly one's abilities can change with a progressive disorder.

Since then, we've spoken together many times, Bellverie's warmth always filling the room. She told me she felt as though we had known each other all our lives, and she would always greet me with a hug. When she emailed me and asked me to come to her party, I was touched.

If I felt a little awkward entering the room and not knowing anyone except the guest of honor, it didn't last long. Bellverie greeted me with a hug and immediately took my hand and led me over to a seat next to her daughter. I saw this repeated over and over with other guests being led here and there to meet someone. I don't think she sat down to eat at all, she was far too busy.

When her colleagues spoke about her, it became obvious her warmth and love had affected many, many people. So had her indomitable energy. “Bellverie knows everyone and knows everything about everyone,” one of colleagues reported, “and most of us in this room are worried about what she'll write about us in her book.” He leaned down and said sweetly, “But you don't have any dirt on me, do you.” Bellverie sweetly smiled back and said, “Oh yes, I do!”

Another colleague related the story of her first day of work. She said Bellverie took her aside and told her, “Just listen to me and you'll do okay.” The woman said she did listen. “Everyone listens to Bellverie. You can't not listen.”

One of her friends led us all in singing, “Happy Retirement to you”, which Bellverie conducted enthusiastically. Another friend sang her tribute, beautifully, and brought us all to tears.

I sat among her friends at the table, women who had known Bellverie for many years. Some had worked along side her during the civil rights movement. One lovely woman, Lucy Walker, who had years before started one of the first drama programs for young people of color, described their friendship, “We are agape sisters. Do you know what that is? Unconditional love.”

I believe it. There was so much love and pure joy in that room, I am certain it overflowed into the rest of the building, eventually slipping through windows and doors like a fine mist and making the  passersby smile.

Later on, our petite guest of honor took the microphone to thank everyone for coming. “Always follow your dreams,” she told us. “Never give up on your dreams.”

Do you hear that? I hope so. Don't forget. Listen to Bellverie and you'll do okay.

To read more about Bellverie's history with the University of Colorado at Denver, read:

A Journey through History with Bellverie Ross

To learn more about the Senior Auditing Program at UCD, go here:

Senior Citizens Program

New Health Plan

It's been 6 months since I decided to change the way I eat. At the time, my body was in total agreement with me. About a month ago, that changed.

The Left Brain started questioning the expense of going to all natural foods. The Hypothalamus complained it wasn't getting the rewards it expected from the new diet. The Occipital Lobe had seen the large chocolate bar in the refrigerator. The Broca's Area said, “what the hell” and convinced the Amygdala and the Motor Cortex into picking up the chocolate.

This was just the beginning. The Hypothalamus wasn't content with just one chocolate bar. It insisted on chocolate chips and the occasional chocolate ice cream. The Nucleus Accumbens kept quietly insisting they deserved these treats. After all, they had worked hard for them. Soon my brain was ignoring the needs of the rest of my body and demanding more for itself.

Fortunately, there was still the Frontal Lobe to bring some intelligence into the discussion. It reminded them of the decision which had been made for the good of the whole body. Spending now would save money in the long run. It was okay for the brain to have to sacrifice some pleasures for the sake of health.   After all, the brain cannot survive without the body.

The Corpus Callosum announced there were serious issues in communication.

Systems began to break down. The Autonomic Nervous System began relaying messages to all parts of the body, spreading fear that the Frontal Lobe was trying to push a health plan which was too expensive and would take away all the good things in life. The rest of the body was confused. They were supposed to believe and trust in their Frontal Lobe, weren't they?

The Left Leg sided with the Nucleus Accumbens. The surge in dopamine after a sugar binge helped to make sure it could walk straight. The Right Leg accused the left of giving in to addiction. Arguments started between various groups of Organs and Muscles. There were debates about whether or not the plan was actually healthy and worth the cost. After all, each part should be able to pull themselves up by their own synapses – or tendons or blood vessels or other thingies, right?

I'm not sure what would have happened if I hadn't finally had a Gut Reaction and decided enough was enough. Worst case scenario, parts of the brain may have insisted on a governing body shutdown.

Thankfully, it didn't happen. I took charge and let the rest of the factions know who's boss.

Quiet Heroes

“People always ask me where I'm from,” he announced. “I tell them I'm from outer Mongolia, but actually I'm from Minnesota.”

Chris and I were out for a walk one day. Okay, Chris was walking and I was on my scooter. It was the scooter that made the man pull up next to us on his bicycle and chat for awhile. He had two brothers, he told us, both with Parkinson's disease, and they were living with him. He was wondering if either of his brothers might be able to use a scooter.

When he found out I also had Parkinson's, he began asking me all sorts of questions and we compared medications, dosages, symptoms, side effects, and more. We learned we have the same neurologist. He was dealing with much more than I have as both of his brothers were at the advanced stage of the disease. They had feeding tubes. Sometimes they had hallucinations. I got the feeling his daily bicycle ride was how he kept sane.

Over the next weeks, we saw him now and then. He always stopped to chat. We never even exchanged names. I thought about him a lot. I'm not sure how old he is, but my guess would be around 70. Being the sole caregiver to two people with advanced Parkinson's couldn't be easy, even if they were his brothers. 

As we chatted, we learned a little more about him. His accent was intriguing, which is when he told us he was from Minnesota. “We grew up on a farm. Our family is Norwegian. That's why I talk like this.”  We also learned that one of his brothers had been married; he and his other brother were bachelors.

On the way home, Chris looked thoughtful. Finally, he said, “They really exist. I thought it was just a myth.”

“What?”

“Norwegian bachelor farmers. I thought they were just a Garrison Keillor myth, but they really do exist. We've met a REAL Norwegian bachelor farmer!”

(Cue the Powdermilk Biscuit song)

We didn't see him for awhile and wondered if he was okay. Then, a couple of days ago, he was out riding his bike again. He told us he'd had back surgery and then one of his brothers had passed away. He's still taking care of his other brother. The surgery was obviously successful. He didn't take much time to visit before he was off riding again.

It's always good to see our Norwegian bachelor farmer. He's one of the many quiet caregiver heroes who makes such a difference in the lives of people with Parkinson's disease.  It's a privilege to know him.

Too old to be young and too young to be old

One lovely spring day in the kindergarten, many years ago, a young boy was showing me how he could do all sorts of tricks on the swings. After each trick, he would ask, “Can you do this, Mrs. Reinhart?” I finally told him no, I was too old. His reply? “It's okay! You can do it when you're younger.” It was as simple as that.

If only age would continue to be so simple.

The other night, my husband and I attended a lovely gathering in support of the Parkinson's Association of the Rockies. At one point in the evening, a lovely young woman, Katie Strittmatter,  spoke about the new group for people with Young Onset Parkinson's disease. She described the need to have something different for these younger folks with Parkinson's as their challenges are much different than those who are diagnosed later in life.

I found myself wondering: what are the rules here? Some official websites list age 50 as the cut-off. If you are diagnosed before age 50, you are Young Onset PD, after 50, it's just plain old PD. Another website listed the age cut-off at 40.  Now it gets even more complicated.

I was diagnosed at age 49.  Am I young or old? Young Onset refers, of course, to when our symptoms began and when we were diagnosed. Do we keep that designation even when we are getting too old to be considered young?

There are different challenges, depending on whether you are old or young. My father was diagnosed in his 80's. I had to step in and insist he be treated for his Parkinson's. His doctor seemed to think my dad was about to die anyway, so why worry? I informed his doc that my father's family tends to live long lives.  My grandmother lived to be 97 and her brother lived to be 101. My dad insists he has maybe 20 good years left.  He'll be 89 next month.

For the Young Onset crowd, it is challenging to deal with PD symptoms while trying to manage a job and caring for a family. Being on the medications for more years adds up to a greater risk of having to put up with the more annoying, or even disturbing, effects of these drugs. Young folk need to stay as active as possible because their lives are still very demanding.

I'm sort of in the middle now. My kids are grown, but I have very young grandchildren and my elderly parents to look after from time to time. I'm retired, but I want to stay as active as I possibly can as long as I can. I have things to do and places to go. Katie has invited me to come to the Young Onset PD support group. They don't just sit around and talk about their challenges, they do stuff. They go bowling and do other cool things. I figure I'll try it out while I'm still young enough to join in.

After all, I only have maybe 40 good years left.

You can find information about support groups, exercise programs, and much more at:

The Parkinson Association of the Rockies

Parkinson's Central - New Smart Phone App is an Electronic Advocate

Recently, I had to get a new cell phone as my phone company changed over from one something or other to a different something or other. The old phone wasn't smart enough for the new system. So now I have a newer old version of an Android phone. It's a little smarter.

This is good because there is a new Parkinson's Central smart phone app offered FREE by the National Parkinson's Foundation.  As soon as the LG P500 was up and working, I downloaded it and decided to check it out.

There is a lot on this app, from general information about Parkinson's disease and how it is diagnosed to treatment options, hints for making your doctor's visit more productive, news about current research, and a whole section about living well with PD.  There is a surprising amount of information there.  

Now, I will admit right away, I am not big on reading a lot of information on my cell phone. I'm over 50 and my eyes start to rebel.  If I am going to look for this type of information, I will look it up on the full screen computer.  Even there my eyes will tire quickly. However, I know for many people, cell phone apps are THE WAY to get their information. I highly recommend this app for those people with Parkinson's disease who use smart phones.

I didn't think I'd be using it, but then I saw...

There is a section on other health issues and PD (under Doctor Visits), specifically about dental visits. I didn't know levadopa and epinephrine together could cause an "exaggerated effect on blood pressure and heart rate".  Hmm, that could explain why I had such a violent reaction when the local anesthetic was accidentally injected into a vein in my mouth.  

I will cruise through more of the information on the app, even if it is on the phone. I suspect I'll find other gems of knowledge hidden in each section.  The nice part of having it on my phone is I can show it to my dentist or other health professional. It has more weight when it's coming from the National Parkinson's Foundation.

As patients, we have to learn how to stand up for ourselves. This can be challenging, especially when we are standing up to doctors and other health professionals. Our own doctors may understand us, but if other medical issues come up, it's much harder to explain. I know.  I tried this when I was in the hospital for a hysterectomy. No matter how much I tried to tell the nurse-in-charge that my sleep attack was not anything to worry about (I was in bed, not driving) and was, in fact, a side effect of my medication, she just pursed her lips and glared at me.  When my husband came, the nurse turned to him and said, "We had an incident this morning." I felt like a naughty child.

Now I have a helper right in my hand. The Parkinson's Central app is an electronic advocate.  Now they have to believe me.  See? It says so right on my phone.

So there.

Click on the photo to go to the National Parkinson's Foundation page about Parkinson's Central.

Eating well - finally

There wasn't much I could eat for dinner, so I had a spoonful of almond butter, a couple of carrots from our garden, half an avocado, and some salad without dressing. I glared at my family, graciously, as they ate their spaghetti, and lettuce dripping with raspberry vinaigrette.  I was coping quite well until my husband brought out the Moose Tracks ice cream.

It wasn't fair.

Three months ago I decided to watch my diet. What I saw was a lot of carbohydrates and sugary stuff. There was a decent amount of good food, too, but the carbs and sweets side of the scale was a wee bit out of balance.  And so was I.  I hadn't been feeling too good.

It seems eating sugar, lots of sugar, will release dopamine. Cool. Instead of upping my meds, I could just have some fudge or ice cream or a Snickers bar.  It worked quite well. My doctor hasn't insisted on an increase in my medication for the last several years. 

When others have suggested special diets to me, I only half listened. Like all helpful remedies and cure-alls, I know what works for one person won't work for everyone.  If standing on one leg for an hour a day makes you feel better, go for it.  I'll pass.  I've been told to drink wheat grass juice, go vegetarian, stay away from gluten and carbs, don't forget aerobic exercising, don't eat protein after 3 pm, and have I ever heard of the Paleo diet? 

Outside I may be smiling and nodding, but inside I'm saying, “I don't HEAR you.”

Until three months ago. Only, it wasn't anyone else telling me I had to change, it was my own body. Every time I said, “I don't hear you,” I would be knocked on the side of my head.  It was getting tiring and my head hurt.  Eventually, I was too tired to do much of anything. My blood pressure had gone up, my tummy ached, and my sinuses burned all the time.  The docs couldn't find anything really wrong, so they blamed my Parkinson's.  I get it. I do the same thing.

I was miserable enough to try anything.  Throwing all my diet and health suggestions into the air, I came up with the following:

No sugar

No gluten

No carbohydrates

No dairy

I would eat meat, lots of vegetables, some fruit, almonds, and walnuts. Actually, the choice was made consciously.  My symptoms started to sound more and more like systemic yeast issues.  It wouldn't hurt to try the yeast diet. I decided to try it for a few weeks then gradually add other foods back in.

Within 48 hrs, I felt good. The symptoms went away, I had energy, and my blood pressure was down to my normal.  I wasn't hungry and I didn't crave sugar.  COOL!  I can do this!

Then, of course, my dear husband brought home the Moose Tracks ice cream. 

I was not led into temptation, but held my ground and ate a few almonds.  It's been three months now and I still feel good.  I've lost 15 pounds, too.  I'm starting to add in a few foods and have, only on occasion, splurged with a small bowl of ice cream.  Granted, there was the day I ate a full bag of chocolate chips. Life can be stressful and chocolate helps.  I don't make it a habit.

This has been a good wake up call for me and I know I have to pay more attention to having a healthy diet. My body has shown me exactly how it will react when it is off balance. I've gotta listen to what it's telling me.

I'm not going to try and convince people with Parkinson's to change their diet. It's not a cure-all.  I still have Parkinson's.  In fact, some of my symptoms actually have gotten worse since I cut out all the sugar.  My body is missing the extra dopamine.

It's okay, though.  I'm feeling good.  If my PD symptoms get much worse, I suppose I could increase my medications.  Until then, I'm okay. 

After all, how normal do I have to be?

TravelScooting: the first adventure

July 18, 2013

It was the day.  After some busy weeks, I took a personal/mental health day and rode my new TravelScoot to the bus stop and took the bus downtown.  I planned on spending the entire day shopping, exploring, and generally having fun riding my new scooter.

A few weeks before, I had taken our daughter to a large shopping mall to look for a dress.  As this was in my pre-TravelScoot days, I was walking.  I'm afraid I didn't last long before informing our daughter of her choices:  either we go home or she had to give me a piggy back ride.  We went home.

This trip would be different.  I had a TravelScoot.  I had dreamed of owning one of these incredible machines.  It's like a sports car. Invented in Germany, it's the Porsche of mobility scooters.  It's built for durability, ease of use, and speed.  Okay, I added the last one.  I'm not sure speed was one of the goals; I just happen to enjoy it. 

There are a few things one must know about these scooters.  They're not for everyone.  You have to be able to walk somewhat and balance.  The simplicity of this machine appealed to me.   To go backwards, you have to push with your feet.  It has hand brakes.  If you don't remember to apply the brakes, you will coast.  To me, this means fewer things to go wrong.  This is one scooter where reading the instructions completely and following them religiously is essential. It's not difficult, but important.  Thank you to Tony at TravelScoot USA for all your help!

The first test was riding the bus.  With most scooters, trying to park in the space allowed is a little like trying to parallel park an SUV on a street crowded with other vehicles and pedestrians.  Everyone is waiting for you and watching you as you inch forward and get stuck in your attempt to hurry.  In comparison, the TravelScoot was like parking a child's tricycle in a large space.  I was able to put the bus seat up by myself, maneuver into position using my feet to help, and was ready before the driver had the lift back in place and the door closed.

Getting out at the 16th Street Mall, I had a wonderful sense of freedom!  I could go anywhere and do anything I wanted to do!  I zipped up and down the sidewalks.  Getting there early enough, there weren't many people about the mall, so I sailed around town.  I had tea, got a haircut, and went to a few stores.  The TravelScoot was able to maneuver through large stores as well as tiny gift shops.  Some of the older shops have a step at the front door. No problem!  It was easy to put my feet down and lift the front wheel up the step, push a little forward, and repeat for the back wheels. No way could I have done it with a heavier scooter.

After zipping around town, I went back to the bus stop to wait for the bus. It was getting very hot by that time and sitting in one place was not pleasant.  It took seconds for me to decide to try taking the TravelScoot home without the bus!  Turning aside, I found the pedestrian bridge over the highway.  Halfway over the bridge, I had the incredible urge to take off my hat, swing it around, and give a loud WHOOP for joy!  I was seeing all sorts of new places in town and having a wonderful time!

The entire journey, from downtown to our house in Wheat Ridge, would have been about 4 1/2 miles.  I went almost 3 miles of this on the TravelScoot, going through the shopping discricts of LoDo (lower downtown), LoHi (Lower Highlands), and Highlands before getting back on the bus for the last leg of my journey.  Tired, but happy, I came back home and rested for awhile.  I don't think I stopped smiling for hours.

Owning a TravelScoot would have remained a dream, but for the kindness and generosity of a dear cousin from Europe.  He decided it would be a good way for me to be more independent.  How does one repay a gift like this?  It's not possible.  I can only be grateful and try to show kindness and generosity to others whenever and however I am able. 

And have many more adventures! 

www.travelscoot.com