Managing our PD Treatments

The challenge of managing Parkinson's disease Terri Reinhart 3/23/14

 

I believe one of the biggest challenges we face with Parkinson's is the management of our therapies. The medical world tends to rely heavily on prescription drugs and surgical procedures such as Deep Brain Stimulation (DBS) to help us control our symptoms.

I do not feel qualified to write about DBS surgery as I will not consider this treatment. This was a decision made after much thought, research, and discussions with family and friends. I am sure others will speak on this topic.

While I am incredibly grateful for medications which make it possible for me to continue walking and functioning as normally as possible, they also create other issues. Drugs do not have side effects, they have effects, and we need to pay attention to all the effects of the drugs we are taking. In Parkinson's disease, this can be very challenging as so often we are taking 6 or 7 different drugs in our attempt to manage our health. Questions need to be asked: Are we being prescribed another drug because of our Parkinson's or is it given to us to help us cope with the effects of another drug? Are all these drugs necessary? Are there other ways to treat the symptoms with exercise, diet, or lifestyle changes?

It is often said, it takes a cocktail of drugs to treat Parkinson's. This cocktail can include a dopamine agonist, Selegiline (as a neuroprotective), Comtan (makes Sinemet more effective), Provigil (prevent daytime sleepiness), a drug to help sleep at night, and an anti-anxiety drug as well as Sinemet. It can be almost miraculous in helping people with Parkinson's to live a normal life or it can be a time bomb resulting in physical and behavioral effects such as obsessive/compulsive disorder (compulsive gambling, eating, shopping, sex), disinhibition, hypersexuality, delusional behavior, increased heart rate, and weight gain, among other things.

The most frightening part of this is how the effects can creep up slowly over time to the point where we don't realize the medications are causing these effects until they have damaged our relationships with friends, family, and coworkers, sometimes irrevocably.

So what can we do?

I would like to see a team approach to Parkinson's disease with neurologists, physical therapists, nutritionists, and psychologists working together with patients and their partners or advocate of their choice. Drugs need to be prescribed and monitored very carefully and alternatives to drugs should be considered before simply automatically prescribing one more medication. Experts agree that exercise can improve symptoms of Parkinson's disease and may even delay its progression. I would like to see more studies on the effect of diet on Parkinson's and also studies on the use of Cannabis with Parkinson's.

More than anything, I would like to see a change in attitude towards the management of Parkinson's and other chronic disorders. Can we find a balance between medication and lifestyle changes? Can we be less dependent on pharmaceutical drugs to make us “normal”?

How normal do I have to be, anyway?

 

The PD We Don't See

“Words are like nets - we hope they’ll cover what we mean, but we know they can’t possibly hold that much joy, or grief, or wonder.”
— Jodi Picoult

Tonight my dear husband, what's-his-name, made me sit down and watch a video about the non-motor symptoms of Parkinson's disease. I was going to watch it earlier this afternoon, but I suddenly had to lie down and take a nap. When I got up, I had more energy and decided to get lots of chores and errands done. This included a trip to the thrift shop where I picked up an old Victor Victrola cabinet on impulse. I have no idea where I will put it in our house, but it was too cool to pass up. When I got home, our son (John? Tom? Dave?... oh yeah, PATRICK) was there because it's Saturday and he won't pass up the chance to have a hot meal each week. He and his father helped haul the cabinet into the house.

Chris then asked what I was going to do with the chicken I had gotten out for dinner. “Cook it,” was my reply. Beyond that, I had no idea. Planning ahead isn't my forte. Eventually, dinner was made (curried chicken), Patrick left, Emma was working on her homework, and I sat down to learn about just how wonky I really am.

Here is the link to the video:

The PD You Don't See

It was humbling to watch this and recognize my own challenges with word retrieval, sleep, temperature regulation, too much saliva when I'm trying to talk, among other things. The doctor recommends we do all our important stuff in the mornings when we are functioning at our best, which is, of course, why I signed up for a 400/500 level college class that goes from 5:30 to 8:30 pm. Let's face it, by 5:00 my brain is saying “Thhhhhat's all ffffolks” and turning down the sheets, letting me go out into the cold without it.

Oddly enough, I do most of my writing in the evening. Hmm.

However discouraging these challenges can be, there is an upside to some of these strange symptoms:

Disordered autonomic nervous system – Hot flashes aren't just for women, men with PD get them, too. Saves on heating bills.

Word retrieval – I'm getting better at swearing. Those words I can always retrieve.

Impulsivity – Used sparingly and carefully, this can add a little fun into our lives. Besides, we really NEEDED an old Victrola cabinet in our house.

Vision problems – Hey, the world is just a little softer place now, that's all. And you'll always look good to me.

I'm not trying to brush off this stuff. It's important we parkies pay attentions to all this and make sure we eat right, exercise, get plenty of sleep, don't overdo it, get enough cognitive stimulation, and make sure we get out into the world. There's also some stuff I don't like to think about at all, like being more susceptible to things like strokes and melanoma. Pay attention, but don't dwell on that stuff. Make things fun.

Which is why I'm sticking to my college class, even when my brain has clocked out for the day.

 

The most wasted of all days is one without laughter.
— E. E. Cummings
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Big Bird and The Count

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 I was Big Bird. He was The Count.

Our first child came to us, not in the usual way, but as a foster son. He was nine years old, tiny, with too thin arms and legs, and almost white skin. He had a family living in the mountains and the small community didn't have a school program to accommodate a student with cerebral palsy who used a wheelchair. For whatever reason, his family decided the best solution would be to have Jimmy in foster care during the school week.

I was working at the school in Denver he was to attend. When I learned of a child who needed a home, I jumped at the opportunity. I was 22, newly married, and couldn't wait to be a mom. Chris agreed, maybe because we were newly married. He was a great Papa from the beginning.

We were naïve. We had about as much training for taking care of a disabled child as the average parent of a disabled child, which is to say, none. A short visit from his mother to tell us of Jimmy's likes and dislikes and a few other important details, and we became instant parents to a nine year old boy. It was up to Jimmy to teach us now.

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It was a full year. Chris became proficient at wheelchair repair and I created simple adaptive tools and learned how to carry a nine year old on my hip. We became aficionados of Sesame Street and Jimmy solved the problem of what to call us. Mom and Dad wouldn't do. Those titles were already taken. So, I was christened Big Bird and he was The Count. I can't remember the name he had for Chris. Bert, maybe?

On one occasion, we got lost in the old Children's Hospital with Jimmy in his wheelchair and couldn't find an elevator. Like a scene from The Twilight Zone, every way we went, we ran into long stairways. I'm almost positive we ended up bumping down at least two of them. Fortunately, Jimmy only weighed about 40 lbs at the time.

He had two surgeries that year and I sat with him so many times, trying to take his mind off the pain by letting him “punch” me in the face. His fist would connect with my chin and my chin would move to one side, making me talk funny. It was a fun game for both of us and it made him laugh.

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He left us after a year, just three weeks before John was born. I visited him at school a number of times and when the SEMBCS Sullivan school closed, I lost track of where he had gone. Some years later, I was able to visit again when our neighbor had Jimmy in her summer class in Jefferson County. A few more years went by and his mother brought him to see us when he was 21. He was graduating from high school and would be moving to a group home in Loveland.

Then I really lost track of him. His parents had divorced and I didn't have their contact information. Several times, I tried to find him, but without luck.

Last week, a friend posted a note on Facebook about her foster daughter. It made me think of Jimmy again. On impulse, I went to Google and typed in his name, remembering this time to put Jr. after his name. Right away I found him. The first entry listed his name and birthdate. There could be no mistake. My heart started to beat a little faster as I clicked on the entry.

What I found was his obituary. Jimmy had died just three years after I last saw him.

I was in shock. I didn't sleep much that night and got up at 5 am to look through our photographs. I hope my parenting skills are never judged by how organized my family photos are.

How do you say goodbye to someone who left 18 years ago? How do you grieve?

At the same time I was cruising through Facebook and Google, I had also found a lovely wool sweater listed for sale or trade on a Waldorf site. It was a lovely, handmade sweater, just right for a little girl. I wrote and asked the seller to look at my website to see if there was something I could make for her in trade. Ten minutes after I found Jimmy, she wrote back asking if I could make a wool picture. It wasn't for her, she explained. It would be put in a shop and sold to raise money for a camp for disabled children.

I am working on it now. It will be a gift in memory of The Count, from Big Bird.

 

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Christmas Pudding - A Holiday Adventure

Cornelius, let's arrange a signal for you to give me.

If it's really an adventure, give me a signal. Say a word.

Say, like 'Pudding'.

All right, Barnaby. For adventure, 'Pudding'.”

(from the Matchmaker by Thornton Wilder)

 

“So, what are you making?”

I was caught by surprise and didn't even look around. I didn't have to. It had been some time since Mo, aka Marshmallow the Opinion Fairy, had come to visit, but I would have known her voice anywhere, anytime. I wasn't going to answer, but she had startled me and I'd almost dropped the pot of rice.

“Horchata. Don't talk for a minute, okay?!”

I heard a small hrrumph sort of sound and miraculously, it was quiet. I made Mo sit while I buzzed the rice mixture up in the blender then poured it through the sieve. Only when it was done, did I turn around and greet my old friend.

Mo: Old friend? Come on, I'm not so old.

Me: Don't get huffy, you know what I mean.

Mo: So, what's up with the horchata? It's not your usual Christmas treat.

Me: I know, but it sounded really good this year and I wanted to try making it.

Mo: Meaning, you've never made it before? What time is everyone coming over?

Me: Not till 4. You're welcome to stay.

It was nice to see her again, even though I knew she'd be challenging me at every turn. Already she was questioning my horchata. Really.

Mo: Thank you. I think I will stay. What else is for dinner? It smells good.

Me: Vegetable soup, chili, salad, squash and apples, carrots and green beans.

Mo: Sounds awfully healthy.

Me: Well, there's pumpkin pie, too. I made it with coconut milk and gluten free cookie crumbs in the crust.

Mo: What about your truffles? You always make truffles for Christmas.

Me: Not this year.

Mo: What? Why?

Me: We've been busy. Emma and I have been to Chicago twice in the last five weeks, we had lots of parties to attend, and then everyone got stomach flu. Besides, I'm trying to keep to a healthy diet.

Mo: And making your family and friends suffer along with you.

Me: I doubt they'd want truffles right now. Anyway, I'm kind of on my own here. Everyone else is still recouperating. Got to keep it simple.

Mo: Which means making horchata?

Me: I want something special and a nice cup of hot, spicy horchata sounds really good.

Mo: Hot? I thought it was served over ice.

Me: I know. All the recipes I've found say to serve it cold, but I've only had it hot. It can't be too difficult, can it? All I have to do is heat it up. I'm going to put it in the crock pot and keep it warm.

Now, if you wouldn't mind stirring the soup, I'll pour this into the crock pot, then start getting the dishes out.

We worked together for awhile. I was grateful for the help and the company. To be fair, my family had helped with a lot of the preparation earlier in the day, cutting up vegetables and such, but for the last hour or so, I had been working alone. Now, with Mo's help, everything was coming together. She even dusted the living room furniture.

After another hour had passed, we decided to give the horchata a taste test. I lifted the lid of the crock pot and dipped the ladle into the creamy hot mixture. The ladle came up out of the depths with a “gloooop” sound and what was inside looked like congealed oatmeal. I almost cried.

Mo: Uh, oh. What happened?

Me: I don't know, but I certainly can't serve this up to anyone.

Mo: Which is too bad, considering you've got about 3 gallons of it.

Me: There's got to be something we can do. Any inspirations?

Mo: Sorry. Wrong fairy. The Inspiration Fairy is my 3rd cousin. If you want my opinion...

Me: I'll ask for it. Until then, unless you have something nice to say or can work a miracle, don't.. say... anything.

Mo: !

No, she didn't start swearing. Something started to escape, but she clapped her hand over her mouth just in time. I was pleased. I still have an effective teacher look.

A few minutes later, she crept quietly up and tapped my arm. The next thing I knew, she had flown through the air backwards and had landed on top of the dog. I turned my teacher look on the dog and Mo escaped with only an affectionate lick. I helped her up.

Mo: What did you do that for? I didn't even say anything.

Me: I'm sorry, Mo. My meds are wearing off. It's not safe to surprise me right now. I never know what my arms will do when that happens.

Mo: Okay, okay. Give me a towel. Is it okay if I suggest something?

I handed her a washcloth and nodded. It was the least I could do.

Mo: Make rice pudding. It's congealing anyway, and it smells really good.

Me: Brilliant.

So, together we looked up a recipe for baked rice pudding. My mixture was congealed to the point where it wouldn't pour into the baking dish. I added a little bit of almond milk and a couple of beaten eggs. This was going to work!

We were ready. Dinner was done, the house was clean, the buffet table was set up, and the pudding was in the oven. Time to rest a little. I poured some Bailey's into a thimble sized cup for Mo and we sat back and chatted for awhile. When everyone came, I turned to introduce Mo, but she had vanished. Maybe she was afraid of my grandchildren.

Mo: I am NOT afraid of your grandchildren, I'm just not feeling very social right now.

Her voice had come from the direction of the Christmas tree. I looked over, but couldn't see where she was hiding. Once everyone arrived and was served, I put some dinner out for Mo on the fork of one of the branches. We had a wonderful evening. The little ones played and opened presents, and the rest of us talked together.

All too soon it was time for our evening to end. We said Merry Christmas and hugged and watched everyone as they went out into the cold night. When the door was locked and my family had drifted off to their various corners of the house, Mo came out from the tree.

Mo: How was the pudding?

Me: Pudding?

Mo: You know, the stuff you put in the oven to bake?

Me: OHMYGODIFORGOTALLABOUTIT!

After startling, Mo began to laugh and laugh. I went in, turned off the oven and opened the door, fully expecting to find a rice loaf, a rice brick, or just simply rice hardened onto the baking dish. I took it out and did what the recipe told me to do. I checked for doneness with a knife. For some reason, Mo collapsed in giggles again. To my surprise, the knife didn't bounce off, but it didn't come out clean, either. I dipped a spoon in the pudding and it came out with a glooop noise and the stuff inside the spoon was the consistency of congealed cream of wheat.

We were making progress.

Not deterred, I spooned some into dishes for Mo and me. Then I added a little Bailey's. I think we just invented something new. It's not bad.

Just don't ask me how to make it.

 

Best Health Blogs of 2013

You get to vote. Of course, I would love it if you would vote for me, but I would also encourage you to look through this list of health blogs.  

If you'd like to vote for Studio Foxhoven, simply click on the badge below and you will go directly to my voting page.

The prize? $1000 to the one who gets the most votes and $100 to the one in second place,  If by chance Studio Foxhoven wins a prize, it will be shared with Papa's Home, a place where young boys without families can live and grow. It was started by "Papa" Eric Fairman, who is a dear friend of ours.

This is important.... YOU CAN VOTE ONCE A DAY!  So please, if you have a minute, go check out the list of blogs and VOTE!

Did you take your meds? A short history

 This is really two blog entries in one. It is a review of a new pill dispenser called E-Pill, designed by a Parkinson's patient to help keep us all on track with our meds. First, however, I thought it would be helpful to have a little history on this subject. If you want to jump directly to the second part, go ahead. I promise I won't be offended. (But just think of what you could have learned)

Everyone knows the best way to treat Parkinson's is to actually take your medication on time. This is easier said than done. Ever since the first physicians wrote prescriptions for carbidopa/levodopa in cunieform, they have tried to find creative ways to make sure their patients remember to take their pills. At the same time, patients were working on another development: the excuse for not taking their pills.

The earliest known method involved timing each dose with the length of time it took for an oil lamp to burn. This wasn't totally reliable.

Doctor – So, Esther, how's the shakes? (This was in biblical times before Dr. James Parkinson was born.)

Esther – Not so good, doc. I'm shaking so hard I almost burnt the house down trying to light the Sabbath candles.

Doctor – Are you taking your medication whenever your lamp runs out of oil, like I told you to?

Esther – I tried. The lamp ran out three days ago and I'm shaking so hard I can't light it again.

Next, they tried an hour glass.

Doctor – Thomas, you don't look so good. Are you using the hour glass Brother Luitprand sold you to tell you when to take your pills?

Thomas – I tried, but the sand ran out while I was out on my boat.

Doctor – But Thomas, this is portable. You should have had it with you.

Thomas – I know, but my wife was using it to time her baked chicken.

In the middle ages it was popular to time medications with the ringing of the church bells for the monastic hours. It worked fairly well until the time of the great plague. Then the funeral bells rang all day and no one ever knew what time it was and didn't care, anyway.

The pill organizer was invented by a distant ancestor, Zerviah Meletivea Myers, whose husband, Bill, was always forgetting to take his Sinemet. She thought it would be helpful it he had a way to carry the pills with him. She even made it pretty with an embroidered insert in the lid. Bill thought it looked frilly and hid it in the bottom desk drawer with the last years' seed packets. He told his wife it had been stolen.

The most effective method of reminding patients to take their medication was called, The Spouse. It involved enlisting the husband or wife of the patient to confine their conversation to these few words, “Have you taken your pills yet?” This only worked if the patient had a spouse and even then, the spouse was at risk of if he/she “asked one more time”. In worst case scenarios, the effects could require prompt medical attention or a divorce lawyer.

Of course the spouse was at risk either way. When the patient forgot to take his/her pills, the spouse endured the consequences of their freezing, shaking, rigidity, and needing a piggy back ride home from the fields.

Fortunately, in our modern times we have developed ways to make sure we never forget to take our medication.

Next:  A review of the E-Pill Dispenser and Alarm

Did you take your meds? - a review of the E-Pill Dispenser and Alarm

 Fortunately, in our modern times we have developed ways to make sure we never forget to take our medication. Here are the ways I have found which are effective for me:

Cell phone alarm clock – I can set this to any time during the day and set the particular music for the alarm. This is high tech. I have my phone with me all the time, so I always hear it.

The downside is, sometimes I simply turn it off and forget to go get my meds. Later, as I start to feel wonky, I can't remember. Did I take the pill or not? This is normal, not dementia.

E-Pill Dispenser – This is something new. One of the cool things is it was designed by someone who actually has Parkinson's disease. I assume this person had already tried many of the other methods I listed here.

Cool thing number two: This is a pill organizer and medication alarm all in one. When the alarm goes off, the medications are right there.

Cool thing number three: If I don't turn off the alarm and take my pill, there will be a flashing, “Missed dose” sign on the clock readout.

Since using the E-Pill Dispenser, I haven't missed any doses. This might have something to do with my cell phone alarm still going off, one minute after the E-Pill alarm. It also might have something to do with my spouse coming in and asking, “Have you taken your pill?”, ten minutes later.

Out of the three methods I am currently using, I would say the E-Pill Dispenser is the one I would recommend. It is small enough I can carry it in my purse, yet large enough to hold a week's worth of meds. The alarm isn't nearly as pretty as the cello music which plays on my cell phone alarm, but it certainly gets my attention. The alarm times are very easy to set and easy to read. The alarm will continue for 4 minutes before stopping and activating the “missed dose” sign.

If I were able to make a small improvement, I would ask for an automatic snooze period, after which the alarm would go off again. The “missed dose” readout is easy to miss. I also like the music on my cell phone alarm. When the beeping of the E-Pill goes off in a store or airport, I tend to assume it's just part of all the other background noises. Then my daughter nudges me and says, “Mom, it's your alarm.”

There's nothing wrong with the beeping alarm. I just have to get used to it. For now, I have my cell phone alarm still set as a back-up. Part of the key for me is not to rely soley on one method of remembering.

There will never be a perfect way to ensure we take our meds until someone invents a pill organizer with a GPS and the ability to find us wherever we are and insist we take our meds while they watch.

Oh, right. That's already been done. It's called “The Spouse”.

I'll take the E-Pill.

 

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.

 

 

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A Room Filled with Love

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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, who had years before

started one of the first drama programs for minorities, 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

1000w.jpg

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.

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

 

Pain Management without Pain Medication

"Are you sure you don't want me to prescribe some pain medication?” The emergency room doctor looked at me in disbelief. I doubt he often has people refuse this offer.

I was in the hospital last Friday afternoon with severe neck and face pain. It doesn't seem to be anything serious, more than likely a combination of my dystonia, being at the dentist for a check-up, and perhaps a type of migraine that hits in the area of the carotid artery, right behind the ear. There's nothing to do now, but wait to see if it goes away or gets worse, and manage the pain.

I'm a medication wimp. Side effects are me. It's not only medications, either. I envy people who can drink a couple glasses of wine without feeling ill or smoke a joint and get that nice, “ooh, life is good..” sort of feeling. I have a tiny bit of medical marijuana and I get that, “ooh, the room is spinning and I feel like throwing up..” sort of feeling. Prescription meds aren't much better. Past experience with pain meds have led me to expect one of three different responses:

  1. I will puke my guts out until I am severely dehydrated and end up in the E.R., in much worse pain.

  2. My pain will go away, but my breathing is depressed. I'll lie on the couch, not able to move or speak, or sleep, while my breathing becomes shallower and shallower till finally I stop breathing altogether for 30 seconds or so. That's when I suddenly gasp for air in a panic and the process starts all over again.

  3. Once in awhile I get lucky and it works, without causing any puking or breathing problems. I will only try this if I'm an inpatient at the hospital and being monitored. Otherwise, it's not worth the risk

This means I've had plenty of times when I've had to practice pain management without any medications at all. After this last episode, a friend asked if I would share some of the techniques which have worked for me. I don't guarantee they will work for anyone else. Everyone's systems are unique and there isn't an easy answer, but this is what I do:

For chronic pain and to prevent acute episodes:

  1. Drink water. Unless I'm puking my guts out, I try and drink as much as I can. Being dehydrated makes pain worse.

  2. Yoga. My dystonia can twist me into positions that are not normal for the human body. If I'm already twisting into weird positions consciously, my body doesn't rebel as much with the dystonia.

  3. Exercise. Walking is difficult for me, but dancing is delightful. If I'm sitting and working on my computer, I get up and stretch often.

  4. Laughter. For me, this means being with real people, family and friends, chatting, telling jokes, sharing funny stories, and laughing at my challenges. It also means writing funny stories and sharing them in this journal, and coercing family and friends into reading them.

  5. Massage therapy. Whenever I can afford it. When I can't afford it, I hope to see the “free 5 minute chair massage” sign at the Farmer's market.

  6. Balance. Get out of the house. Do housework. Rest. Don't plan more than I can comfortably do without becoming fatigued. Say no when I need to say no.

Okay, I'll admit it. The last one is impossible for me. I've tried. Well... okay...honestly? I haven't tried. My philosophy has been, “If I do this now, I'll be useless later, but if I don't do this now, I'll feel useless all day.” This attitude can be somewhat good for my soul, but the physical body eventually just has to rebel. When it does, I end up exhausted and with acute pain in some form or another. One challenge is, I don't know how much activity will cause me to become exhausted. It varies.

Techniques for managing acute pain:

  1. Stay away from screens – TV, computer, cell phone, e-reader. When I am not feeling well, looking at screens will make me tense up. My neck and back will become stiff, my dystonia kicks in, and my vision gets blurry. No screens. (As I love to write, this is hard for me, too.)

  2. Drink water and hot tea. Drinking hot liquids helps keep the digestion going. For me, that's essential to pain management.

  3. No sweets and no heavy meals. I stay away from sugar and too many carbs. Overeating, if I have any pain at all, will make me feel very ill.

  4. Hot baths. This is one of the most effective ways for me to relax.

  5. Rest. Rest. Rest. Sleep if possible.

When the pain gets really bad:

  1. Lightly stroking the skin. A massage therapist taught me this and it is how I got through a Cesearean birth without pain medications. Any place will work, it doesn't have to be done where the pain is located. It works better if you don't go in circles (don't ask me why) but just random designs. It also works if someone else does this for me. Some people cannot tolerate this gentle touch, but for most of us, it's a simple way of releasing endorphins to help with pain.

  2. Focus. This is hard to explain and I couldn't find anything written about it. This is what I've developed for myself. More than likely, someone will write to tell me what it is called; I doubt I invented anything new. I'll try to explain...

Lying down, covered warmly, I start with breathing. In yoga, I learned how to breathe in deeply and breathe out, emptying my lungs as completely as I can. It helps to count. Whatever number you count to as you breathe in, add several more numbers to your outbreath, making sure your outbreath is longer than your inbreath. This helps to calm the nervous system. No, I don't have a scientific study to back this up, but I do have a wonky nervfous system that agrees with it.

As I breathe, I start to calm myself. Now, where others might tell me to go to a happy place and not think about my pain, I do just the opposite. To do this effectively, I need to know where the pain is coming from. The more I know about the exact process that's going on, the better it works.

When I know where the pain is coming from, I focus on the pain as objectively as possible. I still feel the pain, but I don't feel the panic that often comes with pain and I don't feel the need to take it away. I just contain it. I mentally let it be in whatever part of my body is hurting, and I try to allow the rest of my body to feel okay, unaffected by the pain.

It doesn't work all the time. I toss and turn and try to get comfortable. Often, though, it is when the pain is at its worst that this technique works the best for me.

Make sure you talk to your doctors about any pain you are having. They can tell if the pain you are describing is something which needs to be checked out at the office or emergency room. Then, of course, if you're not as sensitive as I am, the doc may prescribe pain medication. Take it, zone out (at home), and file this list away for another time.

Ooh, life is good!

..nor disappearing bus stops, nor missing buses, nor missed flights...

Day 3 of the Tale of the Two Intrepid Travelers by Terri and Emma Reinhart

4/18/13

Terri: Up at 6 am to wash bedding and towels, eat breakfast, and check on bus service and flight status. All seems to be a go. From the window, I have already seen 3 buses go by Ronnie's House. The 308 is obviously running today. Should be no problem getting to the airport on time. We'll leave as early as possible, just in case.

Emma: Maybe we should call a cab.

Terri: The bus costs $4 and we still have the transit card. A cab would be $40. No brainer.

 Emma: Fair enough. And we have seen buses go by so all should be well.

9:15 am

Terri: We've been waiting for half an hour and have not seen the bus. So far, two bus stops have vanished, or at least have apparently ceased to be bus stops. After arriving at the first one, we were told (by other waiting passengers) the 308 would not stop there today. We were escorted to the proper bus stop by an older gentleman who offered to show us the short cut through Veterans Hospital. There we waited for 20 minutes before an official looking man came by to tell us the bus was not stopping at that particular stop today. Now we're being escorted to the real proper bus stop.

 Emma: Maybe we should call a cab?

9:45 am

Terri: I've called the bus company and they've assured me the bus will be arriving at 9:49 am. Four minutes. We should still be okay. It's a very short ride, 5 to 10 minutes, to the transit center, then we'll be on the train. That part is easy.

Emma: Ok! Good, the bus should be here any minute now. Annnnny minute at this immediate time it should be appearing. Please?

9:55 am

Terri: No bus. A nice man with a golf cart shuttle came by and told us he wasn't sure the bus would stop there today. He would take us to the stop by the front gate because the bus always comes there. It seems the bus route has changed due to some construction work. Also, it comes one way if the gates are open and another way if the gates are closed. How do we know if it's an open or closed gate time? No one could tell us.

Emma: I’m getting rather cold. Brrrr. It wasn’t this cold yesterday. It was raining heavily but not cold. I. Do. Not. Like. The. Cold.

10:15 am

Terri: Two 331 buses have come by, but no 308's. I finally spotted the 301 on Roosevelt Ave. We ran and the bus stopped and the driver let us on. I asked if he was going to the transit station. He laughed nervously and said, “We'll see.”

Emma: One of the worst feelings is running to catch a bus. But we made it! Mom had a long conversation and I caught my breath and watched as we went by the lake cemetery. The ride to the station was supposed to take 5 to at most 10 minutes. We made it there in 45 because of traffic due to flooding.  

11:00 am

Terri: After a delightful 45 minute ride on the bus, talking to a lovely lady named Harriet, we finally arrived at the transit center. It is normally a 5 minute ride, but many streets are still closed due to flooding.

Shook hands with Harriet and wished her luck on her test. She's another 50 something going back to university classes. If the ride had lasted another 10 minutes, we probably would have exchanged email addresses.

We will not make our flight.

11:15 am

Terri: We're on the train... and it finally started to move.

Emma: I rather enjoy the train. It doesn’t get caught in traffic.

Later

Terri: Changing to orange line... we had to exit the transit system to transfer to the Orange line. This means, of course, having to pay again. Didn't expect this. We have $2.50 on our transit card – not enough for both of us. We can put more money on the card, but the machine only takes cash and won't give change. I have a $20. Asked the attendant if there was anywhere to get change or use a debit card to pay for transit. Answer? “Not here.” He opened the gate for us and let us in free.

Another rule of traveling:

8. Never pass up an opportunity to ask for suggestions, directions, help.

Emma: Thank you wonderfully nice transit station attendant!

12:30 pm

 Terri: We arrived at Midway in time to see our plane taking off. We waved.

A nice attendant at the Frontier counter let us know we could catch the next flight – at 6:45 pm. We can either fly standby, which would be free but wouldn't guarantee our seats, or secure our seats by paying an additional $25.00/each. I paid. We want to go home.

Emma: So, would a cab have gotten us here any quicker?

Terri: I don’t think so, what with the floods, road closures, and lots of traffic. Then we would have paid a lot for the cab AND still had to change our flight. And I wouldn't have met Harriet.

Emma: True. Harriet was pretty cool.

Terri: We have another 6 hours to wait. No worries. There are still shops and we still have a credit card.

1:30 pm

Terri: Bought two slices of pizza and some water. Went down to concourse to find seats and some quiet. Ate pizza and rested.

Emma: Foood! Good food. I’m feeling slightly better. Now to wait…

3:00 pm

Terri: We started feeling just a little glum. This won't do. Went to shop. Bought a cherry coke, a Sudoku book, a neck pillow, and a travel blanket. On the whole, not bad, considering how much we could have bought.

Emma: The chair is getting hard, is the floor any softer? Not really, but it’s nice to be horizontal for a bit. “Cabin Pressure” Time!

7:09 pm Denver time – on the plane

Emma: I’d listened to enough “Cabin Pressure” now that I half expected after getting on the airplane to hear, “bing-bong. ‘Good evening ladies and gentlemen, this is your captain speaking…’” I was a bit disappointed when this didn’t happen.

Terri: We're over Nebraska now, not Denver, but I'm already thinking in Denver time. Chris will meet us at the airport. We were going to take the Skyride again, but the timing would be tight. Timing has not been in our favor this trip. Feeling mildly guilty for my extravagant purchases.  Can't wait to be home.

Emma: Come flyyy with meee…

                   And let this adventure end.

...nor torrents, nor floods, nor lost cab drivers, nor fences...

Day 2 of the Tale of Two Intrepid Travelers by Terri and Emma Reinhart

April 18, 2013

Terri:  Emma's first appointment is for a CT scan at the University of Illinois at Chicago (UIC). Being the amazing travelers we are and not wanting to shell out any more for cabs than absolutely necessary, we decided to take the bus and train to the appointment. Easy. The bus to the train station stops just a block from Ronnie's house and there's a stop for Illinois Medical District on the Blue Line.

It's raining outside...really raining. It's the kind of hard downpour that soaks you to the skin, even when you're wearing a raincoat and holding an umbrella. If it was raining like this in Colorado, we'd stay inside, but this is Chicago. It rains all the time in Chicago. This must be normal. We're not going to be wimps.

Emma:  Right, right. Goodness, it is really raining, isn’t it? Time to play, “dodge the worms on the sidewalk” or maybe a better name for it would be “worm hopscotch.” Eugh.

8:45

Terri:  We're still waiting for the bus. In the rain.

Emma:  And waiting… and waiting.

Terri:  I don't think the 308 is coming. Another person who is waiting suggested we walk to Roosevelt Ave and catch the 301 if we really needed to get somewhere, so we do that.

Still no bus. Finally, a car stops and a man rolls down the window to let us know the bus is not coming. Part of the road is closed and the bus can't get through. I must have looked panicked. He offered to drive us to the transit station. It's amazing to be on the receiving end of this kind of gift.

Emma:

It was really nice of that man to give us a lift. We’d probably have waited for that nonexistent bus for another hour before we realized that it really wasn’t coming. Thank goodness for nice people with cars.

We arrived at UIC an hour late. They were very understanding. Afterwards, while waiting for the cab, I found an article in a magazine about Audrey Hepburn, very cool. I didn’t have time to read all of it though, as the cab arrived quickly.

Terri:  Another rule for traveling:

7. Never pass up a chance to say thank you – to people, organizations, and life in general.

We didn't take any chances. We took a cab from UIC to Shriners. The cab driver was from “Al-bah-ni-a” as opposed to “Al-bā-ni-a”. Of this, he was most particular. I'm not sure how well he understood English. When the receptionist at Shriners asked what it was like outside, he answered, “Twenty-five dollars, please.”

Emma:  The Albanian cabbie was neat. He liked to talk, good thing for living in Chicago. His name was Berti.

12:00 noon

Terri:  Exciting things to do in Chicago: Stand and wait for buses. Sit and wait for doctors. Try to use the bathroom and that's when the cab comes.

Emma:  The checkup went well. Few things to think about. Nothing major, thank the stars.

1:30 pm

Terri:  Back at Ronnie's house. I wasn't sure if we'd make it back.  This cab driver also got lost.  Thankfully, he admitted he was lost and assured me he would discount the fare.  We are HUNGRY!  Fortunately Ronnie's house is well supplied with good food. Pig out. Sleep.

Emma:  Sleeeeeeeeeeeeeeep.

6:00 pm

Terri:  Small dinner. We watched the news and learned we weren't the only ones with transportation challenges today. It seems this is not a usual Chicago rain. It is a torrential, build an ark kind of rain, and there is a lot of flooding. Roads are closed because they are two feet under water. Schools are closed. The Brookfield Zoo is closed for only the third time in its history. It's a wonder we made it anywhere today.

Emma:  It’s a bit strange, being this close to major flooding areas. Never happened to me before. It reminds me of that Doctor Who episode, “Waters of Mars” and now I have successfully been disconcerted by that thought I am off to bed.

Ok, not quite bedtime yet. Hungry.

9:00 pm

Terri:  Late night dessert

Emma:  I got mom to listen to the first “Cabin Pressure” finally!  

A quote of said radio comedy:  “I don't have an airline. I have one jet. You cannot put one jet in a line. If MJN is anything, it is an air dot.”

10:00 pm

Terri:  Listening to “Cabin Pressure” with Emma. She often suggests programs for me. This one's good! Her suggestions are always good.

Now to sleep – perchance to dream.

Neither snow, nor rain, nor dark of night - the tale of two intrepid travelers

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by Terri and Emma Reinhart

April 17, 2013

Emma:  The three most important rules of traveling,

    1. Never pass up a chance to use the bathroom.

    2. Never pass up a chance to eat.

    3. Never pass up the chance to sit down.

Terri:  One more rule:

    4. Be pleasant.

My favorite part in the movie, “Harvey”, is when Elwood P. Dowd tells the doctor, “My father always told me that in this life you need to be either oh, so clever or oh, so pleasant. For most of my life I was clever. I prefer pleasant.”

Emma and I started out this trip to Chicago a little reluctantly. With the birth of our new grand daughter last weekend, it was difficult to think of leaving.

Emma:  I was also rather reluctant to travel since it meant leaving Lexus. Granted, I am a little grateful to not have to wake up at 7:30 for a few mornings or constantly go out with Lexus on the off chance that she needs to pee. Aside from the slightly more free time this allows, I am still a bit of a worried new momma but I know that she is with a very capable puppy sitter and is probably having a marvelous time with their dog.

Arrival at the airport

Terri:  We took the DIA Skyride from downtown Denver and arrived in plenty of time to catch our 2:50 pm flight. The boarding passes printed, we went through security and headed down to the gate. That's when Emma looked at her boarding pass and asked about the boarding time, which was listed as 6:05 pm. I assured her it was probably just a mistake. We looked at the departure times, just to make sure.

Emma:  I was sure there was a mistake. That was more than 5 hours away! Yet, sure enough we checked the departure schedule. Delayed. Scheduled to board at 6:05 and leave at 6:40! Ugh, what were we going to do?

Terri:  We made our phone calls, one home to update Chris, and one to Ronald McDonald House. Ronnie's house closes its doors at 8 pm. We won't land in Chicago till 10 or after, then there's the cab ride. They agreed to check with the house staff and see if someone would be willing to stay up late and let us in.

YEAH! They'll let us come!

Now, what to do for the afternoon? I called Chris and let him know we are fine. There are plenty of lovely shops and I have my credit card.

Another Rule for Traveling

    5. Never pass up a chance to shop

Emma:  I approve of the new rule. As for the flight, we kept checking the departures to make sure the flight was not cancelled. I was a little worried. We overheard a man saying that he had been here since yesterday waiting for a flight. It was also snowing quite a bit now. So far so good though! There were a good number of people waiting around for delayed flights, I'm sure the shops were happy.

4:00 update:

Terri:  My energy gave out before we reached our credit limit. Time to rest. Pleasantly.

Emma:  Time to get out the music. And perhaps people watch. Always fun in an airport. I had put a bunch of audio episodes of “Cabin Pressure” on my MP3 player, I thought it was appropriate. If you're not familiar with it, “Cabin Pressure” is a British radio comedy about a crew of a small airplane that often get into all sorts of mix ups and on each others nerves. It is very funny.

Terri:  People watching is fun. Talking to people is fun, too, especially when it's crowded and everyone's been waiting a long time. I now have 35 more Facebook friends.

Emma:  You're exaggerating mom, it's more like 50 more Facebook friends.

5:00 update:

Terri:  Sitting right next to the gate doesn't make the plane come faster. If the alarm goes off suddenly, it may be because I've had a serious hot flash and have dashed out the emergency exit into the snow.

Emma:  I am wearing all the scarves because we are sitting by the gate and emergency exit. It was the tropics at the other seats, it is the Arctic here. But mom's happy.

I suddenly realized why it is not such a good idea to gulp down the last of the now lukewarm Izze drink. Hiccups are not very fun. We brought a couple snacks from home: grapes, strawberries, nuts. We also bought a bag of “Colorado Mountain Rocks, Collected Daily from the Rocky Mountains” They're tasty. I should specify that they are not actually made of various pebbles and minerals but something that is a little easier to chew and much tastier, chocolate.

Terri:  Another hour and we should be boarding. We have eaten. We have used the bathroom. We have shopped. We are sitting.

Emma:  We have cured my hiccups! And we are getting a little tired of this trip already. Maybe it will be better tomorrow, it's supposed to be much warmer in Chicago and I hear there is more to do then sitting and waiting, which will be nice. (Actually I know there is more to do, I've been there before. Lot's of attractions. And trains... And buses).

Terri:  And we're still pleasant... right?

Emma:  Bah humbug! I mean... Yes, of course. Bright eyed and smiling.

On the plane – update:

Terri: Boarded at 6:15, took off at 8:15. Will they still be gracious at Ronald McDonald House if we ring the bell at midnight?

Emma:  Yes, I'll have the turkey sandwich and the cheese and hummus platter. Yum. Ooh, goat cheese? And there's chips! If you've never had Pringles with goat cheese I... wouldn't really recommend it but it was not a half bad experience. I always forget how noisy the engines are so I don't think I'll listen to any music. Oh, well.

Terri: Pringles, ginger ale, and sleep.

In Chicago – 11:45 pm:

Terri:  Landed. Attempting to hurry across airport, call a cab, and get to Ronnie's house as soon as possible. Our attempts to hurry are thwarted by a reception for a group of WWII vets arriving in Chicago. From their gate to the outside door where they are loaded into a limo, their path is lined with soldiers in dress uniform, saluting for each of the older men as they are wheeled by in wheelchairs. A bagpipe band is at one end and a brass band at another. Beautiful, inspiring, wonderful, but it also makes it difficult to get from point A to point B.

Cab driver got lost going to Ronnie's house. Didn't know enough about cabs to argue the fare. Paid way too much. Got in at 12:45 am. Time to sleep.

Another rule for traveling:

6. Never pass up an opportunity to sleep.

Parkinson's Time in Verse and Rhyme

April just happens to be Parkinson's Awareness Month.  It also just happens to be National Poetry Month.  How could I resist?  I'm afraid these aren't terribly polished.  April also just happens to be the month our new grand daughter arrived.  There may be more poems coming.  We'll see.

Parkinson's Time in Verse and Rhyme

1.

Stop.

Think.

My eyes are dry

because I haven't been thinking

about blinking

so I haven't been.

Blinking.

Think, blink, think, blink.

Stop.

Step.

Since when should I have to think about walking?

Stop. Step. Stop. Step.

Breathe.

Or breathing?

Or blinking?

Was there ever a day when I did this automatically?

Without thinking?

2.

Up, up, down, up, up, down,

Step, step, plié, step, step, plié

Shuffle, step, shuffle, step.

Shuffle, shuffle, shuffle, step.

If I pay attention,

and squint a little in the right direction,

my steps start to look, just by chance,

like a very unusual dance.

If only my arms would think

to do the same dance as my feet,

I might be on to something really sweet.

But no, I'm afraid, that can never be.

For while my legs plié as in lovely ballet,

my arms start to swing

or be bop to a beat.

Until the music starts,

then anything can happen.

3.

It's quite a talent to be drunk,

but not appear to be so.

What extraordinary talent it must take then,

to appear drunk

without having drunk

as much as a thimbleful.

A man staggers towards me,

the smell of whiskey forming a cloud,

cirrocumulous, about his person.

It accompanies him as we meet

on the sidewalk.

He stops, smiles and winks

at a fellow staggerer on the street,

we exchange greetings and go on.

Even after exiting his cloud,

some of the whiskey fog still clings to my sweater.

My hand goes automatically to my wallet

and I am reassured.

I am a card carrying not a drunk person.

It says:

My hands may shake.

I may have difficulty standing or walking.

I may have difficulty speaking.

My words might slur together.

I have Parkinson's disease.

I am not drunk.

I am not drunk.

So, you others passing me by?

You don't have to look at me like that.

I wonder...

if I fell,

would it be the drunk man who helps me up?