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

Big Bird and The Count

 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.

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.

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.

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.

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.

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www.epill.com

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.