Pray for me? Let me think about it.

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

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

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

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

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

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

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

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

WE ALL WON TODAY!

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

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

California Dreaming

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

Day one:  

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

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

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

Day 2:  

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

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

 

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

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

 

 

 

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

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

 

 

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

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

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

 

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

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

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

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

Day 5 - 

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

Day 6 -

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

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

Emma, however, was still California dreaming.

 

 

 

Always Darkest before the Dawn

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

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

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

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

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

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

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

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

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

And I'm sure I looked happy.

So Many Different Ways to Be Beautiful

Reprinted from Studiofoxhoven 2

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

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

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

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

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

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

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

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

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

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


Live Forever? Really?

I’m more than two thousand years old, I am. I’ve lived longer than anyone in the world.
Mort shook his head.
”You haven’t, you know. You’ve just stretched things out more.
— Terry Pratchett - Mort

It was in the paper this morning. A number of techie billionaires are trying to find a way to extend life to at least 150 years, if not forever. Larry Ellison, founder of Oracle, is quoted as saying, "Death has never made any sense to me. How can a person be there and then just vanish, just not be there?"  Their objective, according to the newspaper article, is to "use the technological tools with which they created an information revolution to upgrade what they consider to be the most complicated piece of machinery in existence: the human body."

I had to look at the cover of the newspaper. For a moment, I thought I was reading The Onion.

There's something wrong with this picture, no matter how you look at it. Fortunately, the bioethicists agree with me. Even Bill Gates thinks their priorities are screwy.  I foresee some challenges if this ever comes to pass. (though I'm confident it won't come to pass)

I hope, as these techies are donating millions so they can live and tech on forever, they are also looking at ways to make the planet live on forever. If not, they'll have to work on the ability to colonize other planets. 

Now they are embracing Peter Thiel's (cofounder of Paypal) plan for a floating city in the middle of the ocean outside the reach of any human government. I'm sure he'd be relieved to hear I'm not interested in joining them. My idea of Utopia definitely would not be living with a group of wealthy immortals. 

Even if you just live to be 150, when do you retire? Are you planning to work till you're 120? Peter has an answer to this, too. He feels people stop trying because they think they don't have enough time: "Because they are 85. But that 85-year-old could have gotten four PhD's from 65 to 85, but he didn't do it because he thought he didn't have enough time." 

I don't need to comment on that one.

In the United States, our life expectancy is already better than that of 161 other countries. There are also 41 countries whose inhabitants can expect to live longer than we do, but the difference between our #42 (79.56) and the #1 country (Monaco at 89.57) is only ten years. If we lived in Chad, we could expect to live only to age 49. We're not doing so badly as it is.

These billionaires may think they are doing good for everyone, but it seems to me it would become one more way to divide the rich and the rest of us. Not everyone will be able to afford these human upgrades. Heck, most of us can't afford the tech upgrades. The last automatic upgrade we went through was called puberty. As upgrades go, it had some nice features, but it messed up the rest of the system for a number of years while we figured it out. 

In some countries, technology is cheap. I know of people living in poverty in Nepal and India who have cell phones, but they do not have clean water. It seems to me, spending millions of dollars to find a way for billionaires to live forever cheapens human life. What would happen if Peter, Larry & Co would, instead, spend the time, energy, and expertise to find a way to keep our planet alive and healthy so there will be a place for humans to live?

What if they would spend their money to help all people on this earth have easier, better lives in the time we are given?

I prefer a different kind of immortality.

No one is actually dead until the ripples they cause in the world die away...
— Terry Pratchett, Reaper Man

A Magic Wand?

As a first step, any ‘cure’ would have to stop the spread of the dysfunction in PD brains, so it would have to arrest progression. Brains do ‘heal’ through making new nerve cells and incorporating them into existing networks, but the healing process is slow. Potential ‘cures’ may include therapies that accelerate the healing processes, although it is likely that the first ‘cures’ would arrest progress and not reverse the disease or make symptoms go away entirely.
— Dr. Rohit Dhall

I have lost track of the number of ways I've been told my Parkinson's disease could be cured. The stories generally come from well meaning friends or friends of friends about someone they know, or someone a friend of theirs knows who was cured of their Parkinson's disease by taking a certain supplement, or drinking an herbal tea or following a special diet. Often people are offended when I don't jump to try the new sure-cure they've suggested. After all, so-and-so tried it and they've been symptom free ever since!

When we go to our doctors, we tend to expect them to have miracle cures, too. Antibiotics were, and still are, miracle drugs, even as we know more about the downside of overusing them. Sinemet (carbodopa/levadopa) is a miracle drug for Parkinson's which has allowed those of us with PD to function. We've come so far with modern medicine, we've become impatient. We really want a magic wand hey presto throw your crutches down and dance kind of cure.

I would be happy with this first step, described to me by Dr. Rohit Dhall. This is enough for me to know. It's exciting to think there may be a time when PD will not be progressive. Even if it's not in my lifetime and it's not totally cured, halting the progression of the disease would be amazing. Levadopa, after all, was a throw your crutches down and dance kind of cure for the time. When it was first given to Parkinsonian patients in 1961, people who were bedridden were suddenly able to walk and run and even jump. (History of Parkinson's Disease)

Dr. Rohit Dhall is the Director of Clinical Studies and Movement Disorders Specialist at the Parkinson's Institute and Clinical Center in Sunnyvale, California. He recently took 45 minutes of his time, precious time to a busy neurologist, to talk with me on the phone about the issues of Parkinson's Dementia and Parkinson's Psychosis. During our conversation, I asked some questions about a cure. The answer he gave, which I have quoted at the beginning of this article, was reassuring to me.

Perhaps because he wasn't promising a miracle, magical cure, it sounded like it might actually happen some day. 

Am I Losing My Mind?

"In other words, Parkinson's may not be unique to me, but I am unique to my Parkinson's. I am not a collection of symptoms to be managed; I am a complex person, and I want caring physicians who see all of me and who are willing to walk down the path of Parkinson's with me. In my neurologist, of course, I want a doctor who understands Parkinson's inside and out, but I want him to understand me inside and out, too.

Thomas Graboys, MD from his book, "Life in Balance"

Before my diagnosis of Parkinson's disease, I was becoming anxious about my health. My balance was off in more ways than one. No one can think very clearly when they have significant health challenges that go for years with either no diagnosis or several diagnoses which the doctors won't agree on. The physical issues with balance, bradykinesia, and dystonia were just the tip of the iceberg. At best of times, we can't separate our illness from how the rest of our body and brain functions. If you've ever broken a toe, which is something quite minor in the scheme of things, you understand this.

Cognitive issues, like it or not, are a part of Parkinson's. When these cognitive issues become unrelenting and affect our daily lives - other than just when we're tired and meds have worn off (we all have off days) - it's time to check in with our doctor. Most of us have experienced the sadness of watching someone we love slowly lose their memory and cognitive abilities due to Alzheimer's or dementia. The estimates of how many people with PD will develop Parkinson's dementia vary greatly. I've seen figures anywhere from a conservative 20% to a frightening 80%. 

The percentage of people with Parkinson's psychosis is difficult to assess easily as well. Dr. Rohit Dhall from the Parkinson's Institute and Clinical Center in California, spoke to me on the phone. "About a third of (Parkinson's) patients can experience psychosis at some point," he said, " and maybe 15% will have profound psychosis requiring a low dose of an antipsychotic medication." 

He continued, "Our biggest fear is losing our minds. In general, People with Parkinson's remain sharp."

With psychosis, Dr. Rohit explained, the patient is out of touch with reality. This can include hallucinations (seeing, hearing, smelling, feeling, or tasting something which is not there), delusional thinking (false, firm beliefs - the house is not my house, the person here is not my spouse but rather an imposter, people are trying to poison me). Often, if there is a mild psychosis due to medication, the patient will retain their awareness of what is real and not real.  

When someone comes in to their clinic with psychotic behaviors, Dr. Rohit said they look first at their medications and make adjustments if need be. All the dopamine agonists (ie: Requip, Mirapex), levodopa, and some of the others can increase the likelihood of hallucinations. The doctors also look at the patient's history. Do they have an infection or other illness which could be causing this? How long have they had Parkinson's? Do they have Parkinson's Dementia?

Psychosis can come with the advancing disease as secondary to changes in the brain related to PD. Those who have cognitive challenges of Parkinson's Dementia are at greater risk. There are medications, however, some of the common drugs which treat psychosis in the general population will worsen PD symptoms. It can also take awhile to find the right combination of medications.  

When a medication is causing or exacerbating a psychosis, it seems reasonable to simply take the person off the drug. This isn't always practical and the patient and doctor have to weigh the benefits against the undesirable effects. In this case, it would be helpful to have a medication to help mitigate the effects of the PD meds without causing further nasty stuff. This is when my head starts to spin.

Remember the old carnival fun houses with, as Wikipedia says, "various devices designed to surprise, challenge, and amuse the visitor", often incorporating activities which distort reality (mirrors) or throw us off balance physically? I was never very fond of them. Looking back, it seems like my first years with PD, especially as my medications were constantly being adjusted, were much like being in one of these places. It wasn't all bad, just exhausting after awhile. 

I asked Dr. Dhall if there was anything we could do to lower our chance of getting PD Dementia or PD Psychosis. Fortunately, though there is nothing we can do to guarantee we won't have severe cognitive challenges, the standard recommedations for avoiding demetia are valid here. 

They are:
Take care of your heart health. Eat right and exercise. 
Exercise your mind with problem solving tasks and word retrieval games. If you are regularly engaged in exercising your brain, it will help. Be engaged in the community. When withdrawing from community work, some people decline more quickly.
Pay attention to mood. Mild depression will affect cognition, often because you give up quickly. 

Let's face it, we're all control freaks. It's engrained in our society right now. Not only are we supposed to pull ourselves up by our own bootstraps, we also must take charge of our life, be the change we want to see in the world, learn to dance in the rain, and always be positive. Our society still has to learn to accept and value times of weakness. 

This morning, I visited a lovely woman who has Alzheimer's disease. She couldn't remember her granddaughter or her son-in-law. She couldn't create full sentences or ideas. It didn't matter. I had heard she was a fighter and a feminist. When I said this to her, she straightened in her chair and said, "Yes!" And she let me know, in her halting, disjointed way, she wished she could still be out in the world doing things. "I love it," she said, smiling. 

Later, I wrote to her son, "When I get old, I hope I can be as delightful as your mom. I've experienced this with other people, but she was a reminder that, even though Alzheimer's can be very sad, SHE isn't. I'm sure there were times of real struggle and may still be, but her warmth shines through."

As Dr. Thomas Graboys said, as he was battling Parkinson's and Lewy Body Dementia, we're much more than just a collection of symptoms to be managed.