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.
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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. 

Headology

One of my favorite characters in Terry Pratchett's Discworld series is Granny Weatherwax. She is a witch who happens to work in a seemingly unmagical fashion, something she calls headology. In her opinion, witches don't need all that hocus pocus to light fires. All she had to do is throw the logs on the fire and glare at them until they burst into flame from pure embarrassment. 

Terry Pratchett.jpg

Terry Pratchett died last night after battling a rare form of early onset Alzheimer's disease. He was open about this battle, "The thing about Alzheimer's is there are few people who haven't been touched by the disease." I would imagine his openness was therapeutic for him in many ways, certainly much healthier than trying to keep it secret. Even so, any disease which causes such difficulties with memory and cognition, especially when it comes at a young age, is terrifying to most of us. 

A little closer to home, last week we lost a friend who had battled Parkinson's disease and dementia. Maria was 74 years old. We often were next to each other during our yoga classes and I enjoyed her gentle sense of humor. The last time I saw her, it was obvious her illness was progressing. She seemed distant as though her journey was already taking her away from the world most of us know. It didn't stop her from reaching out to me when I needed help.

Someone in the building had been fiddling with the PA system and there was a sudden electronic screech. Okay, breathe out. Admit it, you cringed when you read that, didn't you? It triggered my dystonia and I twisted up like a kindergarten pretzel (uh, a pretzel made and shaped by a 5 year old) and was unable to move. Maria took one look at me, smiled, and said, "I know just how you feel." Then she came and put her arms around me and held me. Whatever it was about this gesture of hers, my muscles immediately started to relax. Headology?

Awhile ago, I was asked to interview a neurologist and write something for my blog on Parkinson's Dementia. I hesitated. I cringed.. and then I agreed to do it. Then I never heard from this person again. In some ways, I was relieved. When I was diagosed with PD, I was finally told that my symptoms were real, there was a physical reason for them. It wasn't all in my head. It was nice to know my thinking was not going to be affected.

Then I remembered those dopamine producing cells which were dying off.. where? In my brain. I'm not sure it's possible to have any chronic illness which only affects us physically. Certainly it's not possible with PD, especially when we factor in all the medications for PD which affect... what? The brain. 

So, if the original interview doesn't happen, I'm going to write down my questions and go to my own neurologist and perhaps a few others I know in town. For Maria and for all those who have dementia as part of their Parkinson's diagnosis, it's worth researching this topic. 

And if Granny Weatherwax is available, anywhere, I'd love to interview her, too. 

 

Too Much Information or Not Enough?

What do you want to know when you are diagnosed with a chronic health condition? I met a woman the other day who had recently been diagnosed with Parkinson's. She was given her prescription for Carbidopa/Levadopa and told to come back in six months and let the doctor know how it worked. That was it. No information. Needless to say, this wasn't the ideal way to begin this journey.

When I was diagnosed, I didn't want a lot of information. I wasn't going to dwell on the future and I didn't want to hear what might happen to me.  Live for today. It's what we're supposed to do, right? This worked for a little while until I ran into certain challenges which made me think, I sure wish I had known THIS from the beginning. That's when I realized living for today doesn't mean forgetting what happened yesterday or not thinking about tomorrow. 

The internet is an interesting place to learn about medical conditions. There's too much information and it can be overwhelming. I did my best. Depending on the site, I found: totally incomprehensible scholarly articles, health advocates telling me my PD was curable and I didn't need to take meds, one page which seemed to focus primarily on constipation problems with PD, an online group where everyone complained, and numerous pages telling the basic stuff about the classic symptoms: tremor, rigidity, bradykinesia (slowness), and postural instability (wonky balance). 

Between doctors, therapists, and finding some good websites, I have resources for getting the information I need when I need it. There are a few things I wish I had been told by my doctor, from the beginning, like how Dopamine works and what its effects are on the whole body and brain and mood, not just the classic four listed above.

It also would have been helpful to be reminded that neuromuscular means anything in our system which depends on muscles and/or nerves. And I wish I had known it could take a few years before the right balance of medications would be found for me. I realize the doctors can't predict how long it will take, but I suspect there are few times when they get the meds right the first time. 

Regardless, I still feel much the way I did when I was first diagnosed. Everyone in this world has challenges they will face. Mine just has a recognizable name. I don't believe my life is any harder than anyone else's and, really, I have it easier than so many people. My road will be different than it would have been if I hadn't been diagnosed with PD, but that's not bad. There have been new people to meet and new things to experience.

So far, it's been a fascinating journey!

Good websites:  http://www.patientslikeme.com, http://www.michaeljfox.orghttp://www.parkinsonrockies.org/

 

Three Nicest Words

Today I heard the three nicest words, the best words, the words which made me smile for the rest of the day. No, it wasn't "I love you", but something just as wonderful:

"It is benign."

I realize I had it very easy. A small mass was spotted on my kidney when I went in with the "kidney stone that roared" last week. I was able to have an MRI and get the results quickly. There was only a week to not think about what might lie ahead. 

I didn't let myself think about the possibility of cancer growing in my abdomen like bind weed in our garden.  I stayed away from thoughts about chemotherapy and radiation and surgery and I stayed completely away from the subject of death... for the first ten minutes or so.

Last summer, a friend lost her husband to cancer. He may have lost the battle anyway, but he had refused to see a doctor and refused to go to the hospital when he was very ill. Some weeks later, I was with a group of women and I was surprised to hear several of them say they would never want to be taken to the hospital if found unconscious and unresponsive - no matter what the issue might be. "Just let me die," one said, "death is a natural process."

I don't want to sound disrespectful, but hey, if I find someone on the street who is unresponsive, I'm calling 911, even if they have direct orders tattooed on their chest. They can argue it out with the paramedics or the docs in the ER if they'd like. I'm not making the decision to let someone die on the street. I'm all for natural processes, but I'm not against medical care.  

Yes, I would go through chemo if it seemed a reasonable thing to do. It's not pleasant, but these drugs have come a long ways towards making cancer an illness to be managed rather than a death sentence. Everyone who goes through treatment helps the science get better.

I would never want to hurry my way out of the world, either. Suicide, whether assisted or not, does not appeal to me. Palliative care offered today is much more than lying in a hospice totally out of it on drugs. Quality of life is the focus of palliative care and those folks know what they're doing. I don't want to hurry anywhere. I've got grandkids. 

All is good and, with a week to contemplate the mysteries of life and death, I decided if I had to go soon, I didn't have any regrets. I've had a wonderful life so far and I've been fortunate to share it with so many wonderful people.

This was a very small wake-up call, a reminder that all life is a gift and it owes us nothing.