Dancing with Angels

I was dancing with angels last night. No, I haven't died or started a new religion, and I haven't been indulging in Colorado candy. I was square dancing. Angels, in the square dance world are those more experienced dancers who volunteer to help teach new students by being their dance partners. 

Square dancing? Ask anyone if they've ever square danced and more than likely they'll say yes, but not since 6th grade. No matter which school they attended in which state, 6th grade seems to have been The Year for square dancing. They all remember how much fun they had and can't seem to remember why they never did it again.

Square dancing as adults? I've thought about it many times over the years as it was the only type of dancing my husband would consider, even theoretically. After looking into the clubs around town, I decided against it. I wasn't sure I'd fit in, much less my husband - even theoretically. 

Then came Linda, one of my dance teachers from my Dance for PD class, who excitedly told me how she had started learning how to square dance and how much she loved it. Seems she had looked at clubs all over the city before deciding on one. She had been discouraged too. "I just didn't fit in," she said, grimacing as she remembered her visits to various clubs.

"They were wearing the dresses, weren't they," She nodded and I nodded back sympathetically. Linda is from Brooklyn. She taught, and still teaches, ballroom dancing. Imagining Linda in a frilly square dance dress with all the petticoats? ....no. It doesn't work. And there is nothing, and I mean NOTHING that could get me to wear one. I am not a petticoat kind of gal.

The group she eventually joined was much more informal. Jeans and t-shirts. Lots of laughing. Lots of eating. Lots of parties. She had just finished her first year of lessons and invited me to come to their open house in September. She invited my husband, too, which, theoretically would have been nice, but practically, he preferred to stay home and read. 

The group is the Rocky Mountain Rainbeaus, an LGBTQA club. The Q stands for questioning and A? maybe it stands for All the rest of us, because it's an all inclusive group and one of the warmest and most welcoming groups of people I've had the pleasure to meet. They are into having some serious fun with dancing. This is not your 6th grade dance class. Fortunately, we start out slow and build on what we learn each week. It is a real physical and mental workout.

I've heard square dancing is becoming more popular among college students, especially those math geeks who see the steps as geometry equations. I'm glad I didn't hear this before I started or I may never have joined. I've lost count of how many members really did not want to join, but were talked into coming once, and then stayed to become leaders, organizers, and... angels. 

Here's their website:  Rocky Mountain Rainbeaus

Keeping our Sense of Wonder - Knowing what we don't know

This week I joined a small group of people with movement disorders at the University of Colorado Health Sciences Center and we had the privilege, once again, of being interviewed by groups of 2nd year medical students. I've done this for five or six years now and I've come to appreciate what I learn as well as the opportunity to teach the medical community a little bit about the reality of living with a movement disorder.

Intended to be a learning experience for the students, I believe it's also important for the teachers - the experienced medical doctors who are in charge of preparing the next generation of health professionals. We expect the students to be impressed when they hear about the realities of living with a movement disorder, but we don't expect the doctors to react. They've heard it all before.

During the interviews, however, they are listening in a much different way - through the perspective of the students. The students take things slowly. They hesitate. They ask their questions and wait. They are not thinking of the five (or ten or fifteen) patients still to be seen. They aren't trying to put together a diagnosis as we are speaking. They don't have the same knowledge or experience as the doctors and they know it. 

Something magical often happens. The doctor hears, really hears and suddenly comprehends one of the challenges we go through as patients. The students responded with interest and sympathy when they heard how drug side effects caused serious problems for me for two years before anyone, including the neurologist, knew what was happening. The doctors reacted more strongly and responded with , "Wait, what was that?" and they began asking me questions about what they could have done differently. One year, the doctor turned pale and seemed to forget the students were in the room as she asked me question after question. 

They realized how much they didn't know and this, I believe, is the best lesson for the students.  

I had symptoms for 5 years before I was diagnosed with Parkinson's disease. Looking back, it's not the length of time which was so frustrating, it wasn't even the misdiagnoses. My PD presented itself in a way which differed from the classic symptoms. The frustrating times were when I had doctors who were so very, very sure of themselves.

It's a fine line, I know. Doctors need to be confident in their abilities, otherwise they would be second guessing themselves all the time - and that isn't healthy for them or their patients. Having the ability to say, "I don't know. I'll have to think about this and talk with some of my colleagues" when they have an unusual situation is reassuring, at least to me. 

It means they haven't lost their sense of wonder. It means they know there's a lot they don't know. These are the best doctors.

Learning How to Grow Older

As I watch my parents get older, there are so many things I think about. In fact, there are so many things, I have to keep lists. Most of this is purely practical: the paperwork I need to get done so they can move to their assisted living apartment, what they will need to bring with them, what are all those things they can't take with them and what will be do with them. That's a long enough list to last a few months right there. 

For better or for worse, we can't be only practical when it comes to our parents aging. There's a whole range of emotions and memories, as well. There's also some dirty laundry to deal with, even if it's just in my own mind, and it has to be sorted, cleaned, and hung out on the line to dry. 

It's also made me look at how I want to be as I get older. Do we have a choice?

It's debatable how much of our health is due to our lifestyle choices and how much is due to luck, karma, and good genes. Eating healthy and exercising is good, but then my grandmother ate lots of rich desserts and she lived to be 97.  My choice, my ideal, would be to live a full life and be able to say at the end, as my mother-in-law did, "It's been fun, hasn't it!"

What I've learned this summer is I don't ever want to resent being a year older. I'm not going to buy into the youth obsessed culture. I don't want to pretend I'm still 35. I'm not. I don't want to dye my hair or hesitate when someone asks my age. Why would I? Being 57 is cool! Each time in our life is unique and I'm enjoying my life right now.

Don't tell me I'm 57 years young. We wouldn't tell a child he is 10 years young. I'm getting older, not younger. All of me is getting older. I don't have the physical body of a teenager or young adult and, thankfully, I don't have the mind of a teenager, either. I wouldn't want it. A lot of work goes into learning and developing as an adult, and the work never stops. 

I don't want to fear getting older. I don't even want to fear getting very old. Many people don't make it that far. I'm not afraid of nursing homes. I worked in one. There's also the example of our former neighbor who, at the age of 92, met a lovely old lady in the nursing home where they both lived. They spent their days holding hands and talking to each other. No one else understood what they were saying, but they enjoyed every moment. I'd like that. If the other person was my husband getting very old with me, it would be even cooler.

The only thing that scares me about dementia and Alzheimer's is the possibility of becoming mean to people I care about. Even then, I know it's a phase which sometimes, but not always, accompanies these diseases and inevitably will disappear in the fog of memory loss. The memory loss doesn't worry me nearly as much. The heart often remembers, even if the brain doesn't. At least I believe this is true.

Ah, if I wasn't in the middle of taking care of my elderly parents, I wouldn't be spending time thinking of what it would be like to turn 85 or 90 years old. I've still got a long ways to go and I'm far too busy being 57 and spending time with my favorite 60 year old, 33 year old, 32 year old, 30 year old, 21 year old, 4 year old, 3 year old, and 1 year old.... not to mention my 85 and 90 year old parents.... and all those friends in between... to dwell on.. well, anything at the moment. 

So I'll just leave you with a few good quotes from some amazing women:

“Aging is not lost youth, but a new stage of opportunity and strength.”

— Betty Friedan

“At 20, we worry what others think of us. At 40, we don’t care what they think of us. At 60, we discover they haven’t been thinking of us at all.”

— Ann Landers

“The great thing about getting older is you don’t lose all the other ages you’ve been.”

— Madeleine L'Engle

“I’m a person who gets better with practice. Getting older is awesome because you get more practice.”

— Zooey Deschanel

"At my age, I doubt I have more than twenty good years left."

“At my age, with all my aches and pains and health problems, I doubt I have more than twenty good years left.””

— Jim Myers - age 90

Dad's turning 90 tomorrow. He has said all year he wanted a big blowout party for his 90th birthday. Unfortunately, we are all worn out at the moment and the big blowout is going to be much more of a quiet day with a number of visitors stopping by to wish him well. 

We're worn out because we're in the process of moving them into an assisted living apartment. It's a huge move, especially for a couple of pack rats who are finding it difficult to downsize. 

I've had the privilege of being able to spend time with Dad each week, taking him to the grocery store and helping him shop. After initially balking at the idea of the electric scooters, he is now a pro at driving around the store. He hasn't hit anyone yet. My biggest challenge is making sure he doesn't get more food than can fit in their fridge and trying to convince him he doesn't have to buy me a large package of Velveeta cheese - or anything else.

This time, during our weekly visit to the store, has been precious to me. Even though I know he won't need to buy groceries after their move, I've told him I'll still take him to the store - or somewhere every week. Maybe we'll go to a hardware store. I like hardware stores as much as he does.

I hope I can age as gracefully and with as much wonderful (and sometimes wicked) humor as he has. 

Don't Brush off the Drug Factor

It was inevitable. As soon as the news announced Robin Williams' diagnosis of Parkinson's disease, I felt a wave of panic surge through my entire body. Despite telling myself I was jumping to conclusions and we'd probably never know what factors were in play the day Robin took his life, the question would not leave. I went to my internet support group and, sure enough, someone had posted this very question on the forum. Seems a lot of people were wondering the same thing.

Was Robin Williams on a dopamine agonist drug? Did his PD medications have anything to do with his suicide?

This morning I learned that a good friend of Robin's, Rob Schneider, has publicly questioned the role of Parkinson's medications in his friend's suicide. Afterward came the predictable response from the medical community (Doctors Blast Rob Schneider's Parkinson's Drug Twitter Rant). 

We don't know and will probably never know what caused Robin Williams to take his life. We don't know which medications he took for his Parkinson's. Most importantly, we really don't know enough about the brain and how exactly it works with drugs, our environment, and our unique personalities to say anything for sure. 

Just don't brush it off.

HEY DOCS... did you hear this? DON'T BRUSH IT OFF! Medications don't have "side effects", only effects. These effects can vary a lot from one person to another. Effects can start out slowly and build up after time - even without a dosage increase. And you know what else? Those of us who often report adverse effects from drugs are often brushed off because you all decide we must be imagining things.

After telling my nurse NOT to give me any medication for pain after surgery, the nurse responded with impatience and even anger. I obviously didn't know what I was talking about. When I threw up after waking up from surgery, the nurse scoffed at me, saying "Now what do you think of recovering from surgery without pain meds?" Two days later, she came to me white faced and shaky, and said, "I've never seen anyone as sensitive to medications as you are." It was as close to an apology as I would get.

After experiencing some not-so-helpful effects of dopamine agonists, my neurologist at Kaiser (great doc, Dr. Lindsey Hudson) put it this way, "You're just one of those people with a brain that's easily inspired."

No, that's not a euphemism for total nut case, it means just what she says. My brain is easily inspired, whether by drugs, poetry, art, music... I'm an artist. The connection between artistic creativity and psychopathology (extremes in mood, thoughts, and behavior) have been studied for a long time and the link is clearly established. Our brains are wired differently. It's not always the easiest brain to live with (just ask our spouses), but it's worth it. At least I think so.

"Easily inspired" is also a warning. Be extra careful when doing anything which will affect this brain. It's going to react differently than what you might expect. It may go zipping across the house, ricocheting off walls and ceilings, it could hide out in its room and not want to come out, or it could jump off the high dive - with or without water in the pool. Medication can also be the spark which lights the inferno and makes anything less scary than being consumed by the fire, even suicide. 

DON'T BRUSH IT OFF!

Sure, neuroscientists are learning more and more all the time, but really, we're still like Model T mechanics trying to understand the Space Shuttle. 

So, docs.. please, before you get out your prescription pad to prescribe any medication which affects the brain, get to know your patients a little. Find a way to check in with them often enough, especially at first. Suggest they have a family member come with them to appointments. Make sure the family member reports any changes in the patient's personality or behavior - too happy, sad, or angry? can't let go of thoughts? baking 12 dozen chocolate chip cookies every week? Spend more than 10 or 15 minutes with each patient and really listen. 

Don't brush off the medication factor. Our lives may depend on it.

Robin Williams and Parkinson's Disease

Finding out today that Robin Williams had been recently diagnosed with Parkinson's disease makes his death more personal to me - more tragic and infinitely more terrifying.  I think of the disability lawyer who told me he'd eat his revolver if he was ever diagnosed with anything like Parkinson's. I think of a friend who was depressed and suicidal in the first months after his diagnosis.

For a blessedly brief time, I knew what it was like to have severe manic/depressive episodes. I understood the spark of brilliance you feel when you're manic and then, the intense shame when depressed... and afterward wondering what is you and what is simply a combination of chemical reactions in your brain.. and you miss the spark of brilliance and wonder if your friends will still like you without it.

And you totally miss the fact that you ARE brilliant and your friends love you - no matter how you are doing. I understand how this could have been so unbearable - so like a fire that you would do anything to escape it. 

Between our physical challenges and non-motor challenges and the added complications of medicines which influence our brains and, at times, our behavior, and the ups and downs of our dopamine levels, it isn't hard to see how people with Parkinson's can be at higher risk for suicide.

Because of the shock we all feel over Robin Williams' death, many people are sharing phone numbers of suicide hotlines. This is good. For those of us with Parkinson's disease, I'd like to share a couple more resources:

Parkinson's Disease Foundation has a PD Helpline - 1-800-457-6676 or email at info@pdf.org.  

Patients Like Me (www.patientslikeme.com) is an internet support group which is so, so much more. We keep track of our treatments and our symptoms. We are encouraged to share our data and to look at the data that other patients share. 

In Colorado, there is the Parkinson's Association of the Rockies at 303-830-1839 or www.parkinsonrockies.org.

Email me through my website. I will always listen. I am definitely not a substitute for medical help, but I will listen.

Oftentimes, simply (okay, maybe not always simply) getting our medications adjusted and balanced is enough to really make a difference with these issues of depression and anxiety. Always, always check with your neurologist if you or a family member with PD are having any of these challenges.

We also seem to be at higher risk for... creativity, artistic ability, and imagination. In order to stay healthy after the meds are in balance and your PD is stable, don't forget to exercise, dance, read, visit with friends, make new friends, continue learning in whatever way you can, and laugh. 

Laugh. I can't help but think Robin Williams would have eventually come up with some marvelous comic routines around his Parkinson's disease. I'm sure he would have been totally brilliant. Now? We'll just have to do it for him. We can be brilliant, too. 

Stem Cell Story

It was a strange time to talk about stem cell research. We were at a post funeral reception in one of the most beautiful gardens I have ever seen outside the city's Botanic Gardens. I knew only a few family members, who were all busy greeting people, so I found a place to sit and tried to make light conversation with the person next to me.

What do you talk about after funerals with people you've never met? The obvious answer is, you talk about the deceased. How did you know him? Wasn't it a beautiful service? And then you share a memory or two in hopes it will spark something and your small talk won't fizzle. 

This time it was a challenge. The woman I spoke with didn't know the man who had died or his family, whom her husband had known growing up. I was definitely starting to fizzle when she mentioned her husband has Parkinson's disease. Imagine my relief! That doesn't sound right, but at least it gave us something to talk about.

I was even more excited when she told me he had participated in a study on stem cell treatment soon after he had been diagnosed - years ago. I asked if I could talk with him. She agreed and led me over to where he was having a smoke with friends. What he told me was impressive. The study had been done through the University of Colorado with private funding. This was during the Bush years and the moratorium on federal funding of stem cell research.

He has never been on medication for Parkinson's and has only the occasional tremor when he is very tired. Otherwise, he's fine.

I didn't have time to ask any more questions. It was a funeral reception, after all, and I didn't want to take up too much of his time. I have a whole list of things I'd love to ask, such as:

Did this involve brain surgery? What were his symptoms before the treatment? How many participants had good results? Did he, or does he use any alternative remedies to help with his Parkinson's. I wanted to ask him about one remedy in particular. I couldn't have been sure, but he had the aura of permanent mellow which is often associated with the early and enthusiastic cannabis researchers.

Oh well, I was glad I had the chance to talk with him. I'd love to learn more about past studies in stem cell treatments. I'll definitely be asking my neurologist about this when I go in to see her again. It would be really cool if Colorado was one of the leaders in this research.

If nothing else, we know Colorado will be right in the forefront with cannabis research. If we can't be cured, at least we can be mellow.

New Technology for Deep Brain Stimulation Surgery

MRI Interventions

It's still brain surgery and those are two words I don't like hearing together.

I was talking with Dr. Steven Ojemann, a neurosurgeon at University of Colorado Hospital, about the new ClearPoint MRI platform for Deep Brain Stimulation (DBS) surgery. This technology was developed at The University of California in San Francisco, which is where Dr. Ojemann did his residency. His advisors, Dr. Philip Starr and Dr. Paul Larson, are two of the doctors who have worked on this project and continue to be advisors to MRI Interventions, the company which manufactures this system.

Dr. Ojemann has followed this project from the beginning with great interest and in October of 2013, the system was brought to Colorado and installed at UCH. Since then, Dr. Ojemann has performed DBS surgery on 7 patients with Parkinson's disease using the ClearPoint platform.

In Deep Brain Stimulation surgery, one or two thin metal electrodes are placed in the brain at a very specific target. They are then attached to a computerized pulse generator, something like a heart pacemaker. This is implanted under the skin in the chest. This pulse generator will be programmed and adjusted by the neurologist so the patient can achieve the best relief from their symptoms.

In conventional DBS, a stereotactic frame is attached to the patient's head and then an MRI or CT scan is done with the frame in place so the surgeon can see exactly where the target area is in the brain and plan for the trajectory of the electrodes. Then the patient is taken to the operating room. The surgeon will have to adjust for uncertainties, such as the normal shifting of the brain. To do this, a microelectrode is placed in the brain and used to provide “brain mapping”, recording physiological pattern characteristics to let the surgeon know they are at the target, before the DBS electrode is placed. Sometimes it takes several attempts before the desired target is achieved. The patient has to be awake during this process. They are also required to go without their medication.

Having to be awake during brain surgery is a definite turnoff for some patients. The use of microelectrode recording for brain mapping is controversial. Are the benefits worth the risk? Each time the microelectrode passes through the brain, there is a small risk of intercranial bleeding.

With the new ClearPoint platform for DBS surgery, the patient can be asleep the entire time and they do not have to stop taking their meds. The procedure is done while in the MRI so the pathway of the electrode can be seen in 3D, real time. Ideally, this can allow the surgeon to make adjustments during the procedure so obstacles, such as blood vessels, can be avoided and the electrode can be placed at the desired target the first time.

The advantages seem obvious, but are they?

Dr. Ojemann was quick to say that at this time, we cannot claim the ClearPoint system is better, that it has a better outcome than the conventional DBS surgery. However, the data is favorable and he is impressed so far. This new technology does not eliminate all of the risks. It's still brain surgery.

There have been challenges. In the beginning, at UCSF, part of the procedure was done in the operating room and part in the MRI suite. After initial concerns about infection in this setting, rates have been very low with modifications allowing the entire procedure to be done in the MRI suite.

Another challenge was the magnetic field. Instruments had to be adapted to be MRI compatible. (Okay, I'm trying to write a serious article here, but my imagination is going wild at this point. I'm picturing various surgical instruments flying around the room and sticking to the MRI machine. I'm grateful they've solved this one.) Also, if a patient isn't a candidate for an MRI (ie – someone with a cardiac pacemaker), they obviously are not a candidate for the ClearPoint procedure.

Also, visualization of the target is not the same in each patient. There's iron in our brains and, in some people, this iron is more concentrated in certain areas such as the subthalamic nucleus – which is generally the target. Iron concentration makes it harder to visualize on the MRI. The older we get, the more iron tends to be concentrated in our brains. (This might be why our brains seem a little rusty as we get older?)

All in all, Dr. Ojemann is obviously excited about the possibilities of this new technology. In addition to being useful for people with Parkinson's, there are other applications including treatment for epilepsy, brain cancer – especially deep seated tumors, and surgery for children – who would not be able to tolerate being awake during the procedure. DBS surgery is also used for dystonia, which often has its onset in childhood.

Deep Brain Stimulation is not a cure for Parkinson's disease, nor is there conclusive data to show it staves off the progression of the disease. It's a way of treating Parkinson's which can be especially helpful for those patients who are still getting benefit from the medication, but are having lots of off times. Many of those patients say DBS has given their life back to them. It's not for everyone, but for many people, this has been an amazing treatment.

The ClearPoint technology is an exciting development. The whole ability to create images of what is going on inside our bodies has advanced by leaps and bounds. CT (computed tomography) scans were introduced in the mid 1970's. The first commercial MRI scanner was patented in 1980. Since then, the ability to image the human body has advanced to the point where, according to Dr. Ojemann, they can create a 3D image that is almost like having a specimen in front of you. And, he said, imaging is only going to get better with time.

As he explained this to me, he spoke with a sense of awe and wonder. At the same time, he said he hoped that 5 years from now, the treatments for Parkinson's will be even more advanced, targeting the PD at its source. He also hopes there will be a new treatment will not require brain surgery.

It was my turn in feel the awe and wonder. Even brain surgeons can hope they won't be needed.

Dr. Paul Larson discusses the ClearPoint System's ability to allow a surgeon to perform only one penetration to the brain for electrode placement in deep brain stimulation surgery. Please LIKE this video!