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!

Managing our PD Treatments

The challenge of managing Parkinson's disease - written for PhRMA Conversations

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

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

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

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

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

So what can we do?

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

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

How normal do I have to be, anyway?

The PD We Don't See

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

— Jodi Picoult

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

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

Here is the link to the video:

The PD You Don't See

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

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

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

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

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

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

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

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

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

“The most wasted of all days is one without laughter.”

— E. E. Cummings

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.