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.

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!

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

Did you take your meds? A short history

 This is really two blog entries in one. It is a review of a new pill dispenser called E-Pill, designed by a Parkinson's patient to help keep us all on track with our meds. First, however, I thought it would be helpful to have a little history on this subject. If you want to jump directly to the second part, go ahead. I promise I won't be offended. (But just think of what you could have learned)

Everyone knows the best way to treat Parkinson's is to actually take your medication on time. This is easier said than done. Ever since the first physicians wrote prescriptions for carbidopa/levodopa in cunieform, they have tried to find creative ways to make sure their patients remember to take their pills. At the same time, patients were working on another development: the excuse for not taking their pills.

The earliest known method involved timing each dose with the length of time it took for an oil lamp to burn. This wasn't totally reliable.

Doctor – So, Esther, how's the shakes? (This was in biblical times before Dr. James Parkinson was born.)

Esther – Not so good, doc. I'm shaking so hard I almost burnt the house down trying to light the Sabbath candles.

Doctor – Are you taking your medication whenever your lamp runs out of oil, like I told you to?

Esther – I tried. The lamp ran out three days ago and I'm shaking so hard I can't light it again.

Next, they tried an hour glass.

Doctor – Thomas, you don't look so good. Are you using the hour glass Brother Luitprand sold you to tell you when to take your pills?

Thomas – I tried, but the sand ran out while I was out on my boat.

Doctor – But Thomas, this is portable. You should have had it with you.

Thomas – I know, but my wife was using it to time her baked chicken.

In the middle ages it was popular to time medications with the ringing of the church bells for the monastic hours. It worked fairly well until the time of the great plague. Then the funeral bells rang all day and no one ever knew what time it was and didn't care, anyway.

The pill organizer was invented by a distant ancestor, Zerviah Meletivea Myers, whose husband, Bill, was always forgetting to take his Sinemet. She thought it would be helpful it he had a way to carry the pills with him. She even made it pretty with an embroidered insert in the lid. Bill thought it looked frilly and hid it in the bottom desk drawer with the last years' seed packets. He told his wife it had been stolen.

The most effective method of reminding patients to take their medication was called, The Spouse. It involved enlisting the husband or wife of the patient to confine their conversation to these few words, “Have you taken your pills yet?” This only worked if the patient had a spouse and even then, the spouse was at risk of if he/she “asked one more time”. In worst case scenarios, the effects could require prompt medical attention or a divorce lawyer.

Of course the spouse was at risk either way. When the patient forgot to take his/her pills, the spouse endured the consequences of their freezing, shaking, rigidity, and needing a piggy back ride home from the fields.

Fortunately, in our modern times we have developed ways to make sure we never forget to take our medication.

Next:  A review of the E-Pill Dispenser and Alarm

Did you take your meds? - a review of the E-Pill Dispenser and Alarm

 Fortunately, in our modern times we have developed ways to make sure we never forget to take our medication. Here are the ways I have found which are effective for me:

Cell phone alarm clock – I can set this to any time during the day and set the particular music for the alarm. This is high tech. I have my phone with me all the time, so I always hear it.

The downside is, sometimes I simply turn it off and forget to go get my meds. Later, as I start to feel wonky, I can't remember. Did I take the pill or not? This is normal, not dementia.

E-Pill Dispenser – This is something new. One of the cool things is it was designed by someone who actually has Parkinson's disease. I assume this person had already tried many of the other methods I listed here.

Cool thing number two: This is a pill organizer and medication alarm all in one. When the alarm goes off, the medications are right there.

Cool thing number three: If I don't turn off the alarm and take my pill, there will be a flashing, “Missed dose” sign on the clock readout.

Since using the E-Pill Dispenser, I haven't missed any doses. This might have something to do with my cell phone alarm still going off, one minute after the E-Pill alarm. It also might have something to do with my spouse coming in and asking, “Have you taken your pill?”, ten minutes later.

Out of the three methods I am currently using, I would say the E-Pill Dispenser is the one I would recommend. It is small enough I can carry it in my purse, yet large enough to hold a week's worth of meds. The alarm isn't nearly as pretty as the cello music which plays on my cell phone alarm, but it certainly gets my attention. The alarm times are very easy to set and easy to read. The alarm will continue for 4 minutes before stopping and activating the “missed dose” sign.

If I were able to make a small improvement, I would ask for an automatic snooze period, after which the alarm would go off again. The “missed dose” readout is easy to miss. I also like the music on my cell phone alarm. When the beeping of the E-Pill goes off in a store or airport, I tend to assume it's just part of all the other background noises. Then my daughter nudges me and says, “Mom, it's your alarm.”

There's nothing wrong with the beeping alarm. I just have to get used to it. For now, I have my cell phone alarm still set as a back-up. Part of the key for me is not to rely soley on one method of remembering.

There will never be a perfect way to ensure we take our meds until someone invents a pill organizer with a GPS and the ability to find us wherever we are and insist we take our meds while they watch.

Oh, right. That's already been done. It's called “The Spouse”.

I'll take the E-Pill.

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www.epill.com

New Health Plan

It's been 6 months since I decided to change the way I eat. At the time, my body was in total agreement with me. About a month ago, that changed.

The Left Brain started questioning the expense of going to all natural foods. The Hypothalamus complained it wasn't getting the rewards it expected from the new diet. The Occipital Lobe had seen the large chocolate bar in the refrigerator. The Broca's Area said, “what the hell” and convinced the Amygdala and the Motor Cortex into picking up the chocolate.

This was just the beginning. The Hypothalamus wasn't content with just one chocolate bar. It insisted on chocolate chips and the occasional chocolate ice cream. The Nucleus Accumbens kept quietly insisting they deserved these treats. After all, they had worked hard for them. Soon my brain was ignoring the needs of the rest of my body and demanding more for itself.

Fortunately, there was still the Frontal Lobe to bring some intelligence into the discussion. It reminded them of the decision which had been made for the good of the whole body. Spending now would save money in the long run. It was okay for the brain to have to sacrifice some pleasures for the sake of health.   After all, the brain cannot survive without the body.

The Corpus Callosum announced there were serious issues in communication.

Systems began to break down. The Autonomic Nervous System began relaying messages to all parts of the body, spreading fear that the Frontal Lobe was trying to push a health plan which was too expensive and would take away all the good things in life. The rest of the body was confused. They were supposed to believe and trust in their Frontal Lobe, weren't they?

The Left Leg sided with the Nucleus Accumbens. The surge in dopamine after a sugar binge helped to make sure it could walk straight. The Right Leg accused the left of giving in to addiction. Arguments started between various groups of Organs and Muscles. There were debates about whether or not the plan was actually healthy and worth the cost. After all, each part should be able to pull themselves up by their own synapses – or tendons or blood vessels or other thingies, right?

I'm not sure what would have happened if I hadn't finally had a Gut Reaction and decided enough was enough. Worst case scenario, parts of the brain may have insisted on a governing body shutdown.

Thankfully, it didn't happen. I took charge and let the rest of the factions know who's boss.

Quiet Heroes

“People always ask me where I'm from,” he announced. “I tell them I'm from outer Mongolia, but actually I'm from Minnesota.”

Chris and I were out for a walk one day. Okay, Chris was walking and I was on my scooter. It was the scooter that made the man pull up next to us on his bicycle and chat for awhile. He had two brothers, he told us, both with Parkinson's disease, and they were living with him. He was wondering if either of his brothers might be able to use a scooter.

When he found out I also had Parkinson's, he began asking me all sorts of questions and we compared medications, dosages, symptoms, side effects, and more. We learned we have the same neurologist. He was dealing with much more than I have as both of his brothers were at the advanced stage of the disease. They had feeding tubes. Sometimes they had hallucinations. I got the feeling his daily bicycle ride was how he kept sane.

Over the next weeks, we saw him now and then. He always stopped to chat. We never even exchanged names. I thought about him a lot. I'm not sure how old he is, but my guess would be around 70. Being the sole caregiver to two people with advanced Parkinson's couldn't be easy, even if they were his brothers. 

As we chatted, we learned a little more about him. His accent was intriguing, which is when he told us he was from Minnesota. “We grew up on a farm. Our family is Norwegian. That's why I talk like this.”  We also learned that one of his brothers had been married; he and his other brother were bachelors.

On the way home, Chris looked thoughtful. Finally, he said, “They really exist. I thought it was just a myth.”

“What?”

“Norwegian bachelor farmers. I thought they were just a Garrison Keillor myth, but they really do exist. We've met a REAL Norwegian bachelor farmer!”

(Cue the Powdermilk Biscuit song)

We didn't see him for awhile and wondered if he was okay. Then, a couple of days ago, he was out riding his bike again. He told us he'd had back surgery and then one of his brothers had passed away. He's still taking care of his other brother. The surgery was obviously successful. He didn't take much time to visit before he was off riding again.

It's always good to see our Norwegian bachelor farmer. He's one of the many quiet caregiver heroes who makes such a difference in the lives of people with Parkinson's disease.  It's a privilege to know him.