Robin Williams and Parkinson's Disease

Posted on by Terri Reinhart

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  

Patients Like Me ( 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

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

Posted on by Terri Reinhart

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.


Small Pharmaceutical Company has Big Ideas

Posted on by Terri Reinhart

Parkinson's disease challenge:

OFF times – when for reasons unknown, our Parkinson's medications stop working and our worst symptoms suddenly decide they're taking over.

OFF times can be like entering an alternate reality. For me, it means suddenly slowing down until I feel as though I'm moving through deep sand at a beach, but with my whole body. Everything slows down, even my speech and my thinking. At my worst, I also tend to twist up with my dystonia, making it almost impossible to walk or do anything.

If this happens as my meds are wearing off, that's one thing. It may mean my medications need to be adjusted. Sometimes, however, it just happens. Maybe I am extra tired or stressed for some reason. Fortunately, I don't go through this often and when I do, it's just annoying. For some people with advanced Parkinson's, the OFF times happen one or more times each day and are severe enough to limit their activities.

Fortunately there's a possible solution in the works for those people with advanced Parkinson's disease who have severe OFF times.

A small Canadian specialty pharmaceutical company, CYNAPSUS, has a drug in the works which is close to being ready for market. It's not a new drug, but a new way of delivering a drug which has already been proven effective. This is APL-130277, a form of Apomorphine delivered through a thin strip, like a Listerine® breath strip, but under the tongue.

This is a rescue treatment for those intermittent “Off” episodes, not an alternative to our L-dopa use for daily symptoms. It is used when someone needs to get that boost of dopamine – in this case it is a dopamine agonist – in order to get moving quickly. The medication arrives in the brain and gets to work very quickly.

So, why is this important? The only form of Apomorphine available now is by injection - Apokyn. If you haven't heard of it, it's because it's not used a whole lot. There are downsides to this treatment. I can't imagine attempting to give myself an injection when I'm in this OFF state. I'd probably end up injecting someone else in my family. I am not fond of injections, especially not when my muscles are extremely tight – ie: when I'm in an OFF state.

More about the drug in a moment, but now a word about CYNAPSUS.

CYNAPSUS is a specialty pharmaceutical company. It's small – small enough that their CEO, Anthony Giovinazzo, agreed to speak with me over the phone. Their work is all in research and development. This is a new model in the world of pharmaceuticals which is becoming more popular. I won't claim to understand all the ins and outs of this, but one thing became clear as I listened to Anthony speak about the company. He is passionate about his work.

Anthony Giovinazzo made a choice in 2009. He could either take a job with a larger company and make a lot of money or he could join Cynapsus (then a failing company), turn it around and put all his and the company's efforts into APL-130277. A small research and development company does not have any revenue. They depend on grants and investments from shareholders in order to fund their work. Cynapsus is a publicly traded company in both the US and Canada.

Sometimes, they also depend on someone who is passionate enough to spend money from their own pocket. This is what Anthony Giovinazzo did to get his project off the ground. He knew the need was there for this type of drug and he was determined to see the project through. So he funded the initial research and patent applications as well as the search for large pharmaceutical companies to be approached. They initially weren't interested. At that point he transferred the project in late 2009 to Cynapsus and accepted a very low salary to be its CEO and drive the project forward.

Then, in 2012, the research team at Cynapsus obtained a significant Michael J Fox Foundation For Parkinson’s Research grant to continue their work. The MJFFPR recognized the value in Anthony's project. If you click on the link and read the partnering paper, you will have a clear and concise overview of the company and the drug.

Now, back to APL-130277. It's not totally without challenges. Historically, Apomorphine has been used for such purposes as treating behavioral issues in animals and as an emetic for poisoning victims. This last quality is an absolutely wonderful quality if one needs to throw up quickly, however, it isn't exactly the most desired result when taking it for Parkinson's. To counteract this, the drug is given with an anti-emetic, at least at first. For many patients, the anti-emetic can be stopped after a short period of time, usually 30 to 90 days.

Apomorphine is a unique member of the dopamine agonist family of drugs. Although it has its challenges as described above, it does not seem to have some of the challenges of other dopamine agonists, such as obsessive compulsive behavior. Patients who have difficulty with this family of drugs may be able to tolerate Apomorphine. It's something to be aware of as the research continues.

Cynapsus will conduct more clinical studies starting this month (July 2014) with a 16 patient pilot study to determine proper dosage. The data from this study will help drive the decisions for dosage for another, larger study for patient efficacy, planned to start in December 2014. (Efficacy – the ability of a drug to produce the desire therapeutic effect.) An even larger safety study is planned for 2015.

If all goes well, there could be a medical solution which does not include needles for people with advanced Parkinson's disease who go through these severe OFF times every day. It's looking very promising. Cynapsus is considered a company worth watching by investors and investment analysts. Michael J Fox Foundation gives them their thumbs up.

For me? These last two articles have been good for me in that I have had to explore and research those areas which I generally try to avoid completely. It would be nice if a good diet, exercise, and a positive attitude – all of which are extremely potent remedies – would be all that is needed for anyone with progressive disorders. There are people who will only receive the help they need through these new breakthroughs with pharmaceutical drugs or DBS surgery. Someday, it might be me.

I will continue to push for exercise, healthy diet, humor, dance, and all sorts of positive ways we can learn to live with our Parkinson's disease. Because it's not always enough, I'm grateful for people like Anthony Giovinazzo and his team who have the passion to work in the difficult, ever changing field of pharmaceutical research and development.

New Technology for Deep Brain Stimulation Surgery

Posted on by Terri Reinhart

MRI Interventions

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.

Managing our PD Treatments

Posted on by Terri Reinhart

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?


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