For more than a century and a half after Dr. James Parkinson’s original description, Parkinson Disease was a “faceless” disease, while other devastating diseases were popularized when famous figures contracted them. For instance, Polio, common in the first half of the 20th century, afflicted President Franklin Roosevelt and other well-known public figures. Amyotrophic Lateral Sclerosis, a relatively rare disease, became known to the world after being contracted by Lou Gehrig, the famous baseball player. Humanizing these diseases helped with fundraising at the grass roots level as well as at the National (NIH) level. While Jerry Lewis did not have Muscular Dystrophy himself, his dedication to fundraising for this condition had a huge impact for many years. There is no doubt that being able to associate a well-know face with a disease, either a sufferer or a champion, is helpful in kindling research interest and funding. Parkinson Disease had no such “face” until recently, despite being relatively common.
Today, however, most people in the U.S. have heard of Parkinson Disease due to the very open public appearances of popular figures such as Michael J. Fox and Muhammad Ali. PD has a “face”, now. And that face has been responsible for dramatically increased research and program funding at both the academic level and from pharmaceutical companies. As a neurologist who specializes in PD, I can’t tell you when we will finally discover the cure for PD. But what I can tell you is that over the last 30 years or so we have gained a tremendous amount of knowledge about Parkinson Disease. Just as PD has been given a “face” for the public to appreciate, it has also been given a “body” for physicians. We now know that PD is terribly complicated, as is the PD patient. It turns out that the whole brain is affected by PD, not just the Substantia Nigra. And it affects not just the brain, but also the stomach, the colon, the heart, the blood vessels, the skin and other organs. PD affects not just movement, but thought processes, memory, self-confidence, relationships, mood, motivation. Whereas scientists used to think it was only rarely genetic, we now know that perhaps 8% or more of cases have some genetic component. Further, we have identified potential harbingers of PD that may precede the motor symptoms by 10-20 years, such as loss of sense of smell, sleep disorders, and constipation. Vigorous exercise and rehabilitation therapy, previously only a “suggestion” for PD patients, has been shown in several well-done studies to have significant benefits specifically for people with PD. New therapies such as longer-acting medications and a form of intestinal gel are likely to be approved early in 2014. A once-a-day patch for PD was released last year. Gene therapies and stem cell therapies, while still far off from FDA approval, are being vigorously investigated.
Without the “face” of PD provided by Muhammad Ali and Michael J. Fox, both sufferers as well as champions of PD, I have no doubt that the “body” of research into a cure and further treatments for PD would be far behind where it is today.
I would like to applaud the brave members of the PD community here in Sarasota who have allowed Neuro Challenge Foundation to tell their stories and use their photographs to “get the word out” about all of the high-quality and innovative programs that we have pioneered over the years. While I am very encouraged at how much Parkinson Disease seems to be recently holding the attention of the nation, thanks in large part to Mr. Fox’s return to television, I feel the need to point out that NCF has been doing a fantastic job of “Thinking Globally, Acting Locally” for years now. We take as a measure of our success that quite a few other organizations have copied our programs. We have robust programs that help our patients and their families with a more palpable, realistic and helpful approach than ever before. And we could not have done all of this without people like Wendy Tilles, Jeff Torborg, Dick Williams, Michael Gilkey, Dr. Bernie Feinberg, and many, many others who have opened up their lives to us so that we could put a local “face” on Parkinson Disease.
For more Parkinson’s answers and information, visit:
Dr. Sutherland’s website: www.parkinsonsclinic.com
Dr. Sutherland’s facebook: www.facebook.com/DeanSutherlandMD
Dr. Sutherland’s blog: http://parkinsonsclinic.com/1/feed
This article appears in the Neuro Challenge 2013-14 Annual Guide to Services.
While in Neurology residency at University of Florida, I was fortunate to be exposed to a wide range of academic clinics and academic clinicians. I had many outstanding mentors and took away pieces and snippets from each of them, eventually developing my own sense of what constitutes excellent patient care. One clinic in particular left a huge impression on me – the Dementia clinic run by Dr. Kenneth Heilman. Patients were evaluated in a comprehensive manner, by a team made up of different specialists from widely different fields that all had some bearing on one patient or another. After exhaustive consideration, patients left at the end of the visit with a plan that addressed all aspects of their lives, including medicines, medicine interactions, lifestyle adjustments, caregiver interactions, rehabilitation options, prognosis, marital counseling, genetic counseling, and further diagnostic testing when appropriate. The end result was a satisfying experience for the patient and their family, with some real answers to questions, many of which they did not realize needed to be asked.
After moving to Sarasota in 2002, I realized that there was a large population of people with PD who were “underserved.” By that, I mean that they were getting adequate advice for the most part about medications, but the “elephant in the room” that was being ignored was the other, non-pharmaceutical, aspects of care that, in fact, often have more impact than the drugs. After years of diligent effort and attention, and with help from colleagues and friends, The Southeastern Center for Parkinson Disease became a reality. Originally intended to serve patients in Sarasota and Manatee Counties, our reputation for excellent, personalized and comprehensive care has grown in leaps and bounds. Today, we draw patients from all over Florida, New England, the MidWest, and the South, as well as from the Caribbean. The dream of creating a comprehensive Parkinson Disease center outside of a university environment has become a reality. More important, the wonderful patients that we see are being well-served in all aspects of their lives.
Many patients are interested alternative therapy for medical diseases, with at least 80% of adults taking some form of vitamins, herbal preparations, acupuncture, biofeedback, Tai Chi, Yoga, etc. With regard to PD, data from small studies show that PD patients have improvement in sense of well-being and stiffness with both Tai Chi and Yoga, but no changes in motor performance. Data regarding chiropractic treatment for PD has not been available or reliable.
My approach to PD has always been “as long as it will not hurt you, it’s probably okay, as long as you don’t use it as your sole method of treatment.” By “hurt you” I mean physical damage or injury, worsening of PD, significant pain, or mental/psychological damage. I would include giving false hope or making unfounded claims as being harmful to patients, emotionally, financially, and often physically.
There are clearly some well-educated, conservative chiropracters who offer treatments locally for a variety of well-established conditions. As long as PD patients are aware that there is no good scientific evidence either way regarding effectiveness for PD and they look carefully at what is being offered or claimed by the chiropracter, then they may choose to try it.
Of particular concern, however, is when fantastical, non-scientific claims are being made. These can be found locally as well as nationally. I would caution patients to avoid some treatments in particular, especially those that are invasive. “Functional Cranial Release,” for instance, is a non-scientific and somewhat risky procedure that is being touted as a treatment for just about everything, including PD. It involves a balloon being inserted into the nasal passages, then expanded, then contracted and removed, with claims that it is restoring or correcting cranial abnormalities. It is further claimed that this procedure treats Alzheimer’s, headaches, migraines, ringing in the ears, fibromyalgia, and the list goes on and on. The purported mechanism of patient improvement is by “improving blood flow and oxygenation” to the brain and “releasing nerves.” Patients are reportedly dramatically improved and, sometimes, told they can stop taking their medications. Nasal damage has been clearly documented in some patients who underwent this procedure.
This meets the classic criteria for a scam: unproven claims, lack of scientific evidence, miraculous reversal of degenerative processes, panacea (good for anything), aggressive marketing with glowing testimonials, lack of anatomical/physiological basis in reality. See http://www.quackwatch.com/
To summarize, patients should not avoid chiropracters as a group, but, just as in any profession, there are a few practitioners and treatments who should be avoided at all cost.
The benefits of coffee and caffeine in Parkinson Disease have been explored more and more these days. It has been known for 10 years or more that caffeine seems to lower the risk of getting PD in the first place, but there are some populations who benefit from it even more due to a gene that helps lower risk in the coffee drinker. The mechanism appears to be via the adenosine system; caffeine inhibits the adenosine A2A receptor, which has further effects inside of brain cells. An additional benefit of coffee for PD patients is that, of course, it reduces the sleepiness during the daytime which bothers many PD patients. The apparent therapeutic effects are significant enough that several pharmaceutical companies are trying to develop caffeine-related molecules and there are National Institutes of Health (USA) approved studies currently underway. See links below:
Usually, people don’t think of Parkinson Disease as being related to blood flow, or lack of blood flow, to the brain. However, neurologists have known for a very long time that small strokes in the brain can cause walking and balance problems which may mimic PD. This condition is known as Parkinsonism. The blockage of hundreds or thousands of tiny blood vessels builds up slowly over time and causes dysfunction or death of brain cells. These are akin to “silent” strokes; the person afflicted with them is never aware of any particular event. The end result is slow movement, poor balance, shuffling gait, slow thinking, memory loss. Sound familiar?
We also know that any degenerative neurological condition, such as Alzheimer Disease, Parkinson Disease, or Huntington Disease, seems to progress more rapidly if there is also blockage of the small blood vessels as mentioned above. This is partly the basis for encouraging exercise in people at risk for such diseases. We believe, and studies seem to support, that control of cardiovascular risk factors (high blood pressure, high cholesterol, diabetes) delays the onset and severity of neurological disease, especially in the case of Alzheimer Disease.
In an important new study published in the journal Stroke: Journal of the American Heart Association, researchers from Rush University Medical Center in Chicago, showed that, even in people with seemingly normal brain scans (MRI or CT), there may be small blood vessel blockages seen in the brain at the time of autopsy. Furthermore, they correlated the severity of walking problems with the severity of the blockages. Up to 30% of people with normal brain scans had abnormal blood vessels on autopsy. The implication is that slow movements, decreased balance, and walking abnormalities may not be “normal aging.” This is similar to what we see with memory loss in the elderly; dementia used to be considered normal aging, but we now know that anything beyond mild memory loss suggests that there is an abnormal process occurring in the brain, such as Alzheimer Disease or other problems.
The main point is that we all need to take care of our cardiovascular health through proper diet, exercise, and getting treated for any hypertension, diabetes, or cholesterol problems.
As neurologists often say, not everything that tremors is Parkinson Disease. Especially if the patient presents in an unusual manner. One of the lesser known and often confusing causes of tremor is dystonia, an increase in muscle tone that is abnormal, often painful, and leads to abnormal postures or movements. A famous British actor recently revealed that he was misdiagnosed with PD when, in fact, he had dystonia of the head and neck, called cervical dystonia or spasmodic torticollis if the head is turning uncontrollably.
This is a common question that comes up in the neurologists’ office, regardless of age of the patient. It arises not just from concern for family members, but also as a matter of curiosity, of explanation.
We used to believe that Parkinson Disease was almost entirely caused by environmental factors. 20 years ago, genetic involvement was deemed to be around 2% of cases or less. Through the advent of advanced and increasingly affordable genetic testing, as well as improved collaboration across the globe, we now believe that genes account for at least 8% of PD, perhaps up to 15% based on more recent data. People with Young Onset Parkinson Disease, those with dystonia early on, and those with symmetric (both sides) findings are probably more likely to have a genetic cause than the more typical patients.
Yes, some environmental factors have been linked to increased risk of PD, such as pesticides, herbicides, fungicides, some heavy metals, and, perhaps, living in North America, but the linkage or direct cause is not as obvious as one might hope. To date, the use of surveys and questionnaires has produced few, if any, clues to the causes of PD.
The virtual revolution that has occurred in genetic testing in the past 20-odd years has allowed us to identify quite a few genes that seem to cause PD, perhaps 15 or 20 genes that are under study, with more being identified at an increasing rate. In a recent interview with Medscape Medical News, Owen A. Ross, PhD, a neuroscientist at the Mayo Clinic said ”The idea that [PD] occurs mostly in a random sporadic fashion is changing.” Dr. Ross was part of consortium of PD researchers who published an online report August 31 in Lancet Neurology. The Genetic Epidemiology of Parkinson’s Disease (GEO-PD) consortium reported the identification of both risk and protective variants in the LRRK2 gene, perhaps the most notorious PD gene both for its dominant inheritance (50% of offspring inherit the gene) and for its association with Sergay Brin, the co-founder of Google who inherited LRRK2 from his mother. Dr. Ross and colleagues found that, while some forms seem to carry increased risk of PD, others may protect against PD to some extent.
Obviously, as in many things, our view of the cause of PD is vastly different than it was just 10 years ago. Hopefully, we will be eventually be able to get a handle on prevention of PD as well as a more satisfying treatment or even a cure.
One of the questions we encounter the most in the PD clinic is “What is my prognosis, Doc?” In fact, it’s rare that a patient doesn’t ask this question. If we could predict the date that someone might need a walker, or a wheelchair, or 24-hour care, that would be very useful to everyone involved. As frustrating as it might be, the fact is that we can only make broad, sweeping statements about prognosis in PD. There are many reasons for this.
Not all PD patients are the same; in fact, the general rule is that each patient is different. In a room full of PD patients, no two will be exactly alike. As we learn more about PD, doctors and scientists are able to see that there is a spectrum of changes in multiple systems, such as memory, motor behavior, tremor, gait, autonomic function, gastrointestinal function, mood, and more. We also are learning that there are multiple causes of PD, from genes to pesticides to vascular changes and who knows what else. The end result is that each case, each person with PD, is unlike the others. Thankfully, however, there is enough overlap to allow us to treat most people.
Another problem that confounds prognostication in PD is that there seems to be a spectrum of rate of progression. Person A might have PD for 20 years and have minimal progression, while person B may progress to the same point in just 5 years. We don’t know why this happens overall, other than to say that it gets back to the issue of multiple causes. For instance, if you were exposed to Agent Orange (an herbicide which has been associated with PD), your rate of progression might be related to the amount of Agent Orange that you came in contact with and how long that contact occurred.
Yet another problem is lifestyle. This is the most potentially modifiable factor, in my estimation. By lifestyle, I mean how you treat your body and mind. Exercise, diet, social interactions, control of vascular risk factors – these are all important. From my experience, patients who exercise regularly do the best in the long run. While this is undoubtedly a physical result, it may also be a mental result as well, in that people who exercise are those who take a proactive approach to their PD. They want to continue to do the things they enjoy in life for as long as possible. I would venture to guess that anyone who reads this would agree that if you had a pair of twin 60 year-olds with PD, the twin who exercises for 40 minutes per day, 5 days per week, is going to have better health and less debility over time than the twin who is sedentary.
So, back to the original question…What’s my prognosis, Doc? The answer is “I don’t know.” I do know that PD is a progressive disease for anyone who has it, but there are too many variable involved for me to predict your individual course, for the most part, and that lifestyle and attitude have a significant impact on the whole process, on the whole person. For the patients who we see on a recurrent basis, it may be more obvious to the doctor as to rate of progression. In that case, the answers may be more concrete, but not always. Studies done with oncologists and their cancer patients have shown that giving a definitive prognosis in cancer (“You have 8 months”) is not helpful, often wrong, and may be counterproductive and anxiety producing.
It’s okay to ask about prognosis and you should ask…just be aware that you probably won’t get a clear, satisfying answer!