Parkinson disease is a complicated medical condition that presents differently depending on the patient. Different populations and environments experience Parkinson disease in strikingly different ways and the one million people diagnosed in the U.S. are dispersed unevenly throughout the country not unlike the physicians who are best qualified to treat them. Unsatisfactory clinical outcomes are everywhere, even among some movement disorder specialists. The obvious reason for this is that the disease is so complex that it’s presentation can be different in a large proportion of the patients in a physician’s practice. For example, on average only twelve percent of a movement disorder specialist’s practice is comprised of Parkinson’s patients. In fact, a consumer advocate website called amino.com
includes movement disorder specialists who treat only one or two PD patients per week. This is not because they are incompetent physicians, but just the opposite, they are sub specialists in other diseases such as Huntington’s, Tourette’s or Dystonia. In addition, not all specialists are alike as some are responsible for the overall treatment of the patient and therefore will be listed as the treating physician by consumer advocate sites while others may have lower ratings that do not reflect the number of patients that they actually consult upon over the course of a year. Do your homework and ask for advice about who is the best doctor for your particular situation. Look here
to see a list of the top Florida doctors ranked by patient volume.
What we know for sure is that high rates of successful clinical outcomes correlate positively with high PD case volumes. It makes sense that the doctor will deepen his or her level of experience as the number of cases he or she treats increases. Commonalities come to light, even in some of the more rare presentations of the disease. Extensive continuing education is, of course, a given. We need to find more ways to support high volume, specialized clinical Parkinson practices to serve those patients who require diagnosis and maintenance treatment that includes ParkinsonNet-style multidisciplinary services. As the founder of Parkinson charity, Neuro Challenge, I see humanitarian endeavors coupled with community and business collaboration as the solution that can make this happen right now.
Today, multi-disciplinary Parkinson care from Centers of Excellence is available to about ten percent of the total Parkinson population. Another ten percent of the population is serviced by high volume, specialized physician practices like ours. The remaining 80 percent are managed by movement disorder specialists, general neurologists, internists and general practitioners. Some of these physicians are well versed in the disease but many are not.
Multidisciplinary, high volume, specialty Parkinson clinics require public and private financial support if they are to continue to provide excellent care and serve as examples for other clinics and local charitable organizations who want to improve PD care in their communities..
Eight hundred thousand PD patients in the USA do not have access to the quality care we have in Sarasota, Florida. Our view of our ability as just regular people is far too limited to allow us to believe that we have the power to affect disease and that we can allow that power to transform the way we treat disease. In reality, all the power is ours.
By Doreen T. Sutherland, MBA
Founder, Neuro Challenge Foundation for Parkinson’s
Dr. Sutherland answered questions about Parkinson's Disease in the February 2016 issue of SRQ Magazine, written by Phil Lederer. To read the complete article, entitled "Parkinson's Unpacked -- a look inside the twin treatments fighting Parkinson's today," click here.Here's an excerpt:How can you define success with a progressive and degenerative disease like this? Sutherland:
There are a number of ways you could look at it. One is if somebody has regained skills or confidence in things that they had given up on before. For instance, a lot of people in the Sarasota area like to golf and we’ll have people who give up golf. After they’ve been treated properly with medications and therapy, a lot of people can go back to doing that. There are a lot of things that people will throw up as roadblocks to their own functionality. We can help reduce those roadblocks or even eliminate them and get them back to feeling like they are able to live a more normal life. Rogers-Brunner:
I would have to agree with that. It’s very personal for everybody. You know what’s important to them, and if you can help them achieve whatever it is that’s important to them, then that’s success. What resources are available in this area, and what would you like to see brought in? Rogers-Brunner:
Sarasota is the epicenter for Parkinson’s support and everything that we do here is just amazing to me. Sutherland:
It’s exploded in the last 15 to 20 years here in Sarasota. Right now, we have a number of support organizations that are available. I work for Neuro Challenge Foundation. There’s also Parkinson’s Place across town, and there’s some smaller organizations, but those are really the two main places in town where we have some sort of social support mixed with some more of the educational information. That’s really a very solid start. If you look all over the nation, we probably have the most developed Parkinson’s system in terms of a county or a region anywhere in the nation.
There are many things to consider when choosing the physician that's right for you. You might want to be part of a research trial. Perhaps you're looking for someone who is an expert in programming your DBS (Deep Brain Stimulator.) Maybe you need a second opinion or you've yet to be diagnosed. It's important to know that your doctor is well versed in "everything Parkinson." Generally those physicians who devote all or a large portion of their practices to Parkinson treatment know all the intricacies of the disease. What's more, they maintain relationships, with other specialists and community resources that you may benefit from as well.
Here's a link
to a list of the Florida doctors with the highest Parkinson patient volumes that many of you have asked for.
Doreen T. Sutherland, MBA
Dean P. Sutherland, MD, PhD, Founder of the Southeastern Center for Parkinson Disease and Medical Director for Neuro Challenge Foundation for Parkinson's
in Sarasota, Florida presented a session for 1,600 Parkinson patients and their caregivers live and via webcast today at the Michael J Fox Partners in Parkinson Conference in Tampa on the topic of "What to Expect At An Appointment With A Parkinson Specialist." Nearly two additional hours were devoted to answering questions from patients from around the area. Robert Hauser, MD, MBA, Professor of Neurology and Director of the USF Health Burd Parkinson's Disease and Movement Disorders Center of Excellence
and Christopher Hess, MD, Assistant Professor of Neurology at the UF Center for Movement Disorders and Neurorestoration
presented the latest in Parkinson research.
Partners in Parkinson's heads to Tampa to provide a full day of educational seminars and panel discussions. Dr. Dean P. Sutherland will be a presenter at the conference, providing information about what to expect and how to be prepared for your doctor's appointment. There's no one better to hear this information from! He sees more Parkinson's patients than any doctor in the region!
Much research has been done on the relationship between specialization, high volume treatment and improved patient outcomes. This research shows that doctors with the most experience in treating your condition tend to have the best results. Dr. Dean P. Sutherland, MD, PhD at the Southeastern Center for Parkinson Disease and Sarasota Memorial Health Care System treats more patients diagnosed with Parkinson’s Disease annually than any other doctor in America
according to records released by Medicare and insurance company data compiled by Amino.com
between 2012-2015. Patients with Parkinson’s Disease deserve experienced, innovative and compassionate care. Support Dr. Sutherland’s Parkinson work at neurochallenge.org
or call 941-926-6413 for more information.
1. It has been said that accurate genetic diagnosis and treatment will occur along with increased knowledge of the genetic code. Many of you want to know the probability of passing PD along to your children and grandchildren. The vast majority of people with Parkinson’s do not have mutated genes and therefore do not pass them along.
2. Evidence suggests that exposure to some pesticides and solvents, farming, rural living and well water is linked to Parkinson’s disease.
3. The ingestion of cocoanut oil, cinnamon, Omega-3 fish oil,pure oxygen, Vitamin C and E, Glutathione, CoQ-10, nicotinamide, riboflavin, acetlyl carnitine, lipoic acid, St. John’s Wort, Ginko Biloba, creatine, and Alkaline water, have not yet been shown in scientific, peer-reviewed studies to be beneficial to Parkinson’s patients. In part, this may be due to inadequate research, so we encourage you to participate in trials where available.
4. Don’t be vulnerable to clinics claiming to provide stem cell-based cures. This therapy is still years away. Again, participate in trials when they become available.
5. The largest clinical trial of the three types of Parkinson drugs, studying 1,620 patients, finds Levodopa therapy is the most effective initial treatment. Read: Newer is not always better.
6. The use of a placebo in a clinical trial can affect how the participant perceives the trial drug’s effectiveness.Called the “lessebo” effect, patients who perceive the likelihood of receiving a placebo as less than average judge the effects of the trial drug to be more effective (and vice versa). This supports the idea that, in the early stages ofParkinson’s, the more a patient believes a therapy will work the more he or she will perceive that it is working. Maybe that’s why people use glutathione regardless of evidence to the contrary?
7. Cardiovascular problems may play a role in increasing the rate of motor disability in PwPs. The negative effects of elevated blood pressure on neurodegeneration, for instance, are well documented in dementia and the same may prove true in PD. Improving your cardio risk factors could be a unique approach to modifying PD and reducing gait and balance difficulties, researchers say. Cardio problems often go hand in hand with PD and a cardiologist should be consulted when necessary.
8. Depression is very much a part of the disease process of Parkinson’s and is not to be taken lightly by either the caregiver or the patient. Sometimes it is a precursor to other symptoms but it can appear at any time. In fact, more than half of PwPs are thought to experience depression at some point. Depression is characterized by a change in the way you interact with friends and relatives, a disinterest in things you once enjoyed, a feeling of hopelessness, fatigue, losing or gaining weight, sleep changes, anger, self loathing and reckless behavior. You may have only one or two of these symptoms and if you do, I can assure you there is no shame.It’s not your fault and it isn’t indicative of some personal failing. Talk to your doctor immediately because he or she can prescribe a number of medications and treatments that will provide relief. A neuropsychiatric specialist can also be consulted.
9. Anxiety is characterized by feelings of panic, fear or uneasiness, problems sleeping, cold or sweaty or numb/tingling hands or feet, shortness of breath, heart palpitations, an inability to be still or calm, or dry mouth. Again, your doctor can help you manage your anxiety.
10. In a 2007 study published in Movement Disorders, researchers found that pulmonary dysfunction occurred in patients with PD, even in early stages. Women with rigidity were particularly susceptible. Upper airway obstruction may be significant in PD and can worsen during sleep resulting in sleep apnea. Tests that measure how well your lungs are functioning, breathing exercises and regular chest physiotherapy is recommended for all PwPs. Levadopa is likely to reduce breathing difficulties in some but not all patients. A pulmonologist can be consulted if necessary.
Written by Doreen T. Sutherland, MBA
After many months of waiting, two new medications have become available to people with Parkinson's disease. Rytary is a new slow-release levodopa formulation that will be very helpful to patients who are taking medications multiple times per day. For instance, some people have to take Sinemet every two hours or so, up to seven times per day. With Rytary, they may be able to take it three times per day, instead.
DuoDopa is a levodopa intestinal gel system, that will also help to smooth out the "on and off periods" and dyskinesias that some people have with taking Sinemet. This may be an alternative to DBS in some patients with advanced PD.
Dr. Sutherland will be speaking at the Suncoast Annual Parkinson Symposium on January 31, 2015 in Sarasota, FL. This symposium is the largest in the southeast and has welcomed distinguished lecturers from across the country and the world for more than 15 years. This year's symposium is sold out once again but you can visit www.neurochallenge.org for other engaging Parkinson events throughout the year.
an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.
A diagnosis of Parkinson’s disease can create a fear of the future that is difficult to cast aside. For example, a patient who has lived comfortably with the idea that what they have is essential tremor is thrown into turmoil on the day that he or she hears, once and for all, that what they are actually experiencing are the symptoms of PD. It makes one circumspect because the prognosis is one fraught with much difficulty. A PD diagnosis makes us different from who we were just moments before we hear it. Or does it? Does it have to change us, completely?
Very often it is the feeling of losing control over one’s life that brings on the fear. There is now the possibility of debilitation in the future that we had not forseen. Perhaps a wheelchair or a walker will be needed at some point down the road. It’s important to keep in mind that this is only a possibility and not a reality. You must act with confidence to do the things that will keep the negative outcomes at bay. The importance of exercise cannot be overstated. Take brisk walks three times a week, engage in an exercise class that suits your ability level, use rehabilitation like LSVT-BIG or LOUD and their follow-up programs. By all means, move around! If you are doing these positive things, then you can also spend time with family, go out to dinner, movies, working, gardening – not dwelling on what “might” happen. Because it might not happen.
A chronic illness can change our self image and suddenly we find that we are telling ourselves the story of how we cannot be who we once were. Clearly the solution is to rejoice in who we are today. Relish everyday experiences, big and small.
Many people have a great fear of becoming a burden to their family or friends. Sometimes the journey is difficult. Yes, this is true. It is also true that it is the journey that makes us who we are and enriches our lives, if we will only let it be so. You are to be cared for AND you are to care for someone else. Don’t forget that part of the bargain. Life is a journey for your caregivers and family, just as it is for you. Both of you will benefit from your time together, if you allow yourself to be open to this. Take the time to attend an engagement or support group if one is offered in your community or start one yourself.
Many people feel the sting of embarrassment or stigma associated with Parkinson’s. It’s important to remember that the burden of hiding the disease is much greater than living with it openly.
When I talk about fear, I do not minimize the difficulty that exists in accepting that you cannot walk as you once did, or button your shirt or recognize your face in the mirror. Fear is the most debilitating of all emotions because it erases anything that comes before it and makes the future untenable. When we make decisions based on fear – especially avoidance – we are weighing ourselves down. We should notice our negative feelings of guilt, fear, anxiety, etc. and allow them to pass through us, not bottle them up. A good psychotherapist can sometimes help with giving us the tools we need to do this. We must not react to fear but rather act on the facts of the situation. This, of course, takes practice. Afford yourself some personal control by doing anything that you can to make your situation (even a little bit) better. There is always something that can be done. Work to find meaning in everything because there is worth in everything and everyone. Especially you. And there is always a silver lining.
Written by Doreen T. Sutherland, MBA