Now you can be the first to get Dr. Sutherland and Teepa Snow's video,
Practical Tips for Better Living with Parkinson's Disease delivered to your home anywhere in the world. Click here to order: https://www.pineseducation.org/product/practical-tips-for-better-living-with-parkinsons-disease/
Did you know that you can actively impact the course of Parkinson’s disease (PD)? What you do and what you know can positively affect the quality of life for you and the person living with PD.
Join neurologist Dean Sutherland, MD, Ph.D., and occupational therapist Teepa Snow, MS, OTR/L, FAOTA, for two engaging and information-packed workshops. This comprehensive Parkinson’s disease “toolkit” will leave you informed, inspired, and ready to practice your new skills for a better life with PD. Workshop #1 with Dr. Dean Sutherland
Who gets Parkinson’s disease, and how is it diagnosed?
What are the signs and symptoms?
Medications and treatments that can offer relief
How exercise and support groups can help Workshop #2 with Teepa Snow
After the diagnosis: What you choose to do matters!
What helps, what hurts and what gets in the way?
Using rhythm and movement to overcome freezing and rigidity
Using visual and physical cues to guide and model care routines
Here's a link to a sample video from the package that you'll get:https://www.pineseducation.org/product/practical-tips-for-better-living-with-parkinsons-disease-online-video/
Don't wait! This is a great learning tool for caregivers, patients and medical professionals. If you have someone living with Parkinson's in your life, this is the video for you. Click here for more information: https://www.pineseducation.org/product/practical-tips-for-better-living-with-parkinsons-disease/
We aren’t born knowing how to communicate with a person with dementia—but we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.
- Set a positive mood for interaction. Your attitude and body language communicate your feelings and thoughts stronger than your words. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection.
- Get the person’s attention. Limit distractions and noise—turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have her attention; address her by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.
- State your message clearly. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns (he, she, they) or abbreviations.
- Ask simple, answerable questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.
- Listen with your ears, eyes and heart. Be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
- Break down activities into a series of steps. This makes many tasks much more manageable. You can encourage your loved one to do what he can, gently remind him of steps he tends to forget, and assist with steps he’s no longer able to accomplish on his own. Using visual cues, such as showing him with your hand where to place the dinner plate, can be very helpful.
- When the going gets tough, distract and redirect. If your loved one becomes upset or agitated, try changing the subject or the environment. For example, ask him for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, “I see you’re feeling sad—I’m sorry you’re upset. Let’s go get something to eat.”
- Respond with affection and reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.
- Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.
- Maintain your sense of humor. Use humor whenever possible, though not at the person's expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.
Saying what we mean is so much better than putting shame into what we are saying.
By Doreen T. Sutherland, MBA
What we say is a literal shame. We use shaming, blaming words and we don’t even know it. I do it. You do it. We all do it. We must stop. Here are some words to think about.
Don’t say COMMITTED suicide. It sounds like you’re saying the person committed a crime like stealing, attacking someone or murder. Suicide is not a crime; it’s the product of a medical illness. Let’s be part of the modern era and stop hiding behind our mothers’ aprons. It’s died OF pnemonia, heart attack, stroke, cancer, suicide.
Don’t say she IS bipolar or she IS schizophenic. People are actually people first and foremost. SOME people get diseases and chronic physical or mental health conditions. The disease is not their identity and it does not define their character or who they are. She is not pneumonia or cancer. She HAS bipolar disorder or she has OCD or she is a person WITH bipolar disorder. That simple change makes “bipolar” the noun it should be and absolves it of the ugly responsibility of being a reluctant adjective or adverb.
Don’t say he IS an addict. Again, people are people, not a disease and this blames him for being part of a group harboring a disease in the same way that we once labeled lepers. He is a person who may have an addiction or a substance abuse disorder. Say he HAS an addiction.
For medical professionals: Don’t say the patient IS NON-COMPLIANT. This is a tough one because it’s so convenient as short hand. What’s really happening is that we are blaming a patient for not following a plan that they may not have understood or have agreed to follow. They may not have had the money to buy the medication, had transportation to get to the referral or had a lack of education that is preventing them from following the plan. Rather than placing “non-compliant” in the permanent record it might be useful to ask, “ WHY ISN”T THE TREATMENT WORKING?”
PROVIDER is an awful word. (And I am guilty of using it. You can probably find it in this blog somewhere.) Providers provide something. Anything. In medicine, a provider is an economic term that places all revenue generators together. It’s offensive to those who have spent dozens of years to master their profession. Say PHYSICIAN, SURGEON, HEALTH PROFESSIONAL.
MIDLEVEL is also a rotten word. Midlevel provider (two lousy words) is a word designed by MBAs to describe the revenue generators in medicine that are somewhere between the doctors and the nurses. I am wondering why the MBAs (like myself) don’t prefer to be called MIDLEVEL ACADEMICS since we are somewhere between those with bachelors degrees and PhDs when it comes to knowledge about these things. It’s better to say PHYSICIAN ASSISTANT.
Saying what we mean is so much better than putting shame into what we are saying.
Inspired by Pamela Wible, MD
SCIENTISTS believe they have identified the cause of devastating neurological conditions - such as Alzheimer’s and Parkinson’s.
By OLIVIA LERCHE
PUBLISHED: 09:30, Fri, May 13, 2016 | UPDATED: 09:35, Fri, May 13, 2016 in the UK EXPRESS
A study has revealed an ‘out-of-control immune system’ could be to blame for the neurological conditions, finding mental decline common to both of the diseases is caused by a process called ‘auto inflation’.
This is where the immune system is develops a constant ‘persistent’ inflammatory response. But over time, this inflammation causes some brain cells to die.
Professsor Robert Richards, said: “Dementia, including the most common form Alzheimer’s Disease, and related neurodegenerative conditions are dramatically rising in frequency as people live longer and our population ages.
“Australia is predicting that by 2050 there will be almost double the number of people with dementia, and the United States similarly says there will be twice as many. “Currently we have no effective treatments to assist the millions of affected people, and these diseases are an enormous burden on families and the public health care system.”
The Alzheimer's Society said there will be 1 million people with dementia
in the UK by 2025.
Previously, researchers have focused on the role of protein deposits called amyloid plaques that lodge in the brain of Alzheimer’s affected people.
But it is now clear that this is an inadequate explanation for Alzheimer’s Disease, according to researchers.
There are many distinct forms of neurodegeneration including Alzheimer’s, Parkinson’s and Huntington’s Diseases.
These conditions are distinguished by the different types of brain nerve cells that are first affected and by the symptoms that first appear. However, as all of these diseases progress, they become more similar.
Professor Richards said he believes that instead of many different mechanisms, each disease has the same underlying mechanism, and common pathway of nerve cell loss.
“Our interest in the body’s own (innate) immune system as the culprit began when we discovered that immune system agents become activated in a laboratory model of Huntington’s Disease,” he said.
“Remarkably, researchers from other laboratories were at the same time reporting similar features in other neurodegenerative diseases.
“When we pulled the evidence together, it made a very strong case that uncontrolled innate immunity is indeed the common cause.”
The innate immune system is the first line of defence in cells, and normally distinguishes molecules that belong to the body from foreign, disease-causing, molecules.
It is an alarm and response system with a self-destruct mechanism to contain and eliminate invaders or abnormal cells, like cancer.
Malfunctions can occur because of various triggers including genetic mutations, infection, toxins or physical injury, all of which have been linked with different forms of neurodegeneration.
Initially the innate immune system protects the tissue against these triggers, but prolonged activation becomes self-perpetuating, causing brain cell death to occur.
“We hope this new way of understanding neurodegeneration will lead to new treatments,” said Professor Richards.
“We now need to further investigate the immune signalling molecules, to identify new drug targets that will delay the onset and/or halt the progression of these devastating diseases.”
Dr. Dean Sutherland has been again named a Top Doc, an annual listing of the region’s most outstanding physicians, as nominated by their peers and compiled, vetted and verified by Castle Connolly Medical. The research firm’s extensive process starts with online nominations open to all physicians and includes screening of each doctor’s professional credentials and record.
Castle Connolly Medical Ltd. is a healthcare research and information company founded in 1991 by a former medical college board chairman and president to help guide consumers to America’s top doctors and top hospitals. Castle Connolly’s established nomination survey, research, screening and selection process, under the direction of an M.D., involves many hundreds of thousands of physicians as well as academic medical centers, specialty hospitals and regional and community hospitals all across the nation. Castle Connolly’s physician-led team of researchers follows a rigorous screening process to select top doctors on both the national and regional levels. Its online nominations process—located at www.castleconnolly.com/nominations—is open to all licensed physicians in America, who are able to nominate physicians in any medical specialty and in any part of the country, as well as indicate whether the nominated physician is, in their opinion, among the best in their region in their medical specialty or among the best in the nation in their medical specialty. Careful screening of doctors’ educational and professional experience is essential before final selection is made among those physicians most highly regarded by their peers.
The International Parkinson and Movement Disorders Society will include Dean Sutherland MD, PhD's, Case Report entitled "The Effects of Marijuana on Essential Tremor" at it's 20th International Congress of Parkinson's Disease and Movement Disorders Conference in Berlin, Germany on June 19-23, 2016. Essential tremor is a neurological condition often confused with Parkinson's Disease. It causes involuntary and often debilitating shaking that usually worsens over time. People with Essential Tremor find it especially difficult to do simple tasks like tying their shoelaces, buttoning a shirt or writing a check.
Dr. Sutherland's case study tracked a single patient's handwriting quality at baseline and then following the use of medical marijuana containing only CBD, the non-psychoactive component of the marijuana. The patient's handwriting was also examined on separate occasions after consuming a standardized amount of marijuana containing both CBD and THC, the psychoactive component of marijuana, in an edible form. On another day, the patient consumed two cans of beer and produced handwriting samples for comparison with the others. Both the alcohol and the marijuana containing the psychoactive component (in layman's terms, the part that results in a "high") improved the patient's handwriting. The medical marijuana (minus the psychoactive component) did not.
Dr. Sutherland says this case study addresses several problems. "First, marijuana containing THC may be a reasonable treatment for essential tremor in some patients. Second, medical marijuana (without THC) may not be helpful for essential tremor. Third, there needs to be further study, hopefully including randomized controlled trials (the best type of research), on the use of marijuana for movement disorders like essential tremor and Parkinson's Disease."
Dean Sutherland, MD, PhD is the Founder of the Southeastern Center for Parkinson's Disease in Sarasota, Florida and Medical Director for Neuro Challenge Foundation for Parkinson's, a charity he started with his wife Doreen in 2008. Dr. Sutherland has diagnosed and treated thousands of patients with Parkinson's and related diseases and treats more Parkinson's patients annually than any doctor in America. Learn more at parkinsonsclinic.com or call 941-487-2160.
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.