Tips for Daily Living: Protect Yourself From Skin Cancer
Summer is the time for long drives, late sunsets and the outdoors. However, direct and prolonged exposure to the summer sun can also result in sunburns and over time, skin cancer. Skin cancer is the most common cancer in the U.S. and it is even more of a threat for people with Parkinson’s disease (PD) because they have a higher risk of developing malignant melanoma.
Skin cancer is preventable. Taking proper precautions and knowing what to look for can save your life. If promptly treated, early-stage melanoma can have a nearly 100 percent cure rate.
Here are some ways you can enjoy the sun year-round while protecting yourself from its rays:
Use sunscreen with a sun protection factor (SPF) of 30 or more. Apply sunscreen daily before leaving your house, year-round. If you drive often, keep sunscreen in your car so that you can apply it to your hands before driving.
Examine yourself from head to toe. Melanoma can occur in hidden spots that can be easily overlooked. Once a month, look for odd marks and black spots on your skin and nails. Ask a loved one to help you for the areas you can’t see.
Know your spots. Look for a skin growth, mole or beauty mark that changes in size, color or texture.
Protect yourself from sun exposure. Wear protective clothes and a hat. Sunscreen alone may not be enough to protect you from direct sunlight.
Schedule a yearly screening with a dermatologist. At your annual visit ask your dermatologist for a skin cancer screening. During the visual inspection point out any abnormal spots.
Be mindful of medications that increase sun sensitivity. The medication label or warning would list the drug as sun-sensitizing. These medications can increase your chances of sunburns.
Use sunscreen when around reflective surfaces. Water, snow and sand all reflect sun rays and increase sun exposure. Even in winter, these surfaces increase your odds of getting a sunburn.
Get treated. If diagnosed with skin cancer, get treated right away. Early-stage melanoma has a 98 percent survival rate.
New Evidence Links Traumatic Brain Injury with Parkinson’s
A new study finds that traumatic brain injury from a blow to the head, with loss of consciousness, may increase a person’s risk of developing Parkinson’s disease (PD) later in life. The results appear in the July 11 online edition of JAMA Neurology. The researchers did not find an association between head injury and Alzheimer's disease.
The neurological effects of head injuries are much in the news, with worry over repeated, relatively mild, concussions among athletes, and with the recent death of boxing great Muhammad Ali, who lived with Parkinson's disease. This new study, however, focused narrowly on the long-term effects of even one instance of trauma to the head — especially injuries involving loss of consciousness — among older people more representative of the general population.
Researchers led by Paul K. Crane, M.D., M.P.H., at the University of Washington in Seattle, analyzed self-reported data, collected between 1994 and 2014, from 7,130 people who had enrolled in other studies that gathered data on memory, cognition and aging. On average, study participants were 80 years old at the time of this report, and did not have dementia, PD, or Alzheimer’s disease when they enrolled in the original studies. Forty percent were men. Brain tissue was examined on autopsy for 1,589 participants, to search for signs of PD and Alzheimer’s disease.
Results
Eight hundred sixty-five study participants reported having had a traumatic brain injury with loss of consciousness at some time in their lives.
During the time study participants’ health was followed, 117 new cases of PD were diagnosed among the total of 7,130 participants.
A past traumatic brain injury with loss of consciousness longer than an hour was associated with three and a half times increased risk of developing PD.
History of traumatic brain injury was also associated with the accumulation of Lewy bodies in brain cells, the toxic clumps of alpha-synuclein protein that are the hallmark of PD.
Traumatic brain injury was not associated with mild cognitive impairment (MCI)|, dementia, Alzheimer’s or brain changes associated with Alzheimer’s.
Microinfarcts — microscopic strokes in the brain that may be a cause of dementia — were found more often in the brains of people who had traumatic brain injury that lost consciousness for more than one hour.
What Does It Mean?
Head injuries are common, even among non-athletes. Earlier studies have suggested that they might be related to developing Alzheimer’s.
But the new research found instead that just one traumatic brain injury with loss of consciousness of more than one hour was associated with Parkinson’s, and not Alzheimer’s. Although most people recover to normal functioning after a traumatic brain injury, this study suggests that the consequences from even a single head injury may take decades to develop.
The finding underscores the importance of preventing head injuries. It also suggests that additional research to understand the relationship between brain injury and Parkinson's, and why they are linked, might provide ideas for possible interventions for reducing risk of PD.
Beth Vernaleo Ph.D., Associate Director of Research Programs, PDF added, “While previous research has linked head injuries to neurodegenerative disease, this study illustrates a more specific finding — that a single blow to the head causing a loss of consciousness for more than an hour, even in one’s 20s, may lead to a three-fold increased risk of Parkinson’s decades later. Although the vast majority of people who experience head injury will not develop Parkinson’s, this study may provide clinicians with an additional diagnostic tool. For example, asking patients about history of head injury, amongst other symptoms and risk factors, may prove a valuable means of ascertaining the likelihood of a PD diagnosis.”
Crane PK, Gibbons LE, Dams-O’Connor K, et al. (2016). Association of Traumatic Brain Injury With Late-Life Neurodegenerative Conditions and Neuropathologic Findings. JAMA Neurology doi:10.1001/jamaneurol.2016.1948
This blog is the fifth in a series detailing the roles of each member of a comprehensive care team, covering social work, occupational therapy, speech-language pathology and physical therapy. Learn more about the healthcare professionals that are part of a comprehensive care team and how you can put your care team together today.
What Is Dance/Movement Therapy?
Dance/movement therapy is a form of psychotherapy that uses movement, in all forms, as a means of observation, assessment and intervention in the therapeutic relationship. Unlike dance, dance/movement therapy does not focus on a stylized choreography, specific set of skills or technique. Instead, it allows individuals to move and find comfort in their bodies and to express what words might be too difficult to uncover.
Dance/movement therapy can help support people with Parkinson’s disease (PD) in the moment, even when it is hard to be present to physical sensation and symptoms.
What Do You Do During a Dance/Movement Therapy Session?
There is no one-size-fits-all session, though there are some common basic components. In an individual session, you will likely start with a warm-up where the therapist guides you through movements, from head to toe.
You will be encouraged to move each body part, no matter how small. This allows you to become more aware of your body and experience your capacity for movement. Next, the therapist will coach you to use your body to express behaviors and thoughts or to explore movement patterns and preferences.
Group sessions might incorporate elements from a support group, a social dance or mindful movement class. For example:
When asked how she felt at the beginning of the dance/movement therapy group, Sally reported feeling isolated, standoff-ish and unsure of her ability to participate because of her tremor and poor balance. The therapist invited Sally to show what that looked like using her body. Sally slumped over in her chair, crossed her arms and lowered her gaze. Sally then lifted her chest, looked up to the ceiling and threw her arms up in the air. With a smile on her face, Sally said, “A weight has been lifted. Now, I feel free!”
Who Is a Dance/Movement Therapist?
Dance/movement therapists are registered or board-certified individuals with a master’s degree in dance/movement therapy. Depending on where they practice, dance/movement therapists may be clinical counselors, social workers, creative arts therapists or psychologists. Most have a background in psychology and dance, with a focus on dance as an outlet for mental health and expression. Dance/movement therapists are required to fulfill clinical internships in such settings as hospitals, treatment facilities, day programs, nursing homes, day schools or even private practice.
A dance/movement therapist is an integral part of the care team because he/she can mesh clinical counseling or social work with movement observation and assessment. The therapist’s keen ability to observe the relationship between movement and mental health helps foster a more holistic, mind-body approach to medicine.
Dance/movement therapists receive referrals from other care team members and often co-treat, co-facilitate and collaborate with them. As part of the team, your dance/movement therapist should communicate with other care team members about treatment plans, symptom management and disease progression.
What Symptoms Can Dance/Movement Therapy Help Treat?
Dance/movement therapy addresses motor and non-motor symptoms of Parkinson’s. It focuses on balance, coordination, gait and mobility, but also uses movement to address depression, digestive complications, anxiety and fatigue.
Furthermore, dance/movement therapy encourages individuals to prioritize their mental health. Embracing the arts as a mode of psychotherapeutic intervention and expression seems to help reduce stigma around mental health issues.
Research specifically on dance/movement therapy with PD is taking off. For example, Northwestern University in Illinois recently conducted a study on the effects of dance/movement therapy on fatigue in people with PD. More researchers are becoming interested in this topic, so expect to hear more about the impact of dance/movement therapy in the future. In the meantime, try it for yourself.
How Do I Find a Therapist or Program?
Dance/movement therapists and programs are all over the country. To find one nearest you, go to The American Dance Therapy Association’s website at www.adta.org. You can find a list of resources and a directory of therapists in your area. The toll-free Parkinson’s Foundation Helpline can also help connect you to information and resources: 1-800-4PD-INFO (473-4636).
Dance/movement therapy is often a wonderful complementary or adjunct therapy for individuals affected by movement disorders. Some dance/movement therapy sessions may be covered by private health insurance, which can make it an affordable and accessible option for treatment of symptoms and maintenance of quality of life.
Erica Hornthal, LCPC, BC-DMT, is CEO of Chicago Dance Therapy. She is a clinical counselor and board-certified dance therapist who specializes in working with individuals living with movement and cognitive disorders. Additionally, Erica works with people of all ages and abilities to connect the mind and body to promote self-awareness, self-expression, healthy attachments, compassion and improved quality of life.
Tips for People with Parkinson’s Who Want to Take Over the Counter Medications During Flu Season
People with PD often tell us that when they get sick with cold and flu-like symptoms, their pharmacist and healthcare professionals warn them to stay away from the medication aisle of the pharmacy. They are told that any over-the-counter medication has the potential to worsen Parkinson’s symptoms. Unfortunately, many people interpret this potential worsening as a recommendation to never use these medications.
Also contributing to this issue is a series of reports that medications such as anticholinergics (like Benadryl) may cause acute confusion and even contribute to long-term cognitive changes. It is important to keep in mind when selecting a cough or flu medication that the intent is not to treat long-term issues.
This flu season we wanted to provide the PD community with some tips to help you navigate Parkinson’s while simultaneously addressing cold and flu symptoms:
If memory or thinking problems are present, take caution with drugs that may be sedating (such as Sudafed) or that contain an anticholinergic (for example, Trihexyphenidyl, Benadryl, Cogentin, Parsitan). Because of memory and thinking issues, anticholinergics are only rarely used to address cough and cold symptoms.
Cough syrups with pain medication (such as codeine) could lead to memory issues, thinking problems or sedation. If you take one of these medications your memory and thinking should be monitored as confusion could lead to falls and other negative consequences.
Pain medication (such as meperidine) can interact with other medications and can result in sedation.
It may be useful to temporarily stop monoamine oxidase (MAO-B) inhibitor drugs (such as selegiline, rasagiline, safinamide) to avoid drug-drug interactions with cyclobenzaprine, dextromethorphan (often found in cough medicine), meperidine (also sold as Demerol), methadone, St. John's wort or the pain medicine tramadol. Talk to your doctor before making changes to your medications.
Psuedoephedrine, phenylephrine and phenylpropanolamine can be found in any cold or flu medication and could increase blood pressure and possibly increase the risk of stroke, especially in those with high blood pressure.
Aspirin, acetaminophen and other nonsteroidal anti-inflammatory drugs are usually safe, but can have side effects (particularly gastrointestinal).
Antihistamines can sometimes cause drowsiness, but many people with PD can tolerate them for short courses.
In 2014, Kim Painter wrote a great article in the USA Today to help individuals and families stay safe in the cold and flu aisle.
Here are some of Kim’s tips:
Treat only symptoms you have and be wary of multi-symptom products.
Know your dose and don’t overdose.
Know your health risks (for example, decongestants can cause blood pressure spikes, especially if you have hypertension; acetaminophen can lead to liver damage for heavy alcohol users).
Don't double up and accidentally take two medicines with similar ingredients.
Where does this leave people with Parkinson’s when they find themselves in the medicine aisle? The most important take home is that it is possible to take over the counter medications if you have Parkinson’s disease. However, there are potential risks and benefits, as well as strategies and alternatives that may also address cold and flu concerns.
The commonly used strategy of telling a person with Parkinson’s to suffer through cold and flu symptoms may not always be the best strategy. Working through a solution with your healthcare team makes a lot of sense and can alleviate some of the discomfort associated with cold and flu-like illnesses.
What’s Hot Medication Edition: Exenatide and Gocovri
People with Parkinson’s disease (PD) are in critical need of new, more effective therapies to treat the symptoms of the disease like dyskinesia and to stop its progression.
Currently, an anti-viral drug called amantadine is used off label to treat dyskinesia — episodes of involuntary movements of the arms, legs and head. But amantadine carries risk of side effects such as insomnia and hallucinations.
Fortunately, the U.S. Food and Drug Administration (FDA) approved Gocovri, an extended release amantadine preparation, to treat dyskinesia. It is the first drug FDA approved for this specific purpose. According to one randomized double-blinded and placebo-controlled study (the gold standard of research), patients who received Gocovri experienced improvements in their symptoms. Subjects were followed for six months. When patients were evaluated using the Unified Dyskinesia Rating Scale, a clinical scale for measuring response to therapies, the Gocovri group gained eight points over those in the placebo group. And two other recently published studies have confirmed the benefits of Gocovri for the treatment of dyskinesia.
Here’s What You Need to Know
Gocovri is a one-a-day treatment designed to limit side effects. However, because no head-to-head test of generic amantadine versus Gocovri has been done, we do not know whether this new formulation is more effective. Still, many studies show that amantadine — in any formulation —can be effective in suppressing dyskinesia. A recent Parkinson’s Foundation study found that regular release amantadine alleviated dyskinesia.
Overall, patients who are doing well on multiple doses per day of generic amantadine will likely not benefit from switching to one-a-day Gocovri. However, those experiencing side effects from amantadine now have another option. It could provide a one-a-day solution to dyskinesia that previously could only be managed with multiple doses per day.
A Diabetes Drug to Treat Parkinson’s
Recently a small study published in the journal Lancet suggested that Exenatide, a medication used to manage diabetes (more specifically, a glucagon-like peptide-1 receptor stimulator) may slow the progression of Parkinson’s. Exenatide is being studied as a neuroprotective pharmacological treatment for people living with Parkinson’s.
Exenatide has shown neuroprotective benefits in animal models, but not in humans. To see if this diabetes therapy has disease-modifying effects in people with Parkinson’s, British investigators performed a double-blind, placebo-controlled study on 62 patients. Of those, 30 received two-milligram injections of Exenatide, and 32 received a placebo once a week for four months. Both groups then stopped the study drugs for three months for what is called a “wash out” period.
The primary outcome was an improvement of motor symptoms, as measured on the Unified Parkinson Disease Rating Scale (a scale used in clinical studies to measure behavior, activities of daily life, motor symptoms and other components over the course of PD). A Parkinson’s motor score was calculated at the beginning of the study and after the intervention. Study results showed an improvement of one point on the Unified Parkinson Disease Rating Scale among the Exenatide group, and a decline of 2.1 in the placebo group.
Here’s What You Need to Know
This is an exciting finding suggesting Exenatide provides some neuro-protection to people with Parkinson’s. However, because the results of this small study are preliminary, there is not enough data to prove neuro-protection. The bottom line is that Exenatide is a promising drug, but larger trials are needed to determine if it indeed has disease modifying effects in people with Parkinson’s.
What's Hot in PD? Should We Be More Aggressive in Preventing Weight Loss in Parkinson’s disease?
Slow and steady weight loss is a known feature of Parkinson’s disease. Weight loss may initially be a positive and popular disease related feature. However, as patients dip below their ideal body weight, this may possibly impact quality of life and other outcomes (Akbar, 2015). In this month’s What’s Hot in PD?, we will discuss a recent article on weight loss in Parkinson’s disease.
In this month’s issue of Neurology, the Parkinsonism Incidence in North-East Scotland (PINE) focused on weight loss (Cumming 2017). The study examined newly diagnosed patients and followed them, as well as matched controls, longitudinally for about five years. Of 515 participants and 240 controls, 187 had Parkinson’s disease and 88 had atypical parkinsonism (diagnoses such as Progressive Supranuclear Palsy, Multiple System Atrophy or Corticobasal Degeneration). In general, both Parkinson’s disease and atypical parkinsonism cases had lower body weights and lost weight faster when compared to controls. Atypical parkinsonism cases had the lowest body weights and most rapid weight loss. Older age was the factor that was most associated with weight loss; however, in cases with weight loss in the first year, there was a strong association with dependency on a caregiver, dementia and death (Okun, 2017).
The PINE study, along with other recent publications on weight loss in Parkinson’s disease and atypical parkinsonism, would suggest that we need to become more aware of this issue. Your doctor should track your weight at each visit and consider the possibility of intervening with dietary changes to address any weight loss. Whether any intervention could potentially affect outcomes remains unknown and it will be important for researchers to pursue a prospective randomized study. Finally, if you have one of the atypical forms of parkinsonism you may need to be more aggressive in addressing weight loss.
Selected References
Cumming K, Macleod AD, Myint PK, Counsell CE. Early weight loss in parkinsonism predicts poor outcomes: Evidence from an incident cohort study. Neurology. 2017 Nov 28;89(22):2254-2261. doi: 10.1212/WNL.0000000000004691. Epub 2017 Oct 27. PubMed PMID: 29079685.
Mun JK, Youn J, Cho JW, Oh ES, Kim JS, Park S, Jang W, Park JS, Koh SB, Lee JH, Park HK, Kim HJ, Jeon BS, Shin HW, Choi SA, Kim SJ, Choi SM, Park JY, Kim JY, Chung SJ, Lee CS, Ahn TB, Kim WC, Kim HS, Cheon SM, Kim JW, Kim HT, Lee JY, Kim JS, Kim EJ, Kim JM, Lee KS, Kim JS, Kim MJ, Baik JS, Park KJ, Kim HJ, Park MY, Kang JH, Song SK, Kim YD, Yun JY, Lee HW, Song IU, Sohn YH, Lee PH, Park JH, Oh HG, Park KW, Kwon DY. Weight Change Is a Characteristic Non-Motor Symptom in Drug-Naïve Parkinson's Disease Patients with Non-Tremor Dominant Subtype: A Nation-Wide Observational Study. PLoS One. 2016 Sep 13;11(9):e0162254. doi: 10.1371/journal.pone.0162254. eCollection 2016. PubMed PMID: 27622838; PubMed Central PMCID: PMC5021347.
Akbar U, He Y, Dai Y, Hack N, Malaty I, McFarland NR, Hess C, Schmidt P, Wu S, Okun MS. Weight loss and impact on quality of life in Parkinson's disease. PLoS One. 2015 May 4;10(5):e0124541. doi: 10.1371/journal.pone.0124541. eCollection 2015. PubMed PMID: 25938478; PubMed Central PMCID: PMC4418600.
Okun MS. Poor Outcome Associated with Weight Loss in Parkinson’s Disease and Parkinsonism. New England Journal of Medicine Journal Watch Neurology, 2017.
It is estimated that at least 50 percent of people living with Parkinson’s disease (PD) experience depression at some time during the course of their disease. The Parkinson’s Foundation Parkinson’s Outcomes Project found that taken together, mood, depression and anxiety have the greatest impact on health status, even more than the motor impairments commonly associated with the disease.
The sadness and hopelessness that accompanies depression make the challenges of living with PD even greater. The good news is that depression is a Parkinson’s symptom that can be controlled. No one chooses Parkinson’s, but they can choose how to cope with it.
Learn the skills that will empower you take control of your mood, worry less and find meaning in daily life. These skills are modeled on a non-drug therapy called cognitive behavioral therapy, which has been found to be helpful for Parkinson’s-related depression. To cope with depression, you can put these skills into action.
The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about depression, hosted by Roseanne D. Dobkin, PhD, from Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School.
What Is Cognitive Behavioral Therapy?
Cognitive behavioral therapy (CBT) is a non-drug approach to developing the skills and actions that change patterns of thought and behavior related to depression.
Many factors can cause a person to become and stay depressed. How people think and interpret what goes on around them influences how they feel. As does behavior — what people do, or don’t do, in response to the stresses of life.
Depression can also have a biological cause. Brain changes that underlie PD may contribute to depression. However, it is important to remember that biology is not the only cause; thoughts and behaviors play a significant role. These three factors influence one another and intervening anywhere in the interconnected cycle can help treat depression.
Setting Goals to Change Behavior
The first step in positively changing behavior is to make plans and set goals for activities. Emotions can take control when feeling depressed or anxious. Instead, set clear goals and let these action plans guide you. Think strategically about increasing your involvement in meaningful activities — avoiding being busy for the sake of it. Goals should be small and realistic.
Focus on three areas when goal-setting:
Exercise. Identify a reasonable daily exercise goal, whether it’s Tai Chi or seated exercises. Ask for guidance from a physical or occupational therapist.
Socialize. Keep social goals small and do-able. Don’t jump to hosting a dinner party, instead try simple things like answering the phone or saying hello to a cashier.
Self-soothe. Take time every day for an activity that will lead to a positive emotion — something that just feels good. For instance, relax with a cup of hot tea, take a bath or listen to music.
While planning activities that guide your day, consider these questions:
Are there things you used to love to do that fell off the radar with a PD diagnosis? Consider re-introducing those activities.
If the daily activities you used to enjoy are no longer feasible, are there new activities that can replace them?
Can you modify an activity that used to be enjoyable?
Dr. Dobkin’s friend Howard used CBT to gradually take control over and improve his mood. Howard was a career firefighter. Five years into his PD diagnosis, he was no longer physically able to fight fires. He became depressed and withdrawn, cutting off ties with his firefighter friends, who were like family to him.
During therapy, Dr. Dobkin and Howard tested different ways he could re-connect with his friends. First, he went to a chili dinner — and it wasn’t embarrassing like he thought it would be. Then, he began attending (not participating in) weekly training sessions and pool games at the firehouse. Gradually, Howard began to reconnect. He even helped with the fire department’s fundraising campaign. He realized that even though he couldn’t ride a fire truck, he could stay connected and contribute in many meaningful ways.
Tips to help you set daily goals:
Make them small and meaningful.
Choose activities that make you feel productive and satisfied.
Plan around your physical limitations and “off” time.
Pace yourself.
Be flexible. If you can’t walk for 30 minutes, start with 15.
Ask your doctor for referrals to physical, occupational and speech therapy.
Examine Negative Thoughts to Achieve Balance
When depressed or anxious, thoughts tend to include a lot of negative predictions — the typical response is to think that things will not go right. Most of the time, these predictions are not accurate. Yet, negative thoughts influence what people do and how they feel.
Cognitive behavioral therapy aims to recognize, analyze and test negative thoughts, evolving them into a more balanced, healthier mindset.
Try this cognitive behavioral therapy technique:
Write down negative thoughts. For example, “my PD makes my friends uncomfortable.”
Share the thought with a loved one and discuss it together.
Recognize that it is your opinion and ask, “do others share my perception? Is there evidence against it? Is there an alternative explanation?”
Revise your thought or prediction in a way that helps you cope with the challenges of PD more objectively.
Fight the urge to think in worst-cases.
If possible, find a way to test your thinking. Perhaps you think you can’t eat at a restaurant because of your tremor. Find out. Make plans to test your thought. Increase your chances of success by taking your symptoms into account — for example, go when the restaurant is not crowded, order food you don’t need to cut or ask for a lid and straw for your drink.
Then see what happens. Identify what worked. Can you revise your original negative thought? Going forward, try using more balanced, accurate thoughts to guide how you feel and what you do during the day. Healthy thoughts will help you cope effectively with PD, whereas destructive ones derail your efforts.
Care Partners
Caregivers play an essential role in supporting people with PD who cope with depression. Research has shown people with Parkinson’s using CBT have more improvement in their depression, and for longer, when their care partners receive educational sessions on CBT. Additional benefits for people with PD included less anxiety, fewer negative thoughts and better ability to reframe them, more social interaction and better motor function. The more a loved one was involved with therapy for a person with PD, the better the outcome.
Reinforcing Success
For a person who is depressed, taking action is hard. A surprising effect of cognitive behavioral therapy is that it is self-reinforcing. Set small, specific goals and let the goal guide your behavior, no matter how you feel. When you feel a glimmer of success, your enthusiasm to do more will kick in. A small change in activity can improve a person’s mood. A better outlook can inspire more activity, and a more objective assessment of the future.
Conclusion: Don’t Suffer in Silence
Your mood is a critical aspect of living with PD that you can control. Talk to your friends, family, and doctor about your mood. Any feelings of sadness or hopelessness that negatively impact your day deserve attention. If symptoms are severe, you and your medical team might consider one of the many antidepressant medications. But effective, non-drug treatments also are available, both in combination with drug therapies and on their own. If you are depressed, speak up and seek help.
For more information on depression, anxiety and treatment, read the Parkinson’s Foundation book, Mood: A Mind Guide to Parkinson's Disease or call the foundation’s free Helpline at 1-800-4PD-INFO (473-4636) to speak with a Parkinson’s specialist.
CBT: How to Find a Therapist
Ask your doctor or neurologist for a referral
Ask support group members for referrals
Call the Parkinson’s Foundation’s free Helpline at 1-800-4PD-INFO (473-4636)
Tips for Better Sleep to Help Ward Off Anxiety and Depression
Go to bed and get up at around the same time every day.
Use the bed for sleep only.
Limit daytime naps.
Don’t lie in bed unable to sleep for long periods — get up and do something else until you feel tired, then try to sleep again.
Anti-TNF Therapy: Could Inflammatory Bowel Disease Therapies Pave a Path to a Treatment for Parkinson’s?
A recent study by Inga and colleagues at the Mount Sinai Beth Israel Parkinson’s Foundation Center of Excellence in New York examined the incidence of Parkinson’s disease in inflammatory bowel disease patients. The authors were also interested as to whether exposure to anti-tumor necrosis factor therapy (anti-TNF) could possibly reduce the risk of the later development of Parkinson’s disease. In this month’s What’s Hot in PD? blog we will discuss the links between inflammatory bowel disease and also examine the intriguing possibility that anti-TNF or related approaches may one day be used as Parkinson’s disease treatments.
The idea that inflammation is an important factor in the development of Parkinson’s disease is not new and systemic inflammatory diseases may provide an important clue to pathogenesis. There are almost two million people in the United States suffering from inflammatory bowel disease and there has been great interest in its potential links to neurodegeneration. The LRRK2 (leucine-rich repeat kinase 2) gene is a well-established risk factor for Parkinson’s disease. LRRK2 has also been strongly linked to Crohn’s disease, and this link has raised the question as to whether there is a relationship between inflammatory bowel and Parkinson’s disease. Ulcerative colitis is the other common inflammatory bowel disease, and although much less is known about its links to Parkinson’s disease there has been recent interest in exploring this area. Many inflammatory bowel disease studies include both Crohn’s disease and ulcerative colitis patients.
Inga and colleagues, in a recent issue of JAMA Neurology, examined administrative health insurance claims from approximately 170 million people (Truven Health MarketScan administrative claims database and the Medicare Supplemental Database) and observed that inflammatory bowel disease patients were 28% more likely to develop Parkinson’s disease. Even more intriguing was the observation that exposure to anti-TNF therapy was associated with a 78% reduction in Parkinson disease incidence.
Though the studies were observational and the results derived from analysis of data from health insurance claims, the idea that systemic inflammation plays a key role in Parkinson’s disease is intriguing. Anti-TNF or other anti-inflammatory therapies may be candidates for future clinical trials.
Inga Peter, PhD; Marla Dubinsky, MD; Susan Bressman, MD; Andrew Park, PhD, MPH; Changyue Lu, MS; Naijun Chen, MS; AnthonyWang, PhD, MPH Anti–Tumor Necrosis Factor Therapy and Incidence of Parkinson Disease Among Patients With Inflammatory Bowel Disease. JAMA Neurology Online April 23, 2018
Witoelar A, Jansen IE, Wang Y, Desikan RS, Gibbs JR, Blauwendraat C, Thompson WK, Hernandez DG, Djurovic S, Schork AJ, Bettella F, Ellinghaus D, Franke A, Lie BA, McEvoy LK, Karlsen TH, Lesage S, Morris HR, Brice A, Wood NW, Heutink P, Hardy J, Singleton AB, Dale AM, Gasser T, Andreassen OA, Sharma M; International Parkinson’s Disease Genomics Consortium (IPDGC), North American Brain Expression Consortium (NABEC), and United Kingdom Brain Expression Consortium (UKBEC)Investigators. Genome-wide Pleiotropy Between Parkinson Disease and AutoimmuneDiseases. JAMA Neurol. 2017 Jul 1;74(7):780-792. doi:10.1001/jamaneurol.2017.0469. PubMed PMID: 28586827; PubMed Central PMCID:PMC5710535.
Marijuana and Parkinson's: What Do We Really Know?
People with Parkinson’s disease (PD) and their physicians are both looking to answer whether medical marijuana can help manage Parkinson’s symptoms. Researchers have barely scratched the surface when it comes to marijuana and PD and previous studies are inconclusive about its potential benefits, but many people with Parkinson’s are curious to try it. Here’s what you need to know.
The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about marijuana and Parkinson’s hosted by Benzi M. Kluger, MD, MS, Associate Professor at Neurology and Psychiatry at University of Colorado.
What’s in Marijuana?
Marijuana itself — the dried leaves known by names like pot and weed — comes from a genus of flowering plants called Cannabis. Cannabis plants contain more than 100 chemicals, called cannabinoids, which affect the human nervous system. Some of these chemicals stimulate parts of the brain, while others block the same effects.
The best-known plant-based cannabinoids are:
THC (D9-tetrahydrocannabinol): the psychoactive component of Cannabis responsible for making a person feel “high.” Sativa strains of Cannabis (Cannabis sativa) tend to have higher THC concentrations than others. Marijuana available today typically has 10 to 30 times the amount of THC as that from the 1970s.
CBD (cannabidiol): the component of cannabis that may have calming effects on the nervous system. It does not have the psychoactive effects of THC. The indica and rudaralis strains of Cannabis (Cannabis indica and Cannabis rudaralis) tend to have less THC and more CBD.
Marijuana Research
Endorphins are the naturally occurring substances in the brain that help reduce pain. They are boosted by exercise. Sometimes they are called the brain’s natural opiates, because opioid drugs bind to the same cell receptors as endorphins. Similarly, the brain has its own naturally occurring cannabinoids. Cannabinoids in marijuana have an effect by binding to the receptors for these natural molecules.
The chemicals in the brain that are similar to the active agents in marijuana are called endocannabinoids. Of these, scientists have studied anandamide, which may play a role in pain, sleep and other behaviors, along with the development of the nervous system. The name anandamide means “bliss.” This chemical is found in the human brain and, not surprisingly, in chocolate.
Do endocannabinoids have a role in Parkinson’s? Researchers know that they are involved in the brain area called the basal ganglia, which is affected by PD. Through research, scientists are gaining an understanding of the two main receptors in the brain that respond to marijuana:
CB1 (primarily in the central nervous system)
CB2 (primarily in the immune system).
The dozens of different cannabinoids in marijuana have a range of effects to activate or block receptors.
In studies with laboratory animals, cannabinoids that bind to CB1 have been reported to improve dyskinesias, the involuntary movements that can develop after several years of taking levodopa therapy. Cannabinoids also have antioxidant and anti-inflammatory effects, which could point to neuroprotective activity. Some studies support this idea, but more research is needed.
Cannabinoids synthesized in the laboratory (rather than extracted from marijuana) have been tested as therapies for diseases other than Parkinson’s. CBD recently was approved as a therapy for rare types of epilepsy. Two synthetic cannabinoids are sold as FDA-approved therapies for nausea and other side effects of cancer chemotherapy:
Marinol (dronabiol): synthetic THC
Nabilone: a cannabinoid that acts on both CB1 and CB2
Warning: Synthetic Marijuana
Synthetic marijuana, sold legally under names such as K2 and Spice, contains lab-made cannabinoids and other chemicals. Synthetic marijuana can cause severe, even deadly, side effects. It is not a substitute for plant-based marijuana and remains unregulated.
Clinical Studies
Few studies have enrolled people with PD to investigate the effects of cannabinoids on Parkinson’s symptoms. So far, the most rigorous clinical studies of cannabis and PD movement symptoms have been inconclusive at best, because of the small numbers of participants and other limitations.
In other, less rigorous studies, researchers have surveyed cannabis use among people with Parkinson’s. In these surveys people reported their own experiences, without comparison to a control group. Small numbers of participants reported that cannabis helped tremor, slowness, and non-motor symptoms such as pain, sleep difficulties, anxiety and loss of appetite.
Research is under way to better understand how specific cannabinoids might affect PD symptoms, including a study of the safety and effectiveness of CBD for tremor. In addition, research suggests that CBD could be calming for people with Lewy body dementia, a disease related to Parkinson’s. Research shows that people with dementia should avoid marijuana or other products that contain THC.
Side Effects
With the help of the internet, marijuana and Parkinson’s remains a hot topic. In an era where certain self-help books promote marijuana for Parkinson’s, it’s important to keep in mind that cannabis is not a performance-enhancing substance.
Keeping in mind the comedic duo from the 1970s, Cheech and Chong, marijuana makes people move slowly. Other common side effects include:
Cognitive slowness
Worsening apathy, lack of motivation
Memory problems
Low blood pressure, leading to dizziness and an increased risk of falls
Increased lung cancer risk or other pulmonary issues from smoking
Experiencing uneasiness and feeling unwell due to edible cannabis products, which may have less predictable absorption into the body and different dosages
Guidelines for Medical Marijuana and Parkinson’s
Medical marijuana is legal in 29 states, as of early 2018. If you decide to try it for your PD symptoms:
Inform your doctor. Both you and your doctor should be aware of potential interactions with other drugs, including entacapone (Comtan®) and citalopram (Celexa). Some physicians are not receptive to the use of medical marijuana or are not comfortable filling out state-mandated paperwork. If that’s the case, consider finding a physician who will work with you. Medical marijuana should be approached as a complementary therapy and never a substitute to medication.
Be aware that cannabis products are not regulated. There is no assurance that one product that says it contains 10 mg of CBD is the same as another.
Not all marijuana products are the same. Even if two products are the same strain, for example, the cannabinoids in them may be different, and have different effects.
Stay consistent. To get the most consistent dose, stay with the same product, obtained from the same dispensary or source.
Start with a low dose. As with all medications, start with a low dose and observe the effects. If you increase the dose, do it gradually.
Avoid smoking. Oral drops are an alternative.
Try skin creams or patches for localized pain. Use it like an analgesic cream for certain areas, like the legs.
Conclusion
Cannabis, the marijuana plant, contains more than a hundred different psychoactive chemicals, which have complex effects. Products derived from cannabis may vary widely in terms of their benefits and side effects.
There is currently no conclusive scientific research supporting the benefits of cannabis for any aspect of Parkinson’s. However, anecdotal evidence suggests that cannabis may help pain, sleep, appetite, nausea and anxiety. People with Parkinson’s should especially be aware of side effects such as confusion and low blood pressure that may exacerbate PD symptoms.
What's Hot in PD?: What Are the Disease Modifying Therapies in Trial for Parkinson’s Disease?
We always advise patients to ask their doctor what’s new in Parkinson’s disease (PD). Recently, three leading experts at the Parkinson’s Foundation Center Leadership Conference reviewed the field and updated all attendees on several of the exciting therapies currently being tested by Albert Hung, MD, PhD, Massachusetts General Hospital (MGH); Irene Richard, MD, University of Rochester Medical Center; and Hubert Fernandez, MD, Cleveland Clinic. In this month’s What’s Hot in PD blog we review their latest therapies.
There are several drugs that have been repurposed and are in clinical trials. The advantage of a repurposed drug is that it is already approved by the U.S. Federal Drug Administration (FDA). The hope for the four drugs listed below is that they will meaningfully slow disease progression.
Isradipine (pill) is a calcium channel blocker that was previously approved for the treatment of high blood pressure. The idea behind the use of this drug is to block the entry of calcium into brain cells. Research has revealed tantalizing clues that blocking calcium may prevent brain cell death and lead to positive effects and perhaps even change disease progression.
Exenatide (injection) is an FDA-approved diabetes drug that promotes insulin release and inhibits glucagon secretion. It is glucagon-like peptide (GLP-1) agonist. There are pre-clinical studies which show potential neuroprotective effects in toxin-based PD models.
Nilotinib (pill) is a cancer drug used most frequently to treat leukemia. It works as a c-Abl tyrosine kinase inhibitor (blocks an enzyme). It is thought to treat the alpha-synuclein deposition that occurs in the brains of people with Parkinson.
Inosine (pill) was a previously used drug to improve athletic performance. It is not FDA approved, but there has been great interest in using this drug to address stroke, multiple sclerosis and Parkinson’s. The idea for its use in Parkinson’s disease is that higher blood levels of uric acid may possibly decrease disease progression and this drug is effective at raising levels. The safety of the drug will be monitored especially for things like gout and kidney stones.
There is great interest in gene targeted and enzyme targeted therapies:
GBA-associated Parkinson’s disease from the glucocerebrosidase (GBA) gene is of interest to many investigators. The pharmaceutical company Sanofi has a Phase II trial of a glucosylceramide synthase inhibitor to treat people with Parkinson’s who have the GBA gene (GZ/SAR402671).
The gene that makes amino acid decarboxylase (AADC) and promotes conversion of brain chemicals (dopamine, serotonin) has been a target for clinical trials. There are positive interim results from an ongoing phase Ib trial and a current open-label trial.
Ambroxol is an older drug that has been used to treat respiratory disease (decreases mucus). It also increases brain GCase activity. There are trials exploring disease modification and dementia. Allergan has a similar drug LTI-291 that may go into clinical trials soon.
Denali has a LRRK2 inhibitor for people with the genetic mutation (LRRK2) that causes Parkinson’s. It is called DNL201. There is also a second drug DNL151 that is being tested in the Netherlands.
Finally, there is great interest in vaccine and immunotherapy trials:
There is a vaccine trial called AFFiRiS that passed its safety testing. It is moving into the next phase to see how it will affect symptoms and disease progression.
There are two antibody Infusion trials using intravenous injections. The current trials are Biogen (phase 2a) and Roche (phase 2b). The safety data from these trials has been promising, but there are not results of efficacy or disease modification.
We encourage all people with Parkinson’s to stay abreast of new and emerging therapies. It is important to regularly learn about the latest Parkinson’s treatments and medications, and to check clinicaltrials.gov for the current status of ongoing research. Even if you decide a clinical trial is not for you, you may still find it useful and hopeful to monitor the latest developments in the field.