I Ask This Of You!

I have Parkinson's diseases and thought it would be nice to have a place where the contents of updated news is found in one place. That is why I began this blog.

I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible.

I am not responsible for it's contents. I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish.

This is for you to read and to always keep an open mind.

Please discuss this with your doctor, should you have any questions, or concerns.

Never do anything without talking to your doctor. I do not make any money from this website. I volunteer my time to help all of us to be informed. I will not accept any information about Herbal treatments curing Parkinson's, dementia and etc. It will go into Spam.

This is a free site for all with no advertisements.

Thank you for visiting!

Saturday, August 2, 2014

10 Tips to Get the Most Out of Your Parkinson's Medications

Every little bit helps...

Updated July 29, 2014
Currently there is no cure for Parkinson’s disease but there are a number of medications that may help alleviate some of the symptoms.  Unfortunately the line between symptom control and side effects is a very thin one.  What may be an adequate dose to control your tremor may in fact cause dyskinesias or other side effects that are actually more troublesome than the original symptoms you were trying to treat.  A fine balance and in order to find that combination of medication that gives us maximal symptom control with tolerable side effects, we must optimize our approach to treatment.
  1. Follow a schedule.  It’s not easy facing each morning with the knowledge that your quality of life relies on the numerous medications you have been prescribed.  But not only is it important to remember to take your medications, it is imperative to take them consistently and on a tight schedule.  Certain medications wear “off” more quickly than others and it may be that you end up taking something like Sinemet every 3 hours to control your symptoms.  Other medications are longer acting and only need to be taken two or three times a day.  Regardless, the most important thing is consistency.  There are a number of alarms and applications for smart phones that are designed to help patient remember their next dose.  This type of regularity will help reduce the motor fluctuations that are aggravated by an inconsistent dosing schedule.
  2. Educate yourself on how your medications work, particularly the potential side effects that you may anticipate while taking that drug.  Recognizing what is a side effect versus a symptom of your disease is helpful information to take to the prescribing physician.  This helps them make appropriate decisions and adjustments to your medication regimen.
  3. Stick with it!  When starting most any Parkinson’s medication, there is an adjustment period during which time you may experience a high rate of side effects.  Some of these adverse reactions such as nausea or lightheadedness may in fact resolve with continued use.  The same can be said of your Parkinson’s symptoms – there may be a time following a medication adjustment, particularly if one medication is being titrated down while the other is being increased gradually, that your symptoms may worsen.  In most cases, this deterioration is short-lived.  “Sticking with it” of course does not apply to severe reactions, true allergy or significant deterioration in your Parkinson’s disease.  You should always seek medical advice if this occurs or is suspected.
  4. Keep a detailed record of when you take your medications, what type of side effects you experience, when you feel the drugs wear off and when any uncontrolled symptoms occur.  This type of record doesn’t really require a daily commitment.  A few times per week is often sufficient.  This is important because currently there is no reliable biomarker or truly objective measure of how you are responding to any particular Parkinson’s medication. It is unlike other conditions such as high blood pressure where the doctor can measure how you’re responding to a medication he’s given you a few weeks before.  In Parkinson’s disease your physician relies on your narrative and description of how you are doing with your current treatment.  Based on your accurate record and data, adjustments to your medications can be made.  A comprehensive record will help ensure the best possible management decisions.
  5. When taking Parkinson’s disease medications, there are a couple of situations where it is important to modify your diet.  Levodopa (a dopamine replacement drug) is an amino acid (the building block of protein) and therefore competes for absorption with other proteins into the brain. Often in early stages of this illness, not much of a difference is noticed but later in the course of the disease, Parkinson’s symptoms may not be as well controlled if medication is taken too close to a protein rich meal.  In general most medications are best absorbed on an empty stomach half an hour before or two hours after a meal. Another interaction one has to be aware of is in those people using MAO-B inhibitors.  Foods that are high in tyramine (for example aged cheeses, soy products, red wine etc.) should be limited.
  6. Always be aware of potential drug interactions.  Just because we are challenged by Parkinson’s on a daily basis does not exempt us from facing other health issues.  Many of us are on medications for other medical reasons.  The more drugs you take, the greater the likelihood of potential drug interactions with serious results. Therefore it is important that you keep a complete and updated list of all your medications with you so that when you visit any of the medical professionals involved in your care, they are able to see which other medications you currently take prior to prescribing their own.  As well try and be consistent with the pharmacy you use so that they too have a complete list of what you are taking and can alert you of any potential problems.
  7. Be aware (not beware!) of generic vs. brand names.   Governmental health authorities such as the FDA require generic drugs to have the same quality and performance as brand name drugs.  Although they both contain the same active ingredient, they are not required to have the same inactive ingredients.  This may lead to some variability in the rate of absorption for example or other aspects in the performance of the medication.  This difference is natural and is not supposed to be clinically significant but anecdotally, sometimes people notice a difference when they are switched from one to the other so it is a good idea to keep this in mind if you do notice a change in your symptoms after such a change is made.  The savings offered by generics however are staggering both for the consumer as well as the health care system.  On average, the cost of a generic drug is 80 to 85 percent lower than the brand name product. 
  8. Always consult your physician prior to making any medication changes or discontinuing a drug.  Because there is such a fine balance between symptom relief and side effects with Parkinson’s medications, it can be a frustrating process at times to try and find an acceptable medication schedule.  But remember that the ways these drugs work in your body and in relation to other medications is complicated, and really should be managed by your physician.  So don’t make changes on your own - in fact it can be a dangerous mistake.  For example if you discontinue a dopamine agonist abruptly, you may experience Dopamine Agonist Withdrawal Syndrome (DAWS) which consists of a number of debilitating symptoms such as nausea, vomiting, depression, anxiety, pain, suidicidality and irritability.
  9. Always keep track of your medication supply.  There’s nothing worse than running out of your medication prior to a weekend, holiday or before going on vacation.  It’s important to keep track of your medications and plan ahead to make sure you always have enough on hand and that your prescriptions have enough refills to last you until your next appointment. And always keep extra supplies of your medications in places that are accessible in case you forget to take your medications.  In your car for example or your day-to-day purse. at the cottage or with family that you visit frequently.  That way you’re less likely to be in a situation where you are without your medication. 
  10. Be prepared to change.  Even once you’ve established a medication regimen that works well for you, it will be an ever-changing process.  Not because the effectiveness of the medications wears off necessarily but because this is a progressive neurodegenerative illness and effective management will require ongoing modifications with your physician.
Until a cure is found, medications will be an inevitable inconvenience of sorts – but also a necessary one.  They help us to optimize our functioning and quality of life.  By being responsible in our approach to how we take our medications, we can further benefit from their effects and help limit their side effects.

Friday, August 1, 2014

Parkinson's UK Flash Freeze Mob

Bed Sores

Pressure ulcers – commonly called bedsores — are a big problem in the United States. More than 2.5 million U.S. residents develop pressure ulcers every year, with about 60,000 people dying each year from pressure ulcer complications.
Bedsores Can Be Painful
Bedsores Can Be Painful
High profile cases highlight how deadly they can be. Actor Christopher Reeves died from complications resulting from a pressure ulcer.
“This is not just a problem for patients and their families, but also health facilities,” said Joyce Black, Ph.D., who associate professor in the University of Nebraska Medical Center College of Nursing is recognized as a national expert in pressure ulcers. “The government won’t reimburse for Medicare and Medicaid expenses if patients get pressure sores.”
Pressure ulcers can develop in as little as three hours as a result of sitting or lying too long in the same position, she said. Those who are bedridden are most at risk, including those in hospitals and long term care facilities like nursing homes. It can happen in the home as well.
“Ulcers develop quickly depending on how hard the surface is that you’re on and how much fat  padding a person has. Thin, frail individuals develop them more quickly,” Dr. Black said.
She said pressure ulcers
 tissues when patients don’t move or continuously slide down in a chair. The blood in the area stops and the tissue dies. Most problems with ulcers occur on the buttocks, tailbone and the heel of the foot.
Early symptoms include pain, redness or purple color to the skin.
“Getting pressure off that part of the body is absolutely key,” Dr. Black said. “The sores result from lack of blood. Changing positions in bed and keeping the skin clean is the best way to prevent pressure ulcers.”
Some pressure ulcers advance into large wounds that develop deep in tissue. When the skin gets infected – a hole in the skin can develop and reach down to the bone. Surgeries to repair major wounds can cost up to $100,000.
The estimated cost of pressure ulcers is $11.5 billion per year in the United States with cost for patient care ranging from $21,000 to $152,000.
The Journal of the American Geriatric Society estimates that an average 4 to 5 percent of patients develop pressure ulcers during a hospital stay and the number is higher in long term care facilities – 23 percent.
Etiology of Pressure Sores
Etiology of Pressure Sores
Dr. Black has these tips for preventing and treating minor pressure ulcers.
·      Sit or lay in different position, walk if you can.
·      Stay off the sore spot until the pain or color of red or purple color goes away.
·      Put a pillow under the calf of the leg to keep the heel off of the bed.
·      Don’t rub the skin. It may tear.
·      Keep skin clean. The healthier you can keep skin the less chance of skin breakdown.
·      Make sure diapers get changed.
·      Turn individuals every three hours if they are on a good mattress. Every two hours if mattress is thin, frayed or worn.
·      Cover wound with dressing or apply topical antibiotic to keep wound clean.
·      Ask what the facility is doing to reduce or prevent bed sores and if you can help.
·      Ask how they are turning your loved one to get them off their back (individual should be turned on their sides-family members can help).
·      Ask what kind of mattress the patient is sleeping on. An old spring mattress with an inch padding is not adequate. Family may be well advised to go to a bedding store and get two inches of memory foam so there is       more padding on the bed.
·      Make sure the patient is eating a well-balanced meal (not junk food).
-This information provided courtesy of University of Nebraska Medical Center

How coffee protects against Parkinson's

A specific genetic variation discovered by researchers at Linköping 
University in Sweden protects against Parkinson's Disease – 
especially for those who drink a lot of coffee.
Hereditary and environmental factors interact with one another 
in the emergence of diseases, and research is often focussed 
on identifying genes and exposures that increase the risk for 
contracting diseases. But there are also genetic variations – 
mutations – and environmental factors that protect against 
the emergence of certain diseases.Neurodegenerative diseases 
such as Parkinson's have a complicated background where both 
genetic factors and exposure to  are involved.  
In a study of a million genetic malformations, the research team 
identified a variant of the GRIN2A gene as a protective 
factor against Parkinson's. The corresponding protein is 
part of a complex that is thought to play a role in several
An epidemiological study of Parkinson's patients from two counties 
in south east Sweden examined a combination of a previously 
known protective factor – caffeine – and the genetic variant
in GRIN2A. The findings show that individuals with this
combination run a significantly lower risk of developing the disease.
The study gives a molecular explanation to the protective effects 
that increased  has on the development of Parkinson's.  
Caffeine integrates with a dopamine receptor that regulates the flow of 
calcium into the cell. As dopamine is part of the human reward system, 
and the interaction of caffeine with it, it has been speculated that 
individuals with certain genetic variations are not "rewarded" to the 
same extent by a cup of coffee, and therefore would not enjoy 
the same protective effect as others. The newly published study 
shows that GRIN2A can be a part of such a genetic predisposition.
The study was conducted with financial support from the 
Foundation for Parkinson's Research at Linköping University.

More information: Naomi Yamada-Fowler, Mats Fredrikson
 och Peter Söderkvist (2014) "Caffeine Interaction with 
Glutamate Receptor Gene GRIN2A: Parkinson's Disease in 
Swedish Population." PLoS ONE 9(6): 

Is light therapy a potential treatment modality in Parkinson’s disease?


You can find out more about NPF's National Medical Director, Dr. Michael S. Okun, by also visiting the NPF Center of Excellence,University of Florida Center for Movement Disorders & Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life.
Recent research has indicated that there may be unexplored symptomatic benefits by using light therapy to treat Parkinson’s disease patients.  This “light” approach is particularly appealing in Parkinson’s disease because patients commonly suffer from excessive daytime sleepiness, fatigue, sleep disorders, as well as depression—and all have been reported to potentially improve.  In this month’s What’s Hot Column, we explore the scientific underpinnings of the brain’s natural sleep-wake cycle; called the circadian rhythm.  The scientific term circadian rhythm is derived from the Latin words circa which means approximately, and diem which means day. The human sleep wake cycle has this been referred to as a circadian rhythm as it occurs everyday. Melatonin has been heavily implicated in the human sleep-wake cycle, and we will review both melantonin and light therapy, as potential symptomatic approaches for Parkinson’s disease.

Many investigators have focused on melatonin as an important chemical in the human sleep-wake circadian rhythm.  Melatonin is manufactured in the center of the brain in a structure called the pineal gland.  René Descartes referred to the pineal gland as the “seat of the soul.”  Melatonin from the pineal gland can trigger sleepiness, and can also lower body temperature.  The manufacture of melantonin is disrupted by exposure to light.  Researchers have postulated that by intervening in the melatonin pathways by exposing people to bright light could have a therapeutic benefit.
Videnovic and colleagues at the National Parkinson Foundation Center of Excellence in Northwestern University recently explored blood melatonin tests sampled over 24 hours.  The tests were designed to uncover some of the mysteries of fatigue, and the sleep-wake disturbances in Parkinson’s disease.  The researchers studied twenty Parkinson’s patients and twenty control patients without Parkinson’s. Melatonin blood levels were checked every thirty minutes for twenty-four straight hours.  Parkinson’s patients were observed not to secrete melatonin in a normal pattern.  Parkinson’s disease patients in the study who suffered from excessive daytime sleepiness or fatigue had more dysfunction in the patterns of melatonin than those without excessive daytime sleepiness or fatigue. How long you had Parkinson’s disease, how severe your motor symptoms were, and what medications you were taking, were not related to the circadian rhythm.  The author’s postulated that sleep-wake circadian function could be improved by timed exposure to bright light, and also potentially by exercise.  There have been several other small studies that have also suggested Parkinson’s disease motor, as well as non-motor symptoms, may improve with light therapy.

In May 2014, at the 66th Annual Meeting of the American Academy of Neurology (AAN), Videnovic and colleagues presented another study on the preliminary results of light therapy for excessive daytime sleepiness or fatigue. There were thirty patients included with an average duration of disease of approximately seven years. The study intervention was bright light therapy (5000 lux) or dim red-light therapy (300 lux) delivered for two hours a day for fourteen days.  The results did not reveal a difference between the groups, however a closer look at the scores in this small study revealed that the Epworth Excessive Sleepiness Scale improved by 2.3 points in the dim red light group, and 4.3 points in the bright light therapy group.  Though these results were not robust, they suggested, at least the possibility, that light therapy could be optimized for better results in Parkinson’s disease.  Some researchers have suggested that better penetrance of light therapy could be delivered through other techniques including deep brain electrodes, but this remains highly investigational and has only been attempted in animals.

If melatonin release is blocked by exposure to light, and exposing patients to light may improve Parkinson’s disease symptoms, why would patients intentionally take melatonin?  Melatonin (N-acetyl-5-methoxy-tryptamine) is also an antioxidant. Neurodegenerative disorders such as Parkinson’s disease have been linked to oxidative damage and free radical generation, and some people believe that melatonin may help in blocking neurodegeneration.  There are however no human studies to support the notion that melatonin slows or blocks neurodegeneration.  Some patients also use melatonin for sleep issues, though again there are no large well-controlled studies to support this notion, and in many cases reports have surfaced that melatonin replacement may actually worsen sleep in Parkinson’s disease.  I have personally listened to several patients who have tried melatonin, and reported worsening in sleep.  If you decide to try melatonin (which is over the counter) for sleep, you should do it under the guidance of a physician.  Until more data is published, we cannot make a recommendation as to the usefulness of melatonin replacement for sleep issues.

The bottom line is that there is accumulating evidence that melatonin is important to sleep and to excessive daytime sleepiness in Parkinson’s disease.  Melatonin can possibly be powerfully modulated by light therapy and also possibly by exercise.  Melatonin pills may not be the answer for many patients with Parkinson’s disease and could potentially worsen symptoms.  More research will be needed to clarify how shining a light on Parkinson’s disease may provide a new option for patients, especially those with excessive daytime sleepiness.
June 2014

Everything You Need to Know About Medical Marijuana (THC) and Parkinson’s Disease

You can find out more about NPF's National Medical Director, Dr. Michael S. Okun, by also visiting the NPF Center of Excellence,University of Florida Center for Movement Disorders & Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life.

There has been a recent and evolving media blitz concerning the potential use of medical marijuana (tetrahydrocannabinol, THC) in Parkinson’s disease patients.  All of the attention to marijuana has been largely a result of multiple states passing legislation to legalize and to regulate the drug; or to alternatively make it available for select medical diagnoses.  In this month’s National Parkinson Foundation What’s Hot in Parkinson’s Disease column, I will review the current state of the research into medical marijuana for Parkinson’s disease.

A recent report from the guideline development subcommittee of the American Academy of Neurology (AAN) tackled the evidence-base supporting the use of marijuana for neurological disorders.  Spasticity, central pain syndromes and bladder dysfunction (disorders not including Parkinson’s disease) seemed to be improved with marijuana use. The few available studies revealed that marijuana was not helpful in Parkinson’s disease related tremor or levodopa-induced dyskinesias. The report was careful to outline the risks and the benefits of medical marijuana, and it recommended education and counseling for anyone considering this option. The risk of serious psychopathologic effects (hallucinations, etc.) was cited to be about 1%.

In addition to the AAN report, there have been a few recent papers supporting the use of marijuana for specific Parkinson’s disease symptoms (motor, mood, quality of life, sleep), however all have suffered from methodological issues such as including small numbers of patients, and not including a proper control group.  Katerina Venderova in 2004 (Movement Disorders Journal) conducted a survey of Parkinson’s disease patients on marijuana (cannabis) and reported that “39 patients (45.9%) described mild or substantial alleviation of their PD symptoms in general, 26 (30.6%) showed improvement of rest tremor, 38 (44.7%) had improvement inbradykinesia, 32 (37.7%) had alleviation of muscle rigidity, and 12 (14.1%) had improvement of L-dopa-induced dyskinesias.  Only 4 patients in this survey (4.7%) reported that cannabis actually worsened their symptoms. Patients using cannabis for at least 3 months reported significantly more alleviation of their Parkinson’s disease symptoms in general.”  Like Venderova who conducted her survey in Prague, we have also had Parkinson’s disease patients phone us at the free 18004PDINFO National Parkinson Foundation hotline, and detail personal experiences and positive stories supportive of marijuana in Parkinson’s disease.  Collectively, the problem with all of these types of personal reports has been the lack of scientific rigor necessary to truly understand the effects of marijuana on Parkinson’s disease.

In a recent review in the New England Journal of Medicine, the National Institute on Drug Abuse (NIDA) Director Dr. Nora Volkow carefully outlined the adverse health effects of marijuana use.  In her article Dr. Volkow pointed out that marijuana, which is thought of by much of the public as a completely harmless drug, can have serious adverse effects.  She makes the following important points:
  • In the U.S. it is the most commonly used “illicit” drug
  • 12% of those 12 years or older used it in the past year
  • Smoking is the most common way people use marijuana and this can harm the lungs
  • There are available edible forms including teas and foods
  • Approximately 9% of users will become addicted, and there may be a withdrawal syndrome which can make quitting difficult for some users
  • Use in adolescence and early adulthood can contribute to worsening brain function, decreased connections between brain regions, and a decrease in IQ
  • Heavy marijuana use can rarely lead to psychosis and hallucinations
  • Marijuana can reduce cognitive and also worsen motor function
  • Your risk of a car accident doubles if you have recently smoked marijuana
  • The potency of the THC content in marijuana has increased from 3% to 12% in the last several decades making accidental overdoses, especially with food products, much more common
  • The best evidence supporting marijuana use has been shown in glaucoma, nausea, the AIDS wasting syndrome, chronic pain, multiple sclerosis, and epilepsy
Scientifically it is not crazy to think that marijuana may play some positive role in the alleviation of Parkinson’s disease symptoms.  There are cannabinoid (THC) receptors all over the brain, and these receptors seem to be concentrated in a region important to Parkinson’s disease, commonly referred to as the basal ganglia.  In fact, the globus pallidus and thesubstantia nigra pars reticulata, which are structures within the basal ganglia, are some of the most densely packed cannabinoid (THC) receptor areas in the human body.  It is therefore not beyond reason to think that a drug directed at these receptors might positively influence the symptoms of Parkinson’s disease.  Indeed, many drug companies remain interested in compounds influencing these receptors.

What is the bottom line for information that a person with Parkinson’s disease will need to know if considering medical marijuana.  Marijuana should never be thought of as a replacement for dopaminergic and other approved therapies for Parkinson’s disease.  Second, though most available large studies have not shown a benefit, that does not mean that there will not be a benefit.  Much more research will be needed to understand which patients, which symptoms, and how best to safely administer medical marijuana in Parkinson’s disease, especially over the long-term.  It may turn out that non-motor features such as depression,anxiety, and pain respond best, but studies are desperately needed to sort this out.  Parkinson’s disease patients living in states where marijuana has been legalized for medical use should be aware of the dangers outlined by Dr. Volkow, particularly the effects on the lungs, the dangers of driving, and accidental overdoses (particularly with food items).  Finally, states will need to develop training programs for doctors and medical teams prescribing marijuana, so that the Parkinson’s disease patient on medical marijuana can be kept as safe as possible.

he National Parkinson Foundation           August 2014

Thursday, July 31, 2014

Untangling Neuropsychiatric Symptoms of Parkinson's Disease

Scientists and physicians at the University of California San Francisco (UCSF) are leading a $26 million research program using advanced technology to characterize human brain networks.  This will enable them to better understand and treat a range of psychiatric disorders including anxiety, major depression and addiction. The new program, launched in support of President Barack Obama’s BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative, will fund two projects focusing on anxiety and depression in Parkinson’s disease and epilepsy.
UCSF physician-researchers are recording brain activity in people with Parkinson’s disease and epilepsy to identify brain-signaling pathways associated with anxiety and depression. The aim is to develop stimulation devices and therapies that guide the brain to strengthen alternative circuits.
“Most people think of Parkinson’s as a movement disorder,” saysPhilip A. Starr, MD, PhD, professor of neurological surgery and surgical director of UCSF’s Bachmann-Strauss Dystonia and Parkinson’s Disease Center of Excellence. “But it is in fact a neuropsychiatric disorder that includes problems with mood, thinking, anxiety, impulsivity and even a form of addiction to medication known as dopamine dysregulation syndrome. These symptoms are as fundamental a part of the disorder as slow movement or tremor.” He explains that the psychiatric symptoms of Parkinson’s disease wax and wane, so the recordings should reveal how brain activity changes when patients enter a depressed or anxious state.
The five-year, multi-institutional project is funded by the Defense Advanced Research Projects Agency (DARPA) and involves more than a dozen scientists, engineers and physicians at UC Berkeley, Cornell University and New York University.

Got a Movement Disorder?  Experts Offer Tips on Staying Active

There’s no overestimating the benefits of exercise for individuals with dystonia, Parkinson’s disease and other movement disorders. Research has found that exercise can strengthen brain function and motor capabilities, improve balance, reduce stress and even improve sleep. Summer is a great time of year to be outdoors and active, if you are able. Here are tips on staying active—and doing it safely:
  • Before starting an exercise program of any type, discuss your plans with a health professional. “Ease into exercise slowly, stay in tune with your body, and don’t try to do too much too soon,” says Dr. Rebecca States, a professor of physical therapy at Long Island University Brooklyn. While it’s normal to feel tired after starting an exercise routine, you should not completely exhaust yourself.”
  • Exercise at your own pace. Find a level you’re comfortable with and avoid comparing yourself to people without movement disorders, advises physical therapist Bill Gallagher PT, CMT, CYT, a master clinician in integrative rehabilitation at Mount Sinai Medical Center. “Running 10 miles is easy for many active, healthy people,” he says. “But for someone with dystonia, walking around the block may be an equally big accomplishment.” 
  • Once you’ve started an exercise regime, experts say it’s okay to push yourself to the next level, but do so carefully. “For someone who has not been active, I would recommend—as a start—walking for 15 minutes, two or three times a week,” says States. “As exercise becomes easier, increase the time to 30 minutes. Also, those who are not used to walking for fitness should begin with a partner, in case balance issues arise.”
  • Consider seeking out an appropriate-level yoga class with a yoga instructor who encourages skill level adaptations. “Other activities like tai chi and feldenkrais can also help improve body awareness,” adds States.

Make September Dystonia Awareness Month 
A coalition of dystonia patient organizations is spearheading a petition drive to make September Dystonia Awareness Month.  The petition drive will begin September 1 and 100,000 signatures are needed from anyone age 13 and up.  Once the petition gets the required number of signatures, White House staff will review the petition, forward it to the appropriate policy experts and issue an official response.  This petition will help bring awareness to our leaders and our nation about the need for further dystonia support. 

Parkinson’s Vaccine Safe in Phase I Trial

FoxFeed Blog

Posted by  Maggie McGuire, July 31, 2014
Parkinson’s Vaccine Safe in Phase I Trial
A treatment that could slow or stop Parkinson’s disease today took one step closer to pharmacy shelves. The Austrian biotech AFFiRiS AG announced positive results of its Phase I safety trial of a vaccine against alpha-synuclein.
Alpha-synuclein is the sticky protein that clumps in the cells of people with Parkinson’s, and AFFiRiS hopes to stop disease by inducing antibodies against alpha-synuclein accumulation. The Michael J. Fox Foundation funded this work with close to $2M, first with a grant for a pre-clinical study and then $1.5M in 2011 for the Phase I trial. It’s the first drug against alpha-synuclein to reach clinical testing.
“A treatment that could slow or stop Parkinson’s progression would be a game changer for the five million worldwide living with this disease and the many more who will become at risk as our population ages,” said MJFF CEO Todd Sherer, PhD. “This trial is one of the most promising efforts toward that goal.”
In two different doses the drug, called PD01A, was safe and tolerable. Half of those vaccinated showed alpha-synuclein antibodies, which is a promising but very early sign. Further trials will test PDO1A’s benefit to patients.
The next step is a boost study that will test the safety and effect of a boost vaccination (another dose). MJFF will support that trial, which will take place in Vienna, Austria and start recruiting in September.
The AFFiRiS trial is one study in the Foundation’s robust alpha-synuclein portfolio. 

Wednesday, July 30, 2014

Driving and Parkinson’s

Driving and Living with Parkinson’s

The ability to drive a car is a powerful symbol of independence that is closely tied to self-esteem and self-efficacy. Many people with Parkinson’s disease (PD) continue to drive safely long after their diagnosis. While the symptoms of Parkinson’s and the side effects of its medications may affect a person’s driving ability, the diagnosis alone does not tell the whole story. Much depends on a person’s specific symptoms, as well as the presence of other changes that may come with aging. So how can people with Parkinson’s and their loved ones be confident that they are safe on the road?

 Driving and PD
Driving is a complex task. It requires visuospatial processing (the ability to gauge the distances between objects in the environment); physical strength; agility; good reaction times and reflexes; and intact eyesight and hearing. It also requires the ability to keep track of several things simultaneously, including the speed of your car, the presence of other cars and objects in a rapidly moving environment, and the interior mechanisms of the car. Most people who have a lifetime of driving experience behind them have honed these skills over the years, and are able to automatically integrate the complicated tasks that are needed for driving. However, the aging process affects driving skills, and these may become further compromised in the context of Parkinson’s. And there are specific Parkinson’s-related symptoms that may affect driving. These include: 

Bradykinesia, or slowness of movement. 
This symptom is important because driving often requires quick reaction time.

Cognitive changes.
Although PD is a movement disorder, its cognitive aspects — chiefly, executive function (the ability to manage multiple tasks) and impaired visuospatial processing — have the most important impact on driving. People with PD may have difficulty multi-tasking — for example, driving while listening to the radio. 
Impaired visuospatial processing can result in veering towards the side of a lane, impaired ability to park, misjudging turns, clipping side view mirrors, and misjudging the speed of other vehicles. Visuospatial impairment is a key reason that passengers become concerned about a driver’s abilities. Lastly, memory difficulties may make it hard for people with PD to focus — particularly when they are driving in unfamiliar places.

Vision changes. People with PD may have trouble with contrast sensitivity, which means visually differentiating objects from their backgrounds. In addition, it may be difficult to visually scan the environment quickly enough to anticipate and react to a change — for example, having to suddenly step on the brakes if a car ahead of you quickly changes lanes. 

Drowsiness. The side effects of medications, or sleep difficulties, can cause a person to become suddenly and unpredictably tired or sleepy. We know from research that sleepy drivers can be dangerous drivers.

Movement symptoms. 
Tremors and dyskinesias (abnormal, involuntary movements) may make it difficult for people with Parkinson’s disease to get into the car, or to control it.

 Are You a Safe Driver?
Everyone, not only people with PD, should be concerned about being a safe driver. One way to find out how you are driving is to ask a trusted person to observe you at the wheel. Then review your own record. Have you had any crashes or near misses in the last year? Are other drivers honking their horns because your driving is unpredictable?
If you are having difficulty driving due to PD, talk to your doctor. You may want to undergo a formal driving assessment which you can find through a hospital’s occupational therapy department. You can also look for a driving remediation instructor affiliated with a hospital. Note, health insurance does not typically cover a driving assessment.

Testing Driving Skills
If you do choose to undergo a driving assessment, there are several tests that may be administered in an office setting. These tests often focus on visual abilities, capacity for multi-tasking, speed of response, ability to maintain focused attention and mental flexibility. Visual and motor reaction times are measured with computer tasks and physical activities, such as pressing down on a mock brake pedal when a red light comes on. A more common option is to take a road test, with an instructor in the front seat and sometimes an occupational therapist in the back. The road test will include driving on large and small roads, making turns, stopping at signs and exercising skills such as maintaining a steady speed and staying in the correct lane. 
Making sure that a person is a safe driver does not end with passing the test. It also requires following a set of practices in real world driving. These may include planning routes ahead of time; installing an adaptive steering device (if needed); restricting driving to the “on” periods of the PD cycle when medications are working optimally; driving with a co-pilot; and staying off the roads at rush hour or after dark. People with PD should also make it a habit to scan the road far ahead, to anticipate problems and to plan responses. Sometimes, the result of a driving assessment is not a clear “pass” or “fail.” If this happens, a person can generally work on their skills and take the test again. 

When to Give up Driving and Who Decides? 
Learning to drive is a rite of passage. Though less recognized, the decision to stop driving is also a rite of passage — it can change quality of life, increase the burden on care partners, and lead to depression and social isolation. It may also motivate individuals to move to a setting that offers alternative forms of transportation.
Plus, the decision as to whether or not to give up driving is much less well-defined than that of getting a license. The “older driver” is defined differently from state to state and each Department of Motor Vehicles varies in terms of how it handles license renewal for older drivers. Most people do not want the privilege of driving to be taken away from them. And no one wants to be the “bad guy” who tells a person that he or she is not driving safely. But if there are concerns, it is important to start these conversations early.
A driving assessment can help a person make a decision about whether to give up the car keys while avoiding the tension that comes from involving loved ones. It is important to note that the decision to stop driving can evolve over time, rather than being made suddenly. Undergoing an assessment does not always mean getting a flat “yes” or “no.” It may be possible to continue to drive by setting limits, like driving less on highways, and not at all on days when a person is not feeling well. If and when you or a loved one does make the decision to stop driving, there are often programs available to help you get to where you need to go.

For many people with PD, driving is the most practical way to do errands, meet friends and get to work and appointments. Driving less, or deciding to stop driving altogether, are important life changes. The biggest challenge is finding the right balance: you do not want to deny yourself the privilege of driving sooner than is necessary but you certainly do not want your driving to put yourself or others in harm’s way. All of these decisions can be less stressful if you plan ahead.

Margaret O’Connor, Ph.D, A.B.P.P., and Lissa Kapust, L.I.C.S.W., of Harvard Medical School and Beth Israel Deaconess Medical Center, originally presented this topic as a PD ExpertBriefing. Available by visiting,

Dopamine Agonists

What are the facts

  • Dopamine agonists are a different class of drugs than levodopa.
  • While levodopa is converted in the brain into dopamine, dopamine agonists actually mimic the effects of dopamine without having to be converted.
  • Dopamine agonists are often the first medication prescribed to treat PD, but can also be used in later stages of PD with carbidopa/levodopa.
The following are the most commonly prescribed dopamine agonists in the U.S. :
  • Pramipexole (Mirapex®)
    • Approved by the FDA in 1997
    • Effective in the early treatment of the motor symptoms of PD and plays an important role in controlling motor fluctuations.
  • Ropinirole (Requip®)
    • Approved by the FDA in 1997
    • Effective in the early treatment of the motor symptoms of PD and plays an important role in controlling motor fluctuations.
  • Rotigotine (Neupro® patch)
    • Formulated as a once-daily transdermal (skin) patch that is changed every 24 hours.
    • Clinical trials have shown Neupro is just as effective as the oral dopamine agonists: pramipexole and ropinirole.
    • The most common side effect is skin irritation, which is usually mild. Patients are able to tolerate the patch better when they rotate the sites where they adhere the patch.
    • Although the patch was recalled in 2008 because of a manufacturing and quality control issue, , it was reintroduced to the U.S. market in 2012, following improvements and a study of the new formulation.
  • Apomorphine (Apokyn®)
    • Apomorphine was first used to treat PD in 1950, but its use was associated with many side effects, especially nausea and vomiting.
    • In the 1990s apomorphine was released in a self-injectable form. It is now used as a “rescue” drug for people with advanced PD and severe “off” episodes.
    • It can be used as many as five times per day as a “rescue” agent.
Dopamine agonists can be used effectively as a single drug in early stages of PD or in combination with carbidopa/levodopa later on.

What are the Side Effects?

  • Excessive daytime sleepiness
  • Visual hallucinations
  • Confusion
  • Swelling of the ankles
  • Dyskinesia (not as common)
  • Compulsive behaviors (such as uncontrolled shopping, gambling, eating, and sexual urges.)
Note: Pergolide and Bromocriptine are no longer available in the U.S. as treatment for PD.
Caution: PD medications may have interactions with certain foods, other medications, vitamins, herbal supplements, over the counter cold pills and other remedies.  Anyone taking a PD medication should talk to their doctor and pharmacist about potential drug interactions.