The Art of Caring

Originally posted on Parkinson's Women Support:


JUNE 14, 2013 | by Darcy Blake | Now that you have Parkinson’s Disease, thoughts of the quality of your care arise as you become less independent. You hear a patient’s stream of complaints that triggers a caregiver’s reaction delivered between clenched teeth and you shutter, “I hope I don’t become like that!” Understandably, both parties have reasons for their behaviour.

Of course, if you have a spouse, your caretaker is legally signed up and selected, unless they are more feeble or crankier than you. If you are single, you have to seek outside volunteers such as willing children, loving  friends or good paid help. Any way you look at it, the fact is some people seem to do a better job of caring than others. We all know people who are the super-talented giving types. They give their time to others without showing a sign of resentment, exasperation, or fatigue the…

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High Risk of Prostate Cancer in Parkinson’s Patients Taking STALEVO : By Dr. De Leon

Painting by Jorge Jm Lacoste

This is the age of knowing….when a urine flow is more than just a flow.”

Aside from the fact that Parkinson’s disease is proving to be a systemic disease affecting mind and body certain treatments as well as carrying certain Parkinson’s genes like the LRRK2 and PARKIN gene which seem to predispose those who carry these mutations to have an increase in certain types of cancers like breast, prostate and melanoma.

As I have discussed previously in previous blogs-  – concerning dopamine effects “Dopamine: Friend or Foe?” and “Parkinson’s disease and melanoma”, Parkinson’s patients have a higher risk of melanoma 2-4 x the risk which according to some studies appears to be higher in men. This effect is both due to medications as well as genetic predisposition by those who have PD. Concomitantly, men with PD also have an increase risk for prostate cancer (2.4 % vs.  .5%) This increase risk extended to first, second and third degree relatives. This came from the Stride PD (STALEVO reduction in dyskenesia evaluation) study (14 countries participated including France, Australia, & the U.S. with over 300,000 patients) which suggested an increase risk of prostate cancer in men among those taking STALEVO (carbidopa/levodopa/comtan) vs. those taking Sinemet (carbidopa/levodopa) alone.

Since Parkinson’s disease is associated with pain, stiffness along with bladder dysfunction along with urgency and frequency the signs and symptoms of prostate cancer may be difficult to distinguish unless you are aware of it and actively thinking about it. So make sure you discuss with your primary care doctor, neurologist, and/ or urologist about the increase risk if you are taking this medication so they can follow appropriate protocol and do more careful and frequent screening than otherwise recommended particularly since guidelines for screening have changed.

Symptoms of prostate cancer include:

  • Need to urinate frequently especially at nighttime
  • Difficulty starting or stopping urine
  • Weak or interrupted flow of urine
  • Painful or burning with urination
  • Difficulty with a erection
  •  Painful ejaculation
  • Blood injuring or semen
  • Frequent pain or stiffness in low back or  upper thighs or hips

At present there are no guidelines from Academy of Neurology, that I am aware; thus, my personal recommendations are to follow the Academy of Urology recommendations.

According to the urology guidelines, PSA (prostate specific antigen) is no longer necessary recommended for men under age 40, nor for ages 40 to 54 unless at high risk ( e.g. family history or in this case intake of Stalevo which gives a fivefold  increase in risk)-the mortality rate due to this cancer in this age group is 1:1000. Thus, the greatest screening benefit using the PSA test is in the age group of 59 to 65 years old according to Academy of Urology. Furthermore, in men over 70, screening is no longer recommended either unless life expectancy assumed to be greater than 15 years ( i.e. male is in extremely good health). Even when screening is done, recommendation is to do test every 2 years.

Keeping in mind the increase risk of prostate cancer particularly if you have family history of this disease if you are taking Stalevo make sure to discuss with your physician to ensure appropriate follow up particularly if you are a young man.

Remember, Prostate cancer is a treatable disease if caught early!

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Depression in Neurological Diseases like Parkinson’s: By Dr. De Leon

You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” Hunter – Patch Adams ( one of the best performances by R. Williams)

In the advent of Robin Williams untimely demise, a great deal of spark and conversation has ensued around the topics of mental illness including depression anxiety and bipolar diseases well as their connection to Neurodegenerative diseases like Parkinson’s.

Let me begin by saying first that although there is news of Robin Williams’s early diagnosis with PD -we do not have any details on his actual neurological condition or whether he was on treatment or not?

Furthermore, we must recall that it has been said that he battled with bipolar disease most of his adult life. Bipolar disease is more likely to result in a higher suicide risk and suicidal ideation and behavior compared to Parkinson’s. Nevertheless, we should not underestimate the severity of depression in any patient no matter the cause. And anyone suffering any type of mental illness like depression, anxiety, bipolar disease, etc. should seek immediate attention and get under the care of a specialist.

But we do need to be aware of some of the facts.

Depression is found to be more common in certain diseases like Parkinson’s, Alzheimer’s, multiple sclerosis, epilepsy, migraine, and stroke.

This depression is not caused by the fact that patients are given chronic progressive mostly incurable diseases; although, certainly the notion of having these illnesses has sometimes a negative impact on an individual and can accelerate or worsen symptoms. Furthermore, some of the medications used in the treatment of these illnesses themselves can cause depression, anxiety and other mood disorders. (e.g. amantadine, L-dopa, baclofen, bromocriptine, etc. while some meds that are used to treat pain in PD like those in the seizure class-depakote, lamotrigine, carbamaepine, etc.; and of course SSRi’s-Cymbalta, Zoloft, Lexapro, Effexor, etc. can be beneficial)  in the majority of neurodegenerative diseases, the depression precedes the neurological deterioration as a harbinger of  things to common.

In the case of PD, and Alzheimer’s these can be the very first clues of something amiss especially when there has never been a prior history of mental illness, depression or family history of such problems. According to the National Institute of Mental health roughly 18 million Americans suffer from depression yearly with a 12 month period. Depression is characterized by loss of appetite, although sometimes can be the opposite, loss of interest In things that used to bring pleasure and happiness, poor sleep or too much sleep, lack of energy, suicidal thoughts, poor concentration, feelings of guilt, and low self esteem these symptoms last longer than 2 weeks and the key is that the interfere with activities of daily living.

Women are twice as likely to suffer from depression than men which already puts PD women at higher morbidity this compounding effect maybe one of the reasons are now finding out that women with PD have more negative effects (meaning non-motor symptoms) like depression as opposed to men with PD who have more tremors (positive symptoms)…roughly about 50 % to 60 % of all PD patients suffer depression at one point during their illness and about 1/3 of patients present with depression as an early symptom before diagnosis. Yet despite this knowledge, the overall risk of suicide in PD is somewhat controversial. One study, in 2001 in the U.S. including more than 144,000 people with PD found the rate of suicide in general population to be 10 times greater than in the Parkinson’s population while another study done in 2007 in Denmark found the rate of suicide among PD patients to be equal to those in the general population. Another in 2009 said PD patients although appearing to be at higher risk for depression, they truly were not at higher risk for suicide compared to general population of Denmark. Yet, one thing this study highlighted was the  increase in suicidal ideation (thoughts); this was found to be much greater among those with PD than in the general population. This last piece of information is vital to help us remember and keep in mind of the potential for a slip for those suffering from PD. The possibility of suicide is ALWAYS there and given the fact that some of the medications can trigger or worsen or even cause mood disorders, we have to be extra vigilant as patients, caregivers, and health care professionals to discuss this subject at every visit especially when there are concerns before symptoms get out of hand. There are many treatments for depression including medication. I have discovered that in PD patients, the first step is often a matter of adjusting medications if discussed early. In severe cases (ECT) electroconvulsive therapy has been instituted. Treatment of depression and other mood disorders often requires a team approach including a counselor, therapist (behavioral), psychiatrist, psychologist, and neurologist. (Don’t forget about caregivers too- they also have high rate of depression correlating with extent of care)

It is also extremely important to realize that the highest risk and higher than expected rate of suicide noted to date among PD patients has been among those that have undergone DBS particularly in those that had depression or were single. This is why is crucial if you are considering this treatment that you do not partake if you have no social support or have history of mood disorders like depression. (unless absolute last resort and are under strict supervision by a team of specialist as I described above throughout entire life-this is my opinion) Make sure that you seek opinion of an expert that has done thousands of DBS to get best outcome.

So, even though, we have lost a great entertainer and we mourn his loss, his passing although uncertain as to the cause which led him to his final acts of desperation has provided us with a stepping stone to a new beginning of discussions to remember to treat the person and NOT just the disease- no matter if its Parkinson’s, Alzheimer’s, Multiple sclerosis, Bipolar disease or another chronic illness.

Let us remember to keep in mind  all those that suffer mental illnesses like depression …..

If you have questions regarding your Parkinson’s or think that you might have Parkinson’s and depression

… I invite you to call the National HelpLine of the Parkinson’s Disease Foundation at (800) 457 6676 or email us at

Otherwise contact  or or


Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at you can also learn more about Parkinson’s disease at or at;, All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at contributor Contributor

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10 Tips for Managing Drooling in Parkinson’s: by Dr. De Leon

Sialorrhea or drooling as is commonly known refers to pooling of saliva in the mouth. It occurs around 50-80% of all Parkinson’s patients particularly in men. The excess saliva then begins to literally spew out because of difficulty swallowing. Normally we produce about a liter of saliva a day which helps us break down food and keep our mouths moist and protect against bacterial infections in the gums. Ordinarily, we swallow such quantities without giving it a second thought. However, as Parkinson’s disease advances and our swallowing muscles become stiffer and slower it is sometimes difficult to keep up with the enormous production and some of it unfortunately ends up around the outside of our mouths or spilling unto our clothing causing great social embarrassment. But also because it lingers in the corners of our mouths it can cause sores and tissue break down as well as give us halitosis (bad -stale breath). Worst if we develop a large amount of pooling of saliva we can accidentally swallow a big bolus or gulp in to the lungs causing “aspiration pneumonia” landing patients inadvertently into the hospital.

Therefore, it is extremely important that if you are experiencing excessive saliva or drooling that you discuss with your physician immediately to avoid aspiration, anxiety, or social embarrassment. You no longer have to be ashamed or self conscious in public while eating, talking or going out because you have to carry around a try or feminine pad as several of my patients have done in desperation in an attempt to collect all the excess saliva.

This dramatic sight ingrained in my brain permanently is the reason why I write about this so no one has to suffer this type of humiliation any further.

 Here are some helpful tips & treatments options to help with this pesky and often overlooked problem in hopes of returning patients to a normal life.

1) First and foremost, there needs to be a medication adjustment – typically an increase of medication (levodopa or dopa agonists) to improve stiffness and slowness of muscles involved in swallowing including tongue, lips etc.

2) speech therapy to strengthen muscles around the lips and also swallowing should also be instituted concomitantly particularly to avoid aspiration.

3) physical/ occupational therapy along with increase medications should also be considered  to improve posture because the tendency to stoop forward with head forward and chin outward (typical Parkinson’s stance) causes pooling of saliva to front of mouth along with the help of gravity easier. The team of expert therapist will help instruct on proper sitting techniques as well as cues to-try to keep head up so that saliva naturally drains to the back. Sitting upright also helps saliva go down so once again cues can be thought to remember to do this at all times.

4) medications like Levsin may help to reduce drooling. However, these may not be used if severe constipation or extremely slow gut motility is present.

5) Tricyclics medications (e.g. Elavil) because of its side effects especially tendency to dry mouth are sometimes good starts and frequently used but these have to be used with caution because in the elderly or those that have problems with orthostatic hypotension, severe constipation this class of medication can make things worse for those people.

6) extremely important is to review medication list with your physician because some medications are known to cause increase salivation like some antipsychotics such as Clozapine.

7) keep hard candy in mouth (sucking it) sugar free preferably to avoid cavities and also because sugary foods increase production of saliva. Therefore, minimize sugary types of foods. If you must have chocolate try sugar free- Godiva has some excellent choices! You may also suck on ice chips to decrease drooling.

8) drink fluids more frequently to “wash down” saliva; preferably drink water which will also help decrease constipation.

9) do lip exercises to improve lip seal and prevent saliva dripping out – hold a wide smile (bet you makes you feel better too!) then pucker lips like you are going to blow a kiss or whistle- do these several times a day. Or suck from straw when you drink.

10)  Anticholinergic drugs (e.g. Artane or antihistamines) may also be use. However, not everyone is able to use these because of cognitive problems it can cause so if someone is already. confused, forgetful or hallucinating this will not be a good choice.

****Best remedy I have found however is injection of Botox into salivary gland …this is local treatment with little or no side effects especially systemic ( will not interfere with other medications) and duration of Botox last anywhere from 3-6 months sometimes longer. Now, fortunately we have different types of botulinum toxin so you have many choices. In past, with severe cases there have been reports of radiation to salivary glands to make less effective or surgically removing salivary glands. But, I don’t commend these drastic techniques with all the other treatments unless everything has failed and drooling extremely severe causing aspiration especially in light of fact that we need saliva to aid in digestion, lubrication of our mouths and throat and prevent plaque buildup. If our mouths become too dry (Xerostomia) as I mentioned in another blog this can lead to severe pain (‘burning mouth syndrome’). I have had excellent results with Botox injections over the years without need for more drastic measures. *******

Finally, brush your teeth regularly after each meal to reduce probability of infection that may set in due to stagnant saliva.

Nevertheless, all of these treatments are subject to your own physicians discretion and do not recommend making any alterations to your medicines without first discussing with your doctor or healthcare provider.

FYI -20% of PD patients also experience post nasal drip (dripping of mucous into throat) worst at night causing cough, sneezing, and interfering with sleep. By drying out mucous with these medications and remedies this problem most likely will be resolved as well. Sometimes your doctor may prescribe a decongestant as well.


Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at you can also learn more about Parkinson’s disease at or at;, All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at contributor

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Tips for Dealing with Sleep Disorders in Parkinson’s : by Dr. De Leon

As many of you know sleep problems can wreak havoc with our lives if f we don’t get enough rest we are liable to turn from a mild manner soft spoken individual to an irritable cranky creature!

Not only does poor sleep affect our mood but also causes poor concentration leading to memory loss, fatigue, increase weight, and poor judgment. All of these can mimic actual Parkinson’s symptoms either from disease or as side effect of medications.

Therefore, when we don’t get enough sleep we are doing ourselves a disservice and making our symptoms seem worse while making our doctors jobs more difficult as they try to sort out the source. One way to avoid this confusion is to tell your doctor immediately if you are having trouble with sleep and be specific. The more details you tell them the better they are able to help you get back on your feet.

Keep a record of your problem :

1) Is the problem staying asleep

2) Falling asleep

3) Pain at night

4) Restless legs

5) Trouble turning- getting stuck in one place or in the sheets

6) Going to bathroom to often (as you are falling as sleep or does it awake you from sleep)

7) Trouble breathing and snoring

8)  Acting out dreams at night and or talking during sleep

9) Vivid dreaming and or hallucinations

10) Disturbance in sleep wake cycle-sleepy during day and awake at night

Sleep is a way we humans encode all the information we have learned during the day and store for long term. If sleep becomes interrupted enough this will lead to short term memory loss making it seem like you might have cognitive problems when I fact may just be sleep deprived. However, for those that do have early cognitive problems can through them into full blown psychosis and hallucinations and for those that have advance dementia or memory loss it will make things much worst. Not only this but also increase high blood pressure and risk of having a stroke and early death particularly in the presence of sleep apnea. As we age, our bodies do often require less sleep and there is a slight shift in cycle going to bed earlier and awaking earlier. But most people according to studies still need a good 7-8 hours to function optimally.

Some of the sleep problems can be treated more easily than others. For instance, for shift in awake cycle …two ways to treat one is to treat with medications like Provigil to maintain alert during daytime and prevent falling asleep so can then fall asleep at night and / or maintain a routine sleep hygiene where no naps are allowed during the daytime.  You MUST also arise at same time and go to bed at same time daily. Plus only use bedroom to sleep or  for sexual activities. Keep bedroom dark at a comfortable temperature. Do not try to force sleep. If you cannot sleep get out of bed and move to a separate room to read or watch TV or listen to soothing music. Go back to bed, if still unable to sleep repeat cycle. Do not exercise at least 3 hours before bedtime. If you have to go to bathroom a lot at night avoid drinking fluids 3 hours prior to bed time. Ask physician for medications to help with falling asleep or staying  asleep if none of these things work…there are many options.

If you are snoring and having sleep apnea your doctor will recommend a sleep study test-called a sonogram. I believe every Parkinson’s patient should have this done at some point in their disease process. This will also help evaluate for restless leg and periodic leg movements as well as REM behavior ( acting out in sleep your dreams when your body is supposed to be paralyzed!) so that adequate treatments can then be given. One sign that you might have sleep apnea is early morning headache or awaking from sleep with headache. Tegretol or Klonopin are some of the medications used for REM sleep disorders.

Do not drink alcohol particularly after dinner since this tends to interfere with sleep pattern may help to fall asleep quickly but will often arouse you because it causes shallow sleep patterns plus it can severely worsen sleep apnea. If trouble falling asleep- Do Not drink caffeinated beverages after noon and limit amount to one a day as well as try taking decaf products. These still contain caffeine only 50% less so you won’t feel totally deprived. If you smoke consider cessation since this is a stimulant. Increase physical activity- being active helps to deepen sleep.

If pain is a factor- your doctor will have to evaluate the source and treat accordingly. As he or she will also have to adjust dosages of medications if experiencing wearing off or freezing in bed and getting stuck. Likewise if having hallucinations. Therefore, if you are having any sleep disturbances make sure you speak with your physician as soon as possible since there is usually a good and effective treatment for most of the problems of sleep. Make sure you do not make any changes to your medication regimen without first consulting your doctor.


Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at you can also learn more about Parkinson’s disease at or at;, All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at contributor

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Parkinson’s & Fall Prevention : By Dr. De Leon



We all know that one of the biggest problems in Parkinson’s is the risk of falls especially as we age and the disease advances the risk seems to increase exponentially.  Recently, there was a new consensus released by the Academy of neurology offering tips on fall prevention since according to the AAN 50% of all Parkinson’s patients have a fall within their last visit to a physician- this is not only astounding but also points to a greater problem that either we as physicians are not spending enough time evaluating for risks and that we as patients are also minimizing our problems with gait.

In an effort to prevent further injury, I will try to recapitulate some of the recommendations and provide some of my own personal expertise from my own experience.  I heard it say in one talk presented by PDF expert that we as PD patients begin to experience abnormal strides in gait even from early stage even before we are completely aware that we have a problem, we are already taking smaller steps and unsteady. If we wait to fall or have a loved one fall to take preventive measures, we have missed the mark. We are not only increasing the risk of serious harm (like broken bones –hip replacements are particularly troublesome for Parkinson’s patients to overcome being hospitalized longer and having greater decline in activities of daily living within first year requiring usually skill nursing), increase need for medications, as well as increase in disability and decrease quality of life due to decrease mobility along with an increase financial burden. This is too high a price to pay when we can prevent most falls with some strategies to reduce fall risk.

First, and foremost keeping active starting a physical therapy program, or an exercise program that will help strengthen core muscles (neck, back, legs).

Second, especially if getting up in age make sure you get routine eye and hearing exam. Poor hearing and vision added to stiff muscles with already have poor coordination make for disaster waiting to happen. 

Third, avoid interaction between medications especially sedatives like benzodiazepines (e.g. klonopin, xanax), anti histamines ( e.g Benadryl), pain medications. Sometimes levels of levodopa have to be adjusted for those that fall during dyskenesias or if blood pressure is dropping especially if taking a blood pressure medication as well.

Fourth, have your doctor check your B12 levels which are commonly low in Parkinson’s patients –low levels of this can alter your sense of perception increasing your sense of lack of coordination if your feet are sending wrong signals to the brain about the terrain underneath them. 

Fifth, walking with a stooped posture can also be problematic- although it can protect against backwards falls it makes it more likely to fall forward especially when rising or transferring from chair or bed.

Sixth, if reason for falls is decrease motility or movement then need to talk to your physician or provider about increasing your medication unless contraindicated like having hallucinations or severe dyskenesias in which case strength training and teaching cueing strategies are helpful. For those that have cognitive impairments, they need to be supervised at all time while transferring from seating and from bed as well as when walking and assistive walking devices are highly recommended.

At all times a team approach works best to ensure safety of all those involved.

Always keep a list of all medications even over the counter and discuss all falls even when no injury occurred to your physician. Even if you are just getting off balance but no falls have occurred mention it to start preventive treatment before a fall occurs.

Some of the exercises that will help keep and maintain balance are yoga, tai-chi, and aerobics in deep water.


For further reading on the subject go to Journal Parkinsonism & Related Disorders April 2014  

“How to prevent falls in Parkinson’s Patient’s? A new Consensus Document Offers Tips” Neurology Today, Vol. 14, issue 12, June 19 2014

Ellis, Terry PT, PhD, NCS “Gait, Balance & falls in Parkinson’s disease,” Expert briefs Parkinson’s Disease Foundation, January 15, 2013


Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at you can also learn more about Parkinson’s disease at or at;, All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at contributor


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Working for a Cure: What Should Our Role Be to Become More Effective Partners in Research? : By Dr. De Leon

Everyone wonders and dreams about the next big study, the next big drug, the next big discovery that will set the course towards a cure and unleash all the pain and suffering from the nearly 10 million people suffering from Parkinson’s worldwide. But, I ask myself how do we do this? How can we convince others and ourselves that the way to ensure that we all have a better quality of life is participation and “stick -to it -ness?” More importantly, we must change the current thinking to bring forth not just new treatments but a cure?

In order to accomplish this goal, we need a genuine commitment from each and every one of us. Because although we as a whole like to talk about the need for research and need for participation, only a very small percentage of all PD patients ever volunteer. I set out to discover a couple of things. First, I tried to do small epidemiological studies involving various facets of Pd. Second, I was interested in finding out what kind of response I would get given a predetermined population size. Much to my chagrin, in three separate instances for three separate studies I found that the commitment rate was 10-12% even when all that was required was 15 minutes of a patient’s time – one time only. There were no risks, no side effects, no contraindications, yet although many showed interest the follow through was markedly disappointing.

So, I wondered if this was the case for other research studies in PD especially when clinical trials by nature are time consuming, have inherent potential risk, as well as potential side effects. Interestingly enough my observations were not dissimilar to those found by a study in 2012 on the trends of Parkinson’s research presented by the UF Parkinson’s symposium. They actually concluded as I did that only about 10% of PD patients participate in trials. They also observed that 30% of all trials never complete due to inability to fill or have recruitment problems and 85% finish late for same reason. With such lack of participation, cooperation and non adherence to doctor’s plans and recommendations which is an increasingly growing epidemic at least in this country is not difficult to conceptualize why trials take so long, why they are so costly and why a cure has yet alluded us.

One would presume that as medical advances have flourished patients would be more inclined to participate in research studies but it does not appear to be so.

Patients still take their cues not from their physicians but from other eternal sources mainly one another. So, if someone had a bad interaction or experience with a drug under study or a clinical trial this may tend to color the opinion of peers more than the medical experts opinion. This is particularly of interest since most of us are now on social media sites looking for advice and exchanging information 24/7.

In one study looking at medication noncompliance, it was discovered that “68% of patients turned to other sources to validate information provided by their physician needless to say these sources were not other physicians.” I believe same holds true for information regarding clinical trials but if we are going to trust our peers we need to have some way of ensuring that the correct information gets disseminated because physicians do not have enough time and resources to validate all information available out there in the social networks.

I believe that we as patients might be better served two ways 1) increasing our participation in all areas of research from peer reviews to advisory boards but keeping in mind that without you the patient participation in actual studies more than 10% our chances of finding are cure are very limited! 2) Concentrate our efforts in asking not for research money at this time but rather to INCREASE public awareness and teaching of what things to look for and expect from trials and how become involved with individual pharmaceutical companies to ensure that our needs are being met and our voices heard. Only then, do I think will we start seeing the pendulum swing in the right direction!

 Furthermore, we need to start taking matters into our hands by becoming proactive and begin raising public awareness so that treatment becomes about us, about what we need now not 10 years down the road. This can only be achieved by working in conjunction with your physicians, the pharmaceutical companies, the NIH, and other publicly funded health and social care research.

Fortunately for us, the tide is changing and big Pharma companies like UCB are taking notice of the need and importance for direct patient involvement in research to make it more relevant, meaningful and useful to our current needs, as well as more patient friendly in hopes of increasing overall participation and attract a wider array of patients. Others like UK clinical collaboration –Involve have also led development of people in research in the hopes of decreasing trial attrition and trying to get trials to finish not only on time but fill up.

WE MUST Remember: Doctors and patients are partners in your long term care and as such both should be equally vested in your overall well being. Like any partnership, the success or failure will depend on the participants. You can only get out what you put into it. So, if we only put in 10% participation we are ONLY going to YIELD 10 % results!


Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at you can also learn more about Parkinson’s disease at or at;, All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at contributor

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