chronic illness, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, research in parkinson's disease

One Size Does Not Fit All in PD: By Dr. De Leon

In the past, one of the biggest challenges non-neurologist or/and non-movement disorders physicians have faced in diagnosing PD has been the lack of uniformity in disease presentation. While variability in  response to treatment has been a challenge at times for those of us in the field of  Parkinson’s disease. Although, no two individuals are ever really alike in the last decade,,we have unveiled many similarities in presentation and treatment response across different subgroups of Parkinson’s population (i.e. young onset vs. older typical onset; women vs. men; various ethnic groups) which can help guide treatment Plan. Of course, we are always pushing the envelop of neuroscience and knowledge to find that unique key element that can leads us to a more precise diagnosis and treatment of those living with PD. 

Recently, as you might be aware, everyone seems to be talking about “individualized medicine” but although we have been attempting to get more precise data and information by studying subsets of PD population  through various means like the Large- PD genetic study spear headed by Dr. Mata and supported in part by Parkinson’s Foundation previously known as PDF; the reality remains that we simply do not have the correct tools to pull such a feat. We are not able to match particular medications with specific mechanisms of action with underlying PD causes at this time. This is the level of medicine that we would all love to achieve in the near future. In the meantime, we can all do our part by participating in genetic studies, research trials,pregnancy registries- because no state or government registry exists for PD meds-you can send your information to the pharmaceutical companies makers of your own PD medications and ask your physician to keep a log which you can provide and update.

So until we have the right tools for the trade to really be able to provide “individual medical care,” what can we as patients and caregivers do to ensure that we or our loved ones receive optimal care?

First, we have to convince our government and healthcare providers (i.e. insurances) that in order to achieve optimal care one must be intimately familiar with the subject they are treating. This degree of knowledge only comes from having continuous rapport with the patient which develops over time- i.e. continuity of care is vital !

One then must begin by asking the right question

  • Do I have idiopathic Parkinson’s disease vs. Parkinsonism vs. Parkinson’s plus syndrome?
  • If not sure what can we do to further determine this?
  • Once diagnosis has been confirmed – what drugs will work best for what I have? 
  • Are there any drugs that are more likely to be beneficial or more likely to cause me problems?

             This is where having an open communication, good rapport, and a long history with your physician that would greatly influence the choice of medication and treatments offered to you. For instance, if you already have tendency to gamble, love to shop a bit more than others, or have some underlying ocd’s (obsessive compulsive traits) perhaps adding medications like Mirapex may not be the best choice. Likewise if you are a ‘collector’ by nature dopamine agonists which increase pundding ( hoarding in a systematic organized fashion) may not be the route unless clear supervision is provided. Also if you already experience daytime sleepiness may take into consideration before starting dopamine agonists unless you also add medications like Provigil and Nuvigil and other stimulants like Adderall to counteract sleepiness and stimulate alertness.

In the same manner we should be aware of potential adverse reactions. All meds have side effects and just because it is listed does not necessarily mean you will have – however this is where knowing yourself and something about gender is beneficial – 

We know that in general women have more sensitivities, side effects and adverse reactions  to medications; may require much lower doses than male counterparts with similar symptoms.

  • How are these meds going to impact my other medical issues (e.g. diabetes, high blood pressure, migraines, etc.) or interact with my other medications ( make them to be ineffective, or increase their dose and  thus ?
  • How will the medications affect my daily living? ( not just in terms of side effects but dosing -2 times vs 5 times a day?) 
  • Is it going to interfere with becoming pregnant or impact my pregnancy?
  • Will these meds alter my menstrual cycle?
  • What is the cost? Although this is extremely important this should not be the limiting factor once you consider the fact that a lower costing medication can result in multiple sick days, doctors’ visits or hospitalizations vs. a higher cost which will provide better quality of life and decrease medical cost in the long run.

In the end although we have a slew of medications which have proven to be efficacious not all medications are an ideal fit and some should be avoided based on our own personal medical history as well as that of our family. One way that we can begin to help ourselves and our doctors to better choose the correct treatment plan is perhaps request that we have some genetic testing.  Since more than 75% of individuals have variations that determine how our bodies respond to and process drugs ( all types, recreational, prescribed and over the counter) some of which can lead to serious adverse reactions requiring hospitalization as it did me recently where after years of taking Azilect and Neupro I developed severe arrhythmias and severe malignant hypertension causing transient ischemic changes ( mini-stroke). According to ones site serious drug-related effects are the 4th leading cause of death in the U.S. One way we can added information is through a simple genetic test YouScript which involves a painless check swab which then shows your own unique drug-processing genetic characteristics. (several companies perform this- e.g. Inverson Genetics, Genelex

 

sources:

Click to access DME.patient.final.pdf

http://www.genelex.com

 

 

chronic illness, medications in Parkinson's, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, research in parkinson's disease

The Power of The Mind in determining Our Response to Medications & Other Therapies : By Dr. De Leon

“One believes things because one has been conditioned to believe them.”   Aldous Huxley, Brave New World

 

 

Have you ever wondered why some people seem to always get better with any medication or treatment given; while others have the opposite effect no matter what the treatment therapy is?

Well, you have heard of the “placebo” effect, I am certain. Today, I will discuss the “nocebo” effect…

The term nocebo in Latin translates to English as “I shall harm.” this is in contrast to the commonly known placebo effect in which any  type of intervention whether medical, surgical, or homeopathic results in a perceived beneficial response not directly attributable to the mechanism of action of the intervention prescribed. I along with other scientists and clinicians suspect that this harmful effect (opposite of placebo) has been largely ignored and overlooked for many years, particularly when it comes down to treating patients in a healthcare setting.

Both of these outcomes are directly linked to a subconscious mind effect related to our expectations of benefit/ improvement/ as well as side effects and complications with any given treatment.

We tend to feel better and do better when we like the doctor treating us, the setting of our care, as well as if we believe there is merit to the treatment. This is particularly true when participating in a clinical trial – since only highly motivated individuals are prone to partake of these investigations especially as it relates to more invasive studies like DBS, gene therapy, focus ultrasound, and so forth. this of course always begs the question of how much benefit MUST we see before we know it REALLY is beneficial to the majority? Because invariably the mind is a powerful instrument that can render someone completely paralyzed and immobile or have the opposite effect…some may even call it faith. Whatever this intrinsic mechanism is (which some studies have alluded to PD patients having greater faith compared to other chronically ill neurological patients); it usually manifests in improvement of motor symptoms. This is extremely important in studies that rely heavily on self reporting of symptoms. The initial believed improvement could be a figment of the mind, wanting and hoping to have real relief. But, what happens when the study is unmasked and this type of patient find out they were not on treatment? the same holds true for those who believe everything will go wrong and have a slew of side effects on placebo. There is an unraveling- patients may than underreport improvement or exaggerate positive response either way skewing the data.

However, where I have witnessed the biggest problem in outcome in treatment is in clinical practice. There is such a thing as having “too” much knowledge or anticipatory effect. If one goes into a clinic already believing there is no treatment possible to help symptoms, that no matter what you will experience side effects and adverse events or that your physician is not in touch with your condition- this will automatically create a nocebo effect and I guarantee there will be no force or treatment to make you well!

This is why I always highlighted the positive effects of the medication and underplayed the negative possibilities and encouraged patients to not read the entire list of possible side effects before starting a new treatment. I rather recommended trying it first with an open mind. This also applies to getting advice from others. when people hear of great things with a particular treatment they are willing to try more readily but if they constantly hear negative reports the outcomes are mostly going to be disastrous. remember that every individual is unique as to their response of medications, systemic illnesses, and overall genetic and cultural composition so we can not really expect to have same treatment across the border although there are some generalizations across gender and ethnicity. Second, this fact is the reason why I suggest everyone follows up with a physician /healthcare provider they absolutely trust because their faith in this person will subconsciously alter the response to care for the better.

So next time you participate in a study, ask yourself the reason for participating?

  • are you trying to please your physician?
  • are you desperate for good results?
  • did you feel coerced to participate?
  • are you just wanting to help science?
  • do you have preconceived expectations from what you read or heard?

If you are honest with yourself, these questions will help you decide when and how to participate and have the best outcome…

likewise before you go to the doctor, ask yourself these questions?

  • what do I expect from therapy?
  • can I talk to this physician?
  • does he/she listen to my concerns?
  • do I trust this physician? or do I have to consult with others? get second opinion?
  • have I heard negative things related to my illness or medications?
  • am I going to follow through with directions/recommendations?

We must find a balance between being able to advocate for ourselves, acquire knowledge about our disease and treatment without jeopardizing our future outcome and limiting our treatment options.

With practice and keeping  above scenarios and questions in mind – you too can have a better quality of life and be a better research participant without losing faith.

 

parkinson's disease, Parkinson's Health, research in parkinson's disease, side effects

Could Rampant High Glucose Intolerance among Parkinson’s patients lead to an increased risk of diabetes? : By Dr. De Leon

The other day, I had a follow up with my endocrinologist because I have been concerned about a slowly increasing sugar levels as well as HgA1C (glycosylated Hemoglobin used to detect sugar levels in the last 3-6 months to help diagnose diabetes and then gauge management) possibly being caused of increased night sweats and overall sweating.

Although I am not diabetic, I am becoming slowly at risk…which initially I attributed my increase glucose levels to the number of steroids I have received over the past 12 months for treatment of various other illnesses.

Then I began to wonder if this process had anything to do with my Parkinson’s?

I then seemed to remember reading something about dopamine increasing sugar levels and tried to recall by first year of medical school when we discussed physiology.

After my visit my doctor confirmed that I was becoming glucose intolerant and would be best to start treatment to avoid developing diabetes. Well of course this was not a pleasant experience to add yet another medication to my already long list of medicines but more importantly sent me in search of answers?

What I discovered to my great astonishment and chagrin was that indeed there is a connection between having Parkinson’s, dopa intake and developing insulin resistance leading to diabetes. What amazed me the most was study after study detailing this information dating back to the late seventies; yet no one in neurology or Parkinson’s specialty much less others outside this field have ever made any comments, concerns, or indications to monitor a patient’s sugars or discuss risk of diabetes!!!!

In the presence of high sugars, dopamine stimulates insulin secretion from pancreatic cells. (1)

The substancia nigra plays a crucial role in controlling structure and activity of these pancreatic islet cells which produce insulin. When lesions occur in this area of the brain or there is loss of dopamine there is a decrease in the content of insulin thus unable to properly regulate blood glucose levels causing an increase? This process is mediated via D2 receptors in the pancreas. However, as with all things pertaining to the brain things are not always straight forward. At increased concentrations outside of the brain it has an inhibitory role while it stimulates insulin at lower concentrations.

This perhaps can be the simplest explanation of why Parkinson’s patients have increased chocolate cravings particularly when off or low on dopamine, as has been my experience, in an attempt not only to increase dopamine but more importantly to increase glucose levels. This information again perhaps is one of the reasons a blood glucose modifying agent was studied to see its effects on PD as disease modifying. (2)

Studies have shown higher fasting blood glucose levels in 50 to 80% PD patients than in normal (non-PD) patients suggesting again that there may be an impairment in glucose tolerance (or glucose intolerance) problem. This problem may be further exacerbated by levodopa therapy (3); yet to date this issue has been mostly ignored leaving the risk of developing diabetes in a Parkinson’s patient completely undefined. I highly believe that high glucose intolerance merits high scrutiny as well as further research considering the irreversible damage diabetes can cause in an already fragile health system leading to increase dyskenesias, poorly controlled motor symptoms and less than effective treatment with levodopa.

RECOMMENDATIONS:

  • Thus, I urge each and every Parkinson’s patient to discuss this important issue with your physician/ MDS/ neurologist.
  •  frequent fasting sugar monitoring and or HgA1C testing particularly if at risk for Diabetes due to other factors like obesity or family history.
  •   if found to have glucose intolerance, as I have, initiate treatment for the hyperglycemia. I am now on metformin XR. Keep you posted regarding PD symptom changes- I will see if sweating decreases.

Sources:

  1. E. Shankar, KT. Santhosh and CS. Paulose. (March 2006): Dopaminergic Regulation of Glucose-induced Insulin Secretion through Dopamine D2 Receptors in the pancreatic islets in Vitro. Life 58(3):157-163 
  2. Robert Preidt (July 2015) “Common Diabetes meds & Lower Risk for Parkinson’s.” WebMD News Health Day. 
  3. R. Sandyk (March-April 1993) “The relationship between diabetes mellitus and Parkinson’s disease. Int J Neurosci.69 (1-4):125-130
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Loss of Smell in PD: by Dr. De Leon

Smell is a potent wizard that transports you across thousands of miles and all the years you have lived.” -Helen Keller

th1YPO1IKC

Imagine not being able to smell your favorite food, perfume, or flower in my case the star-gazer lily. Smell is intricately connected to our memories. Have you ever walked into a place and immediately transported to a bye gone era simply by an aroma?

Smell is a huge component of  our everyday life, as I first discovered as an undergraduate when we did an experiment in which we were asked to drink of a substance while holding our nose tightly….after sipping the clear substance, we all unanimously hailed it as water. But after, the professor asked for us to drink the same liquid without holding our nose our astonishment was evident—-it was LEMONADE! A simple pinching of our nose had altered our perception of the world!

Loss of smell can be one of the earliest signs of Parkinson’s disease. It is believed that the olfactory bulb impairment is due to clumping of alpha synuclein…. (a normal protein found abundantly throughout the brain and in smaller amounts in heart, muscles and other tissues- believed to be an important player in maintaining synaptic vesicles in pre-synaptic terminals- these are the ones responsible for release of neurotransmitters like dopamine).

Recent data suggests that >95% of Parkinson’s patients present with significant loss of smell. This may be supportive of new theory that Parkinson’s disease starts in the olfactory bulb and not in basal ganglia as previously believed.

Besides helping us with survival by avoiding harmful substances like toxic gases or rotten foods the olfactory system help us to maintain personal hygiene, which allows us to interact with others socially.

Loss of smell has been linked to cognitive decline and loss because of that primitive connection to our memory banks; therefore it should come as no surprise that this is a harbinger of dementia –olfactory loss being one of the first symptoms and signs of Alzheimer’s and PD. Loss of smell has also been linked to psychiatric problems such as depression another common symptom of PD.

However, most people don’t really notice a loss of smell per say but rather a loss or change in taste because as I mentioned earlier taste is directly linked to our ability to smell. So food begins tasting bland and sometimes even foul. But when formerly tested using a Snell smell test, PD patients show deficits in discrimination, detection, and identification of odors.

At this time there is no known cure for hyposmia (decrease ability to smell) or anosmia (complete loss of smell or inability to smell). Smell problems are often overlooked in the medical community since they are not deemed critical to living yet they have a great impact upon our lives as I stated before. Much research is needed in this field particularly if it has potential to alter our moods and cognition.

However, the best we can do is try to augment gustatory strategies and be cognizant of potential hazards and install protective measures such as fire alarms- since smoke may not be detected. Make sure inspect expiration dates of food carefully. Simulated odors are available to use while cooking for those of us who cannot smell to increase sensation of flavor. However, these odors are quiet pungent to normal smelling people so would not advice using if there are people who have normal smell in family.

Other ways to circumvent this is by enhancing gustatory senses via creative cooking such as preparing and eating foods which are spicy, crunchy, and full of aromatic herbs, as well as adding color and textures to your foods in order to engage your other senses like sight and make your whole mouth titillate and vibrate with joy….. Bon Appetite!th3UYAHPMC

Source:

http://www.hindawi.com/journals/pd/2011/450939/

http://www.pdf.org/en/science_news/release/pr_1333646414

parkinson's awareness month, parkinson's disease, parkinsons health and beauty tips, research in parkinson's disease

THE CHANGING FACE OF PARKINSON’S DISEASE : By Dr. De Leon

“Your spark can become a flame and change everything!”- E.D. Nixon

parkinson facesAs we commemorate one more year of Dr. Parkinson’s Birthday, we are reminded of the great accomplishments in the area of PD  and neuroscience since he was a prominent physician in London. Yet,  human kind has been battling a form of  ‘Parkinson’s’, if not the same illness, for centuries before Dr. Charcot put a name to it in honor of James, dating back to the times of  ancient India. From history we know that this disease does not discriminate against race, ethnicity, or social economic status. Currently, it is believed that there are approximately 10 million people world-wide suffering from this disease.

We have learned, however, that although mostly sporadic in nature there are some genetic predispositions to developing Parkinson’s disease which vary from one family to another and from one ethnic group to another.  Despite the genetic predisposition it seems that environment and outer influences such as exposure to toxins can hasten the development of this illness in an otherwise normal individual.

Here are the most common Risk factors:

  • Advancing age
  • Male gender
  • Decrease estrogen /early  hysterectomy with ovary removal
  • Environmental toxins
  • Low Folate levels
  • Agricultural workers
  • Well water consumption
  • History of essential tremors increases -depending on who you quote there is a 10-30%  increase
  • History of melanoma
  • History of  chronic constipation
  • History of mood disorders
  • History of sleep disorders such as RLS/REM behavior
  • Repeated head trauma or severe head injury
  • Family history of PD
  • Ethnicity- Hispanics twice as likely to develop
  • Occupation- those in medical field are also at greater risk presumably due to exposure of toxins and stress since the basal ganglia is overly sensitive to stress-may trigger faster aging process in the basal ganglia

Change is an inevitable part of life, without change there cannot be growth. The truth is that we are now in the middle of the PD pendulum swinging back. Since the name of Parkinson’s was ascribed to a disease that affects our motor system, causing slowness of movement, along with gait difficulty, rigidity of muscles and rest tremors that dissipate in sleep and when engaged in purposeful movement, was thought that PD was a disease of  middle to late age white men. No longer is it just a “movement” disease but an entire body system illness affecting our thinking, our personalities, and almost every system from head to toe excluding the lungs. Now it also appears that PD is encompassing a much younger population many of whom appear to be women. So, no longer are the young and ‘fairer’ sex protected but rather caught up in the midst of the storm.

Therefore, it is up to all of us to do what ever we can big or small in fight against PD. We can volunteer for research studies, write our congressmen http://www.parkinsonsaction.org about needing more doctors and funding to provide for day to day issues encountered by those of us who live with PD in our lives either as patients or caregivers.  we can offer our services to help those with PD, we can donate our monies to PD foundations such as http://www.pdf.org , you can purchase a ‘Parky Raccoon’ to help send someone to WPC next year or simply to raise awareness for a still obscure disease in many circles.

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How To Make The Most Out of Your Neurology/MDS Visit: by Dr. De Leon

How To Make The Most Out of Your Neurology/MDS Visit: by Dr. De Leon.