Instructions not Included When it Comes to Caregiving: By Dr. De Leon

As we approach November the month of caregivers- I want to thank all the caregivers for all their support and their unselfish love and determination for learning, caring and uplifting their loved ones with pd. here are a few tips I have learned over the years…but remember that in all things God knows our limits. He knows our struggles; he knows how much stress and pressure we can take so don’t go at it alone -lean on HiM and ask for wisdom and strength.

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Don’t dwell on the disease. Value the moments, the pearls of wisdom, their smile, their humor.” St. Elizabeth

seekcodes_659_26138     Caregiving is not for the faint of heart. I have had to be the caregiver for two of the people I love, my grandmother and father. Although the experience was extremely rewarding, I was left completely emotionally and physically spent when it was all said and done. Being a caregiver requires inner fortitude, perseverance and above all a great deal of love. Love for that person you are providing care for is the only thing at times that drives you and keeps you from losing your wits.  In dealing with my loved ones as a caregiver, I had my moments of frustration as many of you have in taking care of your own loved ones who suffer from chronic illnesses like PD. The problems usually arise from thinking we know what…

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Rethinking Parkinson’s Treatment: By Dr. De Leon

“stop focusing on what happened and start focusing on what’s going to move you forward.”

 

We have come a long way in the way we think about many neurological diseases since I first became a physician. 25 years ago we had a limited number of medications to treat Parkinson’s plus the thinking was that patients with this illness were doomed to a life fraught with physical limitations that were out of the control of the individual who simply had to accept his or her fate.

Now we know that although there is still no cure, there can be life after PD. We have the power to control our future to ensure the best possible outcome.

Although many of the tools and techniques of rehab to aid patients with PD are not entirely new and in fact been around for decades, the expectations of patients and doctors has shifted considerably. There is now a greater emphasis on recovery and maintaining function because contrary to previous beliefs… The brain is capable of remodeling itself – However this does not happen overnight nor without hard work and will power. The best outcomes for those living with PD come by from earlier rather than later treatment introduction as well as rehab. Even in early stage of PD when patients just begin to notice gait deficits studies show that there is a dramatic decrease in cadence and stride that can be improved and maintained if physical therapy begins early before real problems like falls occur. The more people with PD practice their therapy regimens (like cycling, walking, boxing, dancing, tai-chi, swimming) the stronger and smoother the new brain pathways developed will become. These therapies are not confined to traditional ones but also those which are non-traditional like singing and painting or sculpting. Also programs like BIG & Loud  can be of great benefit.

Thus, as soon as one is diagnosed one should talk to their physician about referring to physical therapy, occupational and speech therapy. Part of the conversation should include discussing daily or weekly activities which will help to maintain and improve function. Even when wheelchair bound one can do tai-chi or laughter yoga to help guard against depression and decrease rigidity and pain. The goal is to stimulate new pathway development and strengthen the connections which are becoming loose. But the rehab should not only include physical activities but also mental ones since PD affects memory as well. Of course there is a belief that exercise can improve and delay memory loss but actively engaging in mental activities like learning new skills, playing games, solving puzzles, learning new languages, as well as socializing will be much more beneficial.

But, before you go begin to recovery, you must first address your own emotions. The reality is that until it happens, most of us take for granted all the little things we are able to do without giving it a second thought like multi-tasking, being able to get dress, able to tie our shoes, brush our teeth, feed our self, cut our food, etc. we don’t ever think what would happen if I were to lose our independence suddenly and unexpectedly. How would we react? What would we do? How will we cope? The notion can be extremely traumatic especially for an active independent person. When we get a diagnosis with PD is not uncommon to feel out of sorts, lost, depressed because we are grieving for loss of self-wondering what our next move will be, what our new place in the world, or role in our families will be? We wonder what the future holds for us. To make matters worse Parkinson’s also wreaks havoc with our emotions making us anxious, and depressed. If we don’t get a hold of our emotions and seek medical care which may include counseling, these can ruin our life leading to isolation, worsening depression, fatigue, sleep, and apathy. These emotions if unchecked and untreated can stand in the way of a recovery.

3 Sure ways to better outcomes and happier you:

First step is self-awareness of problem – one can’t solve a problem without first admitting there is one. Get diagnosed. Then work on what needs attention in your life at the time-ask yourself how I am going to do my job or fill my responsibilities if I am not well? So place yourself at top of to do list. This means accept diagnosis and start treatment.

Second, find a support group– people you can open up and also will be there when you need help, this includes looking for financial help if needed, plan for future.

Third, strengthen yourself by embracing the disease and putting a plan together to exercise, eat right, sleep right, go to counseling if needed, follow through with doctors and tailor your own therapy to fulfill your needs. An Avant guard way of approaching therapy is called progressive task related training. For instance, if having trouble using limb to eat work on ways to improve function and use of that limb getting right utensils, taking right meds, etc. The goal is to promote autonomy for as long as possible. This also includes educating yourself and others about your disease. Make short term, medium term and long term plans to accommodate for your new needs and life style. This includes preventing falls which frequently occur with PD -so should have some balance training like water therapy which I have found to be the best solution for this problem.

5 ways to achieve rewiring of your brain

  1. believe in yourself- “I think I can, I think I can…”
  2. embrace the positive attitude- say no to the bad!
  3. visualize getting better- walking better, shaking less, talking louder
  4. take steps towards your goal- monitor your symptoms and act on them quickly, start an exercise program, start a mentoring program..
  5. repeat, repeat, repeat….

soon you will be on your way to a new you!

Lack of Health Care Continuity is a Growing Crisis in America Especially for Those of Us with PD: By Dr. De Leon

“Broken trust is like melted chocolate. No matter how hard you try to freeze it  can never return to its original shape.”

 

Being a patient who is chronically ill has definitely made me more aware of one of the great problems we have in health care today- poor continuity of care. As we approach the next Presidential election, I am holding my breath just like the majority of Americans. But for me the biggest issue of this election is one which has plague me and my family for a decade particularly since Obamacare was enacted into law.

As a doctor who struggled to bring difficult and challenging patients to some kind of balance (between medications side effects and quality of life); the careless dismissal of my plan by a hospitalist who decided patients were on “too many”  or that a “cheaper ” medicine would work the same sent me screaming. Especially when they did not bother to consult me even when patients asked for me to be consulted because it was not cost effective or deemed necessary by some administrator.

This new practice of medicine was brought about by the new trend to attempt to “socialize medicine” and have physicians act as employees of institutions instead of self-entrepreneurs who had autonomy over their own destiny and their patients. The discontent of been treated as perpetual “residents” is seen in the eyes and mannerism of walk of hospitalists everywhere. Those that I have spoken to while taking care of my dad told me could not wait to do something else. This despondency was caused by extensive hours of work, increasing demands by the hospital, and little control over their work because the ultimate decision making is left to the whims of administrators and insurance companies who know nothing about the practice of medicine. For instance, not long ago a hospital CEO was attempting to promote their new mammogram equipment for their hospital; so he thought that he would advertise for women to ‘buy one get one free’ (not a pair of shoes!) or to bring their daughters for a free mammogram at the same time of their visit….

This type of actions exhibits a totally out of touch mentally with the practice, the law, and recommendations / guidelines by American academy of Radiology.

What insurance companies and people behind affordable health care ignore is the bond that exists between a doctor and patient. For those of us with chronic illnesses, this bond is a crucial and vital part of our lives- it is an actual relationship forged through months and years of trust building – big part of following your doctor’s recommendations is having trust in their counsel. Unfortunately, much of the noncompliance is because of lack of trust. When we are placed in a position of sharing our most intimate details, fears and vulnerabilities with stranger after stranger leads to total dissatisfaction in the field of medicine in both patients and health staff. We are meant to have long lasting relationships in which trust can be forged over time.

Furthermore, the increase government interventions and regulations in medicine have taken the pride of a job well done from those practicing. How is anyone to take responsibility of any one patient outcome when there is not one single person in the medical field in charge? Now imagine you are the patient with a long list of problems and an equally long list of medications and all you want is to have someone develop a plan and follow through but when one day you see one person spend an hour delineating a plan and are asked to follow up in clinic only to have another physician see you who has neither spent time reading your history nor last visits plan because as soon as they walk in door they have to fill out a million little esoteric data required by law in order for them to be compensated so they don’t even shake your hand or bother to look at you at times. So without taking time tor really asses you who are sitting in front of them or listen to the fact that the data (labs) pulled up in their electronic medical records (who are often known to be inaccurate and incomplete) are of another patient who happens to share your name, they formulate a new plan of action leaving you completely frustrated.

This common scenario which occurs more often than not thanks to Obamacare is particularly bothersome for patients and the loved ones of those with chronic illnesses who are hospitalized – thankfully some physicians are more aggressive than others and still are free thinkers thus are more willing to fight for the patient independent of what administrators or insurances call for ( because insurance, hospital and government penalize doctors for spending money on patients, running tests and keeping patients in hospital over 3 days!). Of course, these doctors are often penalized for taking proper care of their patients – if it happens enough they too will soon go with the flow giving in to the broken system and perpetuating the lack of continuity of care chain. Lack of cohesiveness among the treating physicians only creates more anxiety in patients and their families. Same thing happens in the out- patient setting to a lesser degree. This is worst when dealing with PD patients or others with chronic diseases especially if known to have multi -system involvement requiring multiple specialists. These patients more than anyone are at the mercy and of insurance plans who have unfortunately the power to dictate when, where, and which test will and will not be covered.

This is where I, like many of you, become completely unhinged; however, I try as best I can to respect the opinion of other physician’s being one myself and fully understanding the challenges of the new healthcare system. Yet, I politely inquire reasoning behind new idea, treatments and changes of tests and medications to make sure it is something they feel as doctors is necessary or important vs recommending simply do to pressures from outside sources. However, sometimes although the reasons behind medical treatment is one imposed by administrators etc., we have no choice but to comply because we are hospitalized or our health plans coverage change suddenly removing access to our previous physicians or making our follow- up visits with our specialists incredibly unaffordable that we have no choice but to look for a replacement and start all over.
Let us voice our discontent and let government know is not ok with us to have poor continuity of care…we need health care revamped! hopefully this new election will bring necessary changes to better the care of all of us with chronic illnesses like PD. also let them know we need more neurologists not just more primary care physicians.

 

How to Deal with Loss of a Loved One due to PD: By Dr. De Leon

as we approach caregiver month ..I want to honor those caregiver who have lost their loved ones this year…

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If tears could build a stairway and thoughts a memory lane I’d walk right up to heaven and bring you home again. (poem: if tears could build a stairway to heaven- unknown)

When I was in New York City last week I had the pleasure of meeting many great people including this wonderful team of son and father from New Jersey. They were there celebrating the life of their mom and spouse respectably. It was a bitter sweet moment for the duo. They came to the Parkinson’s Unity Walk in her honor. After battling Parkinson’s for 18 years, she had finally succumbed to this chronic progressive neurologic illness and passed away a month prior to the walk in Central Park.

As I was fumbling to find words of encouragement and comfort to these two individuals who were obviously grieving, it dawned on me that we as a Parkinson’s community seldom…

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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

 

 

Is there still benefit to doing a Levodopa Drug Holiday as PD treatment in this day and age? by Maria De Leon

 ” A vacation is what you take when you can no longer take what you’ve been taking.” ~ Earl Wilson   As we celebrate Columbus Day weekend, I am reminded of another holiday we…

Source: Is there still benefit to doing a Levodopa Drug Holiday as PD treatment in this day and age? by Maria De Leon

A week in the life of a Parkinson’s diva- by Maria De Leon

“It is a beautiful thing when a career and a passion come together.” ~unknown It is always nice when things work out serendipitously. What can be better than combining one’s own p…

Source: A week in the life of a Parkinson’s diva- by Maria De Leon

Setting Appropriate Boundaries when Living with a Chronic Disease like PD- by Dr. De Leon

Aside from spending time visiting my many physicians this last couple of months and sleeping incessantly, which could be misconstrued as a form of hibernation, I have begun a women’s class on…

Source: Setting Appropriate Boundaries when Living with a Chronic Disease like PD- by Dr. De Leon

Role of Technology in PD Management – Hot topic #2 at wpc2016-by Dr. De Leon

In the last 2 and a half months, I have spent an inordinate amount of time visiting doctors to get my situation resolved and return to baseline. What I have realized is that symptoms and state fluctuate so much within a couple of days that unless we get seen immediately at time of “feeling bad” we as physicians can miss out on the correct diagnosis completely. This of course is true for issues that arise in the context of a chronic illness, where minor insults such as UTI’s (urine infections), cardiac arrhythmias, electrolyte abnormalities, and even problems induced by sleep deprivation or dehydration can cause sudden rapid changes and even return to normal state in some cases without treatment.

For instance in the course of my last 6 weeks or so, I had episodes where I felt like I was dying with all sorts of neurological and medical symptoms and by the time I was seen days or weeks down the road that particular symptom had subsided either permanently or temporarily usually due to some action I had taken to resolve matter. For all of us who live with Parkinson’s disease either as a patient or caregiver, this sort of yo-yo-ing can be very frustrating because it delays correct diagnosis. On the other hand it can be just as frustrating for the physician to hear one set of complaints and examine a person in a different state. Needless to say, this type of interaction diminishes the results and validity of the patient evaluation at that given time.Image result for wearable devices

Of course, I am at an advantage especially when it comes to neurological illness; due to a greater expertise then most on the subject thus can help the physicians reach accurate diagnosis and treatment faster. However when it comes to other issues like arrhythmia’s if they don’t catch the problem at the doctor’s visit or short monitoring then it may take that much longer to diagnose a cardiac etiology for instance leading to greater discomfort and frustration on the part of the one suffering things like dizziness, lightheadedness and so on.

This has resulted in me thinking about gadgets, apparatus, and other technology which might be available to aid physicians particularly neurologist to figure out with greater certainty what is going on with a Parkinson’s patient at any given time. First, both doctors and patients agree that the use of smartphone’s in the treatment and care of patients is of great benefit to both sides alike.

Over the years, Medical technology has evolved from introducing doctors to new equipment to connecting patients and doctors thousands of miles away through telemedicine. It is not uncommon in today’s modern world for patients to hold video conferences with physicians to save time and money or connect to a specialist whom otherwise would not be accessible were not for this means of communication.

With a growing number of physicians using medical technology like mobile devices, they can now have access to a greater array of information– from drug information, research studies and novel treatments, patient history or records, and more – within mere seconds.

As with most things in life there are always pros and cons and risk benefit must always be weighed carefully on an individual basis.

Nevertheless, I will mention here the pros for having and using certain medical technologies such as wearable devices that will not only allow us to understand a particular patient on a more personal level allowing for greater personalized treatment but also help us understand a particular disease such as Parkinson’s as a whole. Recently, MJFox foundation partnered with Intel to investigate such technology in the care of PD patients. This type of wearable device in the form of a wrist watch for instance can help gather information regarding patient’s symptoms like severity of tremor, gait difficulty, etc. this type of device would be of much benefit to many whom like myself have tremors very sporadically which in fact my neurologist has never been able to catch at a visit only seen through my recordings. Boy, I would have given anything to have a device to record an unusual tremor never had before and lasted only but a few seconds twice. It was so unusual that an expert like me could not define. It was a cross between a rubral a.k.a. Holmes tremor (wing flapping tremor with characteristics of rest, action and postural tremors arising from midbrain lesions) and an isometric tremor (tremors brought on by holding heavy objects- heavy objects) but only in the right hand. I was so intrigued by the phenomena that I decided to do a literature search – I found only one mention in the literature of such bizarre occurrence in which it was described in detail but no explanation given as to cause, treatment or relation to other movement disorders.  I am officially intrigued and will eventually get to the bottom of it. (*can read more on article below). As you can imagined if I was surprised, if it occurred to any one of you and you tried to describe as best you could I am certain you would be met with much skepticism and might be even labeled psychogenic perhaps. But, if we could wear devices that would not interfere with our daily activities and show bizarre symptoms such as this, it would not only enhance our care but advance the science at a greater speed than at present.

At present, there are already a few free iPhone apps which can greatly enhance the life of PD patients and this is PD LIFE which serves to track “on” and “off” episodes. There is also Lift Stride. We also have shoes with lasers to aid in ambulation.

I believe that the field is wide open and primed for medical technology to play an integral role in the care of PD particularly if we can combine multiple parameters of evaluation at the same time such as monitoring cardiac, respiratory functions with other motor symptoms. This would help us understand the Parkinson’s disease in its totality as well as help us gather greater insight into other Parkinson’s plus illnesses.

Thus, I kindly ask all those working on medical technology to please take into consideration the problems and barriers those of us who have chronic illnesses like PD have to overcome each day in getting care from our physicians who are often miles away sometimes in another state or even country making it impossible or at minimum down right challenging (as if living with PD was not trying enough) to resolve issues quickly and accurately to improve our quality of life and that of our loved ones. This includes making accessible and affordable technology that can aid in everyday life such as exoskeleton legs.

Image result for images of portable exoskeleton