Curious Case of Maria De Leon

“Art is the “objectification of feeling” art is often hard to describe…one usually fumbles for words to express with the right words what we see….
But it isn’t hard at all to FEEL art, to look at images upon a canvas and sense the power, the anger, the love, and even the despair that inspired the work of arts….”Suzanne k. Langer 

 

I have not written much lately and there is a curious reason for this ..reminded me of Curious Case of Benjamin Button movie starring Brad Pitt. I thought I would share my musings with you and see what you guys think. As you may know, I have been a long time proponent of art therapy as an alternative treatment for Parkinson’s but more important than this for years as a neuroscientist I have discussed the notion of  creativity being somehow related to “brain pathology.”

In my Parkinson’s Diva  book I devoted a whole chapter to art therapy as a second chance (if you will) given to us by a Higher being (GOD)  as way to flourish and bring forth beauty.  Many have read the big debate regarding artistic expressions in PD. The question remains whether is a result of medications or an inherent part of PD. But perhaps there is a third option. Perhaps the artistic expression occurs as a result of chemical imbalances activating parts of the brain we usually don’t rely on for functioning.17039279_1050824945024177_4069118663995079579_o

First of all we have to look at the way we define “normal” (brain functioning). What is Normal? and who came up with this idea of setting specific parameters? could it be that what we term normal is actually just average? (after all statistically speaking normal is simply a term for the average in a bell curve)

I have devoted my adult life to the study of neurological behaviors and to understanding the great complexities of our brains.  After nearly 30 years, I must say that I understand its inner functioning even less than I did when I first began. I am not really surprised by this being that I believe that a superior God with infinite power and knowledge created us to His image with a 100 billion neurons with a trillion connections – are we so arrogant to pretend we understand how it works? We might have a better understanding I think of how space works -infinite less complex and smaller than our brains.

For years, i have treated patients with number of neurological illnesses such as epilepsy, dementia, Parkinson’s, bipolar disease etc. all of whom had expressed time and time again their desire to be untreated or under-treated in order to be able to feel themselves particularly to experience the creative flow weather it be writing, painting sculpting, etc.

I have always been an admirer of great artists and writers like Van Gogh, Picasso, Hemingway  many of whom interestingly have had severe neurological illnesses. some of whom created their masterpieces while being hospitalized in mental institutions. Scientists have been able to cause creativity in the form of art by stimulating certain parts of the brain while many individuals have suddenly gained artistic knowledge where once none existed after a traumatic brain injury. While some Alzheimer patients have become great sculptors and painters as their disease advanced.

Around the time I began to experience my first symptoms of Parkinson’s, I felt a sudden irresistible urge to write poetry, after years of not reading or writing poetry, which used to be one of my favorite past times as a young woman. The outpouring cleansed my soul and brought not only peace by putting into words my fears, frustrations etc. but also allow me to move forward with my life after the PD and cancer diagnosis by putting closure on things that were painful to me.

The creativity over the last decade of me dealing with PD increased exponentially on its own from increased interest in writing (poetry and other forms), art appreciation in all manner in my life from my teaching style, to fashion and decor, to developing an actual interest in painting (something I never even had a minimal desire in doing). I also noted that taking levodopa fueled that desired and increased an out-pour of artistic expression almost in a manic fashion.

However, the interesting and curious thing about this whole ordeal is that over the last several weeks as i have somehow found an equilibrium in my life with both alternative and traditional therapies feeling nearly “normal” being able to do things which I had not been able to carry out in years like tending house daily- doing laundry, cooking, cleaning, running with daughter, teaching etc. without feeling tired, weak, stiff, shaky and in pain; I have noted a sudden decrease (almost lacking completely) in creativity, in desire to write, paint, or express myself in an artistic fashion. It has been hard to come up with ideas for any of my projects which most nowadays depend on some sort of creative flow. i don’t want to write among other things.29542834_2022349857778686_1246047400348006539_n

Although, I am thrilled to be feeling this great physically – (hope it last) I am feeling a loss of that newly found creativity which was new,  foreign, and exciting especially for someone who always had a scientific mind.

For years, I have studied brain pathology and neurological diseases trying to infer what is normal but perhaps i have been wrong of what normal really is or rather what makes genius.  perhaps the phrase mad genius is not so far off…

One must be a bit off center to be able to express oneself in an artistic fashion what ever medium they choose. so should we be medicating all these people into mediocrity/normalcy?

Perhaps the greatest gift Parkinson’s disease had given me and many of us is that chance to be  closer to the mind of God; after all He is the greatest artist and creator as evidence by nature.  Plus, having lived with PD for more than a decade i can certainly agree with Edward de Bono who stated that ‘creativity involves breaking out of established patterns in order to look at things in a different way!” – Boy,  none more than us who live with PD have learned to break out of patterns/routines in our lives to look and find unique solutions to everyday way of living.

The question remains will i stay feeling healthy and physically ‘normal’ without much interest or desire for creative expression or will my creativity return should my Pd symptoms take hold of me once more? Having tasted the sweet feeling of being almost manic is easy to understand why no one would ever feel the desire to return to a state of  equilibrium especially if  you lose an integral part of your being – that of being an artist, a writer, a poet, etc.

@copyright 2018

all rights reserved by Maria De Leon

What to do when you forget to pack your medications when traveling? By Dr. De Leon

Stay Calm –  You Got this!

I love traveling but absolutely hate packing all those medicines; especially when I will be out for a week or longer. Typically, I carry my own stylish Vera Bradley pill box which carries enough medications for day to day activities even up to 3 days of away stay. However, because like many of you, I take close to 20 medications regularly (my poor liver). Some days more, if I have other problems like a sudden migraine. Hence the problem of remembering all the medications that I might need like anti-inflammatories for that back pain, or extra muscle relaxants in case of severe spasm after sitting on a plane for a long time. size-os

So, I have a small travel bag – which you should also get and stock with all the essential medications required for daily functioning such as Stalevo, Rytary, Neupro, Mirapex, Azilect and so on.  I put all my bottles to ensure I will always have enough just in case unforeseen circumstances occur and travel is prolonged. Within the bag you should always keep a list of all of your medication names, doses, prescribing doctors name along with the pharmacy name, and phone number in case you forget something while away. Having a list also comes in handy, as I experienced recently in attempting to fill my mom’s medicines after hurricane Harvey.

If you use national pharmacies it is easier to transfer medications from one city or state to another in case of emergency without much problems. This may not be the case if traveling internationally. In those cases having a bottle with your name and medication as well as a list may expedite the process of granting refills by an outside physician who is not otherwise familiar with your care or diagnosis. Which also brings me to the point of always carrying a letter from your doctor stating diagnoses especially if traveling abroad.vb

If you use local pharmacies another pharmacy outside of your area can still get a hold of your information, but will require some time and effort on both of the pharmacist and on your part. After hurricane Harvey, there was a long line of patients attempting to get their prescriptions transferred and filled from affected areas in many towns across Texas. Getting medications can be more challenging and take longer to do in case of disasters as we have seen recently. This is because the local pharmacies in affected areas may not be operating to give info to the pharmacist you are trying to use nor your doctors available as was the case after Irma, Harvey and Maria. Since doctors are sometimes needed to confirm the medications that you are on or require. Fortunately, my mother uses Kroger a larger chain which has a store in town which can pull information from its national / regional database. Yet, after my mom got one of her medications, she insisted this was not the right one so she refused to pay for and take it home. Had she had her card and list of medications she would have known as would I that was she was given was the correct one and gotten it for her. So make sure a loved one also has a list just in case it gets lost, misplaced or damaged.med list

Also, prioritize medications in order of importance and ease of acquisition. Are these something you can buy over the counter -if so not such a big deal if you forget? Are they available in areas that you are traveling to? For instance not all Parkinson’s medications and formulations are available around the globe. Do your research and make sure you take extra if traveling to areas where your medicine is not found.

If forget something that you can buy over the counter or readily available by visiting a pharmacy then you must go to the ER in order to obtain. Once again easier to do so if have proper documentation.

What if you forget a medication which comes from another country?  As I did when I went to Philadelphia recently. I forgot my domperidone because I took a dose the morning before departing and left on the counter rather than putting in my purse. You can either find a substitute or find ways to decrease the need for these medications by altering life style, diet, increase water intake, finding natural remedies like peppermint tea for short term or incorporating all of the above. These techniques might get you through in a bind but will not be effective long term. But important to note that you may still suffer consequences of not having medication which may take several days to recover from; as I did after my travel experiencing severe gastroparesis. If it’s a medicine essential for Parkinson’s main symptom management like a dopamine or dopamine agonist do not try to do without because consequences can be detrimental and even deleterious.

@Copyright 2017

all rights reserved by Maria De Leon

 

Tips for Good Sleep in PD; by Dr. De Leon

‘A Well Spent Day brings happy sleep.’

We all know that sleep is vital for our health; but how to reconcile this knowledge with how our illnesses make us feel ?

There I was last night falling asleep at 10 pm but unable to go to bed as I desired; since I suddenly began experiencing severe heartburn after taking my last dose of pills of the evening. So instead of finding rest in my own bed had to search for meds to relieve awful pain in my belly and throat which felt as if I open my mouth fire would surely come out. After taking several medications to ease the burning pain and drinking mint tea and passing the floor for at least a couple of hours my fiery pain was finally easing and although I was quickly becoming more alert through the whole ordeal I was eagerly anticipating a good nights rest after the last two weeks events which had maintained me extremely occupied and unable to sleep much. and then as many of you who live with a chronic illness in their life can relate as soon as one problem eases another pops up.

Sure enough after showering putting on my pj’s  relieved my belly pain was FINALLY subsiding for me to be able to recline, a new pain set in. This one was of course a real pain in my derriere literally and figuratively! Now my hip was in deep throbbing pain for no good reason other than to interrupt my sleep. The pain which was centralized in my ischial tuberosity  ( the siting bones of our pelvis) was worst with laying down- surely there was a low pressure storm brewing somewhere in my vicinity. More muscle relaxants needed along with stretching exercises and a deep massage to the area along with more pacing until pain began to ease around 2 a.m.

 As you can see and know from personal experience – getting a good night sleep has multiple layers of complexity. In order to understand our problem and how to achieve better rest in order to delay cognitive decline, diabetes, heart disease among many other problems caused by poor sleep not to mention increase pain, fatigue, stiffness and increased depression, we have to look at the many facets blocking of what should be a non-challenging natural occurrence.

First, we have to understand that as we age our own circadian rhythms undergo natural changes. Hence, teenagers can sleep till noon while elderly people usually arise very early in the wee hours of the morning. More importantly is the fact that for those of us who suffer neurological illnesses such as PD or Alzheimer’s, our internal clocks can become completely unable to function and become disconnected. This disruption is what causes us to get confused and invert our sleep wake cycles- sleeping all day and up all night. We need to avoid this pattern because the disruption leads to accumulation of amyloid plaques hallmark of Alzheimer’s.  In end stage Alzheimer’s and in PD people rarely sleep for long periods of time , rather they dose off and on all throughout day and night making the propensity for confusion, hallucinations, and psychosis that much worse.

The way to prevent and combat this natural tendency to shift our sleep caused by our disease is to make every attempt to reset our inner clocks. This takes a continuous effort on our parts. ( see ‘8 top sleep habits’– bit.ly/NN-SleepTips) experts have suggested that although maintaining a routine of bed time, the most important factor is Keeping a routine of awaking at the same time each day. This is I believe one of the biggest challenge’s we face. certainly for me. It’s easy during school days since I have to take my child to school however, it goes out the window during breaks and weekends. One way to help is making sure that the room you sleep ion is very dark at night but light comes in in the am. if unable to get light in, sleep experts recommend the use of a light box.

In order to improve night time sleepiness is….

  • taking sleep medications which I do frequently- the best thing I have found to help and prevent tolerance hence decrease effectiveness from developing is alternating meds or taking one type several times a week rather than daily.
  • increasing physical activity during day time – better if early morning. do not want to exercise late because it will only stimulate you and keep you awake. even if you are in the hospital- get up if able to and walk in the hallways several times. or do tai-chi if wheelchair bound.
  • get rid of distractions– i.e. TV’s, iPad, iPhones etc. from your room.
  • try to get natural daylight everyday for at least 30 minutes- open the blinds of your house, room, or go sit outside, better yet walk outdoors.
  • avoid alcoholic and caffeinated drinks in the evening.Image result for can't sleep funny images
  • keep room cool and quiet.
  • take melatonin.
  • make sure bed is comfortable for you. May need to get a memory foam  etc.

Second, another common obstacle is pain, stiffness, discomfort- as I experienced last night. Pain is usually worst at night, experts says  because of lack of outside stimulation to distract us from our pain. Sleep deprivation can cause a vicious cycle  i.e. more pain hence less sleep.

  • What we do is be able to have treatments available to counteract or avoid completely if its something that happens routinely.
  • Talk to doctor about pain meds – avoid narcotics if at all possible- prefer muscle relaxants like klonopin, baclofen, tizanidine and even anti-inflammatories
  • increase dopamine meds
  • stretch/ not exercise- frequently during the day and in the evening before bedtime. that was my problem yesterday, I forgot to stretch as often as I usually do and spent too long sitting hence the resulting pain.
  • some of the pain can come in form of restless legs- again talk to doctor to adjust medications- perhaps longer acting dopamine agent like Neupro patch or Rytary will do trick.

Third, other medical problems or non-motor problems…

  • increase urgency and frequency or urge to urinate– talk to doctor about medications for this; keep diary as to cause. Treat urine infections and decrease fluid intake after 8 pm. Rule out prostate problems or enlarged uterus or other female problems as the cause.
  • bed wetting– get alarm for bed; wear adult undergarments, get medications , make sure not diabetic, and make sure constipation controlled. find cause – is it because they cant get out of bed? get bed side commode; or because can’t get out of clothes – find clothes with Velcro, magnets, snaps etc./ to make it easier. cant get out of bed? change sheets to satin, increase dopamine meds to improve mobility and or prescribe meds to decrease urgency and frequency like Detrol, vesicare, myrbetriq.
  • sleep apnea common in older men but also more common in people with MSA- use bi-pap or c-pap- these machines are a lot smaller, talk to Ent specialist may be able to do surgery to correct.
  • Rem Behavior– increase dopamine meds, use melatonin, don’t take dopamine agents so close to bed time give at least 1-2 hours.
  • if having reflux like me – take antacids, ppi’s ( protein pump inhibitors) like Zantac or my favorite is Carafate liquid or pill before each meal and at bed time. Avoid spicy foods, caffeinated foods and alcohol and realize that antibiotics usually can deplete flora making heart burn more intense as it did me. talk to gi doctor make sure don’t have infection with H. pylori which can also affect absorption of medications rendering them less effective. easily treated with antibiotics.
  • try to take as few medications as possible and fewer times as possible to control symptoms- fortunately we have so many new options that we can use intermediate and extended release and patches which can greatly decrease number of times we need to take meds because not only having a neurological problem makes us more sensitive to side effects especially in us women but the more meds we take the higher the interactions and higher possibility of side effects. In my opinion, long are the days where we had to treat patients with medications every hour to 2 hours around the clock because of all the advances. So if you find yourself in this pattern talk to your doctor about other choices e.g. dbs surgery, duopa  pump, neupro patches, addition of Comt inhibitors like comtan/tasmar.  Fortunately we should soon have hopefully within the next year a 24 hour Comt inhibitor (Opicapone), etc.
  • neuropathies- address the cause and treat. Is it related to PD or B12 deficiency or diabetes ?

In conclusion, you have gathered already that proper sleep hygiene takes work and effort and that one fix does not fit all and even for same individual as disease progresses there are many factors involved which have to be addressed by you and your physician. Don’t be embarrassed to discuss or ignore. Adjust both your medications and life style to accommodate for these changes. May also require a stimulant during daytime to maintain sleep wake cycle which I often prescribed to my patients in conjunction with sleep aids. All in an effort to try to maintain a “normal” sleep wake cycle.

As I finish typing this blog, I have already taken my sleep aid so when I am done I will be ready for bed sensing sleep beginning to hit me before I get second wind and I am up all night again; which I could easily do and my body prefers. However, from experience as patient, doctor, and caregiver the next 24 hours will be mostly unproductive and exhibit poor concentration skills and decrease multi-tasking abilities. I certainly don’t need this nor do you since we all have responsibilities to attend to.

This week make time to start looking at your sleep habits closely and identify the problem areas then talk to your doctor to help find the right treatment for you. plus remember that your disruptive sleep patterns not only impact you but your bed partner as well who may become as sleep deprived as you from constant commotion in middle of the night.

Happy Sleep everyone……

  • More info go to bit.ly/NN-REMSleepDisorder
  • Source: Cohen, Marisa. “sleep Matters.” (April/May 2016) Neurology Now 45-49.
  • copyright-2017
  • All rights reserved- Maria De Leon MD

 

Dealing with off Periods: HOT Topic @WPC 2016 -By Dr. De Leon

“The purpose of art is washing the dust of daily life off our souls.”~ Pablo Picasso

 

One of the hot topics to be covered next week at world Parkinson’s congress 2016 at Portland Oregon is that of dealing with motor fluctuations. I am very sad that I won’t be able to meet so many of you for the first time as well as looking forward to seeing again many of you whom I have a personal friendship thanks to PD. However, if you look closely, you might find my spirit permeating throughout portions of the congress since I have been involved in several committees especially those relating to the Spanish subcommittees.

In the meantime, as a member of the science subcommittee of the WPC, I will try to discuss with you before and after some of the topics of interest for this meeting.

Those of you who have lived with PD in your lives know from experience that treating the disease in its early stages is rather simple, once of course diagnosis has been ascertained and assuming that you tolerate medications. This is because at that stage, the brain is naive and exquisitely sensitive to replacement of dopamine in any form or dose. The reason being that our brains are still producing it (dopamine ~50-80%) just needs an extra kick start. So in essence a little goes a long way. Even a single dose of an agonist, MAO Inhibitor (e.g. Azilect), and especially levodopa can last for several days at a time. But, as the disease advances there is greater loss of dopamine producing neurons requiring greater amount of replacement and support from other chemicals in the brain. These other neurochemicals in turn begin to also become affected as dopamine levels decline in an attempt to maintain chemical equilibrium within the brain.

Unfortunately, many of us as well as many physicians believe erroneously that if a little is good more is BETTER. This could not be further from the truth. Yes, in some ways we do need increase amounts to function properly especially cognitively but if we flood our system with dopamine (levodopa) akin to trying to maintain our body’s energy levels with pure sugar- it will eventually CRASH. Yes, dopamine intake like sugar consumption will act quickly and give needed energy instantaneously. However, physically and mentally you will eventually burn out because our body’s needs cannot be sustained on sugars alone. Our systems need fats and proteins to provide us with necessary nutrients and energy storage to use for periods of intense activity, and stress. Our brains also need other neurochemicals like serotonin, acetylcholine, and glutamate among others to thrive.

Therefore, it becomes a matter of art and experience as much as it is a science to begin dealing and attempting to rectify anyone person’s off periods and fluctuations. Of course we must keep in mind that the challenge is greater for those treating disease since every one of us is unique, as Parkinson’s disease is not a homogeneous entity.

Nevertheless, there are certain general rules which apply. I will delineated here for your review.

First, in order to decrease off times and prolong effect of medication it is best to employ a polypharmacy approach- this is about one of the few times I would agree with this as a physician. Typically, in medicine the fewer drugs the better patients perform in regards to side effects, compliance, and complications. However, in order to maintain equilibrium in our brain this is essential from the start. I would definitely recommend introducing a small dose of levodopa at beginning of diagnosis.

Reasons: it helps confirm diagnosis with positive response. I firmly believe it can be neuroprotective according to some early studies on the subject.

Yet, I would not leave alone for long period of time ( >6 months) before adding another class and continue to add various classes as disease advances because the combination serves to potentiate effect of  each medication simultaneously. Furthermore, this strategy also ensures a decrease risk of developing dyskenesias because although you are technically increasing levels of levodopa you are not saturating one single receptor (dopamine) so there will be no need for up regulation (more receptors created). The latter results in faster wearing off because you are reaching threshold sooner and overwhelming system each time.it is sort of like trying to treat gastric reflux, you eat more frequent meals to avoid the burning but each time you eat you are stimulating the production of acid which only makes the problem worst.

As disease advances, it will become necessary to add and increase doses of levodopa but still can decrease incidence of fluctuations by adding medications like Comtan, Tasmar to levodopa and/ or different formulations of levodopa such as extended release (CR), intermediate release ( Rytary), fast absorption (Parcopa), Stalevo (sinemet +comtan). Plus, you Do Not have to stay with only one (single) formulation; in my experience as physician and patient it is actually best if you have varying formulations. Soon hope to have a couple of more formulations of levodopa like inhaled formulation.

Second, remember that all medications like agonist and amantadine can have an effect for up to 10 years then become less efficacious but after a withdrawal period of 6 months to a-year they can again be of service and function at maximum capacity (sometimes people wear off because medications have been stretched further than usually efficacious). Also just because you did not tolerate a particular formulation due to nausea, other Gi problems, or even low blood pressure they can still be reintroduced because our bodies change as we age. Sometimes we need our blood pressures (bp) to be lower because although low hood pressure is a more common effect a lot of people with PD, such as myself) have severe hypertension with levodopa and agonists.

Third, one of the considerations for treatment of off times is of course DBS- deep brain stimulation, but also adding medications such as amantadine, switching or adding a long acting dopamine agonist like Neupro patch, adding Zonegran, or Apomorphine sq, soon will have oral disentigrating formulation of apomorphine which is currently in trials at various institutes including BCM. Addition of Comtan or Tasmar may also be indicated at this time as well as change to various formulations (of release) of levodopa if not done already.

Fourth, Keep diary of times and dosages of medication, as well as when off periods occur. Important to note if this occurs at Peak dose or end of dose? Is it predictable or unpredictable?

  • If peak dose – may need to lower dose (say from 25/100 to ½ tab of 25/100) and perhaps take more frequently (usually at lower doses)
  • If end of dose require medication intake more frequently this can be accomplished by adding extended formulations such as CR, and/or Stalevo or taking more frequently

Finally, remember not to overlook simple and crucial factors for having fluctuations and off periods such as diet intake of protein (IT ONLY REALLY MATTERS IN ADVANCED DISEASE). This does not mean stop all protein intake – you will regret. Means take it an hour before meds or two after. However, the biggest problem with diet is now so much what we eat but when we eat. Small frequent meals are better and never later than 6 pm to improve digestion because the REAL culprit more often than not is constipation and poor motility and malabsorption. So making sure you are voiding every day or at most every other day is imperative for good health of gi-tract and good consistent absorption of medications. This includes exercise, drink lots of water and eat lots of fruit along with probiotics.

Best of luck for those traveling to Portland. Stay happy and healthy.Image result for yo-yo

 

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.

 

The perils of traveling when you have PD:by Dr. De Leon

As I have been traveling to promote my book and women in Parkinson’s issues, I am reminded of some of the perils of traveling which can make anyone a bit discombobulated but for those of us who suffer from a chronic illness like PD it can really throw us for a loop.

I absolutely love traveling and I am absolutely thrilled to be feeling so much better to be able to do this on my own after having to depend on someone for a while. However, I am reminded of my illness each time I leave my home by the number of medicines I have to pack in order to be able to enjoy my travels. It is sad that packing my medications takes me twice as long than actually packing my clothes.

The first thing  we have to keep in mind when we travel, especially if going across various time zones, is the time changes when we are trying to keep up with our medication schedule. I find it a lot easier to go west than east. What I do is I continue to take my medicines as scheduled through out the trip and when I arrive I switch to that time zone and then proceed to take my medications on the same schedule (meaning every 6 hours and so on) – however, we must be aware of the time it has actually passed ..make sure you maintain the same hours between dosage so if you just took a medicine and arrived and now is time to take another medicine because it is noon for instance don’t double the dose wait til next dosing time ..but if you took medicine 5 hours ago and now new time zone indicates that you will have to wait another 3 hours but you know you take your meds every 6 hours take the medicine within the hour and adjust schedule… Do not suffer …and always keep medicines handy in your personal belongings and within your immediate reach like in a purse and carry water with you to facilitate intake of pills. I always keep my medications in my purse in a pill  box. Within this box, I also carry prn medications..in other words medications I don’t take on a daily basis but might need especially when traveling or sitting for a long period of time such as nausea medications, pain meds- like Tylenol & Motrin, migraine pills, and muscle relaxants.

Try to get seating with extra leg room and do stretch exercises  while sitting every hour…stretch your neck, legs, back, and feet. You can do small circular motions of neck and limbs including hands and feet for five minutes…walk about if you can. Also, if you tend to swell, like I, do when sitting you might consider wearing Ted hose or support stockings to avoid deep vein thrombosis (DVT’s) as well as improving circulation and decreasing edema.  Conversely, don’t wear tight socks that only go to your ankle- this will only worsen swelling rather use diabetic socks.

Since it is hard to take diuretics when traveling to decrease swelling, we must try to eat naturally diuretic foods like cucumber, lemons, tomatoes, and drink plenty of water especially if you are going to be out on the sun -need double amount of fluids. Drinking lots of water can actually help flush  all the toxins out and is the most effective diuretic. Another way to eliminate fluid build up in your body naturally is to drink cranberry juice, or add cucumber  or lemon wedges to your drinking water..of course any caffeinated drink will help to get rid of fluids but these will only dehydrate you in the end so not as healthy and do not recommend if traveling  for long distances. Another food which has lots of natural diuretic effect is oats. Go ahead and have an oatmeal bowel before traveling or in the mornings while your traveling, not only will this help get excess fluids but will promote better digestion.

Drinking plenty of fluids also helps to improve digestion and decrease constipation which also makes us feel bloated and causes swelling. Because we sit so long when traveling, the natural peristalsis of our bowels decreases even further. Now compound that with medication intake  side effects and PD itself and we are one miserable uncomfortable person with bloating, gas, increase nausea and poor absorption of our medications making them less reliable when we need them the most. I recommend taking ‘gas- X‘ or some equivalent..try to eat light like yogurts and take a probiotic capsule to stimulate  proper digestion since I have found it extremely hard to take laxatives when traveling especially if have a packed schedule.

In flight or on your trip you can also drink Sprite, ginger ale (this also aids with Gi upset and nausea, plus ginger is a good diuretic). Eat dry fruits  and crackers ..I like  to carry with me ‘thin addictives‘ they make a great snack, easy & convenient to carry plus they have dry  fruit and nuts to give you energy. If you are completely bloated and feeling constipated do a light liquid diet the first day  when you arrive at your destination. Although, you will certainly need a nap after you arrive, if possible you should continue your exercise routine there- sometimes hard to do if are speaking or are sight- seeing, good thing is that usually sight seeing entails a lot of walking so you will have plenty of exercise). but don’t neglect your sleep..of course the sleep may be a bit messed up. in order to avoid jet lag carry melatonin 6mg – 1-2 tabs a night.  when you are on vacation especially if at a tropical island you will be tempted as I have to do as the locals do and enjoy some nice alcoholic beverages with a little umbrella. however, we must be mindful of our alcohol intake for several reasons.

1)  initially it can make you sleepy after a few hours it becomes a stimulant disrupting your sleep wake cycle further and making you more lethargic and fatigue.

2) it is extremely dehydrating.

3) can worsen REM behavior

4) can interfere with your medications

5) increases swelling

When you get to destination and en route eat plenty of vegetables like carrots, asparagus, tomatoes, beets and celery which also are natural diuretics. ( I emphasize the diuretics because all of the Mao inhibitors,  along with the amantadine and dopamine agonist cause a lot of fluid retention especially in us women). The above foods are also healthy and can cause some slimming effect especially oat consumption. Did not our mothers tell us we are what we eat? Seems like there is a lot of truth behind this saying…Even before trip should avoid salty foods and no high fatty meals in transit especially if crossing several time zones.

I have learned these perils the hard way  making me look like a 9 month pregnant woman while traveling because I am unable to take my Linzess, & my diuretic pills because I am on the go and don’t want to have an accident or be detained every few minutes looking for a bathroom worst sometimes is hard to keep a eating schedule as I would at home  one thing we must always remember is that WHEN we eat is as important for us living with PD as WHAT we eat. so next time you are packing your suitcase getting ready for a travel adventure keep some of these points in mind to avoid the perils and focus on the FUN & Joy of it all!

 

 

 

Breathing problems & PD: Dr. De Leon

 

“The

Trick

Is

To

Keep

Breathing ”

…because as long we are breathing we can start again!

a friend asked if I could talk about nocturnal breathing problems with PD. I will try to discuss the causes and treatments here.

As a trained Parkinson’s Doctor, I am still amazed by the enormity of symptoms related to PD which have a significant and possible deleterious effect on people’s qualities of life…many of which I was familiar with and many more which I have discovered as a consequence of living with PD myself.

One of the newly discovered symptoms is asthma…which I have developed since my diagnosis of Parkinson’s. We know from the literature that asthmatic patients have a higher risk of getting PD which could point and support theories of  PD being an autoimmune disease or having a viral trigger. However, the idea of PD or the medications used for its treatment triggering asthma remains to be proven. Yet, within the Parkinson’s support groups there has been many a talk about new onset of asthma after their diagnosis. First, I would not be surprised if this were true because some of the dopamine agonists have been linked to lung fibrosis and pleural thickening of the lungs- this syndrome was described as L-dopa respiratory dysfunction syndrome. This however was found to be more common in those with Parkinson’s plus diagnosis – with MSA ( multisystem atrophy) leading the list. Plus, Pergolide (Permax) an older dopamine agonist was removed from USA market in 2009 due to severe respiratory problems which resulted in fatalities.  The main cause of fatalities was valvular problems of the heart. A similar drug known as cabergolide ( Dis) also causes severe lung fibrosis, asthma and similarly causes heart problems by affecting the valves. However, since this is used only for  pituitary tumors and not PD remains available.

mirapex ( pramipexole) and to a bigger extent the Extended release compound can cause symptoms of wheezing, coughing, chest pain, phlem, shortness of breath (sob) with minimal excertion and swelling. I myself when I was prescribed mirapex ER experienced severe dyspnea ( trouble breathing ) and a cough- which is when I was diagnosed with chronic bronchitis. However, even after I stopped the medication my sob persisted eventually being diagnosed with asthma. I first I attributed this problem ( sob) to my thyroid being off – which is important to rule out as cause of sob especially if fatigued and wheight changes. Then I thought it could be the fact that I had gotten radiation for my cancer but X-rays showed no scarring or abnormalities but my breathing test confined to be abnormal and consistent with asthma. I was treated with inhalers and I am well controlled; yet interestingly the last time I visited my pulmologist, he said my breathing test, which he does routinely, were normal except for the fact that my tests appeared as if I had not put normal effort and lungs were not fully extended. I had taken my medicines but had not fully kicked in. so no matter  how much I blew  air or tried to push air out, my lungs felt stiff and rigid. But once medicine kicked in – lungs were pliable (normally expanding). Which means that PD can cause sob simply by having disease and stiffness of the breathing muscles- hence as symptoms advance patients start feeling more anxious and short of bread when medications start to fluctuate especially if off’s are sudden and unpredictable.

Abnormal breathing function is important to address as soon as possible for several reasons:

  1. it increases risk of chest infection – if not able to cough and clear lungs
  2. can increase lung infections by creating stagnation and shallow breathing – a condition called atelectasis
  3. Voice is more raspy, husky and lower tone if have poor air way and decrease lung capacity making people feel even more isolated because they are not going to be heard well.

plus since stiffness and rigidity tends to increase with stress and cold thus we need to practice techniques of relaxation and practice staying warm.

At night, people may have breathing problems for a number of reasons:

  1.  Wearing off
  2. gastric reflux
  3. obstructive sleep apnea

The bottom line yes both medications and poorly controlled Parkinson’s can cause difficulty breathing. Therefore, it is imperative to talk to your doctor as soon as possible to rule out other medical problems like thyroid, heart disease, sleep apnea, gastric acid reflux and asthma a which may or may not be caused by PD meds.

discuss your concerns with your physician and practice breathing exercises and relaxation techniques.

one breathing exercise – repeat 4 times- start standing, sitting or lying down ( better if standing ) lift arms up and do below

i) take a deep breath through your nose, pushing your stomach down

ii) then release air out slowly as you bring your arms down to your side

conversely – you can just relax shoulders then do the other two.