chronic illness, parkinson's disease

Changes in daily life in order to cope best can be tall tell signs of how well controlled is our Parkinson’s. Part I: By Maria De Leon

There are a few things that I have learned over the years living with and treating patients with Parkinson’s disease which are bigger predictors of prognosis and over all well –being, in my opinion. We as physicians tend to ask general questions that often times elicit a ‘yes/ no’ answer but does not give insight into the challenges a person living with Parkinson’s or any other chronic illness really experience on a day to day life. In fact, how we cope and what changes we have make in our lives to continue performing independently, maintaining our social circles and living a full life speaks volumes of what ids truly ailing us.
Here I will discuss two issues that have high impact on our daily lives as well as are big indicators of our future well-being if we pay attention to them carefully and discuss with your physician in a timely matter to correct the problems.

1. Have you had to start driving differently like I have?
For instance, our doctors may inquire if we are still driving? In my case, I may say ‘yes’. But that’s not the end of the story. My driving habits have been severely altered as of late not being able to drive outside of town. For day to day activities, I have no problems. Yet, I can’t be relied upon for long distance traveling. Further, I tend to only drive on left lane because it’s much easier for me to turn my neck to the right than to the left due to dystonia (torticollis) and nuchal rigidity. Moreover if I need to look left, I have to turn my entire body to left (hard to do when sitting still much less going upwards of 60 miles per hour). The reality is that even with turning my entire body I still have moderate limitation in range of motion of neck which can be extremely dangerous. Now, I also rely heavily on my mirror sensors – best investment yet! These provide me with an extra cautionary measure as well as security in my driving

2. Have you had a change in dietary habits?
Many people including myself can eat most consistency foods. However, many like me are also finding themselves slowly changing their preferences because it’s easier on their daily lives. These change in preference although not necessarily mandated by swallowing difficulties may improve greater well- being and quality of life by avoiding troublesome foods. Whether it be in the food consistency or in the types of foods preferred or avoided. Many of you will attest that is darn nearly impossible to eat with chopsticks when one is dystonic or shaky. Sometimes can be even more challenging to pull a lobster or crab from its shell. So although I thoroughly enjoy these foods whole, I often get them out of their shell unless someone else is willing and able to remove the exoskeleton. In my experience, these apparently insignificant alterations to consumption of food is by far the most common and most significant tall tell sign that something is amiss. If left untreated these small compromises can lead to a downward spiral rather quickly.
Another issues with food is alteration in food texture. Are you like me, a while ago when I was deteriorating, I found myself changing my diet to soft purée foods like ground beef, mash potatoes, casseroles, and thick soups to avoid choking. Even though I was not choking all the time nor daily. Yet, the times I did were so exhausting that it became easier to avoid all together along with the concern of ending up with aspiration pneumonia to add to my already extensive medical problems. (There are two reasons for choking with solids either not enough lubrication (dry mouth) or weakness of chewing muscles). Choking with liquids is a more ominous sign because you are at higher risk for aspiration.

On the other hand if you still are able to eat all types of food yet still losing weight because it takes 3-4 times longer than normal to consume a single bite without choking – or takes double the time to bring a single bite of food to your mouth-due to tremors, dystonia or slowness so that you either have to stop going out to eat with others or begin serving yourself smaller portions to avoid being last one at the table or last one to finish in a group- there is a huge problem that needs to be addressed. Sometimes you may compensate by only eating / ordering things that are easy to keep on a fork like Mexican food which is finger friendly or wrapped in cheese making hard to fall from a fork despite severe shakes.
The end result is either weight loss from poor nutrition, not enough food intake, or recurrent pneumonia’s causing secondary weight loss from illness.

As I mentioned before because these can be indicators of not only something amiss but usually portend bad outcomes. We must be constantly vigilant about our coping mechanism and discuss with our physicians, specially if it is in relation to dropping weight without meaning to.
Always Beware of weight loss. Two common causes in PD patients as i said before 1) poor food intake because of mechanical difficulties with chewing/ swallowing or 2)because of motor difficulties in cutting, preparing and bringing food to mouth.
Similarly, even if you are still driving if you had to make special adjustments /modifications to your vehicle to compensate for shortcoming or if only traveling short distances or only when accompanied by another, as I have had to do many times in past, you must notify your health care provider to make necessary changes to improve your quality of life especially as we near busy traveling season of much eating!!!

keep in mind that in my journey i have discovered that coping is a way
for me to embrace life not escape it we MUST make sure our coping strategies helps us achieve a fuller life.
I would not want you to miss out!!!
Happy Holidays!!!

all rights reserved by Maria De Leon

parkinson's disease, research

New PD drug study to halt progression


Today, researchers are evaluating an investigational drug that focuses on the earliest stages of Parkinson’s disease that may potentially offer a new option for recently diagnosed patients.

If you have been recently diagnosed with Parkinson’s disease, you may want to consider a newly opened study. It is evaluating the safety and potential efficacy of an investigational drug that targets alpha-synuclein (α-syn), a molecule associated with Parkinson’s disease. The investigational drug is being studied to see if it may potentially help to slow or reduce disease progression.

For people who:

— Have been diagnosed with Parkinson’s disease in the last 3 years

— Are 40 to 80 years of age

— Have not received levodopa in the last 12 weeks

Learn more! #sponsored #cureclick
Learn why I’m talking about Clinical Trials – we are closer than ever to deciphering this complex disease ..but even if we don’t discover a cure at worst we would have developed new treatments to make living with PD a thing of the past…by becoming as close to normal as possible.
Just in the two decades i have been involved in this field i have seen so many advances and people like you and me can have fruitful productive lives even when afflicted with PD.

today at least 3 new drugs are in the fda approval line due to be released within the next 6months to a year and perhaps sooner. but there are also many more on the works like this new #Parkinsons disease clinical study which is in the process of evaluating an investigational drug to see if it may potentially help slow or reduce disease progression. if you are interested in finding out more or think you like to participate and add your own grain to the cure go to the link below

@maria de leon 2018

chronic illness, parkinson's disease, Parkinson's Health

Unraveling the Mystery Surrounding Failed Diagnosis & Treatment of Non- motor Parkinson’s Symptoms By Maria De León

“However, difficult life may seem, there is ALWAYS something you can DO & Succeed at.” Stephen Hawking

I know that many people, including myself, often can get extremely frustrated with ourselves not only for having to deal with a myriad of symptoms which often times wreak havoc in our lives; but at times we feel betrayed by our own physicians who appear impervious to our own misgivings and difficulties.

As a former physician and now chronically ill patient, I have been thinking about these issues more often lately as my disease, rather general health, has seemed to spiral downward at a faster rate. I have been trying to reconcile my own feelings of disappointment with the turn of events in regards to the complexity of my own health problems which have been compounded recently by a feeling of disillusionment with some of my caregivers.

In order to come up with sensible explanations to my sudden disenchantment with my friends, colleagues, and care providers, I had to step back from myself and try to see things objectively not an easy thing to do – I assure you.

I am most objective when I am in physician mode, so I reverted to this role and considered how I as a doctor would treat me as a patient. The fact is that all my physicians are doing EXACTLY, for the most part, what I as a doctor would do!

So, why have I felt of late that they don’t seem to care or get what I am going through?
I have heard this over and over from many of you, doctors are just not spending time talking to us about the important issues which seem to be running our lives and robbing our happiness and drying our families joy?

I am certain that at times some of my patients might have felt this as well and might have sought other physician’s care. Yet, I assure you that every patient’s well-being was at top of my list.
So why the seeming disconnect? With them and now with me- as a patient?
Well, let’s take a look at this illness a bit. Although in existence for centuries, Parkinson’s as we know it was given a formal name only a century ago. However, it took another 60 years for scientists to discover the implication of a chemical known as dopamine. From that time on until very recently the main treatment consisted only in replacing this wonderful chemical without which we can’t move, function, or even think straight.

With the advent of levodopa, patients could again move, think, dream, and enjoy life for a while until dyskinesias (uncontrolled involuntary movements) began and/or finally they succumbed to a bedridden life unable to swallow or barely move. We as doctors had completely changed the course of the disease. This was a miracle! Then came the side effects. So, I recall spending the majority of our time trying to manage dyskenesias -breaking medication doses into 1/2; 1/4 and asking patients at times to take these medications every hour around the clock- pure insanity! All in hopes of provide smoother delivery to minimize ‘off’ states.

We had no time to notice anything else. Like in a battle field where there are thousands of wounded soldiers all clamoring to be saved, the foremost importance is making sure they survive even if it means amputating some parts to salvage the whole. So we have spent the last several decades making sure people live and survive by trying to prevent falls, being bed ridden, frozen, drowning on their own saliva or having pneumonia.

No one really complained since like the movie Awakenings everyone seemed happy to be able to move once more. But life was never perfect there were other problems we physicians as well as patients were aware of but with lack of treatments for these we managed the best we could. And in reality since the majority of patients we were treating at the time seemed to be elderly (the older I get this age distinction seems to become hazier), most in fact died of other medical causes because they never had time to go through all the stages, this being a slowly progressive disease developing over 30 years’ time.

So now that we have given patients a better quality of life with the myriad of new medications and surgical treatments available to us, we realize that the care is not perfect. This is compounded by the fact that we appear to be having increased incidence in younger onset PD (this still remains to be determined). Now that the life threatening issues have been controlled for the most part we have a grand task of getting people to not just survive but actually thrive once more.

This is where we currently stand, as physicians we are just beginning to grasp the challenge of giving a person back their wholeness while the patient (me and you) realizing the enormity of our deficits want to feel whole instantaneously.
Yet, none of us has a magic one and medicine is still one step at a time (moving at times at the pace of a snails crawl) following the creed of “do no harm” first.
So I realized that instead of being frustrated I should be grateful that 12 years into a disease I am fully independent and capable of having a full life and rather than thinking that our physicians are not caring or acting fast enough for our satisfaction we should find ways to help them help us.

So, now that the mud is beginning to settle, we are getting a clearer picture of the complexity that is PD. The good news is that the majority of non-motor symptoms actually have treatments. The bad news is that we can’t fix all at one time. This means picking your battles (the 3 most important at a time) and tackling one by one. Stay in constant communication with your physician, means regular appointments every 3 months- more often if needed. Write down your problems, look for patterns, ask questions, have a stake in your illness- this is a race not a sprint. This requires a change in life style. Just because we take some pills we can’t expect to be better without us putting some work as well- like stretching, moving, sleeping well, watching what we eat, and staying mentally active. Believe you me it’s a lot of work on a daily basis, but if you want to be around ‘til the next breakthrough in science this is what we have to do.

After pondering these things, I feel much better about my care and my life. I hope this helps you as well. There is a big bright future ahead don’t give up know – give your doctors a chance – most really do care but are simply overwhelmed at the scale of the iceberg ahead. Help them chip at it for your own well-being.

all rights reserved by Maria De Leon

parkinson's disease, Parkinson's Health

The Power of Research in the Palm of Your Hands- By Dr. De Leon


There are many devastating neurological illnesses for which there are no cures as of yet as is the case for PD. However, the future is bright since in the last 3 decades have seen many new discoveries in the field of neuroscience which have led us to a greater understanding of such complex illness as PD. Yet, despite all the advances there are nearly 2 million people living with PD in this country. Many of whom still face difficult challenges daily due to lack of specific treatments for various PD non-motor symptoms.
Part of the problem is difficulty recruiting appropriate patients to even fill clinical trials. It is believed that roughly 80% of trials are delayed due to being unfilled while 30% never even get off the ground. The result is that lack of participants in research trials only leads to slowing down the progress towards a possible cure. For those that do participate only one in four reach completion.
The great news is that you have the power to change the future of research. Subsequently, aiding in improvement of quality of life and discovering breakthroughs from which all could benefit.
So, how can you help?
…by playing a part in Parkinson’s research. Saying Yes! to becoming a volunteer.
You can participate in research as a patient or as a control…….
Now that you have decided to take control and become a research participant, you may be asking yourself the following questions:
I want to participate in a trial but, I am not sure if I qualify?
• First, you must know that there are different types of trials. Some are only interested in collecting data via surveys etc. these often times can be done from comfort of your home. Other studies are interested in evaluation of biomarkers, genetic abnormalities, or discovering other risk factors via laboratory. These do not require taking specific medications and maybe a onetime only test as well but may have a degree of invasion in order to draw blood, spinal fluid, tears, etc. There are also those which involve the evaluation of devices for instance to track tremors, gait instability and so on. Finally, there are the drug trials which everyone thinks about when speaking about participating in a clinical trial.
• Once you have understood the different types you can then actively seek out information regarding the various types you might be interested in.
• The best way to do this is talk to your physician. Other options is contact national organizations for referral to research centers or ask your peers at support groups and conferences.
How do I approach my doctor about participating?
• Begin by asking your physician if he or she thinks you might be a good candidate for participation in a trial. Ask the reasons why or why not? If he/she say yes, then ask if they have a particular trial in mind. If they are not actively doing research would they be willing to refer you to a center that does.
• If they are not the primary investigator would they work closely with researcher and would they still continue treating you or release care to another.
How do I choose the best one for me?
• Assuming you opted to volunteer in a drug trial you must find out the stage of the trial. Is this a drug that is in phase 3 awaiting to see efficacy vs. placebo or another treatment? Or is this an early stage trial where safety and tolerability is only being addressed. Expectations must be clear from the start on both ends in order to have the best outcome.

It is important to remember that by definition a clinical TRIAL is an EXPERIMENT in which the outcome (answer) is not yet known!!!!
As I stated previously, since there are different types of clinical drug trials it would serve you well to discuss in detail with your physician what your participation in a particular trial would mean for your disease state not just in the present but also in the future. This is crucial to remember because circumstances change and disease burden also changes over time (increases) which could impede continued participation in case of a long trial or may even preclude you from obtaining standard of care later on when disease advances, such as having DBS when participated in certain gene therapy studies. Furthermore, is also important to consider that in some instances future participation in other trials may be limited.
Therefore, before making a decision you must always take into account ALL of your current circumstances be it social, financial, physical, emotional, and other comorbidities (e.g. depression).
If your health is precarious like mine you can still participate in certain types of drug trials. For instance, participation in phase 4 drug trials in which drug results are already known but require further information or its being used for a different purpose than its intended original use could be something worthwhile.
In the end, the best way to maximize your success and achieve a positive outcome for you is to consider these things before you engage in any trial:
• Consider your goals and those of the studies, are they in sync?
• Are the expectations realistic?
• Never participate to please your doctor…that will only lead to heart break when results don’t yield what you hope for….
• Consider your physical limitations and capabilities along with those of your caregiver.

Don’t forget research is a TWO-WAY street OPEN communication is VITAL…..let your clinician know your concerns and also what interest and issues you have to better fit a study that suits your needs…..

@copyright 2018
all rights reserved by Maria De Leon

chronic illness, diet, parkinson's disease

Best treatment options for PD during an exacerbation of Inflammatory Bowel disease (IBS): By Dr. De Leon

As I have been dealing with severe Gi complications from both PD and history of ulcerative colitis, I thought I would cover this topic today on how to manage living with both illnesses. Not an easy task I assure you. As you may know, people with inflammatory bowel disease are at higher risk of having PD. But having PD can also compromise our immune systems making flare ups and exacerbation’s much more common.
Not only are colitis exacerbation’s a medical emergency due to possible severe dehydration that can occur but depending on the severity of disease and location down the Gi tract may require surgery. On top of the colitis Parkinson’s symptoms can also spin out of control lengthening recovery period and possibly prolonging hospitalization and rehab if we are not careful.

First, what is IBS- term used to describe disorders involving chronic inflammation of gi tract.
These compromise 2 diseases:

Ulcerative colitis (UC) – only involves colon and rectum
Crohn’s disease- involves the entire digestive tract

Complications of BOTH:
• Colon cancer need colonoscopy every 10years or more often
• Skin, eye and joint inflammation- PD can also cause joint pain in shoulder, hip and can cause eczema.
• Primary sclerosing cholangitis -scaring of the bile ducts leading to liver damage
• Increase blood clots- remember that PD increases risk of clots especially in those of us with migraines.

• Toxic megacolon- rapid expansion and swelling of colon extremely serious condition
• Perforated colon
• Severe dehydration

• Ulcers
• Malnutrition
• Bowel obstruction

• Nutritional support
• Calcium and vitamin D supplement especially important since we as PD patients already have Vitamin D deficiency
• Iron supplement- we may also already be anemic due to B12 deficiency
• Antidiarrheal –
• Desetin for irritation of your hiney
• Wear adult diapers for security till symptoms resolve
• Pain relievers- like Tylenol – avoid Nsaids like Motrin which make symptoms worse
• Antibiotics
• Anti-inflammatory drugs steroids and aminosalicylates (e.g. Asacol), balsalazide (Colazal) and olsalazine (Dipentum)
• Immunosuppressants methotrexate, azathioprine, cyclosporine-

 Important to note that some of these medicines cause b6 and b12 deficiency and can cause numbness and tingling which can already be present in PD. They can also increase the shakiness, can also cause nausea, vomiting, increase in BP, and cause dizziness. Therefore, it is extremely important to have a direct communication between your neurologists and Gi doctor. Especially, if these medicines will be taken for a long period of time. These can also cause osteoporosis so may have to take medication to prevent given that PD meds already increase risk of this. Plus can worsen headaches many of us already have migraines with PD.

• Tumor necrosis factors (TNF) e.g. Humira, Entyvio, Tyrabri, Stelara
• Dietician consult if losing too much weight
• Add multivitamin can be a melt
• May need to increase nausea meds since many PD drugs also cause nausea. Take ginger, mint, and peppermint teas to help with this. I have been on a diet of peppermint and mint tea for last 3 weeks along with Zofran to control severe nausea.

• Limit dairy products
• Low fat foods
• Eating fiber can exacerbate symptoms – steam vegetables instead of raw

 Things in cabbage family like cauliflower and broccoli usually make things worse
 Avoid nuts, fresh fruit especially those with skin like apple –if you do eat peel first, no popcorn, seeds or corn. Things like watermelon, pineapple, bananas,
• Avoid caffeine, alcohol and spicy foods- there goes my coffee, sweet tea, Mexican food and margaritas!!! My, my, what am I to do?

• Eat small meals -5-6 meals – this will help both PD and colitis
• Drink lots and lots and lots of water!!!
Can have jell-o, Popsicle, Gatorade, even Iv fluids if necessary to avoid dehydration

PD medications will have to be given either at higher doses to compensate for loss during exacerbation or be given in alternate route. For instance, if colitis is severe and intractable perhaps pump and /or DBs would be best. During the exacerbation you may also need to switch levodopa to oral disintegrating I.e. Parcopa, use 24 hour amantadine (Gicovri), Neupro patch and apomorphine either injection or melt strip once available. This will keep you from losing effect of medication because of gi malabsorption and diarrhea. We don’t want to decrease medication dose because not only will you have risk of falling but also of aspiration which would only complicate matters.
Best thing is be proactive in avoiding things that can trigger an exacerbation not always possible to control but we can alter our life style to reduce chance. This means decreasing stress through meditation, exercise, eating small meals regularly on time, drinking lots of fluids and sleeping well. Don’t forget routine check -ups!


all rights reserved by Maria De Leon

parkinson's disease, Parkinson's Health

Stem cell therapy in Parkinson’s disease: Promising treatment or Hoax? By Dr. De León

Given the fact that living with a chronic neurological disease like Parkinson’s for which there is no cure can make any of us in a moment of desperation turn to any form of treatments and therapies which promise a cure. I have recently noted an increase of talk about this subject on social media in our PD community. Unfortunately, many good people have been bamboozled into believing the hype on social media about stem cell therapy as a cure all! The people offering stem cell therapy as a cure have prayed upon the fears, and suffering of many in our community. However, it is important for me to outline the facts and discard the myths surrounding these so called new therapies that promise so much.

Let’s first look at what are stem cells and why are we so interested in stem cells as a possible treatment for Parkinson’s disease.

• They can continue to divide for a long time
• Unspecialized
• Can give rise to specialized cells

Back in the 1980’s, there were trials in which fetal dopaminergic neurons were transplanted into the brain of some patients some of who had long lasting effects. It was then proposed that in vitro dopamine cells derived from cells derived from embryonic cells and bone marrow could be harvested to produce same effect. However, as of today, there has been no evidence that in vitro cells injected/transplanted in to animals with experimental PD can then re-innervate the striatum with dopamine neurons in vivo and give rise to a considerable improvement and recovery from deficits resembling human Parkinson’s symptoms. Furthermore, in order for the recovery to be effective one must have a large quantities of dopamine neurons which has not been feasible due to extremely short survival after transplantation.
Since, there is still so much we don’t know about this extremely complex disease, finding ways to modify it has proven to be a daunting task. Nevertheless, back at the beginning of this decade there was a small study with stem cells which showed some modicum of promise. This study used adult stem cells (these can be obtain from same person -autologous or another individual-allogenic). Both have their advantages and disadvantages.

Types of cells
• Embryonic- An embryonic stem cell is one that can differentiate into any cell type of the body this is known as pluripotent these then give rise to multipotent stem cells which can the. Differentiate into specialized terminal cells e.g. nervous system giving rise to different type of neurons
• Adult …they do not regenerate as well and if place in different environment these may or may not develop that areas specialized cells which means these cells have to be placed in basal ganglia to even have a chance …
• Umbilical
• Hematopoietic

Studies involving stem cells have included embryonic cells and placed into brain via olfactory nerve tract
The main problem is that most of the people claiming to have the “cure” using stem cells are using adult stem cells from the skin which remain as skin cells especially since they are given back as an intramuscular injection. Many times these develop into scar tissue or lipomas (fat tumors)causing other problems. It is also important to note that when receiving cells from another individual these must be matched for ABO blood type, Rho factors as well as gender. If implanted outside of the nervous system having a mismatch can result in antibody production as well as decrease in longevity of cells. However, if implanted in the nervous system because of blood brain barrier this is not an issue necessarily. However, the effects of this is not known as of yet because the nervous system also possess cells like macrophages and glia which are the brains immune system which can potentially attack these new cells.

In the study, I mention previously autologous totipotent stem cells were used.
These cells are capable of differentiating into any cell and give rise to an entire human organism. The cells were uncommitted to a particular cell type when used therefore potentially much more likely to develop neurons if placed in nervous system. The reason autologous cells are preferred as I mentioned before we would eliminate the need for autoimmune suppressants necessary in all transplantations when foreign cells used.

Remember not all stem cells are alike…although stem cell research is actively evolving and is currently a very dynamic field. Scientists have discovered that hematopoietic cells can be harnessed to develop into nerve cells. These types of cells have already been used to treat other medical problems. However, cells have to be extracted from bone marrow (-autologous). Plus it need the right location …into the striatum of the brain. Placing outside of basal ganglia will NOt produce the appropriate dopamine producing neurons even if placed in the brain much less if placed outside of the central nervous system. Things like temporal lobe epilepsy could potentially result if cells are placed at random in the brain causing migration to other parts of the brain.

In conclusion, what we want is autologous adult totipotent stem cells not embryonic or fetal to be placed inside the brain cavity meeting all these requirements makes for a higher likelihood of success although yet to be proven. Unless, you are participating in a trial meeting these parameters then you are allowing yourself to be part of sham therapies which on top of being extremely expensive could be deleterious to your own health. Fortunately, because of so many scammers, the FDA recently announced back in march of this year that the “wild west of stem cell therapies” is coming to an end with the introduction of a new frame work and guidelines due to the national and international pandemic of providing treatment which are not only ineffective and costly but also proven harmful. I for one could not be happier about this! People need to be held accountable for their careless actions.

As an aside: An autologous bone marrow adult totipotent stem cell study is currently taking place at UT Houston under Dr. Mya Schiess- The coordinator number to get more information can be reached at 18326329 to see if you qualify.

All rights reserved by Maria De Leon


Lindvall O., Kokaia Z. Stem cells for the treatment of neurological disorder. Nature June 29, 2006 Vol. 441

Click to access treating-parkinson-disease-with-adult-stem-cells-2329-6895.1000121.pdf

Is the wild west of stem cell therapies coming to an end? American council on science and health

parkinson's disease, parkinson's treatments

Treating Biphasic Dyskenesias in PD: by Dr. De Leon

Have you ever seen a water spout?  A sudden breeze of wind elevates the water and makes it spin faster and faster in a matter of seconds until it gains enough momentum to glide on the surface and travel right out of its boundaries. I have stood at the edge of  shore watching in awe how a once calm ocean suddenly spewed out a spinning water  spout the size of a skyscraper. As it passed by my side scaring the heebie-jeebies out of me, it crossed the street, as if it owned it all along.

This is what having biphasic dose dyskenesias can be like. This is not a frequently occurring type of involuntary movements caused by levodopa intake, when it occurs it can be extremely unsettling to say the least. this is by far in my experience the most difficult to treat with medication. This is because patients experience dyskenisias of brief duration shortly after taking medication (within half hour to an hour) followed by severe spasms and dystonia particularly in lower extremities 1-2 hours later. This phenomena can occur through out the day as were mine in the evening. but, they are more commonly present in the am with first dose.  Although once in a while we get lucky as was my case. For me decreasing the dose of medication in the evening did the trick. However, the best solution and treatment for people having this problem is deep brain stimulation.

Since all dyskenisias are not equal, you as patient and care giver can best advocate for yourself or loved one by keeping a close diary of events so that your physician /MDS can best adjust or decide plan of action to best suit your needs.

Recommendations: keep a diary of  events:

  • total episodes you have in a typical day/ week/month
  • how many hours/ minutes before the dyskenesias take place after medicine intake
  • how many hours/ minutes do these episodes last?
  • after the episode how long before you started to feel well again/ have symptom control?
  • how long did you have symptom control with medicines?
  • did the symptom control last from dose to dose?
  • did you experience dyskenesias then spasms? How often and when?
  • also think about how many hours in the day you are well vs unwell?

Don’t forget to list any and all medications you take to cope with these symptoms when they occur. (any over the counter meds? home remedies? pain pills?)

More importantly:

How is your life impacted by these episodes

How often a week/month do you miss work/paid occupation or domestic responsibilities because you are experiencing dyskenesias?

How often do you miss social events weekly/monthly with family and friends because you don’t feel well due to the dyskenesias?

Are you unable to do or carry out your hobbies or passion? how often does this happen?

The day i could no longer go shopping for fun or even go to the movie theater which I love to do was the moment I realized something needed to change!

You are now equipped to be your own advocate- know your symptoms and your choices!

Fortunately, we now have more tools in our armament to make life better including a long list of medications one of which is the recently approved Gocovri (amantadine ER) for dyskenisias – however, because there are different types this may not be the answer for everyone. As an alternative, we now have 3 types of DBS surgeries or palladotomies, for those who live in countries where DBS is yet not available, which you can discuss for your physicians.

@copyright 2018

All rights reserved by Maria De Leon MD

fluctuations in parkinsons, parkinson's awareness month, parkinson's disease

Best way to Deal with AM (early morning) offs! By Dr. De Leon

” When the world careens out of control, we can rest in the fact that God spun this world with a simple word. Matter from emptiness. Beauty from void. Community from chaos.” Mary E. DeMuth

Today, I will talk to you about a subject that is so important for us with PD to know and understand. Many of us talk about ‘off’ periods but still have some confusion about what that really means. First, you should know that there are 4 ‘off’ periods we doctors focus on. These usually are in relation to levodopa.

#1 end of dosethis is known as the return of PD motor and non- motor symptoms which resurface once medication effect ends. For instance, if I have tremors which lessen or go away completely with intake of levodopa when the levels in the blood begin to fade before my next levodopa intake there may be a resurfacing of tremors. What we want is for symptoms to be continuously suppressed with little or no intervals between time one dose effect ends and the effect of next dose begins.

#2 peak dosethe levels of levodopa circulating in our blood stream fall into a bell curve shape. At the beginning, levels rise slowly and sustain within therapeutic range for several hours. However, as our disease advances we may experience a fast rise going above the therapeutic range and then drops faster in a shorter amount of time. So not only could you experience end of dose effects sooner than before but at peak level of dose because outside of therapeutic levels one may experience- side effects like dyskinesias. So a patient may feel good for a short period of time have dyskinesia’s at peak for 30 minutes then go back to normal.

#3 early amthis is when patients have gone a longer time without medication through the night and basically have worn off completely when they arise and essentially are experiencing an end of dose effect.

#4 sudden offwe know that when we first start taking levodopa, our brains are exquisitely sensitive to its effects, meaning that a low dose can go a long way. As time goes by the length of time it lasts in the system diminishes. But each dosage should last same or nearly same amount of time in system i.e. 6 hours every time. However, in some people the effect of medication in regards to time in which is effective becomes unpredictable sometimes it last 6 hours, others may last 4 hours while other times may not have an effect on motor symptoms. These episodes are called sudden wearing off.

The more you know the better you will be able to discuss changes and fluctuations with your physicians so they in turn can adjust your medication to fit your needs.

This I believe is one of the key reasons why so many of us are not as well controlled. Sometimes we erroneously assume what is disease, what is side effect and what is meant by being ‘off.’

I will discuss treatment for all these types in the next few weeks. Now that all of you are caught up in the terminology, I will focus on early am wearing off because I think this is a very common problem for most of us who live with PD. Plus, it is one of the easier things to treat.

Most of us who live with a chronic illness like Parkinson’s disease know how hard is to get going in the am – especially when suddenly awoken from sleep. imagine being confused disoriented stiff unable to move with ease or move at all – I know all of you have struggled to get out of bed, get dressed, shower, brush your teeth or even take your medications first thing in the morning. At times I had been unable to dress myself without falling / feeling like a woman made of tin and unable to find the oil to save my life – you might even awake not knowing where you are or how you got there.

Some people may fall out of bed or fall with first step because of orthostatic hypotension but more commonly due to freezing episodes.  Some of you may even experience shuffling while walking bouncing from side to side of corridor with fear of falling, unable to open bottles to even take first dose of medicine in the morning.

Sound familiar?

If this happens every single morning, then we are dealing with am off episodes.

First, you must look at the time you take your last medication.

Second, what time do you awake in am? Do you wake up in middle of the night to go to the bathroom or some other reason? Can you move with ease at that time? Or are you having dyskenesias?

Third, what is your last medication? Is it long acting or short acting? Do you take anything else to make it last longer?


For me, I began waking up extremely rigid but was also noticing that I was not moving in bed at night – normally stuck in one position which was causing my arm to go to sleep. I go to bed late and wake up early. So I increased my medication by taking a dose close to bed time but also made sure that this dose would last till I awoke the next day. Often times we treat am off by increasing bedtime dose and prolonging it with comtan, amantadine, dopamine agonist. I prefer a comt inhibitor it provides a smoother release. Now that 24 hour comt inhibitor (opicapone) available in some countries plus extended release amantadine (gocovri) we should be able to diminish these morning periods with greater ease. Another way of improving am wearing off is by taking apomorphine which will kick in fast and cover you until your first am oral dose kicks in.

The main point is documenting and paying close attention to how your medication is working to allow doctors to adjust your medications as needed. Caution, many of us have severe constipation which interferes with absorption of medication in the small intestines- what this does is delay onset of medication effect – NOT a wearing off!! Plus, the doses can accumulate giving you more side effects when it kicks in like greater nausea, vomiting, dizziness, hypotension, and/ or not control symptoms to the degree they are usually controlled (blunted affect with every dose).

so lets get moving again in the am by following these tips.

@copyright 2018

all rights reserved by Maria De Leon




chronic illness, Parkinson's awereness, parkinson's disease

End of life choices in Parkinson’s : bridging the disparity across cultures : by Dr. De León


No where is being able to navigate living with a chronic progressive neurological disease more Important than in the ethnic communities. We as Latinos are far behind in not only getting prompt diagnosis and correct treatment due to financial, linguistic and cultural barriers but even when there is appropriate care, nearing the end of life can be one more hurdle for which many are ill prepared especially in deciding if and when a loved one can be placed in hospice.
Understanding the challenges of various ethnic and racial background could help us increase and improve the care of our loved ones when the end is near without leaving us emotionally, physically and financially bankrupt.
Among minorities there is still a lack of trust in traditional medicine. For some it dates back to studies like the Tuskegee syphilis study and the polio study in which minorities were infected with syphilis and polio concomitantly and allowed to progress without treatment even when penicillin treatment was made available to rest of world.
Among some of the concern Hispanics have in placing there loved ones in hospice ( a place for palliative care to ease pain and suffering in last days) is the fear that a loved ones spiritual needs will not be met. This could be quite distressing for instance if someone believes that they must be allowed to have a last confession before dying otherwise risk the possibility of eternal damnation. One of the things my grandmother enjoyed most while she lived her last months under the care of hospice was the weekly visit by a spiritual leader.
Another problem is that minorities like Hispanics typically like to make decisions in a more general manner in which everyone’s voice is heard as supposed to having a single person being the one making all end of life decisions for family and patient. Although, this is still a family preference we must understand the various culture barriers in order to provide optimal care. Getting a social worker involved helps to facilitate the interaction between the providers and the patients and family needs and wishes.
But, then there is also the stigma and guilt placed by society and culture particularly within the Hispanic communities of not taking care of loved one at home …we as Hispanics don’t put our elderly in nursing homes …doing so may indicate a sign of weakness as well a lack of love and respect. Traditionally, this type of behavior is frowned upon and can cause major psychological distress for caregivers and patients as well (for loved ones may be a feeling of abandonment accelerating depression, anxiety, and fueling resentment).
In order, to aid in finding the best care for end of life choices is first eliminating the guilt out of the equation by asking family to think of loved ones best interest and wishes. This means beginning the discussion early on in disease diagnosis with family and patient alike while the patient is still able to make informed consent and express his or her wishes. Once again, availing of the services of a social worker, counselor or spiritual leader can help ease the discussion process.
The other important thing is to discuss exactly what is meant by hospice and the expectations of all involved. For instance, depending on agency and to some degree the insurance provider patients may only be admitted if have terminal illness that will cease within a week, others a few months while some even provided care for years. Secondly, just as the requirements change from facility to facility for admission so do the locations where services can be provided such as hospital, nursing home, or home. My grandmother had hospice care at my home for the last 6 months which made it more comfortable for her, eliminated any guilt of placing grandma under hospice care, yet provided the medical support and palliative care she needed. In e she had he added benefit that I could tend to any immediate life threading infections and such while this may not be the case for some hospice facilities or agencies which only focus on pain and feeding. Others even allow patients to still visit their providers or vice versa allow physicians to visit them at home or at nursing home.
Finally, when determining who and where to use as end of life provider research to see if the staff are acquainted with a patients cultural needs. My family and I were lucky to find a hospice nurse which was Spanish speaking which made the care much more comfortable and eliminated my concerns regarding my grandmas ability to communicate any discomforts or problems to staff in my absence.
In the end making the tough choices of caring for a loved one until the very end depends and starts with an open communication between all parties involved patient, family and health are provider(s). Typically, I would schedule a separate office visit to discuss these issues specifically making sure we all had a clear goal in mind followed by contacting appropriate services to carry out patients and family wishes.
Discuss the wishes for end of life care through out the disease progression to ensure that the patients wishes are being carried out. Plus, by starting the conversation early you can avoid some of the heartache and guilt that usually comes about as our loved ones are nearing the end of their lives.
Remember end of life choices should NOT be made at the end of our life….
@Copy right 2018
All rights reserved by Maria De Leon MD