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

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

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

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



chronic illness, parkinson's awareness month, parkinson's disease

Quality of life considerations for Parkinson’s patients by Dr. De Leon

Life is all about quality Not quantity!

My husband’s first words to me upon arriving home this evening ‘was were you able to go see doctor?’ Before I had a chance to utter a word, he responded: ‘you canceled again did you not?’

I nodded, yes. ‘I was afraid of that. I was thinking all day about what the doctor had to say about your condition hoping you had been able to keep the appointment this time around’.

I am sure that this is a common scenario that gets played over and over again and again across the country and the world when living with a chronic illness; particularly if there is no one to help get you to the doctor’s office as it is my case. It is extremely frustrating to need to be evaluated by a healthcare provider yet being unable to get dressed or even show up because of physical impairments.  I worry that I will not be given appointments again if I cancel more than I keep; after all other patients who CAN show up would most likely be given preference. As a doctor I know that that’s what I would do. Another concern, at least here in this country is being charged a fee in many specialists office if there is a cancellation less than 24 hours which I understand as a professional but as a patient with daily fluctuations this is hard to deal with adding yet another stressor.

I am beginning to value the idea of walking’s at the doctor’s office even more now; something I always made room for in my practice. Unfortunately, aside from primary care clinics this practice is extremely uncommon in specialty practices. In other countries the wait to see a specialist may take months making it more difficult to get care if you miss an appointment. Hence the urgent need for telemedicine to begin branching out to meet the needs of a growing population of chronically ill neurological patients who are also getting older. As I get older and sicker, I really think I should be moving closer to the city where I can have easy access to my doctors; plus in some cities here in the States they are beginning to introduce the service of UBERHEALTH for those patients who cannot otherwise get to their doctor.

Of course, this brought me to a realization that we need to improve our assessment of PD patients beyond the UPDRS (unified parkinson’s disease rating scale) and Hoehn & Yahr scales. Sure the motor symptoms are a big component of our disease and are ever present. However, the non -motor issues and the emotional burden placed on by our disease is something we as physicians do not really take much into account.  For instance of medication, I might actually be considered normal on my UPDRS or stage 1 with H&Y scale making someone think there is no disability or need to change treatment. Yet, if you ask my friends and family what the impact of my disease is on my life I guarantee it won’t be trivial.

We don’t talk enough about how often we are missing things in our daily life!

We as physicians need to start asking open ended questions like in the past month have you not only missed work due to illness but did you miss out in other good things like spending time with friends, husband family? Were you able to do not only the things you are responsible for but what about the things that bring you joy like going shopping or to the movies, etc.?

I think perhaps is time we begin using Quality of life scales to personalize treatment and adjust treatment plan.  I think getting people on right regimen makes a huge impact on quality of life to make living with Parkinson’s much more manageable

For instance, someone may say they only experience 1-2 hours off (counting only severe offs yet not able to do normal things like keeping appointments); this person would require different treatments than someone else who can do everything they want when they want except for those two hours. We need to realize that although motor symptoms can be extremely tough and an obvious problem to contend with, it is the emotional burden which runs deeper than imagined for most of us and can impact the quality of life to a greater extent than the motor symptoms. Many people with chronic illnesses like Parkinson’s disease become withdrawn, isolated and avoid social settings for fear of what might happen in if suddenly they go off, become dizzy, nauseated, off balanced, fall, faint, lose control of bladder etc.

So besides talking to our physicians about the REAL needs, fears and limitations. How often did we self medicate? How often did we canceled or missed out on social activities? Besides getting our medications adjusted to help with the causes of why we are missing out on things (i.e. side effects of medications, dyskenesias, non-motor symptoms, generalized fatigue, etc.) we should also ask for counseling or behavioral therapy to help us and our families deal with and cope with our complex life style which often takes back seat to having and dealing with PD in its multifaceted presentation.

Keep a diary of the things you missed or had to cancel because of PD to show your doctor so he/she can discuss treatment options to get you feeling better and enjoying life anew!!

@copyright 2018

all rights reserved By Maria De Leon MD

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

Parkinson’s through time: by Dr. De León


Hello my friends!  Happy Valentine’s Day to all my friends around the world!

As always, I appreciate each and everyone of you and thank you all for allowing me to be part of your PD journey either as a person with disease, caregiver, friend, spouse, partner, child, grandchild.

These last few weeks, I have been having a closer more personal intimate look at my old friend.  Aside from having new exciting PD projects in the works ( another women’s book in the making among other things);nevertheless, my biggest challenge is adjusting myself to a new stage in my life. Not only will I be celebrating very special wedding anniversary and 50th birthday this year but my Parkinson’s is slowly inching its way into a more moderate stage. Perhaps is not so much that my Parkinson’s symptoms have gotten   more drastic or severe, although I experience some wearing of more frequently than before in the form of dystonia. One of the reasons for which writing this blog has become more challenging. It is difficult to type and difficult to speak, so i rest my arm and voice like the famous opera singers and world class pitchers til is absolutely necessary to exert myself. besides waiting to try long acting drugs like 24 hour Opicapone ( comtan inhibitor) or extended delivery Goccovri ( extended amantadine)- I have had to resort to OT for construction of braces and scheduling ST to improve hypohonia because more and more my family is asking me to repeat myself or telling me that I never said anything which can drive someone mad. perhaps time for another round of botox in the works….but not till this bronchitis clears!

Further,  with all these changes compounded with increasing age and disease progression, the use of multiple medications and multi-system involvement of PD is beginning to cause cautionary breaks, problems, concerns on my part, my family and of course starting to get many more puzzled looks from specialists as they try to offer me the best care possible given my long list of systemic complications and drug -drug interactions. This is precisely why I always recommend having a very close relationship with your MDS and more frequent visits to adjust the sails for the change in course. we can all get away with taking minimal doses at the beginning and not see a doctor  perhaps once a year; but as we advance that time between visits  gradually needs to shorten in order to ensure you are receiving the best care.

First stage of PD, biggest problem to over come is getting right diagnosis, dealing with consequences of diagnosis followed by learning to live successfully with new disease as we find the right medicine cocktail with least side effects and maximum efficacy. Not an easy feat which may take a number of years, lots of tears, frustration and redefining boundaries with ourselves and every relationship thereof.

Second stage, I am beginning to realize more and more why-my Parkinson’s patients and many other people with illness suffer from increased isolation and depression due to only having so much time and energy. thus,  if we are not cautious we can easily over extend ourselves and become emotionally and physically exhausted. I swear I have never spend more time as a recluse as I seem to be more often these days.  I don’t want to go out, get dressed and put up a happy face when I feel miserable inside from pain, fatigue, and constant coughing . Bu,t i like to think that me taking this necessary time for myself will allow me to heal faster physically as i recharge my batteries but make a very concerted effort to not give in to illness nor seclude myself completely. One way i maintain my mental sanity and avoid feeling emotionally lonely, sad, or depressed is through use of technology.  I still do conferences via skype and communicate with friends via internet and go out when someone is able to drive me or the second i feel energized. It is extremely important that we redefine our goals at every stage, reevaluate or medications and also our support system. as our bodies change so does the effect of medicines. on average the dopamine medicines usually stop working at maximum capacity around 10 years- so I too am thinking of taking a bit of holiday but within 3-6 months they can be reintroduced and be good as new. with age our livers don’t function as well nor our kidneys compound this with beau coup medicines and our livers begin to have a harder time clearing things which can increase the side effects. Don’t assume that because you have been taking something for a long time without problems it will continue its same course. Simplify, Simplify!!  Always always look at possible interactions particularly those that may cause more trouble .

With each passing day, I gain further insight and greater appreciation for those living with chronic illnesses and have a new found respect for my own patients. i empathize with those who frequently rescheduled. when you become chronically ill when we are in need of a physician the most we are often not able to go because we cant drive ourselves or dress ourselves cant sit for a long time etc. So we either don’t go or go to ER. I have cancelled appointments more times than I care to admit. I too am working on a strategy to make sure that when I have appointments I find a friend, relative, or my husband to take me and not be so concerned about my appearance in public for that moment or be concerned that you are needing to ask for help. Really doctors don’t care what you look like especially if you are ill they understand! Plus, your friends, family and loved ones want to help they just don’t know how unless you ask. yesterday when my husband accompanied me to see the specialist i had a revelation. I was portraying my own feelings of inadequacy and insecurities on him thinking that he was somehow bothered by having to take me and care of me. Since i have always been independent. but turns out he said after i thanked him for taking time to be with me, ” i like taking care of you and would do more often expect you don’t allow me.” so don’t isolate yourself thinking you are alone in this journey or have no support because all those who love you and care for you will step up if given the chance.

You can do this.. life is but a continual dance sometimes fast sometimes slow but as long as you keep dancing you will always have fun.

@copyright 2018

ALL rights reserved by Maria De Leon MD

chronic illness, parkinson's disease

3 Tips to Making the Most of the New Year: By Maria De Leon

As we stand on the brink of a new year, is only human to want to find comfort in the past. However, we must remember that life is a constant cycle of seasons. If we want to be happy, we must learn to embrace the changes having PD brings into our lives such as a new found creativity. One must first learn to let go of things that hold us back like anger, trepidation, and fear in order to move forward. The New Year is our opportunity to shine and try new things like new therapies, treatments, and even renew our strength by making peace with our illness.

We now have 365 new pages to rewrite our history with PD. Will we throw in the towel or will we unveil victory? It is all up to us.

 Tips to a great 2018.

Be good to yourself. No matter how you feel inside be present in the moment. Always acknowledge your feelings. Don’t try to ignore them, hide from them, or give in to them. You are no good to anyone if you are over run with emotions. The best way to keep emotions in check is getting a good sleep even if you go to bed till 3 a.m. as I often do. Rearrange your schedule, ask loved ones not to disturb you, disconnect your electronic devices, turn off phone, get dark curtains, and tell yourself this is your time. Prioritize yourself. I have found that if I allow myself to sleep, I feel almost normal and can tackle things much more efficiently and effectively.10432937_753295454728183_4275273717487230047_n(art by Ross Webb)toriaband

Make time for what makes you happy. Allow yourself time to pursue new and old dreams making reasonable short and long term goals. This means spending time helping others by being a mentor, a shoulder to lean on, a caregiver, and an advocate. Always wanted to paint, write, play an instrument, change careers, travel, learn a new language, or simply spend more time with family and friends? Be bold and try doing it this year. I have decided to go back to an old passion of mine- singing. When I began having dysphonia (vocal cord dystonia), I was saddened and gave up doing something that I loved. Although, I no longer can reach high notes, I have discovered a range I never thought possible. This is sure to make life interesting and perhaps even improve my hypohonia by strengthening my oral-pharyngeal muscles.

Find a way to move and stay active. It’s a lot easier to exercise routinely when you have a friend by your side. The best way to maintain an exercise routine is finding something you love and can fit your physical needs. Whether it be tango dancing, swimming, boxing, or bicycle riding, all of these activities are sure to not only improve your physical and emotional disposition. But, don’t neglect your brains need to be exercised as well. By participating in social gatherings and learning new things as I mentioned above you will improve your cognitive status. I love doing all sorts of puzzles. Find things to challenge you even if it’s eating with your eyes closed to discover the texture of foods or taking a different path on your drive home or customary walk. 2017 MJFF DC-292_zpsumbzibpd

Self- love is the underlying message which can only be achieved by boldly embracing our weaknesses and highlighting our strengths, helping others and being kind to others, and opening ourselves to new possibilities. Never forgetting to always smile and be thankful for the little things.

Happy New Year 2018!


Parkinson’s Diva

copyright @2017

all rights reserved by Maria De Leon MD


behavioral problems and treatments in PD, chronic illness, parkinson's disease, Parkinson's treatment

Anger in Parkinson’s Disease? myth, reality or cop- out? By Dr. De Leon

” Anger is an acid that can do more harm to the vessel in which is stored than to that into which is poured…”


I thought I would write today about a very sensitive topic for all of us especially for me as of late. it seems that my docile, kind, friendly disposition has been taken over by a “she- Tasmanian devil” I am ashamed to say. As I try to patch and mend the path of wrath I have left in the wake of my anger outbursts this week, I am doing a lot of soul searching as to the cause of this sudden behavior. Surely, I have always been high strong ( and head strong) and known to get heated a time of two but lately it seems this is the norm rather than the exception.  Of course I recall since the onset of my illness the increase proneness to irritability which improved and settled with starting treatment and as my disease has progressed I notice increased bouts of irritability with tapering levels of medication right before the next one is due. So is this a biochemical manifestation possibly. However, what I am talking about here is right out uncontrolled anger outburst set off by the mildest of provocations or difficult situations.

Anger is a real thing in those of us with neurological disease and merits proper attention and treatment!

As a Parkinson expert I know that men are more likely to behavioral outburst and anger which often were attributed to poor boundaries or coping skills or even onset of dementia. However, looking at my own situation I am neither unhappy, lack boundaries, nor am I getting demented yet; I feel at times as if my anger button is suddenly pushed by an invisible fiend -perhaps more prayer is required but what if medication is contributing to these outbursts? I know I should not be bad the situation does not call for such exaggerated response of fight or flight yet, I am like an evil queen ready to defend her throne to the death! perhaps it has to do with the amount of epinephrine in our bodies or perhaps more likely the disruption of the brainstem-basal ganglia pathways involving serotonin and dopamine. for you see, the metabolism, synthesis and uptake of both dopamine and serotonin are intertwined. Both neurotransmitters are both metabolized by MAO  enzymes. Also they sometimes compete for this enzyme. thus, when we create a dysregulation by blocking one or taking more of one than another we are disrupting this fine balance.

After all we take gobs of dopamine and block its degradation in every fashion and form so it must follow its normal path of synthesis- ultimately leading to excess epinephrine and disruption of serotonin, dopamine connections. we are learning that mood disorders are very complex and require treatment with various monoamines because dopamine is just as important as serotonin. Although low levels of  serotonin are the ones implicated in “anger outburst.” These anger outburst seem to be correlated with higher intake of dopamine since I have been writing I need extra dopamine. (losing hours of manuscript did not help situation, I might add). The consequences and side effects however, could be too high a price to pay to be able to function mentally for a few hours. I don’t like myself and feel bad when I get mad but seems I don’t have  power to stop is like a horse once release from its standing place in a race it must run its course no matter how hard I try to stop. These feelings if untreated can potentially cause a vicious down fall with feelings of remorse and shame leading to depression thus increasing likelihood of anger. I knew that my brain was out of sorts and have increased my serotonin producing meds and I have felt normal again.

I have read several blogs and post of people experiencing this same phenomena, which I believe in the past as caregivers and health providers have been too quick to dismiss. I know that dealing with dementia patients this is a common problem even in their lucid states. So, perhaps the microscopic and macroscopic changes occurring in our brains are sufficient enough to disinhibit us especially since part of our primitive brains (entorhinal cortex- including the limbic system, amygdala) involved in emotion are at the core of this disease. I don’t believe that we are angry because we have an illness although, there may be a few out there who could fit into this category. I, for one, have fully embraced my Parkinson’s and have thoroughly enjoyed making a new life. Thus, this theory does not make sense plus this is a sudden uncontrolled behavior. These events have made me recall my own patients, of course all those whom I could conjure up having similar outburst of anger were all men.

This fact however, does not preclude us women from experiencing similar phenomena. I myself was attacked by a PD patient when he suddenly became angry at my medical recommendations. He went from a docile sweet gentlemen to a fierce tiger in less than a second a similar thing happened to a friend who actually suffered grave bodily injuries as a result of such unprovoked attack. Then there is the saddest story of all, one who actually shot his wife in a moment of rage which immediately regretted and  was attributed to medications. This is because we are seriously disrupting this system- many speculate that this disruption is the cause for schizophrenia not just excess dopamine (which in effect is what we are producing in our bodies by replacing massive quantities of dopamine without considering other chemical imbalances caused by this). This disruption in brainstem basal ganglia as a cause of psychosis and out burst of anger are supported by new treatment of PD psychosis with drug Nuplazid (pimavanserin) which acts on the serotonergic system.

I want all my readers to realize that this is a neurological problem that stems from unbalanced chemicals in brain due to both illness and unfortunately to medication effect. As I have often said, the brain is not only a complex intricate organism but is in constant balance and altering one chemical will have many repercussions because of its intricate connections. Thus we can’t simply disregard these and act in a vacuum when treating the many symptoms of Parkinson’s and must always think of what could possibly be affected to try to maintain order. Most common causes of explosive anger is brain injury (trauma, stroke, tumors, encephalitis) or neurological neurodegenerative disease, Parkinson’s, Alzheimer’s, etc.

I know that this is particularly a HUGE problem with those who have end-stage PD especially those with dementia.

Symptoms of Anger /rage outbursts: out of proportion to situation!!!

Things to watch out for preceding aggression:

  • irritability
  • increased energy
  • racing thoughts palpitations
  • chest tightness
  • mad
  • increased tremors
  • tingling

(myself the night before or day of episodes felt almost manic, irritable upon awakening, out of sorts, with increased heightened awareness and energy and racing thoughts)

of course if you have any of these is a sign YOU are out of control and NEED HELP ASAP! if reason has left the building and consequences don’t matter….

  • physical fights
  • property damage
  • threatening or assaulting people/animals


Recommendations: Being aware there is a problem is the first step to healing

  1.  Seek professional health ASAP –
  2. Get evaluation for thyroid disorder, metabolic abnormalities and diabetes ( remember that increased dopamine can increase sugar levels)
  3. Get neuropsychological evaluation to rule out depression and underlying dementia
  4. adjustment of Parkinson’s medication
  5. Treatment with SSri’s ( purely serotonin) or preferably compound drugs like those which have SSri’s and NRi’s  ( serotonin plus norepinephrine) like Cymbalta and venlafaxine (Effexor).
  6. anticonvulsants  like Tegretol, Lamictal, etc.
  7. antipsychotics in some cases or Nuplazid if dementia present.
  8. Counseling individual and family
  9. (treatments if persistent behavior should be in tandem with psychotherapy and family therapy)
  10. work on relaxation techniques- since all of us with PD and other chronic neurological disease have trouble dealing with multiple stressors at a time and get easily overwhelmed and flustered- do as I am attempting to do- cognitive restructuring- train my brain not to get excited in face of critical situations just like when I was a doctor  in practice -YOU got THIS! if you lived as long as I have I am pretty sure you have gone through some very harry situations and come out ahead – use that imagery to handle these stressors.
  11. propranalol- sometimes can be used to help with symptoms ( the fact this works shows that there is an increased epinephrine component to anger outbursts).

I should try practicing what I preached a thousand times as a neurologist- when we avoid acting on impulse we are actually rewiring our brains to be calmer and more loving!

Recommendations for caregivers:

  1. do not confront in moments of rage especially if someone demented – because you might incur injury to yourself or loved one.
  2. if destroying property or hurting self call 911- explain they have an illness and need medical care/ call their doctor ASAP
  3. wait till calm to confront and discuss situation if not demented and get treatment – if demented and cant reason get treatment asap as well.
  4. be supportive-
  5. jot down triggers- alcohol a BIG trigger, lack of sleep etc.
  6. what helps to calm them down
  7. create an escape plan
  8. keep all firearms locked away/hidden/safe
  9. call domestic hotline 1-800-799-SAFE (7233)
  10. confide in friends to help in emergency and have a code word or visual sign which means call police


Serotonin involvement in the basal ganglia pathophysiology: could the 5-HT2C receptor be a new target for therapeutic strategies? Curr Med Chem. 2006;13(25):3069-81.

5-HT Modulation of Dopamine Release in Basal Ganglia in Psilocybin-Induced Psychosis in Man—A PET Study with [11C]raclopride Neuropsychopharmacology (1999) 20, 424–433. doi:10.1016/S0893-133X(98)00108-0

Imbalanced Dopaminergic Transmission Mediated by Serotonergic Neurons in L-DOPA-Induced Dyskinesia. Parkinsons Dis. 2012;2012:323686. doi: 10.1155/2012/323686. Epub 2011 Oct 11.

@2017 All rights reserved Maria De Leon MD

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

Update on the Role Technology Plays in PD: By Dr. De Leon

This past weekend I had the pleasure of attending the 200 years after Parkinson’s symposium hosted by HAPS. the staff did a superb job with nearly 400 attendants and a line of extraordinary speakers.

Over the next few blogs i will discuss some of the salient points that were brought up at this meeting. one of the most interesting of topics was the question of what, how, and when does technology help in the daily care and treatment of PD patients?

I know this was a big topic at the world Parkinson’s congress in Portland this past year and continues to plague the minds of both patients and clinicians as well as scientists-  how can we best use this technology already available to help us live better lives?

Although, we live in a rapidly growing technological world – not all people are technologically savvy or able to have access to these wearable devices and other technology. Secondly, even though this type of acquisition of data can lead to more robust numbers, we are not entirely sure how to use it. Moreover, the legal aspects have not been defined. Who owns the data? the doctor? the patient? the creator of the apps or technology? not so simple. But, there is a whole new field that could potentially emerge relating to this.

In my case, the legality is still a big hurtle to over come never mind how to store data so that is secure and get reimbursed for your time. Here in Texas, telemedicine was finally approved for use in various fields which opens up opportunities for people like me who have disabilities but are still cognitively able to be of service to society but navigating the pitfalls and uncertainties of how to provide care from home to a patient also at home is still not clearly defined by the laws. So I wait patiently for my time to be useful once more as a MDS.  especially since it is speculated that > 40% of those PD patients who have medicare DO NOT receive care from a neurologist. Thus increasing the morbidity, mortality and decreasing quality of life and independence.

In the meantime, we must find ways to make use of the technology available to fill in the gaps that currently exist in diagnosing and treating PD patients. We all know that although MDS can have a very high rate of accuracy in diagnosis is not 100 % proof. We do make mistakes and most usually come about from experience and knowledge base of individual making diagnosis. further, we all know that for what ever reason, happens to me all the time, mostly because of stress and anxiety which revs up the dopamine production; we tend to look much better at doctor’s office than at home. Thus, giving sometimes an erroneous picture of our illness. we may supplement our current tools through the use of TOMS- technology based objective measures.

There are 2 forms of TOMS:- (e.g. sleep studies, cardiac monitoring)

1.clinical tests conducted by physicians in standardized environments to objectively measure specific behaviors/ symptoms

2. Self- administered tests- using devices to detect and monitor specific functions or over all abilities in daily life.

We all have smartphones, watches, apps, table based tasks, other body sensors which can be used to acquire data.

However, it was discovered that 32% of users stop wearing wearable devices after 6 months and 50% after a year. Novelty wears off.

26% of apps are used only once, 74% ARE NOT USED MORE than 10 times.

plus, most of the devices only measure motor symptoms- leaving  still a huge problem in dealing with non- motor issues – which in my experience are the ones that cause the greatest interference in quality of life and lead to unfavorable life style changes.

Some on going initiatives to evaluate some of these toms are…

  1. At Baylor college of medicine under Dr. Jankovic direction, there is an ongoing study using a wrist wearable device (Parkinson’s kinetigraph (PKG)– to monitor medication response- you wear for 7 days and you are required to click a button when you take medication. this will generate a relevant report upon which actions can be made by doctor.
  2. Another one is the  EU project CUPID-  closed loop system  for personalized at home rehabilitation for PD patients. their objective is to develop clinical guidelines for developing individual customized rehabilitation programs using technology
  3.  Parkinson’s voice initiative for diagnosing PD – many of you probably have heard or participated in this already- where you simply call in and speak over the phone and make certain vocal sound weather you have pd or not… the crux is to enter enough data from all ages, pd and non pd, both men and women to develop an algorithm that would help detect the difference between a healthy person and one with pd.
  4. Also have the mPower smartphone App for PD ( introduced in 2015 by Apple) – ongoing  looking at tasks like motor initiation, balance and gait, hypohonia and memory. some data like tapping two fingers before and after are being evaluated in those in Sure PD3 ( study of urate elevation phase 3).
  5. another one that everyone can participate in from the comfort of their home is the Fox Insight- this is a questionnaire of virtual visits every 90 days – this is an online longitudinal observational clinical study to generate BIG data – however since findings are not objective the outcome is still uncertain – However- the tools and data within allow the participants to learn more about their illness and how to manage there care best.
  6. NPF Parkinson’s Central- can help provide information regarding disease and treatment and connect you to near by specialist.
  7. 9Zest Parkinson’s therapy app- once you input the required fields it will generate personalized exercise regimen with accompanying videos.
  8. Beats Medical- this app provides auditory cues to help with walking ( $300/year after 2 weeks free trial).
  9. Google glass– this was designed to help with gait and freezing via auditory and visual cues. however, when they put in the virtual reality mode patients did not do well getting patients CONFUSED!
  10. EMMA watch – help with writing via vibratory feedback

In order to be successful these devices first must be minimally intrusive in our lives. these have the potential to radically change the care of PD in the future but several hurtles still have to be over come such as standardizing these technologies, as well as assessing their true efficacy, and validity is not only imperative if they are to be of any value but also remains the biggest challenge to date; particularly as more and more devices and apps become available for patients to use.

If you are participating on any of these studies or have a device or app that you use regularly, i would love to hear from you. I am thinking of calling Dr. Jankovic about the wrist device and are already participating in Fox insight and have participated over the last couple of years in other similar endeavors of acquiring massive data longitudinally. Perhaps some true patterns can  be identified which can lead to new treatment modalities to improve the life of every individual living with PD.


@August2017 All Rights reserved Maria De Leon MD