Parkinson’s disease and dealing with other medical problems: By Maria De Leon

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“When the winds of change blow, some people build walls others build windmills”- Chinese Proverb

Lately, I have been a bit distant from my social media sites and blogs and I must ask for forgiveness. After a month of joyful celebration on the occasion of my birthday, I have discovered that even the good times can end up in flames and the best things can go up –up-up into the stratosphere in a split of a second. At that time, we stop and try as best we can to reach and hold on to the good times and fond memories before they are completely out of our reach till the wind changes once again bringing us back the things we love.
So, at present the winds of my sail have slightly shifted into some rough waters and I am struggling to hold onto the elusive butterfly of good health ( as much as one can have good health in the midst of a chronic illness like PD) waiting for a favorable wind once more.
Funny thing is that as we all live with a chronic illness, we tend to worry about things that will most likely never happen; yet the things we never see coming can take us for a loop and blindside us especially when they come unexpectedly on a Tuesday afternoon as most unexpected things do.
After a month of pancreatitis followed by a wonderful month of birthday celebrations, reuniting with old friends and working on the things I love writing, speaking, sharing stories over coffee with other fellow Parkinson’s friends, I got a most unexpected call. You have a “mass” in an unexpected place- my liver.
As my life came to a scratching halt, I have come to realize a few things.
First, how lucky I am to have a wonderful husband, daughter, family as well as wonderful friends such as you guys.
Second, despite the fact that in this country we are experiencing a terrible health crisis, we are still very lucky to be able to have choices regarding what doctors to see, multiple treatment options even for those of us with low socioeconomic means due to many charitable organizations which help many individuals and families pay for costly treatments. Recently while at the medical center in Houston, I happened to run into a patient who told me she had traveled alone from Australia after selling a great deal of possessions just to be able to make the trip to this country. She said she came here because ‘the US has the best doctors and medicines in the world!’ She was visibly desperate to find answers and new forms of treatments for her cancer. She told me that in her native country although medicine is socialized and free for all, the waits are long and they don’t have many choices …it is first come first serve and one treatment type for all. In her case for her type of cancer. I felt so sorry for her and wished that I could help somehow. After all we know, prognosis and treatment plans really need to be individualized because not a single one among us is the same as the other. Even when we have the same disease or cancer our responses to treatment are entirely unique partly due to our genetics, our sex, as well as our cultural imprinting and belief system.
I referred her to several programs which typically help people with cancer not knowing if they could help her since she was not from this country. All the while hoping and praying they could offer her the assistance she needed to help her chances of recovery and fight her cancer with the best treatment options available.
Little that I know that a few months later I would find myself in a similar situation trying to find the best doctors and treatment options for my own disease. Unlike her, I do have insurance in this country but if it turns out to be a malignancy I will also need some form of assistance from some charitable organization since according to my healthcare provider I am already in the catastrophic range for this year. I thought I was doing great!
Thus my worries at this time are concentrated only on finding the best team of physicians to help me get back to doing what I love; spending time with family and taking care of people with PD. Thank God for the fact that although out healthcare system is in desperate need for an overhaul, we have many entrepreneurs who are willing to help fill in some of the gaps. Nevertheless, we still need our government to step up their efforts so that we don’t end up in a country such as Mexico where medicine like the rest of the country is ruled by the have’s and have –nots creating a sense of laissez-faire attitude in most of the population- why seek care if won’t be able to afford treatment?
Third, dealing with my doctors over the last few weeks, I have once again confirmed the need for self-advocacy. This seems particularly true in this day and age of high physician burn -out and demands within the practice of medicine. This undue stress is imposed especially on those who treat chronically ill patients. That is because the patients with the most medical problems like myself eventually become Medicare recipients. As with any government agency there are always more regulations, restrictions, and demands on the physician. These demands have in turn left physicians stretched so thin that more things are apt to fall through the cracks then previously over the last 2 decades. Abnormal tests can be over looked easily at times…
Hence, when dealing with chronic illnesses have a voice that can advocate on your behalf if you are unable to. It takes time and effort particularly if you are already feeling bad to keep up with doctors’ appointments, insurance bill’s, tests, medications, and so on. Keep a diary, ask specific questions, keep problem issues to no more than 3, make more frequent appointments (don’t settle for I will see you in 6 months if you have ongoing problems), when getting tests done ask specifically what this test will show or help with and during follow up ask again by name the results of that test (e.g. what did my MRI brain show?). If you know you are waiting on test results make sure you schedule to follow up also if you have gotten a new treatment. Always call if in doubt or with questions. Remember to practice patience, which is the most difficult thing to have in the midst of bad news or new procedures. All things in medicine take time especially the more complicated the procedure, the history of the patient, or the findings – which is always my case. Most likely you will have to wait weeks for an answer even when all things are running smoothly – keep your cool, rest, eat well and follow up until you get the desired answer.
This too shall pass and the wind will once again blow in our favor!
when the wind blows don’t be the one fighting it rather be the one to harness it and find a new direction…

@copyright 2018
All rights reserved by Maria De Leon

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

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Aside from spending time visiting my many physicians this last couple of months and sleeping incessantly, which could be misconstrued as a form of hibernation, I have begun a women’s class on boundaries. This class has been fun and challenging at the same time particularly in regards to the physical realm.

Of course, I am always thinking about the relation and interchange of one aspect of my life to another. As I have been preparing lessons for my students, I realized that these same rules of good boundary setting could be applied to those of us living with Parkinson’s disease.

If you lived long enough, you have undoubtedly understood the importance of having clear boundaries (limits, clear likes and dislikes etc.) in order to have a healthy, happy life. This means knowing exactly when to say yes to things and when to say no. For instance, many of you know how involved I am with the Parkinson’s community thus I had been looking forward with great anticipation to traveling to Portland for this past week’s World Parkinson’s Congress. I had my room and flight reservations all squared away since the early part of the year. Then my health took a bit of turn …as I began to feel better the question was “should I go or should I stay?” (With that little giggle running through my head). Needless to say that during the moments of feeling well, I was completely ready all for another great adventure which included meeting so many new and old friends.

Yet, I had to be realistic about my health. In the end the toll on my health, assuming I were better to fly such a long distance, would not be worth the experience. Learning to say ‘no’ to the seemingly good things that can potentially be harmful in the long run is an example of having clear defined boundaries. Plus had I gone, I would have missed all the drama and excitement of my daughter being asked out to her first homecoming dance. These moments are priceless.

Seeing the excitement and drama unfold throughout the week led me further to think about how we cope and live with PD particularly in the context of raising children and teaching them appropriate boundaries.

We all know that having kids is a difficult thing – each time you think you have mastered a particular situation there comes a curve ball. We all worry about raising well- balanced, happy, self- reliant individuals. Those of us with chronic illnesses like PD know that the job is even tougher when we don’t even have enough gumption to shower or get dressed some days.

What worries me is that sometimes especially because of our illness and fluctuating symptoms we give mixed signals to our children making them confused due to inconsistent limits. One minute we may require them to grow up faster act like adults, be the parent, the caregiver, and other times to simply be a loving child. I ponder about the influence we might exert on our kids as our mood see-saw according to our pain levels and other motor & non-motor fluctuations. Are we being loving and tolerable to their needs one minute and harsh or overly critical the next?

If the answer is yes- we may be guilty of inadvertently causing our children to grow up being guarded.

  • In addition, specific traumas like dealing with a debilitating illnesses such as PD may lead to a questioning of 2 basic principles needed for kids’ essential growth into healthy individuals.
  • One is that they have control over their lives
  • Two that the world around them is a relatively safe place.

If we are not careful, they may grow up feeling these essential foundations are distorted or shaky and thus feel that they have no say in their life’s or situations. The same thing can happen to some of us who live with chronic disease in context of being able to advocate for ourselves. This feeling of lack of control can lead to poor health care and a less than optimal quality of life.

There are two important rules to healthy boundaries that will help us experience our world differently especially when we seek care for our chronic diseases.

  1. -responsibility
  2. -respect

First, don’t put up with doctors or healthcare professionals who are jerks because they don’t offer respect to others while commanding it themselves; but remember that we as physicians are human too. In all honesty most of us are really trying our best and want to help. However, in these last few weeks as I became more frustrated after seeing several new physicians, I had to take responsibility for the way I was feeling. I had to revert to my role as a doctor to remind me how I it was that I felt and treated chronically ill patients (those of us who not only have an extensive medical history, long list of medications with an equally long list of physicians and specialists they have or are currently seeing).

Although, I considered myself to be better than most at dealing with patients with chronic diseases partly due to my own personal temperament- thriving on challenges and solving difficult puzzles. Yet, even I remember being extremely frustrated at some occasions with a couple of Parkinson’s patients whom I could not make better try as I might. This frustration and powerlessness sometimes related to patients as if I were angry or uncaring. At other times, it was difficult to convey to patients who wanted a quick response (for it’s our human nature as well as a natural expectation when you live with chronic pain or a disease permeating all aspects of life) for which I had none. I felt that same disappointment, as I am certain my own patient’s experienced at times, over the last few weeks.

Thus, I had to remind myself that it was their first time seeing me and they did not have the breadth and depth of knowledge I possess having lived with my disease for 10 years. It is important to keep in mind that even when we see doctors who are specialized in our own chronic disease such as PD – they have not lived in our shoes. They have the general understanding of the complexities of a disease like PD but have no insight into the daily intricacies of living with it as it happened to me – is like knowing everything about living on planet earth vs. actually living here. Such was my knowledge of PD until I became a patient of the same.

I determined that people like us because of our extensive knowledge are the knives easily tear the veil unmasking the illusion of physicians being in complete control and able to FIX things (people) and cure diseases. I know what being a doctor is and know how they feel because I am a doctor 100 % of the time even when I am trying to be a patient which has been more often as of late. I know that because of my knowledge, I too scare my doctors a lot of the times. Knowing that we scare health professionals is the first step to a successful patient -doctor relationship. This is the second rule- respect for the practice of medicine. This also means don’t get easily upset if they forget some important aspect of your life because they have thousand other patients to see. Plus, they may be tired from being up all night on call or simply forget because they are human too. Remind them gently if it is important otherwise let it go.

In order to forge a long lasting meaningful relationship with your physicians. Remember respect and take responsibility. Don’t come in the first visit too strong knowing everything and demanding things. This will surely break a relationship before it begins. Your knowledge is a great asset as you build the relationship but your knowledge and high expectations on the first visit is like showing a possible new mate all of your flaws on the first date. What do think are the chances of having a second date?

Finally, as I said before never have more than three complaints at a time otherwise it will diminish the effectiveness of your visit. Do assume responsibility and ask for more frequent appointments to have your problems answered. As any relationship it is a give and take and the longer it last the more familiar the doctor will be with you and be able to ask for your input more and acquiesce to your needs and give you freedom to ask reason when they seem frustrated (which the majority of time is not related to you but rather a feeling of inadequacy on our part).

Happy trailing and pass it on for better long term patient- doctor relations everywhere.

copyright-2016

all rights reserved – Maria De Leon MD

Looking for the Lovely in Life: by Maria De Leon

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Suffering creates patience and patience builds character and character builds hope.”

Romans 5:3-5

 

It is easier to find things to be happy about when things are looking up and everything is going our way. However, when we are faced with a chronic illness, especially as our strenght diminishes looking and finding lovely things around us, which reminds us of brighter days and better tomorrow’s, is not always an easy feat.

I love the word lovely…it means beauty beyond compare. Something that is worth loving and fighting for. In the Bible Queen Esther was described as lovely. this is the same word I would use to describe the love of my life- simply lovely!

Lately, as I have once more been confronted with declining health, I started thinking about this word which unfortunately is not use very much in our society. the power of this word led me to think about the loveliness of God in my life through the years. Now more than ever, I wish to again hold on to that loveliness and beauty  as I find myself being torn yet again about knowing what needs to be done from a doctor’s perspective  while being terribly unhappy as a ‘impatient’ patient that needs to submit herself once more to the medical scrutiny and becoming a test subject to determine my full health issues and get back on track.

As I gear up for an extensive week of testing which involves, poking, prodding and a bit of educated guessing I really have to focus on the lovely things in my life to get me through this rough patch where I may become worse before I am better; or discover another bad problem which I am not ready to accept or deal with just yet. All the while trying to maintain my composure, hope, faith, and a daily routine especially as the new school year is about to commence with all of its challenges and demands.

When we are down and troubled we as humans sometimes just want to quit and give up . But this is the time when we need to persevere the most.

How do we persevere in the midst of trials and hardships?

We do so by finding the lovely in our lives. Looking for lovely is akin to remembering someone we love deeply and is no longer present or near by.

I am sure you are all aware of what I am referring to. when you love someone wholeheartedly, everything reminds you of that person.

Similarly, when you are down and trying to hold on conjure up those images of people and places which brought great joy and comfort. Think about all the situations in the past which seemed bleak  yet; you were able to overcome through perseverance. Look around at the beauty of a sunset, or the colors of the changing seasons, or the calmness of a wintery scene. All of them are beautiful in their own unique way and serve a purpose.

Appreciate the changes that are inevitable as the seasons. Look forward to new discoveries, new beginnings, times of rest and pruning as we welcome the unexpected changes and surprises. Me suddenly having a mini stroke and pulmonary embolism certainly was out of the blue and unforeseen but  I am learning to embraced it as a way to enhance my patience, since this has always been one of my worst traits. As the above verse came to mind, I guess in order to achieve patience one must suffer. I got a disease that makes me slow in more ways than one. But, patience is not the end goal rather than living a life full of loveliness and hope as my character is further enhanced and stripped of things that make me less than lovely and keep me from my work of helping others.  So as I undergo further testing and evaluation, I will meet friends that remind me of beautiful things, I will cherish the love of the man I love, talk more with God and appreciate His goodness in my life even as I write this. Then use what I learn to take the next step in my journey in life with Parkinson’s disease.

copyright-2016

all rights reserved – Maria De Leon MD

(inspired by Bible study of same name )

Hospital Adventures of a Parkinson’s Diva: By Maria De Leon

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Last week after having a very successful trip to Baton Rouge for their 5th PD conference, I was suddenly struck with neurological symptoms resembling a TIA (transient ischemic attack) like all good doctors for that matter ‘bad’ patients, I self-diagnosed and continued with my flight itinerary. Upon returning home, I took some aspirin and proceeded to call my neurologist of my bizarre events and went to sleep. But, before I could make an appointment to follow up on my symptoms with my doctor, I had another unexplained episode. This time resembling a ‘heart attack’. This was scary as heck!  I then took myself to emergency room feeling lousy with chest pain, shortness of breath and mild tachycardia (fast heart rate) because I did not want to upset my husband who already had enough on his plate. don’t know how in really intended to keep from him since he is the only radiologist at hospital I went. of course as soon as my name came up, he was in the ER looking for me.

The initial thought of both consulting physicians was that my symptoms were related to PD. Although, esophageal spasms can occur in Parkinson’s disease causing severe chest pain which can radiate to arm, this is extremely rare and merits further studies to rule out more serious causes. Yes, women can die of heart disease and die more often than men because of unusual presentation.Also my medication Rytary can cause chest pains but no other symptoms; plus I had been on it for almost 8 months without problems. Thus, unlikely to be the cause of my new onset of symptoms.I was admitted for evaluation looking suspicious for a pulmonary embolism and proceeded to have a million dollar work up which again reminded me of the need for better understanding on the part of physicians and medical staff towards patients – particularly those with chronic illnesses like Parkinson’s. Also  for the need of us patients to develop greater self-advocacy while maintaining an open mind regarding physician’s point of view and expertise.

Both sides, I discovered still have room for improvement…this coming from someone who is both patient and physician.

First, it is hard to be objective even if you are an expert when it is your health on the line. However, having said this, you and no one else is the authority on your body. Only You know when things are NOT right!

Second, you must advocate for yourself. If you know something is NOT quite right. Find someone that is willing to listen and understand your feelings.

Third, although it is our nature to get upset when someone dismisses us or does not have a quick answer for our problem -remember that we have a chronic disease which can complicate presentation of many other illnesses. They also complicate the treatment plan for such illnesses. Nothing is black and white …even if you only have PD and nothing else. Now imagine what is like being my doctor looking at my list of meds and diseases? A veritable headache. Not everyone welcomes the challenge as easily as I do. in the spirit of making the best decision plan for my complicated disease state, a day was spent deliberating best treatment option that would have the least complications and side effects (which I truly appreciate).

As my pharmacist came to Inquire regarding my medication list because as she put it “this is a very long list. You can’t possibly be taking all of these?!” To which I replied, “yes I am!” I did not want to shock her even further by explaining that she was missing 6 other pills! Use these opportunities to raise awareness.

 Fourth, like in every realm of life there are always kind and not so kind people. Don’t take it personally. Be grateful for those who treat you kindly. Fortunately, there are always more whom are kind and willing to learn and care. Although, the haters can certainly make the days more challenging. It is best to laugh and move on. As I been doing regarding this one person who forgot her manners at home before coming to work and deal with sick patients.

There I was sound asleep for less than two hours, when in walks this person turning on all the lights stunning me and asking for my name. I was trying to get sleep out of my eyes while trying to orient myself to time and the scenario. Unable to read the clock correctly due to blurred vision, I asked her for the time, to which she replied in a loud voice several octaves from previous question, I might add, “Como se llama?”  As if I had not replied to her answer of what my name was because I was both deaf and non – English speaking. I barely answered when she plunged a huge needle in my hand almost at a 90 degree angle to draw my blood. Needless to say my vein blew leaving a large hematoma for which she proceeded to blamed me.By then my sweet nurse came into room to sooth me and reiterated my request to be gentler and use a smaller needle.

Fifth, always have advocate with you when hospitalized that knows your condition if you are not able to voice it yourself. Plus, always carry your PD (other medical illness)medicines with you. This has saved many patients including myself because hospitals don’t always carry the medications you are taking or are able to administer them in a timely manner as you may need.

The hospital was never able to get Rytary or Neupro and they were not able to get my medicines squared away till 24 hours after admission. Fortunately, I had my own to take on a timely basis.

Never dismiss new symptoms as automatically being part of PD and be ready for sometimes extensive evaluations to get to the root of things.  Remember to voice your concerns in a polite manner as you give the experts an opportunity to care for you keeping in mind that having a chronic illness that is systemic in nature can pose rather significant challenges and hurdles to overcome to achieve the best possible outcome which may take time to achieve as well.

copyright-2016

all rights reserved – Maria De Leon MD

Honor your body: by Maria De Leon

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strong

 

Coming to terms with the feelings and emotions brought on by the new changes in your body is a huge part of living with a chronic illness like Parkinson’s. Especially for us women who may already have issues about our bodies before the diagnosis occurred. Therefore, in keeping with the fact that we are all Divas and we recently celebrated International Women’s Day –  I want all of us to be kind to ourselves. We are beautiful!

When I was first diagnosed with Parkinson’s disease, my body image was the furthest concern from my mind. All I wanted to know was which medication I was going to take first and how fast would I be able to return to normalcy never expecting that my body image would change in more ways than one ….most of which were unexpected.

Of course neither did I count on getting recurrent thyroid cancer soon after my Parkinson’s diagnosis which brought on a new set of concerns and life changes along with a whole slew of side effects related to both the radiation and the new PD medications.

I was never considered thin but I was shapely in a good way, so I was told, but suddenly my weight ballooned to over 200lbs due to lack of thyroid hormone coupled with inactivity brought on a severe and total body wash out. For nearly a year, I slept almost 24 hours a day, I could hardly dress myself much less drive or care for anyone else …even sitting up to watch a movie drained me completely. Of course at that time, I was just trying my best to survive and live my life as best I could…far from my mind were the thoughts of diet, calorie intake, or weight concerns.

I was more concerned about my hair loss…although, realistically no one other than me was worried about eventually becoming bald since I have been blessed with an enormous amount of hair. Yet, it was very distressing to see hand fulls of hair on my pillow each time I awoke and see hand fills more fall as I tried to wash my hair – poorly I might add due to both Parkinson’s and thyroid disease. I was so weak I could not even hold my head up ..the little I did walk was always with my head down..which was interesting to notice everyone’s shoes. On a rare occasion, I ventured out to the store with my friend, as I was pushing the cart rather holding on to dear life I noticed a beautiful pair of Royal blue high heels pass on by and I so wanted to know who was the woman wearing such exquisite pair of shoes to a grocery store. I concentrated all of my efforts to get a glimpse of the woman by cocking my head forward and looking up…when I realized it was an older woman ..probably 70 years old, a tear trickled down my cheek – because here I was in the prime of my life and I could not even do basic self grooming much less wear a beautiful pair of shoes (my favorite thing to do).

Ambulating slowly, changes in vision, stiffness, tremors, balance problems are all readily acknowledge ways in which Parkinson’s affects a person living with PD but the aesthetics aspects are not high on the list like changes in skin, hair, and of course weight issues.

Although, initially all my weight problems or at least the majority were related to my thyroid over the years my weight has gone up and down due to Parkinson’s medications which has been rather frustrating. Then of course are all the tons of steroids that have been pumped into me for asthma and recurrent back pain.

Even though some people can experience weight loss, most of us women have just the opposite effect. this is because the medications tend to cause bloating, water retention and increase our  cravings for sweets (this is all Parkinson’s patients), compounded by the fact that our bellies protrude more due to age, possible hysterectomies and slow gi motility and we are fighting an uphill battle especially when our activity decreases due to physical manifestations of the disease. plus, although it has not been well studied but i have seen it time and time again an increase in weight in women who have had DBS surgery. so all these things together may cause us undue stress when we no longer can fit into our favorite dress. Yet, our doctors simply state, “you must lose weight!” without really understanding all that is entailed.

But, when your kids start noticing that you where a lot of ‘stretchy pants’ – the message is clear. What to do next?

So you start with  accepting your body and learn to appreciate it and enjoy it. Never give into self pity or despair. Someone once said that ‘body acceptance is a journey not a destination.

Begin by loving yourself and start by making small changes- change the things you can like eating healthier, exercising more, seeking a nutritionist advice,  joining a support group. However, we must also remember that one of the biggest contributors to weight increase is poor sleep. As a PD patient we all know how hard it is to sleep sometimes. all last year i took advantage of this to stay up all night writing but although I seemingly accomplished a lot I only manage to add insult to injury when it came down to my health and weight issues.make sure that if you are having sleep issues you speak to your doctor and start by having a routine – no t.v. in bedroom, keep room dark and cool and no electronics before bed time; of course daily exercise in the am helps with this as well.

Acknowledge how you feel – its not vanity to want to look good but is more important to be HEALTHY – a heavier person can be healthier than a less heavy one so don’t get hung up on the actual number on the scale. don’t hold yourself up to an unrealistic standard which can only be harmful- talk to a caring and knowledgeable physician or medical professional. Always focus on the POSITIVES!!!

I am enjoying my life and doing what I can to minimize any further weight increase while working once again on losing unwanted pounds -. getting plenty of rest…when my body calls for it and sleeping at least 8 hours a night. Proud to say, I can now parade around in my own beautiful pair of blue high heels even if it’s just for a short period of time.

@copy right 2017

all rights reserved by Maria De Leon MD

 

 

 

Women & PD: by Maria De Leon

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My thoughts regarding my life with Parkinson’s as an MDS  mirrors those of a great warrior when she quipped  “it feels as if this life is not my life. It is a second life. People have prayed to God to spare my life and I was spared for a reason. To help others”…(with the same struggles)- MalalaIMG_1996

 

It has been a couple of weeks since I wrote down my reflections and introspection; but for a change rather than musing out loud I have been amusing myself meeting so many wonderful, valiant women with PD around the country. These women from Hawaii to Arizona have inspired me to continue advocating for women all around the world. They are evidence that the well rooted common public opinion regarding women as the “weak” sex should be reconsidered. Especially, when it comes to the notion of how women living with Parkinson’s should act within the realm of this progressive degenerative illness. Yes, it is true that still we have a great deal of work to do when at least a third of the world still treats women as property and as second class citizens; yet among each culture and ethnic background we find examples of women who are courageous beyond measure who are willing to stand up not only for themselves but for others. Women like Malala who despite her young age, she was willing to put herself in harms ways in order to defy conventional wisdom and the abhorrent treatment of women in her country earning her the Nobel Peace even at such a young age. Her story reminds us that a strong voice in the midst of adversity and imperceptible roar cannot be silenced.IMG_2001

Although, we are not in this country by any means putting ourselves necessarily in the path of death, as some women in other parts of the world are, trying to alter common place treatment of women within the medical confines – still takes a certain amount of bravery. To go against the firmly held beliefs of the masses requires discipline, fortitude, and incredible conviction …

As we are on the heels of Parkinson’s awareness month- I want to  encourage all women who live with PD on a daily basis to remember that their story is also my own. Thus, I am not unique in any fashion or form all I do is encourage other women to become empowered with knowledge and become self advocates of their own destiny and health care. There is great power in togetherness and standing unified in a cause for the betterment of all women and their health issues with PD. No longer do you as a woman with PD should face challenges alone unique to your gender since half of the population is of female gender.

Things to remember about PD in women –IMG_1982

  • Women tend to be diagnosed at least two years later
  • Hormones play a role – since early hysterectomy increases the risk of PD but also women who are menstruating have worse symptoms of PD during their menses and their period alternatively worsens due to having Parkinson’s
  • Women experience more dyskenisias than men; this could be due to increase sensitivity to side effects as most women are more sensitive to similar doses given to men but also because of the weight difference (more body fat in women- causing medications to linger longer in body)  and metabolism difference.
  • Women have more depression and men have more behavioral problems
  • Women although have less dementia then men they have worst quality of life overall. Perhaps, because they also have increased risk of strokes.

However, there is an increase in hope since women are beginning to bond and find ways to support one another, lift each other up and  advocate together for changes in the diagnosis and treatment of women with PD. For this reason we are working on getting a women support round table at this year’s WPC in Portland. Let me know if you are planning on going!!

Soon we will have flyers that you can share with others regarding  the issues women with PD face. Two sources already  exists – one is with http://www.pdf.org  and “life in balance” a newsletter for people & families living with PD provided by Parkinson’s support solutions (Azilect program) issue 1-2016 – http://www.parkinsonssupportsolutions.com ; 1-866-880-8582

 Join the team. Together we can #endParkinsons.
 

 

 

Gathering of the PD Goddesses: By Maria De Leon

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Calling all the Parkinson’s goddesses and divas out there..

I am glad to say that we are finally making waves in this world of PD. As more institutions are beginning to address the issues relevant to us women living with Parkinson’s disease. So many of us have felt marginalized by this illness which can sometimes rob us of our independence as well as our dignity. We have lived in the shadows for too long feeling ordinary. But, I am here to say that as I live and breath and battle with this neurological disease as so many of you do I have found the strength, thanks to my “Parkinson’s Diva” fellows and supporters, to transform myself. My physical appearance nor has my diseased changed but one day I just woke up and voila!…I had become a full fledged Parkinson’s Diva.

After spending many years worrying about my curves, my hair, my thighs, and so many other physical imperfections as well as fretting over my career… I have found that having PD has had a liberating effect on me. Looking at the mirror, I am fully at peace with everything about myself even those pesky grey hairs and even though I walk slower, not as graceful and my smile is sometimes a bit crooked I feel blessed and irrationally radiant!

Yes!, this may be the dopamine making me a bit manic since  most people would agree that I am only “a legend in my own mind.” However, the friendships I have forged along this journey are real. Perhaps, it is true that “birds of a feather DO flock together!” if that’s the case I am glad that there are a lot of other divas out there – legends in their own mind as well. But, the truth is that I have been gathering divas for a long time-  we have cried together, laughed together, been broken up and put back together, giving, sharing, caring and loving one another has made us all sisters of the same plight and because each and everyone of you are strong and courageous and infinitely capable of making a 101 dishes with the lemons life has thrown your way – you my friends are goddesses in deed!

So no matter where you go, just listen for the buzzing of camaraderie among women with PD  who have shared tears of joy mixed with sorrow fighting for another opportunity to reinvent themselves; there you will see greatness!

In the end we must remember the word’s of one of my favorite poet’s  and a grand- goddess herself, Maya Angelou who quipped: “I can be changed by what happens to me. But I refuse to be reduced by it!”

 

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P.s. I am extra happy since I found out that my book which bears this blogs name ” Parkinson’s diva: a woman’s  guide to Parkinson’s Disease.” will be available at WPC2016

 

 

PD Women Initiative Challenging Conventional Wisdom: by Maria De Leon

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“The happiest people I have known are those that gave themselves no concern about their own souls, but did their utmost to mitigate the miseries of others.” Elizabeth C. Stanton

The other day I was watching the movie titled “Suffragette starring Meryl Steep about the women’s moment for equality in the late 1800’s in London. Seeing all the atrocities committed against women made me think of today’s world and our own women initiative in the Parkinson’s community. For years, women fought to obtain the right to be heard, to be law makers, to be leaders whose voices were meant to be heard above the roar of the crowd. Yet, sometimes I wonder if we have forgotten the sacrifices of those women that came before us? it seems some of us have settled into a quasi state of ‘laissez-faire’ allowing the same atrocities and women discrimination to go on around in and out of our communities. it saddens me to realize that even after a century since women obtained ‘equality,’ we are still considered or at least treated as second class citizens in many realms of society. Unfortunately, much to my chagrin one of these areas lies within my realm of expertise-Parkinson’s disease.

However, recently I have begun to see a stir in the women with PD community in attempting to once again challenge preconceived notions and decrease the disparity that exists in treatment and  general care when it comes to women’s issues. Although, we have gained the right to be heard as women, we still fall short of receiving the same type of treatment as our male counterparts with PD. Women with PD take longer to get diagnosed, see fewer MDS specialists and even when they do they are not offered the same treatment – fewer times get offered the standard treatment of care- DBS-(deep brain stimulation) compared to men with PD. Even when both genders present with the same symptoms such as behavioral problems- independent of the type “men were more likely to receive antipsychotics while women receive antidepressants, according to a study looking at behavioral differences in PD by gender.

However, the longer, I live with PD and work closely with those afflicted by this chronic progressive neurodegenerative illness and their families… I feel a great power surging among the women with Parkinson’s. The  women with PD initiative like the suffragette movement is starting a snowball effect among all women of all  neurological  and medical diseases not just PD. Like a snowball rolling down hill it is destined only to gain strength the further it rolls. The courageous women with PD and their families are fighting their own battle like in days of old to uphold the right to be heard to fight for equality of health care for the things that matter most to all of us women. I am proud to stand in the ranks arm to arm with the many PD women who refuse to be ignored and ostracized and are taking charge of their own lives.

Our purpose is to live and live well with a devastating illness yet be able to do it with such gusto that PD appears to others like a mere inconvenience because we are strong and capable women of caring for our families, children and our parents. But as such strong willed women who take courage and comfort from the women who have gone before us demand our given right to be heard thus be able to receive the same standard of care.

It is in such capacity that we women with PD are trying to make waves and change the status quo once more challenging conventional wisdom regarding women’s issues in PD. So, the other day I was glad to have had the honor and pleasure of meeting with other fabulous woman in the battle against PD across the country in California thanks to social media. We had the chance to laugh and share with one another our concerns, issues and challenges with this so called Parkinson’s disease. We got to discuss the Parkinson’s diva -a women’s guide to Parkinson’s disease book.We vowed not only to uplift one another but to spread awareness in the women’s PD community as well as in the health community advocating for a holistic approach to women’s issues. Thank you to Debbie, Darcy, and Sharon and all the other great women for allowing me into your home and keep up the great job you are doing in your community.

sources:

*Hubert H. Fernandez, MD, †‡Kate L. Lapane, PhD, *‡Brian R. Ott, MD, and *Joseph H. Friedman, MD: (2000) “Gender Differences in the Frequency and Treatment of Behavior Problems in Parkinson’s Disease.” Movement Disorders.15(3). pp. 490–496.

 

Valentine’s Day in the Parkinson’s Diva World:by Maria De Leon

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All of us who are moms and have children know that the day we first heard those precious cries our entire worlds changed. Where Valentine’s Day used to be a day I looked forward to get prettied up and taken out to a fancy restaurant, since my daughter came to us it’s all about her.

When she was just a toddler , I loved the enthusiasm she would have for trying to get ‘something’ for her daddy and me to show us how much she loved us…usually some type of art design she would hand make. she would wake up at the crack of dawn to jump on our bed to please hurry up and get up so we could open our presents! (sort of like Christmas in reverse!) the joy in her eyes was all I needed. This was love personified. I have always been thankful to God for this lovely angel He put in my arms!

Over the years, it has evolved from giving us her sweet cards that said ” I love you mommy! with letters missing or upside down to me finding ways to make her happy and show her how much she is adored. We would make heart shaped candy necklaces and bracelets and get Barbie dolls wearing valentines colors or get matching teddy bears that would say ‘mommy and me’ and even matching necklaces with same inscription.

It’s no secret that I love fine chocolates – so of course I look forward with anticipation to this day to previewing all the wide selection of deliciously scrumptious chocolates available. I am a particular fan of salted dark caramel chocolates, but the thing I look forward to mostly is getting some delicious chocolate covered strawberries. It seems that as my lovely daughter has grown into a beautiful teenager, she too has developed her mom’s palate for fine chocolate. So where once, I could sit down and enjoy such treats paired with a sparkling champagne its more difficult to partake of such indulgent behavior  since I became a mom of a teenager. I scout out the Internet and stores for deals of the best fine chocolates and make sure that I get everyone a box yet upon arrival they all quickly disappear and I am left with wrapping paper and the scent of chocolates in the air.

Chocolate covered strawberries disappear even faster than the chocolate without a lingering scent left behind, followed by “I thought they were mine!” Me being not so much of a kitchen goddess no matter how many times I read the instructions to melt the chocolate for the strawberries at home, I always end up burning it- so I have to wait till someone that can actually FOLLOW INSTRUCTIONS WELL do them for me like my mother, or brother or wait till a special occasion and they are sold at the store.

But, invariably the bond between mother and child is strong because in the end, she will come to lay down next to me in bed and say like before when she was a child: ” I love you Mommy! you are the still the best mom in the world, even if I don’t say it much! Sorry, I ate your chocolates but I got the ones you love right here!” followed by a big hug (which I am thankful for since does not happen much nowadays since she is a teenager).

But, Valentine’s would not be complete without the awesome, always, clever gift from my daughter….my very own diva  lipstick by none other than Louboutin – in red of course! Now, I a truly feel like a Parkinsonsdiva!

Sure I have a fancy (RED) lipstick but above all I have the love of the one that matters most to me in the world- my daughter!

Happy Valentines Day to Everyone! 

Wishing you much love today and always!!! Enjoy something sweet to boost that dopamine-& hug your loved ones today- hugging is the best way to release happy chemicals in your brain & Don’t Forget something RED in honor of Women’s brain health!

xoxo- Parkinsonsdiva

 

 

 

 

Fast & Furious Life of a “Diva”: By Maria De Leon

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The year has taken off at a fast pace and I am barely able to keep up…my goal of returning to the pool and walking has not quite panned out- already beginning to feel the weight of it all. I had a wonderful holidays with my family for the first time in almost 10 years I actually felt like celebrating. I was still basking on the joy of tradition and family when life takes an unexpected turn. I should be used to this but with this illness it seems that I become less able to cope with sudden changes and stresses leaving me a bit out of sorts.

My mom had barely left when I receive a call she was hospitalized- no chance to rest. I did a mad dash to Houston and as I approached the hospital a sense of doom, grief and Deja-vu took over me particularly as I walked into the main corridor heading up the elevators to the same floor where my dad had last been hospitalized before the bomb was dropped on our lap. My mom was now across the room my dad had last occupied and we were being taken care of by the same nice hospitalist whose demeanor saddened as well as he entered the room and saw my mom laying there. Upon discharge the attendant was not certain who the patient was since both of us were in pretty bad shape.

Of course after discharge mom could not stay home alone so back to my house we were. So it has been a comedy of errors taking turns caring for each other- the worst days were when she was extremely in need of my care and I could barely function. The day was especially trying as I had to go up and down the stairs to tend to her. By the end of the day I felt like I was crawling up the stairs. I kept reminding myself that at least I got a weeks’ worth of exercise, as per my account!

Trying to get her down from a high bed to the bathroom when both of us were having various degrees of vertigo and dizziness was something to behold. Equally difficult is attempting to sleep with her since she needs rest but the stress of it all has kicked my REM behavior into over drive. More medicines for me and a bit more for her.

Then the hardest part came telling her she has a brain tumor – although most likely benign still a “BRAIN TUMOR.” Having had my grandmother die from a similar condition does not sit well with me. I try to remain optimistic and not let her see my fear and worry. I crumble a bit more inside as I imagine not having her around, I gasp for air. Even though I try not to think about it, I wonder is this also my future – something else to look forward to?

So I do my routine mental status exam to ensure no interruption of brain function but I seem to be struggling more with word finding than she is – takes me 3 hours to recall the name of a “hummingbird.” I am exhausted!

I just pray for strength to care for her and for complete resolution of her tumor. Meantime, I keep holding on to Hope and faith and focusing all of my energy on my beautiful daughter. I say to myself “Que Sera, Sera!” As I drift to sleep with thoughts of ….sitting by the beach in Hawaii.