Hello friends …i have been busy with “life” (daughter going to college, taking care of ill family members, plus sealing with new diagnosis of lupus and recurrent pancreatitis on top of my PD); nonetheless not for one second have I forgotten about any of you nor have i stopped being the Parkinson’s Diva you all know who is passionate about bringing awareness to the world about PD .. and soon will be back to writing regularly about all the adventures and misadventures of the last several months including my new experience with Inbrija – i further wanted to thank everyone who follows my blogs for your support and to hear about the things that interest or concern you – so we may discuss. i am honored to have been nominated for #Wegohealth awards for best kept secret blog. if you feel that my blogs this one and defeatparkinsons.com have made a positive impact in your life please endorse my nomination and let others know about this blog by clicking on link above. Thank you.

Now, back to Inbrija, in my opinion -great drug awesome alternative method to bypass GI. However, I believe it is a poor delivery system for people who are off or are busy on the run and need a quick boost-

I have been looking at this Inbrija method of delivery …personally I don’t think is very patient friendly for what it needs to accomplish…first we are using when off…that little contraption that requires setting up opening pill packets, twisting and prepping pen that is used for inhaling drug is very practical for using when in an “off” state or when we are on the go…it is so much easier to pop a pill or to use Parcopa sublingual. You can’t just take out this product out of purse or bag and take. (Although i would be curious if we can prep pen and carry with us to us as needed? this would be a much more efficient way to use in my opinion). also i am not sure why we have to do 2capsules at each treatment and not provide a bigger space to do both simultaneously rather have to insert each one separately doing capsule placement maneuver twice. ( as i said before in my opinion as doctor and patient, i think this product delivery and use of medication would work best if larger pen to put both capsules at once or one large pill). but in reality would be better to have pre-filled pens to use quickly when on the go or experience a sudden “off”or simply need a boost as it happens to me quite often when I am traveling or speaking etc. plus it seems that it is a bit bulky to travel with if have to carry all pills separate from pen.

I am extremely curious to hear from anyone who has used or using drug currently? what you like or dislike and how is working for you?

P.s. Finally YES FINALLY the much awaited and anticipated PD women Journal : Parkinson’s Diva: Hello Possibilities is now being distributed.

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all rights reserved by maria De Leon

“A father’s tears and fears are unseen, his love is unexpressed, but his care and protection remains as a pillar of strength through out our lives.”~ Amma H. Vanniarachychy

On a day like today when we celebrate fathers everywhere I am missing mine. He left us too soon.  Yet, as I write these lines I am also certain he is standing watch over me because that’s just the kind of dad he was. Growing up I did not fully appreciate his love and kindness. We were frequently at odds but as I grew up into adulthood I realized how much he truly loved me. He like my grandfather (my other father) whom I loved dearly and miss also very much molded me into the woman that I am today. Although, they were totally different in the way they viewed the world and how they approached life – they had several things in common. The most important is their unconditional love for me. They both instilled in me the notion of always fighting for what I wanted, never giving up, and always being gracious even when defeated.

My father even on his dying bed was more concerned about my mother’s well-being and continued to pray that my illness would leave me. He was always the life of the party and was loved by all who met him. But when it came to showing love he was a man of action rather than words. I just wish I had understood him more growing up. We could have had such a wonderful relationship for many more years than we did. It was not until I got married that our relationship began to change partly due to my husband who help me see things form a different perspective than the one I was used to. Growing up he sacrificed and gave so much of himself for my benefit without saying a word even when I was angry at him his love endure.

Perhaps, he mellowed with age and got wiser I used to think but the reality is that the love was there from the beginning I was just too blind and self-absorbed to see it.  

A perfect example is when I was in third grade, I wanted to be “Adelita” which is equivalent to being crowned queen of a pageant; but this was the queen of the Mexican revolution festival, which takes place each year in November in the northern states of Mexico. In order to achieve this honor not only did you have to be popular but also raise money – of course the more well- known you were the more endorsements one would have. My family did not have much financial means compared to one of my opponents whose fathers was a wealthy business man. I had a good chance of losing. However, my father knowing that I so wanted to be the one who took the prize handed me an envelope to place in the fundraising tray at the last second before the ballots closed. To my astonishment, I was crowned ‘Adelita’- one of the biggest moments of my life. Many years when I inquired from my mother how dad had come into all that money to make me win I found out that he had withdrawn all his savings just so that I could win! That’s the kind of unconditional love my dad had for me. The days after the contest ended he spent hours along with my mom preparing the parade car.

So today, I recommend that if you still have your father living you thank him for all that he did and continues to do in your life. If you never had a good relationship perhaps is time to begin opening up the lines of communication you might just be surprised where it leads. Don’t wait until they are sick or dying to make amends-open the box of alabaster and pour it on them. If they are already struggling with an illness like PD find ways to spend time with them. After they are gone it is the stolen moments and silly memories that remain and become more precious.

I am so grateful that we had the last 20 years to enjoy one another. It is true what they say that behind every amazing woman ids a great dad. Funny thing is that the man I married has so much resemblance to the two fathers in my life. So I know that my daughter is blessed as well.

Happy Father’s day! Daughters be thankful for your fathers today.

all rights reserved by Maria De Leon MD

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“Aim at heaven and you will get ‘earth thrown in.’ Aim at earth and you will get neither.” C.S Lewis

Last few weeks, I feel like I have simply run out of steam when it comes to Parkinson’s advocacy. After, nearly 3 decades of living and breathing Parkinson’s I simply don’t feel like talking and writing about it all the time. After all like it or not it is a part of my daily life. Hour to hour minute to minute, my faithful friend never leaves my side. Parkinson’s has become my shadow, my constant companion which had begun to make me weary and feel stifled because the shadow seemed to be growing. But then I realized that shadows only grow bigger and less defined as they get closer to the light. Suddenly I felt better. I remembered why I became a doctor and why I began this advocacy journey. I wanted to be a beam of hope to those who had lost their way but in so doing I have found a greater light reflected back on me.

Today, I admonish those who like me are beginning to feel themselves disappear next to the growing shadows, to not let your fears and weariness over take you. If you retrieve now you will also depart from the light that surrounds you.  Because one cannot have shadows unless there is a bright light shining on us.

If you feel like you are losing steam like me go back to your roots and make your passion contagious once again.

First, take care of yourself and rest. You are no good to others if you can’t even take care of yourself. Exhaustion can cause us to loose perspective.

Second, start small- even the smallest act can create a ripple effect. May be just become a friend to someone else who is struggling. Start by sharing your story.

Third, be patient. Things take time. In the “confrontation between the stream and the rock, the stream always wins; not through strength but through perseverance.” ~Budda

Fourth, step up for those who can’t. I speak on behalf of my patients and those who are no longer able to participate because of their illness.

Fifth, Must have the courage to have tough conversations and expect to be uncomfortable – not everyone cares for your passion, believes changes need to be made, or has your own perspectives. Always be gracious. And start by asking why they feel the way they do? Everyone has a story and an experience so allow them to share their perspective with you. We all can learn from one another to make this world better. Start conversations in your community with people of all walks of life.

Today, I regained my strength by contemplating the work that’s been carried out thus far by me and others as they attend the Kyoto WPC in the next few days whose theme is rooted in hope. I will then live with the certainty that the things I hope for will come to pass.

@Copyright 2019

All right reserved by Maria De Leon MD

“Every great journey begins with a trip to the bathroom.” Unknown

‘Oh the places you will go!’ Never thought it would include a million trips to the bathrooms of the world. I feel like there is not much I have not seen but then again I could be wrong. Having Parkinson’s disease I never imagined would turn me into a connoisseur and more importantly a critic of bathrooms. Previously a bathroom was just a place to do your business not to linger or enjoy. Although, it always need to have some modicum of cleanliness for it to be even considered as plausible site to use. Either a bathroom was clean or not which meant it was usable or not.  A ladies powder room was not anything to fret over you went if needed the end. Now when I am out of the house I must always focus and strategize when, where and what state will I find the lavatories in and will there even be some available. I never realized that some states like Arkansas do not have bathrooms in their rest stops like they do in Texas, which means you must travel a long distance before finding a restroom never mind one that does not make you cringe.

My travel routes are now not only planned as to distance but also more importantly as to availability of bathrooms. I do not travel small roads typically because there are no easy accessible bathrooms and if you happen to find one – typically you wish you had not but sometimes duty calls and you have to just grin and bear it and hope you did not catch some disease in the process.

Although, my bladder issues are much better controlled than they were at the beginning of my illness you never know when an emergency will strike not just because of bladder but having bowel issues from PD is another reason one must always be vigilante as to location of lavatories. Over the last decade, I have developed a sense of what I like and don’t like. I now rate quality of a restaurant not only on their desserts but on their quality of powder rooms. I have had extensive experience traveling around the world and I cringe recalling some of the escapades involving outings in search of a toilet. First when traveling one must not only know the proper name of the facilities in a foreign language and sometimes deciphering a bathroom symbol can be as much a challenge as playing Pictionary with the added bonus that if you don’t solve quickly instead of losing you will soil or wet yourself. Other places around the world may require coins to open the lavatories- so you must have exact change unless there happens to be an attendant who can make change. All of this commotion only makes my bladder shut down. Then there is the issue of finding toilet paper. Some places like Mexico and Italy you have to purchase sheets of toilet paper. I simply carry some with me especially when traveling abroad.

It can be exhausting not just for person with bowel and bladder issues but also for family members whose agenda is completely disrupted each time they are traveling together. Is not only appalling having to live a life where bathrooms are the center of the universe but where every road must lead a bathroom stall?

So next time you plan a trip remember to take into account not just travel time, and mode of transportation but accessibility to powder rooms especially if you have mobility issues or need assistance because some like ones in airplane barely allow for passenger to fit much less maneuver two people when one is unable to flex. Think about what this means to your travel partners for instance added time if traveling by car, missing tours because having to step away from group to find bathroom. Consider always carrying change of clothes especially undergarments and employing depends or other absorbent materials to aid in case of accidents or no available toilets. Once in a while because of our bladder issues you might just get the royal treatment and be allowed into the pink room of the white house.

@copyright2019

all rights reserved by Maria De Leon MD

“Sex is like air; it is not important unless you are not getting any.”

John Callahan

It is a well-known fact that people with Parkinson’s suffer from sexual dysfunction for various reasons ranging from depression, fatigue, to autonomic dysfunction as well as due to frequent urinary infections. Sometimes other factors like the awkwardness that may arise due to physical impediments caused by incoordination, tremors, rigidity along with other motor & non -motor symptoms.

We also know that the issues relating to sexual function are as varied as any individual living with Parkinson’s.  However, there are several patterns of dysfunction from low libido to complete lack of desire and everything in between that can impact not only the quality of life of the person living with the disease but also alter the dynamics of any romantic relationships. Keeping in mind that mental issues such as feelings of isolation and depression also play a role in human libido particularly in women. Now imagine that women with PD are said to have more negative symptoms (I.e. depression, anxiety); thus as a whole women with PD are more likely to experience anhedonia (inability to feel pleasure). On top of this, women independent of disease, experience a natural shift in their sexual desire due to hormonal fluctuations particularly as they enter menopause. Yet, as a doctor and patient I don’t recall ever having a conversation regarding issues in the bedroom. I do recall many discussion with men with PD regarding this problem albeit it usually occurred as an afterthought.

Especially considering that most of the issues causing decrease libido have a potential treatment, why are women still feeling they got the short end of the deal when it comes to feeling sexually fulfilled?

Although, how your sex life? Is not a typical question you will likely hear your doctor ask anytime soon you can still get the desired help by asking question first. The truth is that most doctors also feel ill equipped to discuss this subject themselves particularly in female patients.

So what can you do to find solutions to your problem?

First, know that there are treatable causes for this problem and you should therefore keep a diary of your symptoms in order to better address the problem – Be aware of the issues.

Second, you should ask questions as to treatments available and brooch the subject as you would any other symptom of PD- Voice your concerns.

Third, find a doctor with whom you are comfortable discussing issues and who is also capable of assessing and treating problems. (Personally, I have found a female gynecologist to be the best equipped for this job). Don’t suffer in silence– Find treatment.

Fourth, use that new found creativity PD has conferred on you to experiment and explore new things with your partner. (I.e. new positions, techniques, etc.)

You will find that by following these steps not only will you inject new life into your sexual relationships; but you will also build stronger bonds not just with your partner but also with your physician. After all, Trust and openness is a two way street.

@copyright 2019

All rights reserved by Maria De Leon MD

“And so with the sunshine and the great burst of leaves growing on the trees, just as things grow in fast movies, I had the familiar conviction that life was beginning over again with the summer.” ~ F. Scott Fitzgerald (The Great Gatsby)

With summer a mere month away, I like to remind myself and others to protect our skin from the harmful sun rays which can lead to skin cancers.  Although for me, summer time is a season of renewal along with the promise of new adventures and endless possibilities; it is also a reminder of what unprotected skin can become. I lost my father to Merkel’s carcinoma from years of fishing at the lake without any sunblock. My grandmother and I have had several bouts of melanoma – so no matter what else you do in life always wear sunscreen.

Wearing sunscreen is not just good advice but it is a crucial tool in the scope of Parkinson’s treatments just like exercising in helping us maintain and maximize quality of life. Those of us who have Parkinson’s disease already feel the effects of the disease on our skin daily from the eczema/ atopic dermatitis (scaly, flaky, itchy patches of dry skin more commonly behind the ears, in scalp, around the nose and forehead) plaguing our faces, to the excessive sweating driving us insane, to the increased risk of melanoma (2 to 7x higher than normal population) which causes us to visit the dermatologists more frequently than we wished.. However, these pesky problems should not keep us from enjoying our summer while protecting our skin which is our first barrier of defense against disease. Therefore we must learn to care for our skin by being proactive particularly during extreme heat or cold.

If you happen to be of darker complexion like me don’t assume that you are protected and out of the water from getting melanoma especially if you are young woman with PD. In fact, according to the Journal of the American academy of Dermatology highest risk of melanoma occurs in ages 15-29 while nearly half of black and a third of Hispanic women are diagnosed with melanoma in later stages compare to less than a third of white women. Furthermore, women of color like me have presentation in soles, palms, and nail beds and other areas not directly exposed to the sun. So along with sunscreen protection you must also get routine exams (self and by a professional). Case in point, is that 2 of my melanomas were detected on self- exam while I was trying on bathing suits for the summer! These were in areas not usually exposed to the sunlight.

Despite possible worsening of eczema and hyperhidrosis (excessive sweating) with heat, pollen’s, and stress, I still look forward with anticipation to this time of year. Not only because my birthday happens to be in the summer, but also because I crave the freedom of sitting on a beach somewhere contemplating the waves, enjoying the ocean breeze while I cherish the feeling of sand between my toes.

Go ahead show your skin off this summer remembering to let go of all the stress and anxiety if even for a few moments – while you soak up some much needed vitamin D while you enjoy the ocean, a walk through a trail nestled in the trees, or have tea in your back yard.

If you go to the beach wear sunglasses and don’t forget to apply sunscreen even between your toes. Show of those toes in colorful hues but I would refrain from using shellac – it uses UV light to bake in – is like getting a tan for your nails.

Use light clothing that is breathable – fortunately many retail stores are carrying a line of protective UV light clothing. You can find some of this at Talbot’s (one of my favorite places to shop).

If you are one of those persons who have severe autonomic dysfunction due to PD or simply sweat due to Parkinson’s medication (e.g. amantadine) aside from using cooling gels or jackets there is a new medication which might allow you to enjoy your summer without feeling like you will simply melt away. We want to glow not glisten. Talk to your doctor about Qbrexa.

Go ahead and flaunt that new hat- you know you want to- this will protect your face from getting burned but also keep eczema at bay- if this is still a problem there a few treatments your dermatologist can recommend things like Elidel, Eucrisa (I prefer because not steroid based), ketoconazole shampoo and triamcinolone.

Above all have fun and hydrate, hydrate, hydrate with water and applying creams that are saturated with vitamins and oils after a long day in the sun.

Happy summer!

Source:

Douglas Deborah. (S.O.S) the Oprah magazine June 2018 9(6):109-113

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All rights reserved by Maria De Leon MD

“Blessed are those who mourn for they shall be comforted.” Matthew 5:2

As we begin this week’s celebrations on behalf of the most important person in the world to every child their mom, I want to dedicate this blog not only to all the wonderful moms around the world especially to those who despite having PD also have to raise children with chronic illnesses.

 The truth is that motherhood as wonderfully amazing as it is it never ends even when our kids are grown with their own kids.

Now that I am a mother, there so many things I understand which I did not fully comprehend as a young person. I am sure all of you know exactly what I am talking about. One of which is the pain that a mother feels when one of her own gets hurt or becomes ill. There is nothing we as moms would not do to make it all better. We would trade places in an instance with our children despite their age if it meant spearing them from pain and shielding them from any hardship. Now I fully understand my mother’s look of pain when I was diagnosed with PD.

For us who have a neurological disease like Parkinson’s is heart wrenching to see our biggest worry materialize in the form of our illness suddenly sprouting in the lives of our own children.

Besides crying and praying for mercy and sparing of our loved ones, a mother’s heart has to be stronger than ever to help bear and shoulder the burden.

When it comes to our own children, their happiness and health overrides any possible discomfort or pain we might feel as mom’s…even our own physical ailments suddenly become trivial taking a backseat to the problems of our own children. We have to somehow mustard all the energy we have to aid them in their new journeys …from denial to acceptance. We must also learn to lead by example so they too can have full meaningful lives’ despite their shortcoming.  Suddenly things like grades and attending the best schools in the country fade in comparison to the wishes we as mothers have of having and raising healthy, well -adjusted individuals capable of pursuing their own dreams. Sometimes their illnesses may be so severe that they will never have a “normal” life but they can still thrive in their own environment surrounded by your love.

Despite the feeling that sometimes we are ill equipped to handle our own illnesses much less that of our kid’s illness, we may feel at a loss, alone or abandoned. But, I am here to tell you that you are not alone and that God makes no mistakes. I assure you that He knows exactly what you and I need and what you can give that child.  He gives each and every one of us just what we need to rise to the challenge.

Remember to not let your identity become defined by your child’s illness. Just like our disease does not identify who we are. This is especially important because sometimes we can get so caught up on being a mom of a child with neurological disease  (or any other chronic illness) that we resist when they want to have their own life and spread their wings …I often think of that wonderful movie- ”The Other Sister” directed by Gary Marshall and starring Juliette Lewis. It is a movie of the mothers love and struggles and guilt for wanting to protect her child from life’s adversities because she has a disability. But is also about learning to let go and trust in the bond of love between mother and daughter (child).

Letting go can be more terrifying especially if other relationships have been sacrificed. You must set an example and continue to strive for a full life for yourself and for your kids. Encouraging them and allowing yourself to experience a full array of relationships.

Be present in their lives without hovering over them. Remember to allow yourself the roller coaster of emotions by being honest. Don’t sugar coat or trivialize your plight. It most definitely sucks to be ill and especially to be ill with a child who has a chronic disease!!!!

“Being a mother is learning about strengths you didn’t know you had.” —Linda Wooten

Just like in living with our disease and parenting – we still have to maintain schedules and discipline- at the beginning is all chaos but soon you will get into a groove and set your own schedule that works for you and your family even during exacerbations and or hospitalizations. Simply because we get sick or our kids get sick does not give us a free pass to throw all rules and discipline out the window – younger children/ toddlers/ infants need much more constancy, consistency,  and discipline

Another thing to remember is to keep your stress under control because it not only will exacerbate your symptoms but may create tension in the house hold and cause fear, and stress in those you are trying to care for causing the child to become withdrawn, isolated or introverted …don’t focus on the disease. Let them adjust on their own they will surprise you. Give them space and room to grow- always maintaining open lines of communication and be honest

It’s a fine line between being concerned, making sure they get appropriate treatments, and making sure they understand severity or implications of disease while letting them grow up with normal dreams hopes aspirations and desires. I am still learning one step forward 3 steps back.

In the end you will develop an even stronger bond and create more compassionate empathetic human beings.

@copyright 2019

All rights reserved by Maria De Leon MD