Thanksgiving in the Parkinson’s Diva world! By Maria De Leon

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Perhaps, today you find yourself in a precarious position, your health is not the best, your family is not around, or you have not been able to do the things you wanted to do? You may feel like there is not much to be thankful for especially when a chronic illness seems to be winning at times. Or how can I find joy in my present circumstances? Believe me, I understand your trepidation I have asked myself those same questions at times. And have spent holidays in the hospital or in bed at home so I get your pain and frustration. But I have found that as long as we are alive there is much to be thankful for even for the small things we often take for granted. Simply give thanks because you are alive one more day, you can talk, you can move you can breathe, you can smile, that you have friends, that you are not alone. Faith in God and hope in a better tomorrow you too can find harmony and give thanks in the midst of adversity. As the late Stephen Hawking quipped once (with his artificial computerized voice having lost his ability to speak or move at all, “however difficult life may seem, there is always something you can do. All that matters is that you don’t give up!”

As the years go by, I find 2 things to be true that we all can do something no matter what our circumstances are and that as long as we are alive there is hope. Because of this I try to be grateful even in the small things. Having a grateful heart opens us to enjoy the in life the things that truly matter. It is these things that make a life worth living and worth remembering – so this thanksgiving season, I like to express my gratitude for the small things that punctuate my life. There is nothing more wonderful to a mother’s ears than to hear a child express their gratitude for making their return home from college a warm and welcoming one. To see your children enjoy their food and exclaim can’t wait for the next day to come just so that I can eat left overs again! And before going upstairs to sleep with a kiss so gentle and loving on your forehead say ‘I love you mom’ and by the way ‘thank you for making the house so pretty for the holidays.’

Suddenly, all the tiredness and fatigue of running around wild cleaning, decorating, buying things for a special meal along with the 10 hours of drive time to retrieve from college disappear. All is well in my world with my 2 loves safe at home. A mother’s heart is never full unless her children are nearby and safe. We are all grateful that this year I am doing well and able to cook and help with the festivities making the meal extra special this year. We laugh and think about the last 2 seasons when my health was not the best and spent all day sleeping during the thanksgiving holiday forcing my husband and daughter to prepare the meal I had bought. Of course they agreed unanimously that it was one of the worst meals even though I had pre-order a cooked turkey since I knew I could not prepare a meal in my state. But we are making time up in quality singing Christmas carols (a little ahead of time just because we love the season) as we cook and drive around together always ending in laughter because I cannot sing or keep a beat. But hearing my daughter play the piano once more after several months of being away bring great joy to my heart. Even the cat who usually wonders off to sleep somewhere does not miss a beat of the conversation and looks upon our lively discussion expectantly purring from beneath the Christmas tree (his new favorite place to chill).

I am also extremely thankful and grateful to God for all the wonderful people in the Parkinson’s community I have had privilege to meet and work with this past year. I am also elated for the steps that are taking place all over the world to bring better understanding to issues of women with PD and for Hispanics all over the world, with this I can’t wait to go to Barcelona for the next World Parkinson’s Congress 2022.

Happy thanksgiving from Parkinson’s Diva – from my family to yours!!!

@copyright 2019

all rights reserved By Maria L. De Leon MD

Write Away by Maria De Leon

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“What does not kill us gives us something to write about” ~ Julie Wright

As I have journeyed with Parkinson’s over a decade, I have learned the importance of maintaining a balance in my life. This includes maintaining an emotional, spiritual and physical equilibrium.

One way that has helped me to maintain overall well-being in my life despite living with a chronic progressive disease is writing and sharing my story with others. There is power in embracing your past and present. Through various ups and downs, keeping a journal has allowed me to stay socially engaged.  This in turn has helped me remain physically and mentally active.

Maintaining a diary or journal is not only an inexpensive activity but lends itself wide open to individual expression of creativity from choosing the type of journal, pens, stickers’ and font to name a few. This is why I created the journal for women with Parkinson’s called ‘Hello Possibilities’ (can be found on line at amazon, Barnes & Noble’s) to help other women whether patients or caregivers to find a safe place to work through their feeling whether alone or in a group.

Furthermore, I have found that having difficulty writing because of tremors or dystonia should not be a reason NOT to journal. There are other ways of journaling like keeping a Mandala diary or using dictation. There are various software’s available like dragon voice recognition and dictation software even some of the smart tables have features that can help write.

I find that journaling also allows for a valuable tool to work on problem solving and gauge emotional well-being – sometimes for me the mere act of committing thoughts to pen and paper help alleviate the fears, anxieties and concerns I may be struggling with at the time. It serves to reassure me that I am still me and that I do HAVE control over my thoughts, attitudes and disease. Especially when I have difficulty sleeping, as most of us with chronic illnesses do, writing is a great way to calm the racing thoughts running through my head like a movie on fast forward.  Once, I start writing even if it’s just a couple of sentences the thoughts stop. If there are real pressing issues this allows me to start thinking of solutions. If you live alone or sleep alone you can keep a diary by your bed but if you are like me that has a bed partner I get up and find my comfortable place to write. Once my thought are down on paper I can rest better and go back to bed. But don’t activate yourself too much by turning all the lights keep a quiet cool place in a corner like I have with a soft light. I have a stained red glass lamp which provides enough light for reading and writing. The red light also provides a very tranquil mood for introspection. If you really want to get in the mood use an essential oil diffuser with a scent like frankincense or lavender to help you relax.

The other thing I have discovered and I stress in my new journal, just released, is that writing can also serve as powerful tool to recognize patterns. If you keep track of easy to quantify behaviors like sleep, depression, anxiety activity levels (apathy), cognitive changes like irritability, pain, or obsessive behaviors.

For instance, for me when I start sleeping longer than I usually do – not fatigued or depressed merely sleepy is a sign of underlying infection typically a urine infection. The sleepiness for me always comes before other symptoms of infection like chills, rigors, burning, frequency and urgency. So if other people do not notice or you don’t notice otherwise that are sleeping too much if your writing suddenly changes from daily to none or sparsely – you have a clear indication of something amiss and time to take action. But for more sinister problems like falling into depression or loneliness- the content of the writing will also change from hopeful to helpless or darker in nature which can be a huge sign of needed help. So it’s important to glance over to recognize patterns or allow your physician (or someone you trust) to have a look to be able to help and make appropriate changes. With drawing as a form of journaling it is easier to note changes in the color or designs you choose.

Ultimately, maintaining a journal puts you in the driver’s seat by allowing you to notice patterns. – it allows you like it has done me to take ownership of treatment and be proactive in your own care by calling your doctor and ultimately doing things to alter behavior and prevent snowballing into something more serious

For me seeing the words on paper is empowering perhaps it could be the same for you-whether you are a patient or a caregiver.  When I write I realize how much stronger I am because of what I have overcome – you too can realize your strengths and potential for living a full balanced life despite having PD.

Go ahead try it! You may want to start by writing your favorite verses or affirmations or a letter to God, your children or your future self.

@copyright 2019

ALL Rights Reserved by Maria De Leon MD

A Parent’s Job is Never Done! By Maria De Leon

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Parent’s are like glue even when you can’t see them or even when you don’t want them there – they will always be there holding on to their precious children no matter how grown they are or think they are.

When my daughter was a toddler, I used to read her favorite stories at bedtime. One of her favorite stories was the “Runaway Bunny” by Margaret Brown

She has always had an adventurous spirit, not unlike mine. she has always looked for any opportunity to go to new places and discover new things. I guess that’s why she is fascinated by the sea. However, she has always known that no matter how far she went or how sick I got I would be like that bunny’s mother- ever present in her life. Even now as she is spreading her wings in a new direction and flying away from home, she knows that I am never far away. she knows that I will be that tree, that cloud, that wind, that rope that she needs to feel loved and protected.

She has realized that although sometimes I look like nothing much is there as when we have gone to the movies in the middle of the night and I could not stop laughing uncontrollably forcing me to say
I swear I am not drunk” to the movie clerk who was eyeing me suspiciously. Only to have my children hide from embarrassment or even act like a total ‘air-head‘ when at the last trip after moving my nephew out of his dorm I drove the entire clan to a hotel we had no reservations. There we were 2 cars full to the brim and completely exhausted with reservations to a place I had no earthly idea where with no one to call to ask because the number and confirmation and address I written down did not matching with the place we were at. My brain was fried from traveling all day, my medicines were wearing ‘off ‘and I had a less than helpful clerk who was telling me “sorry but we don’t have you in our system and we have no rooms for the night!”

I had promised the kids we would go swimming. But now, I was not even sure where we would be spending the night. I thought about driving home but seemed so much further in the middle of the night. I was in no condition to be driving home nor all over the city for that matter looking for a hotel. Keeping the cool as best I could, I took a deep breath and took an extra dose of levodopa. Maybe my brain would work better, I thought. I then began making phone calls to various hotels in the area and even to other states because the city we were in is also in North and South Carolina and perhaps I had called them by accident while I made the reservations. I was trying to keep the calm watching the gang who was tired of sitting in the cars and were now sprawled out all over the lobby.

After what seemed an eternity, I got a call from an unknown number. Usually I don’t answer numbers I don’t recognize but was desperate. I answered not knowing who was on the other side. to my surprise I heard a worried man’s voice. “Is this Mrs. De Leon?” he said. I answered in the affirmative. Before i had chance to ask who this was he chimed in “I was getting worried about your arrival, so I thought I call you and check on you.” Salvation had come. I was overwhelmed shouting kids get up we found our lodging or rather it has found us.

I have traveled all over the world, and not once did I have anyone from a hotel call me to see if i was still coming and believed me I have missed a few planes. I knew this was God’s angel looking out for us – his children. Like the runaway bunny, I too know that no matter where I go or even try to go God will be there to show his love and his everlasting presence.

Of course, when we finally got to the new hotel, which was quite nice, we finally got to devour the graduation cupcakes which had been delivered all the way from the famous Georgetown Cupcake bakery! Sprawled all over the nice beds and sofas, everyone poked fun for what had just transpired. finishing her cupcake and milk with sleepy eyes my daughter whispered “Thanks for being always being there mom even when you are too much!”

If you are a parent with PD like me, I know that you will do anything for your kids even if you can barely move or think. Don’t ever stop showing them that your love is bigger than the Parkinson’s. If you are a child whose parent has PD make sure and thank them for caring and loving you despite the fact that at times just caring for themselves is all the energy they have.

Remember, that in the end the “runaway bunny” discovered that happiness and safety are usually found at home with the people you love most despite any physical or mental limitations they might have.

@copyright2019

all rights reserved by Maria De Leon MD

Good Communication With Your Doctor is Key

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Spoons and Adrenals

One of the most terrifying things for me is communicating with doctors. Over the years, I’ve heard enough pushback, belittling, and general unhelpfulness that I now suffer from increased anxiety whenever I need to ask the doctor a question.

Today, I emailed two of my daughter’s doctors, and I’m still a mess.

I’ve been through a number of medical professionals over the last few years, for myself, my husband, and our daughter, and not every communication has been productive.

Sometimes, it’s a clear sign that the particular doctor isn’t a good fit for our needs. Sometimes it’s a sign that my medical PTSD is taking hold of how I communicate, and I need to take a step back.

For me, I find a lot of the anxiety comes out in the form of arguing and rapid speech. I’m getting better about clear and professional communication, even now when diagnoses hang…

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Act with Courage! By Maria De Leon

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When things go wrong, as they sometimes will,

When the road you’re trudging seems all uphill,

When the funds are low and the debts are high,

And you want to smile, but you have to sigh,

When care is pressing you down a bit-

Rest if you must, but don’t you quit. ~ John Greenleaf Whittier

 

Hello my dear friends, on this beautiful Sunday afternoon I like to remind everyone who is reading this missive to “not lose heart!”  I know very well what it feels like to be in the trenches fighting day in and day out without seemingly moving an inch forward. I know the fatigue and frustration that accompanies the endless parade of doctor visits and having to take gobs of medications just to be able to brush our hair, put on our clothes or get out of bed much less having to face life with all of its challenges when all we feel like doing is curling up in bed and never coming out. I say again to you my friend: “Don’t lose heart!” and have COURAGE (from the French word coeur which means ‘heart’).  Believe me it takes courage to do more than we feel or to change our habits when staying as we are where we are feels more comfortable.

Every day I wake up I have to summon inner strength to tend to my family’s needs when at times I am hardly able to tend to my own. The other week I had to take my daughter to orientation for college, feeling at times that my strength and my legs would not hold me after walking miles across the huge campus all I had to do was look upon the face of my beautiful daughter full of enthusiasm and apprehension for the journey ahead. My pain, and discomfort could not stand in the way of me being a supportive parent. As I walked across campus trying to infuse courage to my daughter I recalled the words of  H.G Wells who once wrote “what on earth would man do with himself if something did not stand on his way?’ I told my daughter that it is the way of life to do battle, to fight for what we want, and to face challenges with head held high. I reminded her as well as myself that adversity can be our friend although it may not feel like such at the time we are going through problems like dealing with health issues. But, it is these challenges and obstacles which teaches us our strengths and weaknesses. These are the moments that shape our life and determine our character. The greatest people in history were those who faced the most difficult roads with courage and rose to the task.

So if you feel like you are on a slippery downwards slope – don’t let fear let you lose perspective. Gather your support team around you and refuel energy and get courage once more to stand up one more day- after all there are new treatments, medications, and life around the corner- and as a famous poem says ‘Rest, if you must, but don’t you quit!

Believe you me, after week of traveling – I needed much rest!

@copyright 2019

all rights reserved By Maria De Leon MD

Life goes on despite PD- #WeGo Health Awards Nominee

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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.

available on amazon, Barnes and nobles and https://thewordverve.com/shop/parkinsons-journal/

@copyright2019

all rights reserved by maria De Leon

Ode to my father: By Maria De Leon

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“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

@copyright2019

Tips on How to Keep the Passion in Advocacy Alive: By Maria De Leon

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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