Tag Archives: living well with pd

Parkinson’s Diva Secret to Stress Free Living During Pandemic: By M. De Leon

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“Rain drops keep fallin’ on my head…but i am free nothin’ is worrying me…” ~B.J. Thomas

So here we umpteenth day of self-imposed quarantine, around the world the war on covid-19 virus rages on each time the danger getting closer and closer to home. For me, like many of my colleagues who are in the front line the threat is more imminent since my spouse is one of those physicians. Although, we are not in a hot spot just in the last 3 days we have seen several cases triple with 2 deaths in the last 24 hours and for a small town that is huge. Nevertheless, we cannot live in fear and we must go on with our lives as best we can try to survive until the end of this epidemic.

Although, our world will never be same since so many families around the world have been afflicted and overcome with grief, sickness, and loss of jobs nothing lasts forever and this too shall pass. As the Bible says there is a season for everything under the sun. I, being the eternal optimist, choose to focus on the positive things of this situation which undeniably maybe a lot easier for me to do than for some. Nevertheless, I want all of you to try to find something positive in the life you are living now.

I guess that for me being in isolation or being forced to stay home and not being able to run errands, go shopping, meet with friends, travel, or go to the movies at will has become a way of life since Parkinson’s and lupus came to live with me. Yet, I can say that my life although different and challenging at times has not been any less fulfilling or exciting; for you see I have had plenty of time to reinvent my life. Those of you who live with a chronic illness have done the same. We are pros at this staying home and getting things done even when we are physically unable to do for ourselves. So, the notion of being forced to stay indoors or home bound should not frighten anyone of us!

 what can I do to stay calm and relaxed?

Yes, is true that we as chronically ill people are more predisposed to getting infections and complications but trust me I challenge anyone to tell me they have a more compromised immune system than me – except for a hand full of people I know not many others can claim this. Besides having 3 long term systemic immunological and neurological illnesses, I have had several cancers so a slight side way look from any bug puts me down for months at a time – I don’t want to imagine what a nasty corona  virus (although love the name). But on the plus side, for those of us who have lupus already take the medicine that might contribute to having less severe symptoms and many of us with PD take amantadine (Symmetrel). Although, not a drug that has been looked at during this epidemic- it was this drug that helped people a century ago during the Spanish Flu to recover.

Okay, so we have the stamina to endure long isolation, we potentially have the right medicines to help decrease symptoms- what else do we worry about boredom? Anxiety? Sedentary lifestyle, Lack of sleep? Not seeing friends or family, not seeing doctors?

Activities to help with PD and maintaining mental well being

First, no one should ever get bored especially today in the age of technology. I am personally cherishing the quietness of it all allowing me to reminisce of the times of my childhood and youth growing up in a small sleepy town on the other side of the border. I had long ago made a comment that we needed to reincorporate siesta time. Not necessarily for sleep but rather for a time of tranquility, rest and relaxation all of which is needed for our brain, body and mind to function better. Not having much to do in my formative years in the way of  watching TV, talking to friends on phone, we would spend time socializing with other family members, playing games, reading, telling stories learning new things from previous generations like baking ( i even baked a pineapple pie the other night) or making paper mache flowers or making pinatas. Time was spent and lessons and skills learned in a fun way.

Now, that I have the pleasure of having 3 generations reunited under one roof, I use these same techniques as my grandparents did with me. We talk a lot more around meals, we prepare meals together, we play games, and watch shows together and yes, we take a siesta in the afternoon when everyone does there own thing for a while in a quiet cool (preferably dark) room. Unlike, in my childhood when there was no central air or ceiling fans – laying down in the coolest usually darkest room of the house was a necessity. We don’t in the USA have to worry about being too hot or too cold for the most part. We don’t have to worry about the gas tank going out in the middle of a meal and have to struggle to replace just to finish cooking, nor have to collect water daily just to make it through the afternoon and always shower with the coldest iciest water in the world- I would literally get pneumonia now if I had to do this.

Yes, we still hunt for toilet paper but at least is all white and the majority is soft not like sandpaper of my youth. No change has occurred in my fight these days with the virus so reminiscent of my childhood when I was sent to fetch a quart of milk at the supermarket and get a peso each of eggs, tortillas, meat and sodas with no ice just for lunch. So although at present many grocery store are imposing limits on quantity of  certain items like toilet paper, meats and water bottles one can purchased we are soon to go back to old ways when this is over but our friends and loved ones around the world this is a way of life for them. So, we should not be too haste to get mad or pass judgement because even when it’s difficult is worse in other part s of the world. Think on this and be grateful. Trust me, I am as spoil as the next person. I love my Dasani water which I keep by my side especially when on the road. However, I am now making a more concerted effort to drink more from the faucet which only requires a trip to the kitchen.

Due to my husband’s occupation, there is a slightly more worry about the virus coming into our home. But we can’t stop living because of the present circumstances. If we can’t change our conditions, we must change our attitude and if we don’t like looking down where we are look up to the heavens instead.  Heaven is where our aid will come to rescue us from our pain and all that ails us. But if fear suddenly apprehends you don’t be afraid to talk to God, He is closer than you think. Believe me he wants us to tell him the good and the bad. After all, He already knows ALL. He, like a parent, want for His children to confide in Him and ask for help.

In conclusion…

As the number of people affected by virus continue to rise, my family and I are enjoying more quality time, learning new things, sharing with our friends via social media platforms like zoom, Facebook, and Skype. We are playing games all sorts which triggers much harmony and laughter which is another great way to boost our immune systems. Eating healthier 3 wholesome meals a day also helps us stay healthier. and thanks to technology we are more connected to our specialist- all good things. But don’t forget to get dressed and showered daily. wear your favorite lounge clothes or comfy clothes and do change in am and for bed. use time to do things always wanted or needed to do like read novel or tackle closet- I cleaned mine out- yay! doing these activities not only keeps us busy but also gives us a sense of accomplishment and purpose. Plus having goals allows us to keep track of time.

@copyright 2020

all rights reserved by Maria De Leon MD ( Parkinson’s Diva)

Developing a New Vision for the New Year!By Maria De Leon

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“Where there is no vision people will perish.” Proverbs 29:18

This year as I renew my strength and hope in God, I ponder on all the good and bad things that happened last year. Despite the losses and tribulations. I am grateful for all the lessons learned, new friends and adventures had along the way.
After a few months of down time following a string of doctors’ visits, myriad of new tests along with new lupus (SLE) diagnosis to compliment my Parkinson’s (which was beginning to feel lonely), it is time to start a new chapter in my life. As all the pages of the New Year remain blank, I think about developing a new vision that will provide me with endless stories, adventures, trials and triumphs that will comprise a new chapter. This process will be one more stepping stone in achieving a new dream. As I sit quietly contemplating of what my direction should be next waiting on God to lead the way I think about the importance of having a dream for all us especially for those of us who live with chronic illnesses in our lives.
The life lessons involved in making a dream or goal come true are the same lessons we must learn as patients.
When we develop a vision the same tests required to bring that dream into fruition are the same steps required to overcome living with a chronic illness. If you can find a dream and make it come true you can essentially do anything!
But first one must have a dream in order to make it come true.
Once my dream was to become a neurologist. Having achieved that dream has giving me the strength to keep fighting in the midst of many physical and emotional new obstacles. I discovered that a vision is what gives us direction, creativity and resilience.
Without it we run the risk of becoming passive, aimless, and vulnerable to giving up.
Thus, it is important for all of us to have a vision. Is not always clear what our goal should be what our next step should be or what direction to take. It took me a couple of years after my Parkinson’s diagnosis to find a clear new purpose in my life- keep advocating for my patients and all PD around the globe.
Before I could do this like now, I must first wait to have a new goal (vision). This requires patience, discipline and above all the ability to overcome challenges (for us this means often times overcoming physical and emotional limitations).
Is not easy to go after a vision.
I am sure there is something you worked hard to get. Remember the thrill of achievement and accomplishment? I believe you can do it again if you just set your mind to it.
Now as we stand on the horizon of a new unexplored chore, we need to be mindful of passing the following 4 tests that will help us overcome any obstacles this illness or any other curve life could throw our way.
1. Faith Test …we must be strong and believe in a better tomorrow even when everyone around us says there is no way you can make it. I am testament of being relentlessness …even when all the doctors prognosis have been grim I am still standing here by grace of God and still BELIEVE in a cure.
2. Patience Test …I have learned that in life like in science nothing happens overnight. We must learn to wait on God’s time not our own. Yet, having said this many great strides in neurology have been made in the right direction to making peoples life’s better.
3. Strength Test…Sometimes we may find ourselves discouraged alone frightened devoid of family and friends with no support group. We have all felt this way at one point or another. This is the time to remain strong in your convictions. Think about how much you have overcome and how far you have traveled. You can certainly do it again if you don’t give room to negative thought. My motto and yours should be-This too shall pass. I have been through many difficult times which I did not think I could or would survive. Surely, I cried but I did not die. Once the tears stopped the sun came out again and I learned to be happy once more. I have learned that even when one dream died there are many more inside of me and that my life has so many facets, it is much more than any one dream or any one illness I might have.
4. Focus Test…We can easily be derailed and deterred if we focus inward on us instead of outwards towards helping others. If we concentrate on helping others and keep moving forward even at a crawls pace we can climb a mountain. It all begins with a single positive thought- “I can & I will”

So today, I am encouraging everyone to follow these steps. In the meantime keep your spirit up and your gifts and talents sharpened so when the times comes to reach your vision you will not be defined by any illness.

Happy New Year to all my friends, families and followers!

@copyright2019
All rights reserved By Maria L. De Leon

Rhapsody of a Diva: By Maria De Leon

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“We are the champions of the world. We will keep on fighting till the end…” (Queen)

Over the last few weeks, as I have tried to make sense of my life in light of my seemingly endless medical problem list; I have had plenty of time for introspection as I lingered around the house in my pajamas watching movies when not in pain, nauseated, or having fever and chills. My favorite movie genre as of late are those based on real life. In my moments of feeling better and not having to see a doctor or get yet another test done to figure the conundrum that is my illness, it occurred to me that in life the most beautiful things usually come out of the darkest and most painful times our life’s.

Throughout history we are reminded time and time again that the things that inspire and endure the test of time are those that arise from the ashes of near annihilation.

I love the story of the thorn bird legend, although believed to be purely mythical, is the perfect embodiment of a notion that greatness can only be achieved by walking through fire or standing in the lion’s den. The Celtic legend, upon which the story is supposedly based on, says that there lives a “bird that sings more sweetly than any other on earth as he dies that even God in heaven stands still and smiles.” While dying he rises above the agony of his pain caused by being impaled on the sharpest thorn. Such examples of greatness can only emerge out of the fiery ashes. The outcome of such struggles of the soul, if we are courageous enough to stand and fight, typically bring forth redemption, self-love, understanding, and compassion which permeates throughout in the same fashion in which the light casts its warmth upon a dark cold room when the window is open to let sunshine in. A small light can illuminate even the darkest of rooms but a dark room can never overpower even the faintest of lights. So keep on fighting even if you feel like you don’t have the stamina to go on….
The greatest feats and gifts to mankind have been borne out of despair, hopelessness, uncertainty and loneliness.

Beethoven composed his 9th symphony “Ode to Joy” when he was totally deaf. Van Gogh painted “Starry Night” in the midst of a mental asylum cell, the apostle Paul wrote his most powerful letters while imprisoned and our salvation was bought at the ultimate price of pain and agony on a rugged cross.
What will my legacy be to this world and my children be? I wonder. Will my life be an example of courage and triumph? What will yours be? Will you wallow in your pain and stay a victim? or will you like many before us have the courage to conquer and not be defeated by our present circumstances?
As for me: through the grace of God I have discovered courage in the midst of my never-ending battles with physical illness along with a renewed sense of purpose and hope.
So I sing to myself… “What a wonderful world!”
Will you sing too with a new sense of purpose?

I love to hear your stories …would you share with me and others so we can all gain courage and strength by knowing we have been able to overcome thus far.

Many Blessings to all on this beautiful day.
Love,
Parkinsonsdiva

@copyright2018
All rights reserved by Maria de Leon

4 Easy Ways to de- stress and Improve your Well-being while living with a chronic illness like PD: by Maria De Leon

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For those of us who live with a chronic illness like PD by now I am sure you have discovered as I have that stress whether physical, emotional, or physiological can have a detrimental effect on our mood and on our symptoms. It is for this reason that many people with PD feel as if they have fluctuating symptoms on a daily basis despite the fact that Parkinson’s is a slowly progressive neurodegenerative disease.
Learning to deal with stress and finding ways to prevent it in a healthy fun way can lead us to a happier more balanced life. Subsequently, by managing our stress we may be able to experience less ups and downs with our already complicated illness.

The first thing we can do to improve our tension levels is listening to music – but not just any music. A specific type of music like baroque which is characterized for the most part by 60 beat per minute tempo also known as ‘larghetto’ not too fast and not too slow – in fact just right.
This coincides with the rhythm of our hearts at a calm state because in fact some scientists believe that a heart rate of 75 and greater, which was considered within normal range in the past, carries a higher risk of having a heart attack.
Not only will this tempo relax us by calming and synchronizing our breathing with our heart rhythm but will also improve blood flow to our brains. Subsequently, this may be one of the reasons listening to this type of music increases our concentration. As we all know, poor concentration is a big issue in those of us with Parkinson’s – part of it could be that we are so run down we don’t even process the information around us. But being totally stressed can also play a major role. Multiple studies have shown that music with 60 beat per minute causes an immediate sense of well-being and even boosts our IQ levels. This was seen on subjects tested while listening to baroque music. Moreover, when we feel relaxed, we are more prone to have a positive outlook. A positive outlook on life is everything, I always say. When we have a bright outlook makes more likely to consider all the alternatives giving us more sound judgement avoiding rush decisions. I know personally when I am tired or in pain, I don’t want to be bothered with details or complex decisions. Sometimes when I find myself in these situation, I tend to rush to an answer without considering consequences fully leading to more problems down the road. I have learned not to make any important decisions including filling out paper work which is vital. However, if baroque music is not your cup of tea then find music that appeals to you but with similar tempo.music notes

Secondly, laughter is a great stress reliever. We have all heard that laughter is the best medicine. Not only does laughter strengthen our immune system but is a great coping mechanism to relieve pressure. I often say that I laugh because it beats the alternative. Because laughter plays such a crucial role in healing, many scientists have looked at laughter to assess its benefits and effects on tension. Interestingly, laughter decreases stress differently in men and women confirming once again that gender is a crucial topic we must take into account when prescribing treatments for various illnesses. In men laughing actually decreases the stress directly by dissipating the distress. However, this does not occur in women, rather by laughing we women gain insight into a situation which then helps us cope better with the stressful factors. Despite differing mechanisms, the end result is the same – we both feel better with a good laugh. Go ahead find some friends and laugh or simply learn to laugh at your own mishaps as I have. You will feel better, I guarantee.

Thirdly, painting– I have never been much of an artist. However, even though I still am far from considering myself as any good at painting I have discovered that you don’t have to be good at something to derive pleasure from it. You don’t even have to paint your own art work rather simply fill in the colors of someone else drawing to feel the benefits. I think that this is why coloring has become so popular. We remember the pleasure coloring as children, well as an adult I have regained that same sense of accomplishment when coloring a drawing turning into my own masterpiece. Art therapy in all is forms is something I have fully embraced over the last decade as a useful alternative therapy to dealing with neurological diseases for many reasons. One of which is a sense of empowerment one achieves through the use of colors, and creativity. Moreover, painting and other art therapy can not only provide a momentary distraction; but it also relaxes the mind when you set everything else aside and focus on the task at hand. Besides being fun, it is a great coping mechanism through which emotions can be effectively worked out releasing anger, anguish, and frustration with a few strokes.kandinsky21

Fourthly, enjoy nature / green – when I was a young girl living in Mexico, my grandmother always used to say to my grandfather that she needed to go out to the woods to look at the trees and the greenery around. She would get so excited every time she saw how green everything was. Well, it turns out my grandmother was wiser than most. Subconsciously, she knew that seeing green or being surrounded by nature provides an excellent calming effect on the brain and body. Since green is a color reminiscent of nature, spring, growth, peace, and financial prosperity is believed to diffuse anxiety and have a calming effect by producing a harmonious sense of well-being. Being surrounded by green forests, trees also improves concentration and clarity increasing creativity by actually improving our brain waves. Improves reading ability …perhaps that’s why I and many feel so alive in spring when everything is blooming. I guess, I inherited my grandmother’s intuition because my writing room is green (pale yellow greens and beige greens are the most soothing). In 2010, a study in Environmental Health and Preventive Medicine found that a stroll in the woods versus the same time spent strolling in the city had a greater impact of decreasing stress hormones like cortisol and lowering blood pressure. This simple fact, maybe why I like Central Park strolls or near parks in the city and in the woods like my grandmother. nestledown

Go ahead start decluttering your life and getting rid of unwanted tensions and preventing worsening of symptoms due to stress by using one of these simple methods of relieving tension in your life. I have celebrated a huge milestone in my life this last week for which I am forever grateful to my God. As such, what better way to be reminded of His grace in my life than to feel His presence admiring the beauty of creation surrounded by thousands of giant sequoia trees.
These threes have not only stood the test of time but weathered many storms losing a branch here or there but never lose its hope it will stand for another 100 years.

Sources:

Stress relief from laughter- it’s no joke. Mayo clinic
psychological effects of forest walking in healthy adults

@copyright 2018
All rights reserved by Maria De Leon

Bridges & Scenic Roads: by Maria De León

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“Nothing comes ahead of its time and nothing ever happens that did not need to happen.” Byron Katie

As I sit here fighting another bout of bronchitis, yet again; I am inclined to feel a bit sorry for myself. But, all I have to do is stop and look at all the road I have covered over the last year to quickly shake this silly notion.

I have never been a very patient person especially when traveling. I like to zoom, zoom. I am a highway kind of girl. I remember the first time my husband and I took a trip toghter as newly weds to visit his family, he thought it would be nice to take the Natchez Trace Parkway. I nearly lost it; it seemed we had travelled for an eternity at a turtles crawl (can’t travel faster than 45mph). Had I been driving, I would have probably gotten several citations or found a way to get off faster than immediately.Image result for beautiful architectural wooden bridges

At the time, I was not interested in the beautiful sights we encountered along the way nor in the fauna present. I simply wanted to arrive at our destination. This was the state of my life at that time-pretty much rush, rush between work, family, commitments, conferences, etc.. I was always looking ahead at the next destination never really enjoying the moment for the most part until Parkinson’s decided to pay me a visit and make its self at home. Suddenly,  the breaks came screeching on putting a stop to all my senseless running around.Image result for beautiful architectural bridges of the world

Over the last decade, I  have had to learn to enjoy those backroads and not be so concerned about the destination. We all know that living with a chronic illness like PD  permeates into all aspects of our lives affecting everyone which comes into close proximity. thus, more than ever we have to learn to find a balance and enjoy each moment as it comes and not be paralyzed or fearful of what might happen next. Living with PD is truly unpredictable day to day and even hour by hour. Friday was another perfect example of this. I woke up feeling great attended a GO Red luncheon for women with my friend. We had a blast but by the  time I got home in the afternoon, I was out of commission screwing up all the evening and weekend plans.

Instead of worrying about reaching some obscure destination, or fretting over the plans that have been ruined (these days I prefer calling it altered rather than ruined). I have come to enjoy those unexpected detours along the way which may lead to unexpected finds like an old wooden bridge or a beautiful waterfall. These sometimes brief other times extended detours through backroads and scenic routes has helped me discover myself, my true friends, my family and many other people who suffer chronic illnesses which I might have not gotten to know otherwise. This weekend I got to enjoy the company of my daughter and husband although from a distance since I did not want to contaminate them.Image result for beautiful architectural bridges of the world

When I find myself feeling restless and impatient like today, I remind myself that those  eternally winding back roads are helping me build a bridge to my ultimate destination. As we know some bridges are short and some are much longer. Image result for beautiful architectural bridges of the world

Those bridges took years to build some even had to be rebuilt.  Meantime, i keep moving forward even if I feel it’s only one step a day. Someday my bridge will be completed and it will be a grand architectural monument just like those magnificent bridges, I love (e.g. Sydney Harbor Bridge, the London Bridge, and the Golden Gate Bridge to name a few).  My life like those grand architectural structures will stand as a testament of a victorious life which conquered adversity and overcame big odds to bring beauty and function to others.

Thanks to my illness, as my favorite poet Frost once penned, I have taken the road less travelled and this has made all the difference…

I hope today wherever you may find yourself, you find the strength and courage to enjoy those unexpected detours in life and beginning anew building those magnificent bridges.

@copyright 2018

all rights reserved by Maria De León

Do it with passion or not at all: By Maria De Leon

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“It takes a glacier about a year to move, but eventually it carves out canyons.” Perseve(red)

Since the time of Ancient Greece, a life full of passion was one worth living well. Whether or not the ancients had eulogies at funeral is unclear. However a man’s life might still have been measured on what drove him- the amount of  passion or ‘pathos’ he possessed – that which made him go all in. In other words, what is it that makes us fearless in pursuit of what sets our souls on fire? For me, I have 3 passions God, my family and Neurology in particular working with those who live with Parkinson’s in their lives.yo y mi libro diva

In the last few weeks my love for PD has been fueled as I have traveled north to drop off my niece at college.  I got the opportunity to meet various Parkinson’s advocates like Chris and John from Philadelphia who graciously opened their hearts and their homes to me and my family for an enchanting evening of conversation and entertainment. I also had the great pleasure of meeting two wonderful people Kate and Chris part of a great social media medical community of Health Union who not only have shared their passions with me but granted me an opportunity to continue my passion for writing about the things I love while helping the PD and migraine communities. Plus, I am super excited that my Spanish book on “living beyond PD” (Viviendo más allá del Parkinson) will finally be making its debut in the next 4 weeks. Plus, I am always completely at awe and stoked to be able to come to you in this humble way to share my life with you so as to provide a ray of hope and sunshine because no matter how strong we are we all need to be loved and cared for. We need each other because we all have days when all the digging and struggling only makes us more muddled.me chris and stephanie

However, as I have fallen many times flat on my face and risen again to fight another day, I have confirmed once again that having and living with a chronic illness like PD does not have to decrease our interest for living, succeeding and dreaming. Life is what you make of it -weather we live with an illness or not have Parkinson’s or something else we all have struggles, hardships, and traumatic events which can propel us forward to a better tomorrow or crush us if we let it.  I have been given the opportunity to travel to South Dakota to do a weekend retreat at an abbey for those who care for someone with Parkinson’s as well as for PD patients which will include exercise classes, and educational classes to teach other the skills of living well beyond their own limitations brought on by the disease.me john chris

Please don’t let the shock and pain you are experiencing g today make you numb for the rest of your life. Even if you got nothing left, find your purpose maybe start by reaching out to your neighbor or friend who has less than you. The storm brings forth character, integrity, honesty especially when comfort is removed. The first step in sorting g over or getting back up is up to us. So, don’t wait for others to rescue you first, rather make your first step in improving your situation and others will join in to help. Remember none of us can do it all alone or know it all. But everyone knows something, can contribute something to our lives. So go ahead and start small. Who care how it looks? Ask for help when needed. When I first began this journey I could not even walk had to use a walker then a cane. I needed help to do most activities including dressing myself. This is not a race or a competition but it is about being empowered and finding yourself  as you push through the darkness into the light as you find your purpose, your own passion that will make you defy all the odds and come out victorious. But the driving force can’t be just anything – it has got to be BIG enough, strong enough and powerful enough to propel you forward.

What drives you today to keep moving? Do you have the passion to go all in and fight as if your life depended on it because it does?

sources:

Be Inspi(red): words of Hope and courage 2007 by Hallmark Licensing Inc.

@Copy right  2017; all rights reserved Maria De Leon