Maintaining our cool in the midst of chaos. By Maria De Leon

Comments 2 Standard

” In the midst of chaos, keep stillness inside of you.” ~Deepak Chopra

Many of you are wondering how to remain calm when things all around us seem to be flying out of control. Perhaps many, like me, had just begun to settle into a routine with your illness, family, job, responsibilities then suddenly boom everything has turned upside down. Well first of all, in life the only thing that is constant is change and things we dread tend to never happen but are the unexpected that often blindside us. Funny, one of my favorite words is entropy. According to the second law of thermodynamics with time all things tend to go into disorder and chaos unless you exert energy to keep order and oh boy, are we feeling the stress of trying to maintain some semblance of order in our lives in the middle of this world-wide pandemic.

For some reason, even as a child, I have always thrived in the midst of chaos, this may explain my deep love for storms. Perhaps this is the reason why the seasons in my life which have been stormy have thought me much more about God, myself, and life. It was during the dark times that I have experienced more self growth than during any of the calm seasons of my life. Sometimes, when there are no challenges, we tend to become complacent. Over the years, I have learned to look beyond the present circumstances to find a purpose in the long run. This is exactly what we must do now. We cannot let ourselves be swept away by the fears of the unknown. We must live a full life in the here and now Parkinson’s, Covid -19 and all.

How do we do this you might ask?

Trust me is not easy at all. Living with Parkinson’s with all the low’s and high’s requires stamina. After all, this a marathon not a sprint.

A few weeks ago, I was looking pretty happy because for the first time since my PD diagnosis, I was able to rest to my hearts content because there were no demands to be placed on me by anyone. I was complete master of my own life – what, when, where and how to do things. This was a nice feeling but, I realized I could not go the rest of my life not being responsible for anyone or to any one when I am part of a family and a larger community. All of us need a purpose to get up and fight for each day mine besides God and my family is my love for the Parkinson’s community.

Now, thanks to the corona virus, I have a house full of people again and there is little rest to be had. Yet; I am thrilled to have the opportunity to spend extra time with the most important people in my life-my family and a new purpose to help other Parkinson’s people around the world who are struggling to better deal with the present circumstances.

So what does this all have to do with surviving an epidemic while living with a chronic illness you might ask?

Just like athletes preparing to run the race or a pianist preparing for a concert we have too have to keep our skills sharpened to become effective at what we do. We must make a mental effort each day to not fall into the chaos but put our energy to doing things that will bring us peace, joy, balance and well being. Only then will we be able to make better choices for ourselves. In order for us to thrive where we are, we must begin by prioritizing things that are important to our well being like spending time with love ones if there near or calling them each day if they are far. Focus on getting the medications needed for at least 2-3 months to avoid a physical decline for lack of treatment. Still consult your medical staff when there are problems or questions- don’t suffer in silence if there is a problem. You are not alone. There are many resource centers that could provide help. Try to eating well. although, it may be hard to get out to purchase groceries, or there are some shortages in the area that you live in things have not stopped being produced just taking a bit longer to stock up. You can use an app to have food delivered to your car or place of residence. However, I must caution from using delivery people that offer themselves to help if you don’t know them. Rather, ask someone you trust to help. there is no reason not to sleep well other than having to many people at home. Since there are not many activities that require going out, you are free to sleep at least 8 hours a day. This should really improve your mood, boost your immune system, decrease pain and improve cognition.

It all about the choices that we make – do we panic or do we take the bull by its horns. But prayer is where we get our strength to overcome the tough times.

Begin with soul care- let go of things from the past that are holding you back. I like to think of PD and other life traumas like a balloon which hold on tight even though we say it does not bother us but every time you turn around you are swatting it away because it keeps coming around to obstruct the view. But if we simply release the balloon in the air we would be free of that constant pest in our way. the same way we must do with the fear of getting the virus. Until we let go, the constant concern will turn us into victims rather than conquerors.

Use this time of hardship to sift the good from the bad in your life make you better at identifying counterfeits from real things that satisfy and fulfill. Use this time also to focus on what your legacy will be .. you might never get another opportunity like this.

Share your knowledge, your story, your insights with others who are facing what you have overcome and become a mentor. Improvise hold conversations or meetings over the the phone, skype, face time, zoom etc.

Remember just because things may look ugly, and bare now does not mean it can’t turn into something something fruitful and lush in the future; just like the Butchard Gardens in Victoria, Canada were transformed from an old dried out quarry to its present magnificent state by a single person woman with a vision.

So after this epidemic has passed if you take care of your soul first and prioritize the important things in your life – you too will be bright like a star in the sky and leave behind a legacy as grand as this park.


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

Surviving Coronavirus Outbreak with PD: By Maria De Leon

Comments 3 Standard

Okay, I like the rest of the world has been glued to the news watching as the virus has continued to spread and wondering when this will all end. Although, I am a tad bit worried about myself, family, friends, and loved ones many of whom are in hot spot areas of disease outbreak working in the medical field I am confident that God is mighty and will see us all through this.  I also realize that I like all of us who live a chronic illness such as PD are at a higher risk particularly if older in age (> 70), have diabetes, high blood pressure (heart disease), respiratory illnesses (lung disease) present an even higher risk. This does not mean however that you will get sick.

First, we are all in this together. You are not alone in the fear of the unknown. I am on a chemo medicine, have a horrible immune system and have 2 risks of the four I just mentioned. But, being a doctor and being married to one not only puts the disease closer to home but also reminds me of my training not to panic in the face of a crisis. We must remain calm, stay informed and take necessary precautions to reduce the risk of infection and going berserk being isolated or home bound.  

So, what to do?

Scream if you must and let it all out then focus on staying well.

This means stock up on supplies – enough with the t.p…

We need medications to have enough medications first of all.

  • Ask your doctor to write a larger prescription for at least a month. They can do this by increasing either the dose or the times taken if insurance will not cover another month supply. Pharmacies can also help by providing an extra amount for necessary drugs like insulin, diabetic medicines, inhalers and heart and blood pressure medicines.
  • Of course, we all need our PD medications – crucial ones are the levodopa compounds to have extra on hand because these are the ones that could cause a life threatening condition if suddenly discontinued especially if been on them for a long time over 3 months. Ask your physicians if have any samples, ask the assistance programs if have extra samples or ways to obtain medications. If your pharmacy delivers, ask them to do so or get mail order.

Doctor visits:

  • If non-essential visits – cancel and reschedule for future time.
  • Ask if can be seen via telemedicine, skype etc.
  • If must travel to see doctor to endemic areas reconsider and do above- if sick or need to visit, ask if can see other doctors not in high risk areas. I will be avoiding Houston medical center for a while. However, I will talk with my doctors via email etc. to make sure I have enough medications.
  • If have symptoms of coronavirus – fever, cough, sore throat, congestion, *breathing problems (shortness of breath), diarrhea, *persistent pain or pressure in the chest, *new confusion or inability to arouse, *bluish lips or face (means lack of oxygen) call doctor or go to ER IMMEDIATELY. (* these symptoms unfortunately can occur in the context of PD as well but even in the absence of a virus these are still emergency symptoms that require prompt medical attention).

Have a plan if you get sick:

  • Even before you are sick- if are widowed, single, elderly, live alone- move with a friend, neighbor, relative. (because my mother is a widow and is at higher risk plus lives closer to endemic area, she will now be staying with me.)
  • If not an option to have a caregiver – stay in touch by phone, email, social media with others but also with someone nearby that can provide quick assistance in case of an emergency. Staying connected will also help diminish anxiety, depression and isolation.
  • Determine before hand who is the best person to care for you should you become ill.

Family and caregiver supporter:

  • Take care of yourself to avoid getting infected- wear gloves, mask, use only disposable utensils and paper plates. Do not share drinks, food, disinfect any area touched by sick person and isolate that person to his or her own space if possible and his or her own bathroom. Although it feels terribly lonely, this is only way to spread contamination among members of family if more than one or two people in household. I have first-hand experience of this when I received radiation for my thyroid cancer. This means that person infected unless demented, incapacitated, disabled or bed bound can take his or her own medications which should be kept near patient. And food should be placed at door of room near sick patient. (I never thought that I would have to revisit that experience in my life). When I came home with radiation, I could not touch anyone, prepare food, use anyone’s dishes, same bed or commode. Anything that I wore or touched went immediately into a trash bag and sealed away from everyone. This is the type of drastic measures we must take in order to ensure our protection and best safety through this time of crises.
  • If sick person is bed-bound or demented ensure that you know your loved ones medication regimen and have necessary equipment at hand such as oxygen tanks etc. keeping in mind that these may have to be discarded once illness recedes to avoid contagion.

Remember you are strong, and you got this- if like to share any comments or questions feel free to do so – I am hear and I am listening …. I will continue to bring more info in the next few weeks like things to do at home to stay mentally, socially, and physically active.

@copyright 2020

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

Diva Tips to Cut Down Meal Prep Time: By M. De Leon

Leave a comment Standard

Cooking is like love . It should be entered with abandon or not at all. ~Harriet Van Horne

I am sure all of you have agonized at one time or another about meal preparation when you find yourselves in a depressed, apathetic, sleepy, shaky, and dystonic state as I often have.

As all of you know one of the hardest things to do as an adult is thinking up meals and spending time preparing them in a timely and nutritious fashion. The pressure is greater when it is our job to feed an entire family especially when there are children depending on us. I must admit, I am the least enthusiastic about meal preparation than any other house chore.  I am the sort of person that enjoys cooking on special occasions like family get together as well as during holidays. When I do, I tend to make a big production with all four burners, and oven going at once. However, this sort of cooking although enjoyable it is not only time consuming but impractical for day to day living when you are a busy mom running around dropping and picking up kids after school. Now add the stresses of living with a chronic illness and things get even more complicated. Not feeling well leaves us drained with a limited amount of energy to do all the things we must accomplish as mom’s so sometimes is easier to stop by a drive through and pick up fast food.

However, because eating out is expensive and boring when you live in a small town like I do; it is also often not as nutritious- it is only good if trying to gain weight. So, you either forgo eating all together or resort to junk food. Neither option helps our disease state. Over the years I have tried many things trying to come up with the fastest and easiest way to serve my family. Unfortunately, take out is still part of the rotation.

Today, I will talk about several options that may cut down on planning and mealtime prep. Of course, the first issue is having food available to cook. Sometimes is very difficult to go out because of our illness and even harder if we can’t drive and depend on others. I sometimes avoid going out because it wears me out the simple act of grocery shopping especially in a big supermarket. Fortunately, there are ways to simplify this through various apps to supermarkets that will let you pick what you want and all you have to do is pull to a curb and pick up groceries. There are some places that will even deliver for you like amazon pantry.

Second, once you have the food is finding the energy and time to cook. May try cooking in bulk and freezing meals for the week. I have done this many times usually cooking in middle of the night when I am most active and feeling my best. However, it is important to note that not all meals keep well when frozen. One of the easiest meals to prepare in less than 30 minutes and can make a large quantity that keeps is grilled sirloin beef stew. This can keep for a couple of weeks and simple reheat and pair with corn bread or rolls.

Third, cook things in a crock pot- I have mentioned previously several good recipe books (Any Blonde Can cook Series by Debbie Thornton) for fast and tasty meals.

Fourth, there are several services available that offer delivery of either precooked meals or easy to cook such as Freshly, Hello Fresh, Blue Apron, Home Chef, Green Chef among others.

I have tried several of these services. Freshly, I did not like because they were basically overpriced TV meals, small portions, did not keep well and not very tasty.

Hello Fresh, I really liked because it comes with very healthy organically grown vegetables all pre- measured and individually wrapped and it comes with instructions. they usually take no more than 30 minutes to prepare. Blue apron and some of the other ones according to some friends are equally good and same pre- sized and pre- measured. Only downside to these is the cost especially if large family; plus have to order a minimum of 4 meals which if live alone may not be as practical. What I like about them one is the variety can choose mechanical soft, soft, vegetarian, gluten free, vegan, soups, lunches and dinners. Many have introductory plans so at least you can try and decide if this is for you. Delivered right to your doorstep weekly making it very convenient especially in the winter months or when trying to avoid crowds because of coronavirus.

Fifth, another place I have found to have a good variety of foods is a Mackenzie Gourmet food. They can be a bit pricier for somethings but overall is excellent quality of food for price and amount of time to prepare. All items are precooked all you have to do is thaw out and heat. I love ordering certain foods from here and then adding sides for quick meals.

Of course, now that I no longer have children at home I have much more energy to prepare meals then previously mostly because it is much easier to cook for one or two people than for an entire family especially when everyone has different likes and dislikes.

Remember, these are but a few options which I have found to help me maintain a nutritious diet and a schedule. There are many more options out there and I would love to hear some of your tips.

@copyright 2020

All rights reserved By Maria L. De Leon ( ParkinsonsDiva)

Purrr-fect Love: By Maria De Leon

Comments 2 Standard

It is said that “love conquers all.”

This is so true and in my recent experience, I have discovered that love can not only come from a furry companion but be equally fulfilling as that of another human being.

Nothing is more important when feeling ill and isolated to look up and know that someone is there watching over you. I never knew I could love a four -legged creature as much as I love my cat – my ‘little baby ma -mau‘ as I like to call him.

Despite my initial trepidation in bringing him home due to my life long allergies to cats- he not only managed to take over the house but find his way deep into my heart and that of every member of the family. I can’t imagine life without him now. He has become a constant companion when I am well but more importantly when I am not so well. It is this persistence to watch over me which has won my heart. People always say that dogs are smart and that they are man’s best friend but being a descendant of the feline family myself (De Leon – i.e. the lioness) I can attest to the cleverness and astuteness of this species.

Time and time again, I have been at awe not only in his ability to detect when something is amiss in my life (i.e. health) but his determination to not leave my side even when it caused him pain.

Not long ago, I was suffering from a lupus flare-up and he had contracted a severe infection in his paw (pododermatitis). The infection was causing him so much pain he was unable to bear weight in his hind legs. So there we were a quite the pair – me moaning and groaning with every step I took especially when I tried to bend to down to give him his medicines. and he dragging his hind legs behind pulling himself with his upper paws just to be near me. I hated moving to go to the kitchen or bathroom because he would invariably drag himself behind me yet; I was too weak to pick him up to carry with me. I let him sleep with me during those days. As we both recovered we spent many days in bed. Often times, I would go in and out of conscious state but even in my stupor state, my heart filled with joy knowing that each time I glanced over he was right there keeping a watchful eye on me. during my feverish delirium he would scoot himself ever so gently close to my face and would not retrieve until I said I am okay.

I have rediscovered that true love is not only unconditional no matter who it comes from but it also has a tremendous healing and staying power for those on the receiving end. Although, I am extremely lucky to have many people who love me including my daughter and husband- only this precious little creature can stay with me 24 hours a day being my guardian angel of sorts.

As you go through your journey with Parkinson’s or any other chronic illness, there may be times when you feel lonely or alone or even a bit unloved. Perhaps, if you find yourself in this situation the solution is visiting a pet store or an animal shelter to find your best four legged mate and discover the power of loving one of God’s furry creatures while receiving unconditional love in return.

Happy Valentine’s Day to all and if you are lucky to have a furry companion keep loving them.

My two babies!

I would love to see pics or comments about your special furry friend and how it has helped you live with PD or any other chronic disease.


All Rights reserved by Maria De Leon MD

Parkinson’s Diva in good company for 2020!

Leave a comment Standard

The 10 Best Parkinson’s Disease Blogs to Watch in 2020

thank you to for the honor and you my followers for making this site one of your favorites. Let us continue on this journey together through out the year wishing for many blessings, much love, happiness and success to all. I especially wish that we stay strong and continue to SPARKLE in the midst of our daily struggles in our lives and with our chronic illness. You got this – you are more beautiful and stronger than you think!!

“Owning your story is the bravest thing that you will ever do.”

~ Brene Brown

Beautiful water color painting by PD artist from Australia i believe…

@copyright 2020

all rights reserved by Maria De Leon, MD (a.k.a- Parkinson’s Diva)

Here is to a New Year Full of Great Possibilities: by Maria De Leon

Comments 2 Standard

“The secret of change …is to not on fighting the old but building the new.” ~ Socrates

I think that my advice for you and myself come straight out of my recently published book: “Parkinson’s Diva: Hello Possibilities! The thing that we as people living with a chronic illness usually want a new start, a new way of managing disease better, or living better fuller lives despite our disease. We make a lot of self -care goals like exercising more or eating better. However, what I have been reminded lately as I was visiting a friend at the hospital, who has had many years of living with PD, is that sometimes what we desperately need for our well -being is get rid of old bad habits and practices rather than attempt to acquire new ones.

I think we can all use a bit of this wisdom – especially as we enter a year of perfect vision (20/20) we should be able to look at ourselves in a perfect light and be totally honest with ourselves of what is working and not working in our lives as well as what we like to keep or let go. Quit looking to the past and focus on the future as well as be present in the moment.

Sometimes, the longer we live with an illness we begin to put up walls to keep the bad stuff out but what we don’t realize is that those same walls are also keeping the good out making us lonely and more vulnerable.

We need to start chipping away at the walls be have built around for others to see the beauty within. It’s okay to let our guards down from time to time only then can we be exposed to new wonderful things waiting for us.

Other times, we become so focused on our health or maintaining our illness at bay that our entire lives revolve around the one disease we are trying so hard not to succumb to. Instead, we develop bad habits and unhealthy coping mechanism for dealing with our fears, frustrations, and stresses of living with a chronic illness- now imagine living with not one but two?! Now throw in having to care for special needs children or elderly parents that have medical issues of their own and we have the makings of a perfect storm if we are not careful.

The way I have been able to keep moving forward and truly allow Parkinson’s and now lupus to be just another intricate facet of my life is by following the next principles.

I too had to start with a bit of self -love – embracing all that I am- the good with the not so good which included having to live a life with PD. Although, living with a chronic illness mandated modifications to be made in every aspect of my life; it did not however need for me to stop being who I am as a person, mother, wife, daughter, friend, and diva!

Of course, breaking bad habits is no easy feat- believe you me. This decade has thought me a lot about myself and in a funny twist of fate it took losing everything I valued most to really discover myself and find true happiness.

First. We must practice self -love. One must be gentle with one self. Sometimes we forget our value and worth because the only role we have allowed ourselves to play is that of a patient with no voice becoming a victim rather than a powerful advocate for ourselves and others. Although, we cannot escape our illness we should embrace it and make it part of our life without letting it take over. It is not necessary to talk about our illness constantly nor is it healthy.  When we love ourselves others want to be with us and enjoy our company more.

Second. It’s okay to say no to others and spend time on yourself. Sometimes we need to disconnect from social media, Parkinson’s groups or other groups which do not lift us and enhance us rather drain us. Say yes to positive things. Prioritize since we have limited energy – can’t have all but can have what you really need.

Third, rest without judgement. This was especially hard for me to do. My family and friends initially would make sly remarks implying that my need for rest and sleep equaled laziness on my part. You can either be confrontational (which I don’t recommend), ignore your family and friends which is not a smart choice either especially since these are the people that will be there for you when it matters and you will become isolated. You can talk to them calmly and friendly mater explaining why you need to rest or simply don’t make commitments during the time that you need rest more. I prioritize my sleep above most things- very few things are truly important that will make me sacrifice my own well-being- my daughter well- bring is my priority as a mom. But, even she has learned that I am much more effective as a mom if i am well rested.

Four. Don’t be afraid to speak your mind. Once I allowed myself to be able ask for help for things that I needed to be able to decrease my pain and function better in my other responsibilities, I felt liberated. My mental health thanked me as well as my family. However, remember that we live in a community with our spouses, children etc. so everything can’t be about us. It is a give and take.

Five. Start living the life you always imagined. It is possible with some concessions. Go ahead  start dating, find love, start a new career, a new hobby, get a new make over- remember you are still you- beautiful, strong, witty, and smart. Since I was diagnosed with Parkinson’s over a decade ago, I have learned new things and developed new skills i never would have had the chance to develop or learn had it not been for my chronic illness.

But above all “find joy in the things you do- big or small” and celebrate them equally.

Go ahead what are you waiting for -you have 365 blank pages to fill as your heart desires….what will the result be? bold and colorful? or something in between? the choice is yours – just don’t leave empty!

Happy New Year!!!

from your friend- Parkinson’s Diva


all rights reserved By Maria De Leon MD -Parkinson’s Diva

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

Comments 2 Standard

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

Leave a comment Standard

“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

Leave a comment Standard

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.


all rights reserved by Maria De Leon MD