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

thank you to http://www.EverydayHealth.com 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

@copyright 2020

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

“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

@copyright2019

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

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

https://www.brainandlife.org/the-magazine/online-exclusives/the-neurologist-is-in-is-it-menopause-or-my-neurologic-disease/

“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

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

http://www.familycircle.com/health/concerns/aches-pains/whats-wrong-with-me/