As the days blend one into another and our choice of activities become restricted due to social distancing as well as increase demands at home for those with aging parents or school aged children, we must become ever cognizant of our moods and our response to external stressors. We must find ways to remain mentally healthy to be able to stand tall through the storms of life.
Here are 4 tips that help me achieve peace and relaxation in a world full of turmoil.
Çay/ Ocha / Teatime
I recall my days abroad in the UK where teatime is a way of life – here like in many other country’s like Turkey and Japan where tea is not just a beverage but rather an integral part of the culture and longstanding tradition of consuming a perfectly brewed cup of tea with family and others. I too became enthralled with the notion of afternoon tea. A nice relaxing conversation at the park with my friends over a cup of (my favorite raspberry) tea- the break always gave me something to look forward to; these days with the pandemic the ritual is even more important as it provides an outlet to decompression from the day’s activities particularly from the virtual meeting overload. To make it more special I prefer to use my favorite porcelain tea. As I sip it in my favorite chair by the window, I am immediately transported to grand days I spent at the Fairmont Empress Hotel in Victoria, BC
If you do not like tea you can do a cup of coffee or hot cocoa – all of these can restore energy and allow you to be more productive.
Cooking & Singing Out loud
This is one of my all-time favorite activities to do especially in the middle of the night when everything is so serene, and I am wound up and awake.
I like to try new recipes especially desserts – as I mix, measure and pour, I like to crank up the volume of my favorite eclectic playlist that includes anything with a beat ranging from Brazilian to African drums to the sounds of a great guitarron (deep body guitar with 6 strings) and vihuela being (smaller figure 8 guitar played like a lute) played by a Mariachi.
Upgrade the Everyday
I am sure all of us have fancy dishes and things we “save” for special occasions but in this day and age with so many unprecedented events happening in our communities, enjoying a meal in fancy plates not only gives us a sense of calm but also provides an escape from the mundane. After all beautiful things are meant to be enjoyed transforming ordinary chicken spaghetti to a culinary masterpiece.
Tidy up your purse
Nothing calms the boredom and stress down like a good cleaning -after all ‘cleanliness is next to godliness’. One of my favorite things to do to break the monotony is to dump all the contents of my purse on the sofa and reorganize all its contents in a perfect pristine order (although short lived it is extremely satisfying) and for a moment no matter how brief ; we feel like we have achieved control over our own world. (You may also have same sense of accomplishment organizing your pills for the week or the month).
In the end, it is up to you to find your own way of calming yourself whether it is by using any of the above tips or creating your own. The key is allowing yourself to be in touch with your senses using sight, sound, touch, smell, and taste. It may take a few trials to hit the right note but keep trying new things to engage yourself in and forget for a few moments the worries of the day. Sometimes being so far out of our own comfort zone helps us focus on what is important by clearing our minds and providing us with a brand-new perspective. Yes! It took a world pandemic to make me enjoy being an active participant in the culinary arts. So, who knows what hidden gems deep diving into relaxation activities can unveil about yourself?
All Rights reserved By Maria De Leon (a.k.a Parkinson’s Diva)
I don’t know about you but low-pressure systems does a number not only on my migraines but also on my back. So, having to endure the possibility of being hit by a major hurricane (i.e. Laura) while popping anti emetics and pain pills to deal with both migraine and back pain is no fun at all. Since I developed PD both have worsened. My migraines which were moderate but infrequent intensified and became more frequent while my previously healthy and strong back has had to endure spontaneous disc herniation’s, which I attribute to PD.
In fact, many patients with PD suffer from chronic low back pain and appear to have a higher incidence of low back pain. In fact, low back pain maybe one of the early presentations of Parkinson’s disease (30%) as it was for me. I suddenly developed excruciating pain in my low back and a feeling of continuous spasm which was relieved once I began anti-Parkinson treatment. It is believed that this pain is caused by a combination of axial rigidity leading to abnormal posture (primarily stooped), abnormal muscle tone, truncal dystonia, and abnormal contractions (which I experienced initially).
Some scientists have noted that perhaps low back pain is the most common “parkinsonism” in the world due to an astonishing similarity in neurophysiology.
Both have altered sensory input with a disruption in the basal ganglia making it difficult to have “anticipatory postural adjustments” meaning they have inherent inability to compensate for changes in voluntary movement that allows for one to maintain balance and posture. Interestingly, both PD and low back pain share decrease in stride length, and velocity of gait as well as asymmetries of steps.
So why is this important? Well because in my experience both as a physician and a patient having poorly managed low back pain leads to significant disability. Low back pain in fact ranks first in global disease burden for years lived with disability compound this with Parkinson’s which is the second most prevalent neurodegenerative disease in older adults leading to a perfect storm not unlike Katrina, Rita and Laura.
The share similarities between the two can confound the management of either disease. That is why is important to note that we must treat both aggressively to prevent disability via physical therapy, adjustment of Parkinson’s medications (in my experience frequently requiring higher doses of dopaminergic medications), may also include injections, anti-spasmodic and anti-convulsive treatments as well as surgical intervention, as it was the case for me. Because when we talk about the co-existence of both PD and low back pain the percentage skyrockets to a whopping 85%. So, if you are suffering from chronic low back pain make sure you seek appropriate medical attention from a multidisciplinary team which should include your neurologist/MDS, physical therapist as well as pain management, orthopedic specialist, and/or a neurosurgeon. Over the years, I have used all these specialists to treat my back pain along. Currently my dopaminergics along with stretching exercises keep my pain at bay unless there is a depression in the Gulf and then all bets are off and muscle relaxants and anti-inflammatories are required with an occasional pain medicine or Lidoderm patch.
Besides talking to your doctor about best treatment options for your PD and back pain, you may also participate in a study to help discover a new treatment for low back and sciatic pain.
Learn about a new research study for #sciatica resulting from lumbar disc herniation. Study-related care is provided at no cost. #sponsored #cureclick #lumbardischerniation #chronicpain #sciaticatrial Answer a few questions to see if you qualify! https://curec.lk/2QD3klu
Jacobs J., Henry S. and Horak F. (2018) What if low back pain is the most prevalent parkinsonism in the world? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5940750/
All rights reserved by Maria De Leon
Here is the you tube video link: Mid-Summer Nights Poolside Chat on Women and Parkinson’s 2020
please join us and have a virtual girl’s night out while discussing salient topics on PD, sex, hormones and much more
send your questions ahead of time – if you are to shy to ask in person..
look forward to our chat – bring your favorite umbrella drink , bathing suit, Hawaiian shirt or whatever makes you feel good…
thank you for joining!
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.
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
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
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
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!!!
all rights reserved By Maria L. De Leon MD