“It is not easy to be a pioneer- but oh, it is fascinating! I would not trade one moment, even the worst moment, for all the riches in the world.” Elizabeth Blackwell
For me, living with Parkinson’s disease as a woman is a lot like being a woman in the field of medicine – the ones that are successful are the ones that rise above the challenges and obstacles in their path.
Although we have come a long way in both arenas having displayed great courage, fortitude, and self-determination to make our voices heard, the ‘Women with Parkinson’s movement’ is just now gaining momentum. This is an exciting time for all of us who struggle daily to be mom, wife, lover, sister, friend, caregiver and whatever else we choose to be despite PD.
Surely you can all remember a time when you thought it was impossible to achieve a dream but somehow you managed to find the inner strength to persevere. Although it seemed insurmountable you never let up until you reached that goal. Do you recall how wonderful it felt to finally attain what you were after? That passion and that drive must be harnessed daily. For me, the unwavering determination I once possessed to achieve my dream of becoming a doctor is the same that has inspired me to keep moving forward over the last 15 years since I was diagnosed with Parkinson’s. It is a mental action taken daily sometimes more often to actively challenge the constraints our illness places on our bodies. I like many women have chosen to speak out, reinvent myself, break stereotypes, forge new paths, and bring awareness to issues previously considered taboo and I invite all the women with PD around the globe to do the same.
Sometimes the unexpected changes brought on by life and living with a chronic illness can take us by surprise leaving us discombobulated and dumbfounded, wondering where to go next or what to do.
As you find yourself face to face with an unexpected disease which might leave you Topsy curvy rather than panic or give up; wait awhile gather strength, look how far you have come, and how much you have achieved then with fierce determination choose to rise and challenge your present status to move forward but remember that together we women are stronger and are capable of great achievements and together we can break barriers and reach new horizons.
How will you #ChooseToChallange?
All rights reserved by Maria L. De Leon (a.k.a. Parkinson’s Diva)
#nOH and #Parkinsons. #nOHMatters #nOHChampion
This post was sponsored by Lundbeck, but all opinions within are my own.
While Parkinson’s disease is the second most common neurodegenerative disorder in the world after Alzheimer’s, there is a lesser-known condition that can be associated with Parkinson’s disease (PD), which can often be overlooked but can have a severe impact on quality of life. That condition is called is neurogenic orthostatic hypotension (nOH). Simply stated, it’s a failure of the autonomic nervous system to regulate blood pressure in response to postural changes.
In fact, one of my initial symptoms of PD was low blood pressure upon standing, which was diagnosed as nOH. Once I commenced treatment my symptoms became less pronounced and stayed that way for the last 15 years, until recently, when I began to experience a resurgence of severe lightheadedness. This has caused not only a sensation of weakness in my legs, but on one occasion…
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However bad life May seem There is always something you can do ( while)…There is life there is hope
After a crazy year where everything that could go wrong went wrong, I know that all of you are looking forward to a fresh start just as I am. On the first of the year, I felt compelled to sing “so long farewell…” from my favorite movie The Sound of Music.
As I watched it snow on Sunday, I welcomed the calm and beauty it brought taking away all the anxieties fears and worries of the past year.
I thought about the events of last year …
COVID-19 came and my daughter came home and has remained with me which was a plus. Then I got the virus was sick for two months, nearly lost my father-in-law, lost many Parkinson’s friends then nearly lost my husband as well as the year drew near to the end.
First came utter denial could this really be happening? Were we living another world pandemic like the one seen in 1912 with Spanish Flu?
Followed by swearing screaming and crying as I realized that this would leave permanent scars both physical and mental. From the beginning, I worried that this could unleash another parkinsonism wave as the one seen 100 years ago. Cried more when my fears came true.
With persistent disease and talk about flattening the curve, I sank more into isolation. Thank goodness for YouTube and Netflix. To ease the boredom between all the hospital visits, I went on binging spree – but it was not all a waste because I learned Turkish.
Instead of bargaining I took to blogging about the pandemic until I was sick and tired of being sick and tired of same topics discussed ad nauseam.
Days without cooking due to shear exhaustion and apathy relying on door dash.
Shopping for everything under the sun online to be delivered at my doorstep or for pick up without having to set foot in a store.
Pleading to God for mercy and relief from pandemic Finally, after a couple of months of feeling no motivation (increased apathy) acceptance came. Seed of hope began to take root deep within and interest in life has begun to flourish. After my coping strategies were all put to the test, I found new courage to face a new year in which the pages of many chapters remain to be written. Although some of the chapters in our past have been dark, they have taught me resilience, gratitude for small and big things, as well as well as reminded me that my faith is bigger than my fear because God is with me. Because of this I have courage to face the challenges ahead to fear less and allow my inner voice (which sometimes is barely audible in the midst of chaos) to lead me forward and allow me to persevere and say ‘yes you can !’
I hope we can say goodbye to wearing masks and talking to friends thru plexiglass. I want to be able to travel again and roam free and visit friends and loved ones without fear of contracting the virus while I hug them for a long time. I want to look upon the beautiful smile of my friends once more. And I want to share my smile (of course accentuated by my red lipstick!) with others.
To all my friends much love, courage, strength and determination to keep being the PD warriors that you are and a very blessed 2021!
all rights reserved by Maria De Leon
“You will forget your misery; you will remember it is as waters that have passed away. and your life will be brighter than the noonday; it’s darkness will be like the morning. and you will feel secure because there is hope; you will look around and take your rest in security…” Job 11:16-18 ESV
For all my followers, I know that I seem to have disappeared, but I assure you that my thoughts and prayers have never left you. This year has brought many of us trials, struggles and hardships. As, I read the news the other day, I was extremely sad to discover that more people have lost their lives to suicide than to the virus itself. I believe the reason is because many of us seem to have lost something vital –HOPE.
When this year began, I commenced the study of Job (it’s customary for me to begin new biblical study each year and each time has been something that has helped me deal with the present circumstances)– never has this story rang so true to me as it does today. As the year unfolded, I found myself thinking more and more about this man’s life. I like so many of you was reminded how precious life is and how priorities can change from one second to the next.
At the beginning of the year my entire focus was on Parkinson’s. I wrote about how excited I was about all the new genetic, gender and diversity initiatives occurring in our community across the globe and how honored I felt to be part of this global awakening even if my part was minuscule. Then the pandemic began and turned my world as it did all of ours upside down. Although, I have continued to play an active role behind the scenes and are extremely grateful for the opportunity to be part of many new firsts. My focus has shifted to bringing hope and encouragement to those living with Parkinson’s and other chronic illnesses. I like most of you have had to reach deep while relearning how to survive but also thrive during this pandemic, which I assure you has been no easy task.
Many of us have learned firsthand what real fear is as we have watched a love one become ill and whisked away by an ambulance or through the emergency room doors wondering if and when we might be able to hold our loved one in our arms again. Some of us might have gotten lucky to see the return of said loved one to our homes and be thankful for that . But some of us may not feel as blessed having lost one or more friends, family or loved ones. I have had my share of Parkinson’s friends , and other close friends lose their battles. Many due to the virus others perhaps precipitated by the current conditions which heightened the stress or decreased their ability to get appropriate care for their underlying conditions.
My continued prayer during these challenging times especially when my husband was in ICU near deaths door was for me to have faith greater the fear I was experiencing. I tied to remind myself that things could always be worse. Although the fear of losing my husband, my partner, my caregiver was very real. I thought of my best friend who had just lost her husband suddenly and my heart saddened but regained courage as I had watched her try to remain strong in the face of adversity. I too was feeling vulnerable both physically and emotionally compounded by the fact that my husband illness was on the anniversary of my father’s death.
Again, I turned to Book of Job and was comforted by the words that are the backbone of the advocacy work I do. “you will be secured because there is hope…” (Job11:18)
Today I am grateful for the great friends that I have in this community, friends that sit quietly next to me (and you) during the storm.
During these difficult times I like for all of you to remember, as I do, the story of Job who lost everything his family, his friends, his fortune and even his health but he never lost his grateful heart nor his faith. I pray that goodness, kindness, hope, and faith prevail as we continue to make sense of the losses we have had and the personal trials we are still enduring. I am confident that as in the story of Job that if we manage to hang on for one more day eventually there will be healing, peace and love once more.
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