The Invisible Side of Parkinson’s Disease

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By Maria De Leon

“If you are a dreamer, a wisher, a hope-er, a prayer-er come sit by my fire…. Shel Silverstein

Poem Invitation

Unlike the magical place described by Shel Silverstein in his poem that starts off with “There is a place where the sidewalk ends and before the street begins….” those of us who live with Parkinson’s disease know an entirely different realm one that does not always lead to childlike joy and heaven like peace rather to a reality of struggle and frustration that may be dark and dreary at times. Nevertheless, I continue to strive each day to find happiness and gratitude in the mundane even as I watch my Parkinson’s advance just a tad each day.

 “You look great!”  echoes in my mind, as I struggle to get dressed and start the day. If I could only feel as I look. I sigh getting both of my legs caught on one pant leg nearly causing me fall to the ground flailing my arms all about and with that motion all the clothes on the hangers next to me come tumbling down. I stare at the mess on the floor beginning to perspire as I am still struggling to put on my pants. I attempt to pick up the clothes on the ground with my feet since I am too stiff to bend down and have a frozen shoulder preventing me from raising it fully to grab the hangers dangling on the rack. I inhale deeply and blow out a loud exhale in frustration as I contemplate the mess all around me wondering when I am going to be able to put the pile fast accumulating, on the island by now, from all the fallen clothes back on its hangers. I Definitely need more dopamine! If  only it was as simple as that.  I know that’s the answer.  But how do I make my body understand what my brain needs to function and not fight it as if it was some foreign toxin. Half-jokingly I exclaim,  this fight is not over!  I am in charge here and smile inwardly to myself thinking: “well, at least I look good.”  I find comfort that at least I still can pull it together and appear ‘normal.’

Never mind I can’t sleep until the wee hours of the morning or that I can’t function until nearly noon because it takes me at least an hour after I wake up to get my bearings on. That any attempt to communicate with me prior to this will be met with great resistance and in- cohesive mumbling. Forget  making any crucial decisions before the brain fog lifts. Until that happens, I cannot tolerate loud sounds nor bright lights. A drop of sunshine makes me retrieve as if the light touching my skin would make me spontaneously combust as we have all seen in the old vampire movies. So I wear my Jackie -O shades everywhere only fueling the image of the “Parkinson’s Diva” and I laugh as I retrieve into a dark area of the house where I can relax and take off my shades and wait for medications to kick in and side effects to wear off before I can tackle the day and so it goes… yet despite the daily challenges, struggles, and mishaps I still think of the beauty of life and all the friends I have made along the way and all the firsts I have lived as a result of PD.  I stop and wonder how far I would be able to travel in this path?  I say to myself that if  I purposefully continue to “walk with a walk that is measured and slow” I think one day despite all my invisible struggles I too will reach the site “where the chalk white arrows go” and “where the moon-bird rests from its flight.”

Poem by Shel Silverstein – Where the side walk ends

copyright @2022

all rights reserved by Maria L. De Leon

International Women’s Day – ‘Choose to challenge’: By Maria De Leon

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“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?

copyright@2021

All rights reserved by Maria L. De Leon (a.k.a. Parkinson’s Diva)

Interview with Jody on Parkinson’s disease and nOH

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#nOH and #Parkinsons. #nOHMatters #nOHChampion

nOHmatters.com

https://www.nohmatters.com/?utm_source=Parkinson's%20Diva&utm_medium=Blog&utm_campaign=nOH%20Matters

defeatparkinsons

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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So long, farewell, adieu, adieu, adieu… by Maria De Leon

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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!

@2021

all rights reserved by Maria De Leon