“It does not matter how Strong your Opinions are. if you don’t use your POWER for POSITIVE Change , you are indeed part of the problem.” ~ Coretta Scott King
Women’s Day dates to February 28th, 1909, on the advice of Theresa Malkiel. Theresa was the first American woman to rise the ranks from a factory worker to a leader of the socialist party. She was convinced that the only way to fight for women’s inequality was to band together. Over a century now, the same principle holds true.
Fifty years, since the inception of a global celebration to address women’s accomplishments, some of the challenges and inequalities faced by many women around the globe have not advanced as fast as we would like it to be particularly in healthcare.
This year’s UN theme is “DigitALL : Innovation and Technology for Gender Equity.” Post Pandemic, the use of technology has skyrocketed, especially in medicine. Case in point this week as I tried to take care of my husband’s and mothers’ medical needs including my own, I was not able to speak to a single person at first try while contacting the various healthcare providers offices, pharmacies, and insurance representatives. Despite multiple attempts in many cases I was only able to hear a digitized recording which directed me to the ‘patient portal’ never mind I may have neither accessible portal nor reliable internet. This got me thinking about what our true goal is. We are supposed to be empowering women and giving them tools to navigate their care in a manner to have greater access to care along with more resources. In theory digital technology is supposed to decrease disparities among groups of people and eliminate gender biases and improve inequalities. However, my personal observation and experience in caring for neurological patients is that the forced implementation of technology at medical institutions for instance while eliminating all other means of communication is alienating minority groups as well as the elderly, financially disabled and cognitively impaired patients. we know that about 40-50 % of patients with Parkinson’s can develop dementia.
We must not forget who it is we are trying to benefit and provide tools to overcome the challenge of being a single mom with a fixed income living with a progressive neurodegenerative disease for instance. We have to find innovative ways of engaging and teaching women around the globe in this case, how to use technology to serve as another tool for communication, access to health, and empowerment but NOT the only choice or means of engaging the community.
To be successful in using much of technology available one must have access to internet and know how to use it. I have several elderly close relatives who live alone and are otherwise independent. Yet, as many attempts have been made to incorporate into mainstream ways of accessing care, the challenges that have ensued can create an unnecessary burden and handicap when once there was none. Plus, circumventing these barriers and challenges of remotely facilitating supervision and care by a third party in a different city or state can lead to much agony and frustration as I have learned firsthand. Keep in mind that I am not only quite savvy as to how to navigate many situations especially in the healthcare system along with being extremely persistent yet frustration at times can hit the roof especially when considering my own disabilities. According to a report cited by the UN 37% of women don’t even have internet (I would venture to say the percentage is much higher than this). Although, women account for nearly half the population, it is estimated that 259 million fewer women have access to internet. Now think about the fact that women already have lower income, lower education and live longer than men especially in minority communities such as the Hispanic/Latin, we are perpetuating gender inequality and will continue to do so unless we intervene. Technology should not be an end all be all but rather should be a tool in the armamentarium to help people in this case women get support be it financial, physical, or psychological to live the best life possible despite having a chronic illness. Since women are less likely to even own a mobile device by at least 12% around the globe only 25% is estimated to be connected especially in underdeveloped areas.
2nd problem is that women outnumber men in significant neurodegenerative disease which can affect cognition such as Alzheimer’s (it is believed that more than half are women), 70% of those living with MS are women and roughly about 40-50% of PD are women. Further it is estimated that about 25 % of PD people living on Medicare are living in long term care facilities which we know don’t have access to digital technology commonly.
3rd problem we know that humans are social beings and that all of us do better when we are mentally and physically active but not just random activities but those with meaningful connections like having social interactions so as we become more digitally dependent we are becoming even more isolated which does not help anyone living with neurological diseases like Parkinson’s which in women has even more negative impact because of tendency to have more depression, challenging the dogma of ‘first do no harm!’
Finally, as we face the last frontier in the treatment and care of women in Parkinson’s and try to bring equality, we must continue to appeal to healthcare professionals, public policy makers, Technology innovators and scientists and women of all walks of life to first band together to break down barriers; but also to remain steadfast as the guardians of humanity or we as women will continue to suffer the disparities. For it is only the combination of knowledge infused with the human touch that the true art of healing results and the only one capable of empowering change and decreasing the gap in women’s health.
“LET EVERYTHING HAPPEN TO YOU.. this new Year: BEAUTY & TERROR. JUST KEEP GOING & Believing. NO FEELING IS FINAL!”
Rainer Maria Rilke
January sucked, February sucked, and March did a pretty good job in not upsetting the status quo. Fortunately, April decided to stand up and prove there was a better way as the fog of Covid finally began to fade away. Slowly May and June followed suit. Just when things started to get interesting again with newfound energy, strength, projects, and goals -August said not so fast and by the end of September life was beginning to fade once again. Midst of fall in the middle of October the feeling of being engulfed by a dark cloud seemed to want to settle in once again. This time I fought harder than ever even though again I was home bound, bed ridden, hospitalized and even underwent surgery -yet, despite spending half a year in some sort of cocoon dormant, I plowed through November and December. Finally as 2022 concludes I am proudly donning a head gear with broken stars which now reads “APPY EW YEAR!” because even though I bought the head brand new at the beginning of the year thinking ahead somehow it did not like it’s location I placed for safe keeping and revolted as well- with an “H” half dangling and the “N” completely detached and a broken star alongside of iconic hat it is a perfect summation to a crazy roller coaster of a year – Yet despite all of its challenges my determination and hope remain intake and I am looking forward to the unfolding of 2023 with all is letters and stars intact ready to start a new chapter and begin a new adventure.
Happy New Year -See You in Barcelona !!! ¡Feliz Año Nuevo -Nos Vemos en Barcelona !
Copyright2023
All Rights reserved by Maria L. De Leon (Parkinson’s Diva)
I have missed writing for you. I know it seems that I might have dropped off the face of the earth (although at times I certainly feel like I am being swallowed alive and the safest place is my cozy couch aka the “Diva couch” if it could only talk the stories it would tell). So if it could talk it would say get up and do something other than watch the same soap for the umpteenth time and stop playing candy crush- these two things I have discovered are my OCD’s (obsessive compulsive behaviors) when my levodopa is running way low and I am in dire need of something to boost my dopamine levels, okay lets not forget my sweet binging that also comes along with that sudden drop of L-dopa. I am sure you all have a secret stash of your favorite sweets like chocolate, gummy bears, cookies, and lots of caffeinated drinks! These all release (sugars that is) a great burst of dopamine that helps to energize motivate and move us. Unfortunately, these are very short lived and don’t do much for the waistline of any Diva ( guys/men I am leaving you out because you know that if you don’t eat for a day or two you will be at least 10 lbs lighter). women however because of our fat distribution and hormones it is not only harder but after we hit a certain age – you know menopause hits and the weight decides to come along for the ride. That’s life isn’t? you think i wont have to deal with that any more and then Bam! there is something else. That’s been my life for the last couple of years and this year began with Covid as so many of you have experienced. Seems like everyone I know had it during the holidays and most were better within a week but not me. I have to do everything BIG- 3 months later I finally awoke from a stuporous state and 15 lbs more of me too love. I guess all that sleeping tricked my body into thinking I was in a hibernating mode. I celebrated New year in March! After all life is not how is drawn but rather how you decide to color it.
As I said earlier, I have a couple of Ocd’s so watching my favorite movie over and over is not big deal but when i started feeling the need to purchase lives for candy crush that was an eye opener. Not because I ever spend more than $2 is the principle I have never been a gambler. I been to Vegas several times and I think I spent probably no more than $10 on any games total for all the times summed together and this includes money shared with my husband. So the amount is not the subject as much as the new interesting urge to spend money on something that before I would never even think about twice. That’s because in order to release some dopamine I need some short term gratification. why did this happen after nearly 16 years with PD and nearly that long on agonists – the answer unopposed agonist. I began having more side effects of my levodopa med which prompted me to stop on some days and interestingly the days without L-dopa that’s precisely when I needed and craved sugar and caffeine as well as needed to watch my favorite novela -“like an itch that had to be scratched” in order to find satisfaction with release of much needed dopamine but without medicine this is not sustainable. Hence, the recurrent behavior which tends to escalate due to its up-regulation of brain dopaminergic receptors needing more and more to get same effect. Thank goodness, I was introduced to new medicine long acting COMT inhibitor –Ongentys (Opicapone) and is once a day. So now I am still on same agonists but back on my levodopa at lower doses yet effect is enhanced due to once a day pill. i went from levodopa working about 4 hours back up to 7 hours – no more ocd’s!!! I am sure everyone is happy having me back to normal because they were tired of me being on couch watching same Turkish drama over and over and perhaps a couple of dollars richer we can spend on something fun or delicious.
The new medicine was the turn around for my energy this year that’s not to see I did not have any more health issues. That’s like asking the sun not to shine- impossible!
The reason I have not been writing much is been my involvement in national and international organizations trying to improve resources, research and treatments around the globe for Parkinson’s patients and their caregivers. I had a great birthday thanks to Vanessa and Allen who are documenting PD in young onset which will be televised next year on PBS. Although, after 2 days of filming I crashed yet the experience was unforgettable. I had forgotten how much fun it is to have a Birthday party!
Parkinson’s Diva 50th!
As you can see despite all the downs there are always ups and good things if you learn to trust your inner self and learn to sparkle even on the darkest days. ( These pics are just but a few snap shots of what I been up to this year working with Adira Foundation, Parkinson’s Foundation, PEC FDA, WPC Barcelona, PMD alliance, Michael J Fox, Wego health, Give for a smile making promotores across Latin America and the Latino PDGENEaration council). I am blessed to be able to be a voice for the women with PD around the globe but we need more courageous, determined and strong women like you to join the ranks so i hope you consider going to the ALL IN SUMMIT this fall In DC to meet other Parkinson’s leaders. It does not matter if you are a seasoned veteran, just starting or simply wanting to learn more about advocacy. Here is the link to find out more and register
Empezaremos con el tema de la mujer y el impacto en la sociedad tanto como paciente al igual que al cuidador – espero verlos por alla este jueves 8 de Septiembre del 2022 a las 4 de la tarde horario pacifico
“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
“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)
Parkinsons Diva 