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
I hope everyone learns to listen to their inner voice and find the beauty within – you alone have the Power to be the Heroine or Hero of your life….
Look forward to meeting all of you In Washington, DC in October. Parkinson’s Diva will be in the house along with all the other fabulous speakers!!!
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