"Mid-Life Onset

My diagnosis came 5 1/2 years ago at age 54. Not YOPD but perhaps earlier than "normal" Like an inescapable and crushing blow, this THIEF showed up, looking to steal my life away from me. Hey! I still need my life. I'm not done with it just yet. Like most of us, still dreams to pursue. People to care for and bills to pay. Looking back now and understanding more about PD, I realize that this has been an undeniable unwelcome guest for at least a decade prior. I had the tremors 8 years before my wife finally insisted that I seek answers medically. I had been doing my best to hide the visible symptoms from everyone. So full of fear. I would secretly go online and look for answers. Hoping and praying that it wasn't Parkinsons disease. The soreness I attributed to my size. The tremors were because I drank too much coffee. Urinary urgency, again coffee. Sleep disturbances, stress... and so it went. All the while my "gut feeling" was PD. Wrought with fear, guilt, sorrow and grief, upon hearing the neurologist say (with all the compassion of a bag of hammers) " You have Parkinsons" Here's a prescription Don't read anything and come back in 3 months. I will NOT do that I thought. As I sat in my truck outside his office I cried and wept. In between the tears i began my research. I had already decided that I would postpone taking the pills. Levocarb was not a cure, despite being the gold standard of treatment. I concluded that I was in no hurry to develop tolerance to an ever increasing dosage which would lead to side effects. Oh dread! There were dark days ahead. I didn't want anyone outside of my closest family and friends to know. I stayed home. I cried and it felt like life was over. I could no longer sustain my contracting business. So much of my identity was in what i did rather than who i really was. I didn't even know anymore. Slowly I began to see people that cared about me rallied around me in any way they could. I continued to research. Looking for answers or even a bit if hope. I began to pursue holistic modalities with the thought, How would I know anything is helping if I'm using pharmaceuticals at the same time. The first thing I learned was that Exercise is medicine. Everyone agrees on that. (I hope) Then I read alot about the gut- brain axis and how gut biome health may play a significant role in neurological and other illness. Strict diet to eliminate potentially inflammatory foods resulted in significant weight loss and overall feeling better. Didn't do as much for PD symptoms as I had hoped. Discovered massage and chill music definitely helps ALOT. I know today that we are all unique in our experience with this cruel and ruthless bandit. No 2 of us have quite the same group of symptoms and severity. I do know what the remorseless crook Parkinsons wants... for me to lay in bed while it steals an almost imperceptible piece of my life each day until it's all gone. Well, I say NO F_CKING WAY!! I am not willing to hand over my most valuable time without a fight. Now I'll pause the battle cry to acknowledge that I'm not delusional yet. I know none of us are getting out alive. (Save the theological debate for another day) I also know that the latter stages of this illness... actually, I don't know. I do know that I've decided to LIVE MY BEST LIFE TODAY. Parkinsons has changed me in so many ways. Not all bad, either. I can no longer hide behind that hard shell. Today, my emotions are right at the surface. I feel vulnerable as I no longer have what I call the "Emotional Insulation" protecting me and you from how i really feel. That has been difficult for some to adjust. Friendships are at risk as many, it seems, cannot deal with the new reality that I live in. I'm not the guy they need me to be. Oh, well. Have a nice life! 2 years after getting a second opinion, I began taking Levocarb. Standard adjustment starting with 1/2 pill morning and night. Little effect. One pill 3 x day started to show some symptom relief with tremors and stiffness. Seemed that right after each follow up consult, I would realize that actually the pills really were not near as effective any more. We thus entered the ramping up period, eventually getting to 3 x 100/25 every 3 hours. Add in MAO inhibitors and Neupro patch. I get 1 hour On Time and 2 hours varying degrees of OFF Time. Dyskenesia starting to appear. Kinda wish there was a Platinum Standard. COM T is on deck next. In the meantime I have decided to try a little less drugs. What is there to lose really? I'm living life most days on my terms. Last year I also decided to develop some skills and become a performance DJ. That's definitely a work in progress. My adult kids love it because we have the same musical taste. I discovered that i love music festivals. Despite the fact I'm almost 60, sober and a PWP, I dance all day and night. My motto is "F_CK PARKINSONS". I love to defy my illness and have more fun than I would have thought possible. Today I know that my illness has given me much more empathy, patience and love for those who are in my new life. A life that I'm greatfull for today. Today I will live my best life possible. Can I overcome PD with a positive attitude? Obviously not. Some days it kicks my ass too. I pay for my escapades for sure. It still beats laying in bed watching the thief steal it away from me. This is on my terms. I'll be amazed if anyone reads this long rambling post. I'm really new to this community. Hoping that some of my experiences will help someone else to at least know were not alone. We're different yet the same. PD doesn't care about race, religion or politics. Neither do I. I do care about people. I'd love to hear some others story. I'm also interested in CBD and LDN. Thanks in advance for your comments. - Big Daddy