A Decade Battling Parkinson’s – My Mother, Marijuana and Me.

I was diagnosed with (first time) with Parkinson’s Disease in December 2006 at Einstien Medical Center (Elkins Park). I noticed a tremor effect my right thumb and was starting to develop a very noticeable gait.

There’s no easy way to say this Robert, you have Young-onset Parkinson’s disease”.

I froze and proceeded to ask the Neurologist, “Like Micheal J. Fox? She answered, “Yes. Like Michael J. Fox (who was also diagnosed at the age of 28 and due to our similar diagnosis happens to my idol and inspiration). I left the hospital dazed and confused, little did I know what I was about to deal with at home, telling family (well so-called family and friends) was going to be worse than the diagnosis itself.


Those of you who have a Parkinson’s diagnosis or a family members or friend who have the disease, know’s what a horrible disease it is. The most important thing to remember is that Parkinson’s is a different progressive disease for every single person.

If you are not familiar with Parkinson’s I’ll try to explain what I go through on a daily basis on a yearly basis. Parkinson’s Disease is a chronic progressive neurological disease chiefly of later life that is linked to the lack of dopamine production especially by tremor of resting muscles, rigidity, I would and still do feel slowness of movement, impaired balance, and a shuffling gait lovingly referred to as my “Pimp Limp”.

So, as soon as I left the hospital with my first Parkinson’s diagnosis, I called my best friend/ Guardian Angel Donato DiCristino (may he R.I.P.) and gave him the bad news and he was so supportive we talked on the phone until I got home and was about to tell my family that I was diagnosed with Young-onset Parkinson’s.

I walked through the door of our row home and the lounge was full of people all staring at me as I entered my own home. My sister-in-law, older sibling, grandmother, uncle and my mother were all sitting around the table in the dining room. My mother knew I was going to seeing Neurologist and had asked me how my appointment was as soon as I stepped through the door, struggling to get the key out of the lock and bombarded with questions my head was a spin and I simply said “We needed to talk alone” and climbed the steep stairs of our townhouse as best I could.

My Mom in tow we went upstairs into my bedroom and I shared with her the diagnosis was Young-onset Parkinson’s. She looked at me, a cheesy grin appeared on her face as she started laughing and simply proclaimed ‘The Dr is wrong  you cannot get Parkinson’s disease until you’re over 60 or late 50s” (my mother was a surgical nurse in Poland but tended to act like she was a doctor … she was full of shit really).

As you can imagine I was devastated that the one person that I could turn to out of my immediate family was a mockery of my feelings, the Neurologist’s opinion, and my diagnosis. She couldn’t wait to tell my news to the rest of the family as if I wasn’t hurt enough. I was ridiculed, the only time I have ever felt this way was when I was beaten and hospitalised for coming out of the closet to my so-called friends, but that’s another story for another time.

Laughing to herself she then made her way downstairs and proceeded to share with the rest my family my brother, sister-in-law, grandmother etc.. My diagnosis and made a big joke of it and everyone else followed along. I could only take so much so I stormed out the front door at the same time throwing my Parkinson’s diagnosis on the floor. I walked for hours with the feeling of betrayal from my immediate family. I have never felt so alone!

This continued for months complete denial of my diagnosis, they had turned their back on me through ignorance and misinterpretation, leaving me with little or no support from my family when I needed it most. That was until my third and final diagnosis at Jefferson Neurology with my mother present at the appointment. The Head Neurologist asked me to perform a few movement tests and observed my shuffling gait and confirmed to me and my mother that in fact, it was Young Onset Parkinson’s Disease.

My mother started to apologize to me and cry. I told her it was ok, I was just glad that she finally had accepted the fact that I had an incurable disease at the age of twenty-eight. I really didn’t care what anyone else thought about my three diagnoses as long as my mom was on the same page as I was.

As years had gone by more symptoms started to show and mom was supportive every step of the way. Even when I started using Medical Marijuana/ CBD Oil to medicate my symptoms (Which was a controversial subject because my mother put marijuana in the same category as hard drugs) and it wasn’t until she saw the positive effect it had on my tremors, dystonia, dyskinesia, etc. she embraced the therapeutic as well as the holistic power of CBD Oil and uses it herself for anxiety, pain relief, and inflammation and has become an advocate for Cannabinoid Oil since.

My battle with Parkinson’s has just begun a decade later I’m starting to feel additional symptoms, the side-effects of medication, the rigidity in my Muscles the depression, anxiety associated with the disease.

You might ask why am I choosing to share my story with you now, almost decade after my confirmed diagnosis?

That’s simple helping other’s understand the stages of progression that Parkinson patients endure, combating misleading information so that suffers and their caregivers deal with on a day to day basis.

To be continued…

 

“We are Fighting Parkinson’s Head On! Are You?”


Perhaps you’d like to follow my journey and my determination to beat this debilitating disease. I hope you’ve enjoyed my heartfelt story. I look forward to reading any questions and comments you might have.

 

 

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About Nishka 2 Articles
Gardening was never a factor in my youth other than watching my Grandmother bent over (Mooning half the neighborhood) weeding. I do remember asking her about the “Lilly of the Valley” and Tulips (Tulips are by far my all time favorite flower). I wanted to know if we could grow them all year around. My Grandmother laughed and explained to me how flowers and vegetation work and how each season produced different flowers. I never had a chance to thank her so I’ll take this moment to say Thank you Babciu (Grandmother in Polish)! The list goes on. It turns out cannabis was the first plant seed I’d ever sown. It was in my grandmother’s garden to the point of flowering. I was 16 and the Police knocked on our estate in Poland and asked my mother if she knew she had a cannabis plant growing in her front garden. My mother still talks about it to this day. Cannabis has always been a part of my life. A while before I started using it for Medical and CBD Oil purposes. Marijuana help with my Parkinson’s Disease symptoms immensely. It subsides my tremors, dyskinesia, bradykinesia, dystonia…etc. In 2009 I moved to the Rolling hills of Wales to be with my husband, we were literally starting our life together. I agreed and that I would work with him in his profession which was garden design and gardening. As many times as I moaned and complained about my back, I would actually come home with the feeling of satisfaction for fulfillment. We had accomplished something. We made someone's garden shine (even though it was in the U.K. and it’s always raining) after a few days work, sometimes after days work. The appreciation would receive after a hard days work would make it worth the while. So my surroundings changed completely from “Concrete Jungle” (Philadelphia) to the rural rolling hills of Wales. I mean, fall asleep to complete utter quiet with the occasional sheep in the background. That took a while to get used to, I must admit. I look back at that time in my life a think to myself, there was no place I’d rather be at that time. My husband Stephen spoiled me for the first two weeks there meeting everyone in the family, the village and my head was spinning. Two weeks of heaven had past and it was time to slowly introduce me to my new career as a gardening “apprentice”. Of course, I had to fly back and forth to the UK and Poland up to three times a year due to my Parkinson’s Disease. It was easier for me to fly back and forth then to wait for months for an appointment to see a Neurologist in the United Kingdom.

8 Comments

  1. Wow Jen!! Thank you for sharing that with me, I smile :)! when I think about the times we spend together as a family. You have been there for me more than family closer than friends! After all these years I am proud to say how much I love you all unconditionally and would take a bullet for anyone of you x always yours x Robert.

  2. OMG!! I read this and my heart sunk into my stomach!! I remember the 1st day you told me, it was a Saturday at our friends house, I was speechless and I remember going home and going upstairs and crying! The next day I went to church and stood up during Pray time and asked for Prayers for you. I remember sitting at the kitchen table during one of your bad days and watching you struggle to hold a fork to eat and it was so bad I actually left the table and went into the bathroom to cry so I know 1st hand how CBD Oil and medical marijuana has helped you, it’s actually a miracle to see how far you have come and how much you have improved.

  3. Oh my sweet sweet Trish,
    No one really knew what was going on I kept it to myself. I was in denial with the Parkinson’s disease my self after being told I don’t have it by so many people even after my second diagnosis. So, if I was worried or anything like that I’d drink my sorrows away even resort to numbing painkillers. I was in a bad place, but ten years later I’m in a much place. I’m more open about my Parkinson’s and embrace it instead of denying it. We’ve been neighbors for 35 years and you’ve been there for me when I needed you, Vice versa I hope. Next time we run into each other, let’s give each other a big hug! Love you Trish

  4. Hey Tomcat!! Have I ever told you that I fucking Love you mate? The Hip-Hop enthusiast in me played this track when I started reading your comment! https://www.youtube.com/watch?v=IIYWfCJbh2M Thank you for that wonderful comment! We will have known each other Seventeen years and we have been though as we as in some shit together. From the first time we smoked a fag outside of The City Paper to, going out with neurotic cousins, and of course in my eyes you were the guest of honor at my wedding. Never wanted to complain to you about Parkinson’s because the time we spend together is more important (So that’s why I started this writing therapy) and too far in between. It would be shame to spend time on the everyday today negative crap. Love you bro!! Even though we’re miles apart, you’re right here with me bro! PS must get together soon. Don’t give a shit what country.

  5. My Dear and Sweet Lynn shit Lyn, the First off I would like to thank you for your heartfelt comment. I believe that happened the way it happened for a reason. I wouldn’t be half as strong of a person as I am now if I hadn’t gone through all that negativity! I’m going to continue writing to get the things off my mind. Writing this piece had brought back some both happy and unhappy memories. I feel like I don’t have to ever look back at my struggles with my Parkinson’s in a negative sense. Thank you for taking the time to read. Look out for the next article. Sending Holiday wishes and cheers to you and your family. Love you.
    Respectfully yours,
    Robert

  6. Oh Darling, such a harrowing time you have been through, my heart aches for you, You have wonderful people around you to support you, and I’m so glad the CBD oil helps with your symptoms, I too am using it to try to control my hip pain, Love you loads xx

  7. We are all so caught up in our lives that we rarely take time to stop and try to put oneself in someone else’s shoes. Your story helps me to empathise and think about how I can get better and be more helpful to those around me. RIP Donato. Keep writing mate. You write from the heart and that’s compelling to read.

  8. I am so happy you are sharing your story.
    I really didn’t know all what you were going
    through. I wish I would have known. I would
    have been there for you then but I’m here
    for you now!

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