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I was diagnosed with early-onset Parkinson's. I was ashamed at first, but I've chosen to live life fully.

Lauren Crosby Medlicott   

I was diagnosed with early-onset Parkinson's. I was ashamed at first, but I've chosen to live life fully.
  • Jo Tosh is a 55-year-old woman in Saltburn-by-the-Sea, England.
  • She started noticing a tremor in one of her hands when she was 45.

This as-told-to essay is based on a conversation with Jo Tosh. It has been edited for length and clarity.

The earliest signs of my Parkinson's started 10 years ago with tremors, especially in my left hand. I couldn't pick the strings of my guitar anymore.

Gradually over the following two years, more symptoms started. I was exhausted all the time, as if I were pregnant. I would just look at the floor and think how comfortable it looked. My mood was very low, even though I had no reason to be down. My handwriting was getting smaller and smaller. I couldn't cross my legs when sitting down. The left side of my body was very stiff. My foot was dragging when I walked because I couldn't quite lift my leg high enough to get my foot off the ground.

I started to have tremors in my hands

The most visible of my symptoms was the tremor. After 30 years of being a nurse, I was teaching cardiology at a local university. One of my colleagues noticed the tremors and asked if I had been drinking too much alcohol. I felt judged and ashamed, like I needed to justify myself to this person. In class, I would introduce myself, making sure to note to the class I wasn't an alcoholic and wasn't nervous but did have a tremor.

At the time, I didn't think any of the symptoms were worth worrying about.

In March 2015, I was on vacation with my dad and sisters when my sisters noticed the tremor in my hand and said I should see a doctor.

I was diagnosed with Parkinson's at 47 and thought the doctor was wrong

My doctor referred me to a neurologist. I thought my first appointment would be just a meet and greet, so I was happy to go alone.

He told me I had Parkinson's. I replied, "Oh, dear." I then said this couldn't be possible. It was an old person's disease, not something a 47-year-old got. I was shocked and devastated. Living with this would mean my future would be nothing like I had imagined.

On the way home from the hospital, I cried, mourning that I would never get to hold my future grandchildren.

At this point, I didn't know much about the disease. It's a hidden condition that people don't talk about much. Since I didn't know a lot about it, I was probably too dramatic at the time, filling in my knowledge gaps with what I thought would happen as the disease progressed.

Very quickly, I had to come to terms with an uncertain future. The doctor said he couldn't put a timeline on how fast the disease would progress or which symptoms I would get.

I had this narrative of how my life would go workwise, homewise, and careerwise. All that stopped.

I chose to make the most out of my life

Eventually, my tears stopped. I decided I needed to make the most of the time I had left. I wanted to live the rest of my life with meaning and purpose. I didn't want to fret about small stuff.

I started living, instead of dreading the future.

I practiced yoga. I traveled. I went to festivals, museums, and the Chelsea Flower Show. I participated in a catwalk for a fashion show. I took up paddle boarding. I've had a wonderful time.

Even so, life hasn't been easy since the diagnosis. I've started on antidepressants and consistently see a therapist to help me deal with some of the difficult aspects of Parkinson's. I had to give up nursing and teaching, which was a vocation, never just a job.

I don't want people to feel alone

Early on, I felt alone and ashamed walking through early-onset Parkinson's. I didn't want other people to feel the same, so I dedicated an Instagram page to life with Parkinson's. I've connected with people from all over the world who now support each other on their journeys.

I also worked with Parkinson's UK to make videos about what to expect after a diagnosis. They even recorded doctors drilling into my head when I had deep brain stimulation last year.

Friends scoop me up when I'm feeling low. They sit with me when I can't do anything. They encourage me to have fun. One friend wrote to Brené Brown to tell her about my plight. In response, Brown sent me a signed copy of one of her books. I have the best friends.

My daughter recently found out she was having a baby boy: the child I thought I would never get to hold when I was diagnosed eight years ago. But in just a few months, I will be holding him.

I'm still frightened because whatever way you look at it, Parkinson's is eventually debilitating and painful, both for the person experiencing it and the people around them who can't do much to help.

Even though I wouldn't wish to have Parkinson's, it's brought me unexpected joy. I don't sweat the small stuff, enjoy the time with my kids, and am going to try to be a good grandma to my grandson.

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