Nobody ever thought I had Parkinson’s disease – I was just 10 years old”

On National Day of Parkinson’s in Italy we hear one Italian girl’s extraordinary story of how she’s coped with Parkinson’s from the tender age of 10 

PERSPECTIVES 

Author: Elisa RovelliPublished: 28 November 2015

The average age for the onset of Parkinson’s disease is 60. So, imagine first experiencing the symptoms at 10 years old. That’s what happened to Elisa Rovelli, from Bologna in Italy, who is now 29. After being misdiagnosed with dopamine-responsive dystonia, she was eventually told she had Parkinson’s at 19. Here, she recalls a childhood blighted by the condition, blaming herself for being different, and the time she was mistaken for a heroin user by a nun while at convent school.

I was still at primary school in a village of the region called Brianza, in the north of Italy, when I first started feeling weak. I soon lost my balance as my centre of gravity was beginning to shift ahead. When the left side of my body stiffened I started dragging my left leg, which meant I always wore down my shoes.

I went to see many doctors: physiotherapists, neurologists, orthopedists. Nobody ever thought I had Parkinson’s disease because I was too young – I was just 10 years old.

I got worse year after year. Then other symptoms appeared, such as tremor and postural instability. Walking also became hard. At 17, I was almost paralysed by pain and tiredness.

The mornings were the only time I could make a few steps without becoming exhausted. The only symptom I’ve never had is speech impairment as I’ve always tried to train my speaking skills – a trained brain means a lot while the body struggles.

Before I turned 18, I was diagnosed with dopamine-responsive dystonia (DRD). Doctors prescribed me the drug, levodopa. Everything was better with half a tablet of levodopa a day. But the diagnosis of 2004 was wrong. I was diagnosed with PARK2 – a form of genetic Parkinson’s – in 2006 thanks to a more specific genetic test. I was 19.

Too young to understand

I understood the deficiency that made me different was outside of my control. I was living between my family who couldn’t help me and the pain of being different and not accepted by society.

My parents couldn’t be my role models because I was different to them – I’ve never had any guidance, anyone I could look up to. I felt like I was alone with the condition. This was particularly painful during the seven years of my life when I didn’t have a diagnosis.

Unfortunately, it forced me to grow up very quickly and I was no longer a ‘child’ when I was diagnosed. I didn’t know anything of my illness. I thought I was the problem.

“I didn’t know anything of my illness. I thought I was the problem”

Parkinson’s is destabilising and its treatment is nothing but a temporary fix. Living with Parkinson’s is like living with a bleeding cut in your throat. I’ve had this for 20 years. It bleeds the whole day, except when you are under levodopa and ropinirole. But these drugs don’t cure you. The wound stops bleeding for a while, but you know it will open again.

The awareness of the condition being there all the time preys on my mind and prevents me from expressing my ideas in the way someone at 29 with all her cognitive capabilities should do. I fight everyday but I don’t blame people who don’t. Anyway, this is the only life I have. And it’s one that’s worth living.

Friends for life

At the age of 11 my friends and I were not kids anymore. We were already very independent: we cooked by ourselves, we took our bikes and went out on our own.

My friends didn’t care if I was crippled, if I lost my balance or if had to stop in the middle of the street. They wanted to stay with me because I was Elisa, not the girl with a weird illness. I was happy.

There has always been two categories of people: the ones who see Elisa and the ones who see my illness. I’ve always preferred the first category.

I remember when my schoolmates went to Paris, but I couldn’t go. They sent me a postcard, a letter and a souvenir but I was stuck at home. I couldn’t do what they were doing, which upset me.

“My friends didn’t care if I was crippled. They wanted to stay with me because I was Elisa, not the girl with a weird illness”

Although it was hard to live without a clear diagnosis for seven years, without the ‘shield’ of Parkinson’s that could have justified me being different, now I feel nostalgic about that time of my youth when I was happy.

At school, my teachers understood I had a problem and were very patient. They always tried to value me for what I was able to do in terms of intellectual work.

It was actually my chemistry teacher, in 2003, when I was 16, who told me I had to do something to feel better and convinced my mother to withdraw me from school.

Lack of parental guidance

My mum didn’t understand what was going on. She kept sending me to school and when she brought me to the doctor we had to walk or go by train. She didn’t understand I was always weak and tired because of an illness. But at least she was trying to help me. My dad was never around but he was financially supporting me.

I’ve always made do with what I had. But I can’t say my family environment helped me to make me feel a hero. Actually, my parents realise only now, after 20 years, that I have a problem!

Also I left home when I was 20, as I wanted to try to live a normal life, without any external help. I went to university but I left when I found a job in a big bookshop, where I love what I do. I love what I’ve learnt but now everything is becoming hard.

Dealing with skepticism

It’s even harder to deal with when you’re not only ill, but people also don’t believe that you have an illness – or they suspect it might be something else.

For example, I remember I was at the convent school and a nun sent me a harsh letter, which said she was very worried about me consuming heroin – she mistook my tremors for the withdrawal symptoms that drug addicts experience.

“A nun sent me a harsh letter, which said she was very worried about me consuming heroin”

She also called in my mother to tell her I was using drugs. I left that school after this happened. When there’s pressure to prove you’re ill, you are not pretending.

Without proper diagnosis, people believe you even less. And it’s even worse when you’re too young to understand what is wrong with you. Sometimes people thought I was attention seeking, they didn’t take a child in pain seriously. Someone even talked about behavioural troubles linked to my age.

Children on the inside

People should remain children on the inside. It’s when people lose their innocent and spontaneous side that things go wrong. Also educational sessions at school would be useful, for both children and parents.

My main problem has always been the feeling of being wrong without being responsible – or even knowing what was wrong with me – before and after the diagnosis.

I can’t complain too much, I have my ‘breath hours’ thanks to levodopa. However, when it’s too hot in the summer and events of life make me feel depressed, I often stay at home and nobody visits me. This is the heaviest burden: the isolation of minorities, defined by people’s fear of what they perceive to be different.

Live without fear

Children have a special instinct, something similar to animals. They just follow their nature. For me it was natural to seek refuge at my granddad’s house. He was already very old and had a bad heart.

I was his caregiver and he was mine. Despite his difficulty moving, he always cooked risotto for me and bought me Nutella, things that my mother forbade me at home…

What I’ve understood is that when people are at the extremities of life’s spectrum – the young and the old – they are not trapped in social roles.

With my granddad, I was sure about the affection we had for each other. We didn’t see each other very often, as we usually stayed in our rooms, but sometimes we went out and had a chat. That’s the way we helped each other.

“On National Day of Parkinson’s in Italy, I would like people to go beyond their limits”

I also lived near the house of a lady called Luciana. She was like my second mum because I could just go and talk to her. She allowed me to attach my drawings to her kitchen wall and to watch her cooking. I loved doing these things. That’s what I did from the age of 6 until I was 13.

This was a friendship where age didn’t matter, like the one with granddad. Then unfortunately Luciana died. They were two free people who gave me the strength to go on. I’ve found the rest in myself.

On National Day of Parkinson’s in Italy, I would like people to be themselves. To be able to tell the world “that’s the way I feel”. Without fear. Without compassion from anybody. I would like people to go beyond their limits. And live.

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