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

Perspectives

Author: Elisa RovelliPublished: 28 November 2015

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Elisa lead

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 (Italian translation below)

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.

Elisa laughing

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.

Elisa close up

Dealing with scepticism

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.

Elisa & Granddad


Italian translation

Vivevo in un paesino della Brianza ed ero ancora alle elementari quando ho cominciato a sentirmi debole. Presto ho perso l’equilibrio e ho sentito che il baricentro si stava spostando in avanti. Quando il lato sinistro del mio corpo cominciò a irrigidirsi cominciai a trascinare la gamba sinistra. Infatti, consumavo sempre le scarpe sulla punta.

Sono andata da mille dottori: fisioterapisti, neurologi, ortopedici. Nessuno ha mai pensato che fosse Parkinson perché ero troppo giovane, avevo soltanto dieci anni.

Sono peggiorata sempre di più e anno dopo anno sono apparsi altri sintomi, come il tremore e l’instabilità posturale. Anche camminare diventò difficile. Finché a diciassette anni mi ritrovai quasi completamente paralizzata, dal dolore e dalla fatica; soltanto al mattino potevo fare qualche passo senza stancarmi. L’unico sintomo che non ho mai accusato è il blocco del linguaggio, che ho sempre tenuto allenato, e un cervello allenato significa molto nell’impossibilità del corpo.

Prima che compissi diciotto anni mi fu diagnosticata la DRD (distonia responsiva alla levodopa), per la quale i dottori mi prescrissero una medicina chiamata Sinemet. Tutto andava meglio con mezza pastiglia al giorno, ma la diagnosi del 2004 era sbagliata. Successivamente, grazie a test più specifici, mi fu diagnosticato il PARK 2, una forma di Parkinson genetico, era il 2006 e avevo 19 anni.

Quello che avevo capito della malattia era che non dipendeva da me; ma dovevo affrontare il dolore di essere diversa e non accettata dalla società. Anche la mia famiglia non sembrava in grado di aiutarmi; i miei genitori non riuscivano a essere il mio punto di riferimento, la mia lancetta, non ho mai avuto una direzione, non un sì o un no. Mi sentivo sola con la malattia, e questo rese ancora più difficile il periodo in cui non avevo ancora una diagnosi.

Purtroppo sono cresciuta molto in fretta… Quando mi hanno diagnosticato la malattia non ero più una bambina e nemmeno una giovane donna che guarda al futuro, come sarebbe stato normale a 19 anni; allora non ne sapevo niente e pensavo di essere io il problema.

Il Parkinson è una malattia destabilizzante, e le medicine per tenerlo sotto controllo sono soltanto un rimedio temporaneo. Vivere con il Parkinson significa vivere con un taglio alla gola che sanguina continuamente, e io ce l’ho da 20 anni… Sanguina tutto il giorno, salvo nei momenti in cui sono sotto Sinemet e Requip. I farmaci non sono una soluzione; sono soltanto un tampone che fa smettere la ferita di sanguinare per un po’, ma tu lo sai che presto si riaprirà di nuovo.

La consapevolezza della malattia mi impedisce di affacciarmi al mondo come una persona di ventinove anni nel pieno delle proprie facoltà cognitive dovrebbe fare; la crisi è sempre in agguato. Combatto ogni giorno, ma non biasimo chi non lo fa. Alla fine credo che questa sia l’unica vita che mi è stata data e che valga la pena viverla.

Mia mamma non capiva cosa stesse succedendo. Continuava a mandarmi a scuola e quando mi portava dal dottore ci andavamo a piedi o in treno; non capiva che ero sempre stanca e debole per la malattia, ma in qualche modo provava ad aiutarmi. Mio padre non c’era spesso, però mi sosteneva a livello finanziario.

Me la sono sempre cavata con le risorse che avevo e non posso certo dire che il mio ambiente familiare mi abbia incoraggiata facendomi sentire un’eroina, anche perché i miei genitori si rendono conto soltanto adesso, dopo vent’anni, che ho un problema!

Sono partita da casa a vent’anni perché volevo provare a vivere una vita normale, senza aiuti di sorta. Mi sono iscritta all’università, ma l’ho lasciata quando ho trovato un lavoro in una grande libreria, dove adoro quello che faccio, e dove ho imparato cos’è che adoro; ma ora tutto sta diventando più difficile a causa della malattia…

Per quanto riguarda le reazioni della gente, devo dire che in genere nessuno mi ignora, anche perché è praticamente impossibile farlo! Ma le persone che mi circondano si dividono in due categorie: quelle che vedono Elisa e quelle che vedono la malattia, e io ho sempre preferito la prima categoria!

Durante i momenti “on”, le persone non s’immaginano nemmeno che abbia il Parkinson, e non percepiscono che dopo pochissimo tempo la situazione potrebbe precipitare. Invece, quando mi vedono durante una crisi, potrebbero addirittura credere che io sia epilettica vista l’intensità del mio tremore e lo spasmo dei miei muscoli. 

La cosa più difficile per un’adolescente è dimostrare di non stare fingendo. Mi ricordo per esempio quando andavo a scuola dalle suore; una di loro mandò una lettera a casa dicendo di essere preoccupata perché facevo uso eroina… Aveva scambiato il mio tremore con i sintomi da astinenza, e convocarono addirittura mia madre per dirglielo. Dopo questo episodio lasciai la scuola!

Un altro grosso sacrificio di quegli anni fu vedere tutti i miei compagni andare in gita, mentre io ero costretta a rimanere a casa.. Mi ricordo quando i miei compagni andarono a Parigi e io dovetti rinunciare; mi mandarono una cartolina, una lettera e un souvenir, ma io ero comunque a casa.

Tra tutto, poi, c’è anche l’imbarazzo e la difficoltà di dire ai tuoi amici di camminare piano, perché non riesci a stare al passo, soprattutto quando sei nell’età in cui vorresti e potresti fare mille cose.

Ma i bambini hanno un istinto speciale, un po’ come gli animali; seguono la loro natura, e per me fu naturale trovare rifugio a casa di mio nonno, anche se era molto anziano e malato di cuore. Ero il suo caregiver e lui era il mio.

Nonostante facesse fatica a muoversi mi cucinava sempre il risotto, ma soprattutto, mi ‘passava la Nutella sotto banco, perché mia madre mi proibiva di mangiarla..

Quello che ho capito dal rapporto con mio nonno è che quando le persone si trovano alle due estremità della vita, la giovinezza e la vecchiaia, non sono intrappolate nei ruoli sociali. Anche se non ci incrociavamo spesso, perchè trascorrevamo lungo tempo nelle nostre rispettive stanze, quando stavamo insieme e chiacchieravamo, più o meno consapevolmente, ci aiutavamo a vicenda; non c’erano dubbi sull’affetto che provavamo l’uno per l’altra.

A quell’epoca trascorrevo molto tempo anche con un’altra signora di nome Luciana; era come la mia seconda mamma e io l’adoravo perché potevo andare a trovarla ogni volta che volevo.. Mi permetteva anche di attaccare i miei disegni al muro e di guardarla mentre cucinava, ed è quello che ho fatto dai sei ai tredici anni, finché purtroppo non è mancata. La nostra era un’amicizia senza età, un po’ come quella con mio nonno.Erano due persone libere che mi hanno dato la forza di andare avanti. Il resto l’ho trovato dentro di me. 

In occasione della Giornata nazionale del Parkinson, quello che vorrei dire è che le persone dovrebbero essere se stesse; vorrei fossero capaci di dire al mondo: “è così che mi sento”. Senza paura. Senza suscitare la compassione di nessuno. Vorrei che le persone andassero oltre il loro limite, e che vivessero.


This article was translated by Chiara Benincasa

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