Nerissa’s Story

Nerissa's Story - How being diagnosed with Parkinson’s improved my dance moves

Nerissa was diagnosed with Parkinson’s at 28 years of age. This is the first in a series of articles by Nerissa as she shares her journey.

As a young healthy woman the last thing I expected was to be told I had Parkinson’s Disease. Looking back there were a number of symptoms indicating that something serious was wrong. But at 28 years old I had absolute faith in my body’s ability to heal itself.

It all started with a fall on the netball court. I tripped over a stray leg and fell on my arm. I cried - that was the most annoying thing. My hand was badly bruised and took a long time to heal. Once the bruising subsided my typing skills didn’t return. I went from 60 words a minute to being a ‘one finger’ typist. I was convinced it would get better with time and when it didn’t, that I just needed a bit of physio.

After a while, people began to comment on how slow I was – always the last to get my jacket on, the last out the door. I couldn’t understand why it was taking me an extra half an hour to get out the door in the mornings. I wasn’t wearing any more make-up than I used to, I had always blow dried my hair…. I started cutting out breakfast to speed things up but even this didn’t make any difference.

My moves on the dancefloor became limited to a single motion my friends nicknamed ‘the shoulder’. It involved standing in the one spot – on an angle - moving my right shoulder up and down. My friends thought it was quite sophisticated and got a lot of enjoyment out of mimicking me on the dancefloor. It is obvious to me now why it was my signature move – my left side just wouldn’t come to the party!

I also became famous among my friends for my disco naps – having a sleep in the afternoons before going out that night. One friend in particular would always call in the middle of my nap – “You’re having a disco again?!” I was tired!

Eventually, other aspects of my life became increasingly difficult and annoying. Negotiating a knife and fork was a constant source of frustration and embarrassment. At a corporate function I felt compelled to make up a recent accident as an excuse for my inability to serve myself.

Change rooms became the enemy. I would struggle to get the clothes on and off and always took forever to try things on. One occasion nearly ended in tears when I couldn’t get a top off and started to panic, which made things worse. Eventually I got it off but it was a slow, arduous task, with many helpful queries from the salesperson.

In winter getting my jacket on was a struggle. I could never seem to find the left sleeve and when I tried my arm would shake. Friends would always offer to help. One lovely friend told me I was the slowest person she knew…

It’s funny how as a young person these things really didn’t concern me. In spite of these signs I did not question my body’s ability to heal itself. I wasn’t concerned when my GP referred me to a neurologist for what he thought was nerve damage, or even when the neurologist recommended a set of MRIs on my brain and spinal cord. I was convinced he was only crossing the serious things off the list.

It only began to sink in when in telling a friend I realised for myself that neurologists don’t refer people for brain scans for no reason. Anything that affected the perfect running of my body was my health.

It all happened fairly quickly from that point. The shock diagnosis, the dexterity and levadopa response tests. The dexterity tests were humiliating and revealed that the extent of the symptoms were more wide spread than I thought. The idea it that it was contained in my arm was somehow ok but the revelation that the Parkinson’s Disease affected my entire left side was shocking. The diagnosis was confirmed.

I have been taking an agonist, Cabaser, for around ten months now. In the first few months the nausea was like being hit by a truck. My appetite disappeared and I had to force myself to eat. I have lost a noticeable amount of weight which is sometimes difficult to explain to friends and family. Now that my dosage has evened out the nausea isn’t as much of an issue anymore but I would like to put some of the weight back on...

The best news is that my repertoire of dance moves has increased and now incorporates almost my entire body – both sides! I am enjoying time spent in change rooms these days – my credit card will indicate a little too much! – and am a touch typing whiz.

One particular milestone was shared with passers by in the city lunch time rush. Feeling my body moving more freely I caught my reflection in a window and noticed my once stationery left arm swinging freely. I stopped in dead in my tracks and rang my dad and boyfriend in tears.

Although life has gotten a whole lot easier since I started taking Cabaser, 2006 has been the most difficult year of my life to date. Despite having undergone counselling for depression I achieved some pretty great things last year. I completed the first year of a post graduate qualification; received a pay rise, a bonus and a promotion; and raised almost $1,000 for Parkinson’s Victoria just by having friends over for a few drinks.

And I’m still playing netball!

Nerissa 2006