Ross

Welcome to the ‘Young Parkies’ Club to those newly diagnosed. I warmly welcome you to “Club Parkinson’s”. Some of you may have heard of Club Med, well it’s absolutely nothing like that.

Although you may not necessarily feel it you are very special. This is a very exclusive club and has boasted among its membership some very important people including Salvadore Dali, the previous Pope, Michael J. Fox, Muhammad Ali and our own Don Chipp and Sir Zelman Cowan. (I won’t mention Adolf Hitler).

In a way you should feel quite privileged - you cannot apply to join this club – you have been selected by some unknown process, depending on what you believe, but I think probably because you have the courage and inner strength to be able to deal with some of the more demanding requirements of this club. I am sure it won’t surprise you that it has been recently reported that cub membership is only open to those with a higher intellect.

I have been a club member for the past 13 years – & I know some of you are thinking “How can that be – he looks so young!” But despite what some continue to think – there is no minimum age entry requirement although it appears there is a distinct preference for people aged over 55. I happened to be just 32 when I was conscripted – although I like to think that I have always been progressive and ahead of my time.

In line with today’s political correctness “The Club” does not discriminate against age, sex or race. I know the club must be important because I was denied membership for the first four years that I was eligible – doctors tried over that time to enlist me in other associations, such as the Chronic Fatigue Club, or the Psychologically Imbalanced Club or that good old fall back …. the Too Hard Basket Club.

But being a Member of this club does have its rewards: “The Club” will tailor its benefits to each member but some of the more common benefits open to all include the following:

• Unlike many other clubs there is no restriction or qualifying periods for life membership – you get that automatically straight away.
  
• There is no joining fee or cost – or at least no monetary one.
  
• You get the chance to develop a special relationship with important people who you may not ordinarily have the opportunity to do so – like your local pharmacist, and to borrow a thought from that famous observational comedian Jerry Seinfeld we know that a pharmacist must be important because have you noticed they always stand higher than everyone else on a raised platform. And they wear a white coat.
  
• You get the opportunity to reinvent yourself – I used to be a detective with the Victoria Police locked into a 50 hour plus a week job. “The Club” allowed me to break free from that and get in touch with my more feminine, caring and sharing side spending more time with my two young children and develop my homemaking and culinary skills. At the moment the Club has allowed me to reinvent myself – if only I knew what as. At least I now have more free time to do the things I want to – rather than have to.
  
• I believe club membership can make you look younger. Forget about costly Botox therapy. The mask like lack of facial expression, a characteristic of Parkinson’s, can actually limit the number of lines and wrinkles on your face giving you a more youthful look – for free. In fact, although it has not been medically or scientifically proven I have a theory that having Parkinson’s can actually extend your life span.

You may or may not be aware but the Madagascan giant tortoise can live to be in excess of 200 years old. During the 1770’s Captain Cook presented a fully-grown giant tortoise to the Queen of Tonga. This tortoise died in 1966. One of the reasons suggested for such longevity is the fact they move so slowly and take a long time to wear out their bodies. I don’t see too many with Parkinson’s moving quickly.

I have had opportunities that would never have presented had I not been in “The Club”. For example, I was selected to be the lead rider of the 2001 Motorcycle Riders’ Association Toy Run involving 15,000 motorcyclists – This was the first and only time a non celebrity has received this honor – which is probably the motorcycling equivalent to being the King of Moomba.

I have had the opportunity to develop my writing skills and become an author of sorts. During August 2001 an article I wrote was published on the front page of The Age newspaper. Or perhaps they were just short of news that day. I have been given travel opportunities as a result of club membership. Over recent years I have traveled to a small village in Brazil to discuss the term of my membership with a spiritual faith healer. I don’t want to appear disloyal – perhaps it’s just my rebellious side emerging, it’s just that I don’t believe life membership should be mandatory.

With the benefit of my experience combined with a little hindsight I offer some advice to you:

• Beware of people offering you a cure – basically because there isn’t one. This might seem contradictory to my previous comment about the faith healer – but there is one significant difference – the faith healer offers his service for free.
  
  
• Make sure you find a good neurologist, preferably one with a special interest in Parkinson’s but more importantly someone who you feel comfortable with. After all you will have a long association with this person and I think it’s important that you like them and it is someone you can relate to.
  
  
• Take an active interest in the management of your Parkinson’s. You are the best judge of the effectiveness of your treatment and the control of your symptoms – not your doctor or neurologist.
  
• Try to stay as fit and active as possible – obviously you can cope with anything better the stronger and fitter you are and will help promote and maintain independent living. I think the phrase “use it or lose it” takes on greater relevance in PD.
  
• Be aware that your symptoms may be exacerbated by subtle variations from the usual. Mine are worse if it’s too hot or it’s too cold, or if I’m too tired or too stressed. So look after yourself. Although it is really tempting to do so
  
• you can’t compare your symptoms or rate of progression with anyone else’s. Every one’s experience with Parkinson’s is as unique as the individual themselves. I suppose this just adds to the mystery and excitement of it all.
  
• Be aware that depression can be an issue. As dopamine being the chemical we don’t make enough of is important for smooth movement and muscle control – it also plays a role in stabilizing mood.

Join Parkinson’s Victoria they offer a great service and will get a stronger voice through a larger membership. They are hard working and dedicated but need your support so they in turn can support you.

Consider joining a support group – as much as other people might care no one really can understand what you are going through like someone else in similar circumstances there is much to be gained through this contact a good opportunity to share ideas, pick up new coping strategies or just have a chat without feeling the need to try and hide symptoms or feel self conscious or embarrassed.

And if you can’t find a group that you feel comfortable with or that you can relate to create your own. I did. I have cultivated a close group of about 10 or so mostly young onset people who meet on an informal basis every few months.

Although you get Parkinson’s seemingly for life it need not be a life sentence. Reinvent yourself because you will inevitably change and become different. But you need to first acknowledge that there are no negatives in life only new challenges. And as we all know, but at times need to be reminded It is through being challenged in life that we get the opportunity for personal growth.

And I assure you Parkinson’s will provide plenty of opportunities for personal growth again at no charge.
I used to have to go to extremes for a challenge like compete in triathlons or jump from aeroplanes albeit with a parachute. Now I have the convenience of being challenged every time I walk out the front door.

For example, to take a dog for a quick walk around the block for a normal person would be a pretty straight forward exercise with no opportunity for personal growth pretty unchallenging. When I tried to do the same thing recently it was a slightly different story. One bright sunny Sunday morning, after I had taken my medication I thought I would take our bull terrier pup Rex for a quick walk. I had only gotten around the corner and about 300 metres from home when quite unexpectedly my foot cramped and brought me to a grinding halt.

As circumstance would have it this happened opposite a café complete with outside diners enjoying their breakfast. Little did they realise that for the next hour they would have some entertainment as well. Trying to balance tottering on one leg and keep an exuberant bull terrier pup under control is not an easy task and my antics soon caught their attention.

After about half an hour of this a local junk mail delivery man approached me. After learning of my predicament his advice was that I should try wearing stockings, as he did I didn’t want to know why he had his bright orange hair tied back in a bun and was wearing drop earrings. And while he was making the most of his captive audience (me) Rex obviously got bored and at that moment suddenly found my leg very attractive. which he attached himself to as only dogs can do. And the dining audience continued to look on.

Just when I thought things couldn’t get any worse I felt an incontinence attack coming on. I thought about trying to crawl home but apart from the lack of dignity I thought it might be too much for Rex in the frame of mind he was in to see me on all fours. I finally managed to attract a neighbour’s attention who allowed me to ring for assistance.

Out of this character building exercise in humility I’ve learnt never to go out without a mobile phone and Rex has since been de-sexed. I have learnt also that timing of medication is critical.

I think with any chronic illness it’s important to have something to really throw yourself into, something that really absorbs you, whether it is stamp collecting, gardening or motorbikes. Something to lose yourself in and escape from the everyday.

I have ridden motorcycles for the past 24 years and its interesting, to me anyway, how my choice of motorcycle has reflected my life at the time. As pets are often said to reflect their owner, so for me a vehicle is an extension of one’s self.

My first ten or so motorbikes were very sports oriented but in 1993, about the time I developed by first Parkinson’s symptoms the style of bike I had previously loathed and ridiculed as being ugly, slow, erratic, unreliable and antiquated would become an obsession which I couldn’t explain, at least then anyway.

The Harley, or Hog as they are affectionately known, was black in colour, probably to acknowledge that I was perhaps in some kind of mourning, and was slow and shook a lot. But what’s wrong with that.

The Harley was good for me, and good to me. Easy to ride, it vibrates so much that it conceals my tremor. It offers a comfortable Jason recliner like riding position. The Harley is sympathetic to my now slower reflexes and coordination, yet it has inner qualities. It commands presence. demands respect and has an under-lying power.

For all these reasons, for me the Harley is very therapeutic. Apart from being a great way to travel, it gives a sense of freedom, allows for escapism lets me forget about Parkinson's disease, about levadopa, about dyskinesia and dystonia. Forget about muscle rigidity, tremor, and embarrassment. Forget about feeling disabled and weak life is still good high on the hog …

So, welcome to the club and make the most of your membership – because it’s really all up to you.

Ross  2006