About Parkinson’s

Parkinson’s disease is an incurable progressive debilitating neurological disease. All of those words are scary as individual words but as a complete sentence can seem terrifying.

Even the prospect of possibly having Parkinson’s can induce a feeling of dread without considering the shock of being given a diagnosis. A diagnosis of Parkinson’s is made by a medical specialist most often a neurologist.

Could It Be Parkinson’s?

Symptoms indicating the possibility of how you  are feeling being due to having Parkinson’s:

  • Slow movement
  • Tremor
  • Loss of smell
  • Depression
  • Writing changes (e.g., writing becomes smaller)
  • Non-swinging arms while walking
  • Fatigue
  • Voice gets quieter and less fluent
  • Pain especially shoulder pain
  • Constipation
  • Bladder problems

For more details and a good reference, please see this link.

Getting Started

So you’ve got your diagnosis. What now? Breathe. Tomorrow will look much like today. The world is not about to end. Stay calm and in control or else go outside and scream. It may take a variable amount of time for you to process what this all means once you have recovered from the initial shock. Breathe again. Repeat after me, tomorrow will be much like today. In fact you may actually feel better because you now know what’s wrong with you. And you might have been started on medications which will hopefully make you feel better.

First thing, make no life changing decisions immediately. Nobody knows what’s going to happen in the future. The good news is it’s not going to kill you. Many people live with their Parkinson’s for 20 to 30 years depending on their age at diagnosis. Parkinson’s has been described as a designer’s disease no two people with Parkinson’s will experience the same symptoms or course of the disease. There are many variations of what will happen next and over the next 20 years.

Telling Others

While you are in the state of shock and coming to terms with this life changing news it could be difficult to explain what is happening to you to your nearest and dearest. They will have questions which you are most unlikely have the answers to. So the timing of telling family needs to be carefully considered. Each family has its own dynamics which maybe altered by your news. Your family will understandably be concerned for your well being and may react in many different ways.

General advise about telling others is keep it simple. Tell them what you know and try and explain that are many things that you don’t know the answers to. A useful book is Positively Parkinson’s by Ann Andrews.

Next decision is if you need to tell your employer. It is hard to give guidelines on this. Some people maybe obliged to tell their employers due to the nature of the job. It is not an unreasonable fear that disclosing your Parkinson’s may have negative effects on your career prospects. Some employers are particularly accommodating while others may react in a more negative direction.

Your Future with Parkinson’s

Things we know

  1. Your symptoms may get worse.
  2. You will get new symptoms.
  3. Symptoms tend to fluctuate in no particular pattern.
  4. Most people with Parkinson’s find the so called non-motor symptoms more troubling than the motor symptoms.

Things we don’t know

  1. What symptoms you will get in the future.
  2. What symptoms you will not get.
  3. The rate and the timing of the worsening of the symptoms.

What can you do to help yourself

  1. Educate yourself.
  2. Identify positive people who are going to be of benefit and provide support to you by joining People with Parkinson’s you will hopefully find such people

How We Can Work With You To Help Yourself

“We focus on the person not the disease”

  • You will meet people who are interested in you
  • You will hear about how others cope with living with Parkinson’s
  • You might enjoy a slice of Parkinson’s humour with an Auckland flavor
  • You will have the chance to share your journey with others
  • You will experience the strength of the group and the compassion of our members