“Acceptance doesn’t mean resignation.”

As you read these stories, it will become obvious to you that every Person with Parkinson's travels a different journey when it comes to this disease - different set of symptoms, different rates of progression, different responses to medication, different approaches to managing the disease.  These stories are not meant to give advice, only to show differences.

PwP should plan their management of the disease with their specialist, GP and allied health team.

 Just keep on scrolling down. 

Greg has embarked on a focussed journey to keep his mind and body active by learning to play the oboe.  It is a significant challenge both physically and cognitively to play a musical instrument and hopefully open some new neural pathways.

Read about Greg's journey to date in an article titled PLAYING THE OBOE IS NOT ABOUT PLAYING THE OBOE in the link below. 

https://acrobat.adobe.com/link/review?uri=urn:aaid:scds:US:66f5cfc0-6d12-3cbc-97ef-0111ab3fb007

 “That tremor is worse” said the doctor to my wife. And so began a new journey. A journey that not only meant new doctors, new medication but new friends who were all going through the changes to life that Parkinson’s brings. 

If it wasn’t for the new friends it would be easy to think that you were alone on this journey. The way that Parkinson’s manifests differently in each person certainly makes each one’s needs and experiences unique. However a journey shared is not a lone journey. 

My wife and I were helped by Parkinson’s Queensland and especially their regional support group. Meeting other People With Parkinson’s and their carers brought perspective to our lives. There was much to be learned from others. Carers and PWP learned to adjust to changes and still have a good quality of life. Resources and techniques were shared and opportunities opened up to participate in socially important singing and dance groups tailored to PWP. 

That tremor is under control now thanks to good medical support and thanks to acceptance from new friends... we are not alone. 

My thoughts........

I look forward to the first Thursday of the month, to head off to  the city library to join our friends and fellow Parkinsons Support  people. 

After fellowship and a picnic styled shared lunch we usually have  an invited guest speaker to share a topic to benefit us who live with  Parkinson's.

I usually go home feeling good.

My wife (and carer) and I, most weeks, enjoy going to Dance for Parkinson's  at Radiance Dance Academy, I feel great benefit from the dance movements  as well as fun with our dance mates and teachers. As well as the social  interaction, we often enjoy lunch together  afterwards.

On Fridays we have recently joined the Parkinson's Choir.  Although we  don't regard ourselves as singers, we are amazed that we can just blend in: it's quite therapeutic and a lot of fun.

My husband was diagnosed with PD on the 4th August 2016. For me as his  wife, that date is indelibly set in my mind. In hindsight (it's a  wonderful thing ) he was asymptomatic for at least 5-7years and had been  diagnosed with essential tremor by his GP. He had  a tremor in his left arm, was extreme!y tired, loss of smell, unusual  gait, loss of facial expression just to name a few.
 

Our son in law mentioned to our daughter the changes in his walking and  other friends noticed changes but out of respect said nothing.
 

After the initial diagnosis with his Specialist he was put on medication and 6 weeks later on follow up
he was much improved. Simple tests were easier, his general demeanour much lighter and facial expressions not so frozen.
 

Life has continued on, we still travel in our van (safely), he still volunteers but changes were happening. This has necessitated the sale of  our home on a large block of land 40ks north of Toowoomba and the  purchase of a smaller property in Toowoomba. He can  still do all the things that are needed around a smaller home.  It helps  keeping him active and moving, as well as attending an exercise group  for PD people at Blue Care which he thoroughly enjoys.

The upside of that is being able to participate in the activities the  wonderful support group in Toowoomba have initiated - choir, dance for  Parkinson's as well as the monthly support group meetings.  Initially he was reluctant to attend but we did and are so thankful.  It's great to be with people who are in the same situation but don't  dwell on it, share stories, offer suggestions and are just there.  Everyone is so upbeat, friendly and very forward thinking  and we have a lovely group of new friends.

And so life goes on; each day is a new day as we support each other  through this journey, live life happily and make the most of all things  possible.
Thanks for reading "our story".

Thirteen years ago my husband said to me that he thought he might have Parkinson’s Disease. There were no tell-tale tremors but other features were beginning to appear. Unfortunately he was right. In 2009 we finally had confirmation from a neurologist. 

Medication followed the next year and the initial response to that was great – he was back to himself again. We continued working; then retired; travelled overseas a number of times; travelled within Australia; carried on regardless. The PD progressed, the medication increased but I did not feel in any way a carer.

We joined the Support Group. Regular exercise, specifically designed for PD, became a routine. We attend choir and dance. Slowly times have become a bit more difficult. I am now the only driver; shopping together has been reduced to Bunnings (of course!). I have eased into more of a carer role. Fortunately for us the progression of the disease has been slow and we adjust as we go along. Family, long-time friends and new friends from the Support Group have our backs and we so appreciate them all. As Michael J Fox says, ‘Live in the moment, enjoy the day, make the most of what you have.’ 

Whether you live with Parkinson’s or not, it is a good mantra to follow.

My Journey with Parkinson's Disease

One of the first things I noticed was a slight tremor  in my index finger. This was 2009/10.  At first it was hardly anything at  all really. But then I had a couple of what I thought were unrelated  incidents, where my left leg wouldn't move automatically  and I had to concentrate to lift and move it forward when walking. At  around the same time I noticed that my left arm had stopped swinging  when I walked. Finally after several tests and consultations, I received  a PD diagnosis confirmation in 2012.  I had  heard of Parkinson's Disease, but I had no understanding of what this  really meant. So began an intense period of self-awareness, learning and  development, and navigation through a variety of interesting and  challenging experiences, and eventual acceptance  that life would never be the same again. 

I was working two part time jobs; was stressed in other  areas of my life; was constantly fatigued, and found it difficult to  function effectively on a daily basis. I decided in May 2015 to start on  medication to help manage my symptoms. 

The side effects of this medication, together with a  mis-match between my needs and my neurologist's style meant a very  challenging 6 months followed during which I became quite ill. I  subsequently stopped taking the medication.

During this time I began working with a naturopath to  try to get my system back into balance. Under her guidance I started  taking  homeopathic and herbal supplements and followed a nutrient rich  eating program, and began meditating daily. I  was already attending Blue Care's PD exercise program, and taking  weekly yoga classes. I continued walking and cycling for pleasure. I  began to understand that stress and other lifestyle factors were  contributing to the disease my body was battling.  I began  researching in earnest, became more discerning in my personal  interactions and trained myself to rest when I was tired instead of  pushing through as I'd always done. In July 2016 I started seeing a new  specialist who prescribed different medication.  Within  a couple of weeks I began to feel more positive and in control. 

*To be continued.........