These words were spoken by Michael J Fox and the stories on this page are evidence of this. Many thanks to the members of our Support Group who have given their time and effort to write about some of their Parkinson's experiences. There will be more to come.
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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.
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“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.
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.........
My experience of DBS
I was diagnosed with P.D. In 2007 and commenced on L Dopa.
My major problem at this time was a tremor, mainly of the left hand.
Drug treatment was effective for the first few years but by 2013 the tremor had become harder to control . I was using progressively higher doses of L Dopa such that I was getting side effects from the L Dopa itself. These consisted mainly of abnormal movements and muscle spasms.
I had Deep Brain Stimulation treatment inserted in 2013. Post operatively, I underwent a mood alteration such that I became manic, this lasted for around 2 weeks. The tremor control was initially very good, this lasted for about 48 hours then the tremor returned. We attended a clinic run by the nurse coordinator who adjusted the settings for the DBS. She was very good and conscientious but it took about a year before the tremor was well controlled.
Since commencing the DBS I am still on anti-Parkinson medication but I require much less L Dopa to control the tremor. The DBS is not effective in controlling the slow movement or the freezing. Speech impairment can occur, following the DBS I developed a stammer. Originally, I had a non rechargeable battery for the DBS these have a limited life so in 2017 this was replaced by a rechargeable unit which I recharge about every 3 days.
Precautions need to be taken when exposed to various equipment and procedures.
DBS has certainly been worthwhile for me.