Member Stories

As a primary school teacher, I taught across the metropolitan area. Teaching was my whole life, I envisaged teaching well into my 70’s because I thoroughly enjoyed it. The more difficult the students, the happier I was. I loved the challenge of proving to these young people that there were people who cared about their future and successes and believed in them.

Life has given me a few challenging experiences and because of these I am who I am. When I was diagnosed with Parkinson’s I saw it as another challenge. How naive was I! I had heard the word Parkinson’s a few times and knew that Michael J Fox had it but I was ignorant of the signs and symptoms and of the impact it had on the individual’s life.

Pre Parkinson days I loved dancing. With an Italian background, music was seen as a way of healing the soul. Dancing frees me from the shackles of Parkinson’s and liberates me mentally and physically. I still dance by attending classes with Dance 4 Wellbeing and Parkinson’s run by the lovely Katrina Rank. I have met some lovely people through the program and look forward to each class.

The extraordinary feature about Parkinson’s is that you don’t see it coming. I equate it to being like a hungry tiger stealthily encroaching its prey. You’re aware of its impact when the condition has developed and you begin to notice that certain body movements, your level of balance and your response to questions and directions has been compromised.

What were the signs?

Before I was diagnosed by a neurologist, I was experiencing falls and I noticed my balance was compromised. I knew that it couldn’t be too much drinking because I was a teetotaller! I put it down to being tired and working too hard at school. My falls I thought were due to my inherent clumsiness.

As the Parkinson’s progressed, there were subtle changes in my walking, and I lost coordination, impacting my ability to dance. I was dragging my left foot and losing the ability to grasp objects without dropping them. Family were confused and concerned by changes in my personality. My sense of humour changed and I was slow to respond to questions. The blank look and incomprehensive glare on my face, I soon realised are common Parkinson’s systems.

I was hurt by my family’s impatience and felt they were being intolerant to the fact I was ageing! Within myself, I believed I was operating at my normal level of competency. Physically, I felt unwell and lacked sufficient energy to do things. At times I felt I was pushing a boulder up a steep hill. Also, my voice seemed to be changing. It became softer and sometimes petter out. Students made me aware of it because they couldn’t hear my instructions clearly.

Depressed and feeling sad, I didn’t know why I felt this way when I was happy in my work and worked well with my colleagues and family. I just put it down to working too hard at school. Another indication for me was that my feet remained glued to the floor whilst the rest of me wanted to push forward to walk. It was at this moment that I began to think something was not right.

So, I made an appointment with my physiotherapist thinking it was back problems. As I entered the room he asked if I had had a stroke because I was dragging my leg so much. Once I told him that I hadn’t he wrote a referral to give to my GP who then made an appointment for me to see a neurologist. The neurologist diagnosed Parkinson’s Disease and that I was already 70% into the condition.

He reassured me that the medication he prescribed would improve my condition. I felt better as soon as I took the first tablet. I cried with relief, I thought it was a miracle because I could do all the things that I had been unable to do for such a long time. For the next few years I was able to live life as a “normal” person.

How I reacted and Family – my emotions and determination

Family
My family were devastated when they heard and read about the symptoms and the gradual decline that occurs in the individual. We all made it a priority to educate ourselves about Parkinson’s. My younger siblings had me participating and enrolling in programs that involved brain stimulation, exercises, dance, walking and that my diet was providing the right essential vitamins and nutrition.

Most of the information came from Parkinson’s Victoria which explained the condition in appropriate language that we could all understand. My neurologist suggested that we not tap into Dr Google because no two cases of Parkinson’s are the same.

It’s important to share your fears and apprehension with your loved ones because it enables them to express their fears and concerns and together you can conquer the changes that it brings into your life. Part of fighting this condition is to be positive and be surrounded with people who love and understand how you are feeling. Together you can cope with the changes.

My Emotions and Determination
I am a Spiritual person who believes in a superior being and that we were all placed on this earth for a purpose. Throughout my life I have been confronted with many challenges. Somehow, I always seemed to find the energy and strength to solve the challenge. I believe that life doesn’t throw challenges at you that you can’t solve.

I like to reflect on the question “what is the meaning of life”?  What will my imprint be when I move on? Perhaps people will remember me by the way I handle my Parkinson’s. My Parkinson’s is my biggest challenge and it’s not so easy to solve but I can try.

When I was given the prognosis of Parkinson’s I really didn’t know what it entailed. I was stunned and confused because I had always been a healthy person and rarely suffered from a cold. I remember my sister and I trying to convince ourselves that it could have been worse. It wasn’t until I read about it and realised the complexity of it and realised it was bad enough. My main concern was that it wouldn’t affect my career as a teacher and that I could still continue to work.

Once I stopped feeling sorry for myself, I got on with the task of living life. This was another challenge that life had presented me with and I had to learn to cope with the changes that would slowly occur. In the first four years of the condition no one detected I may have had it. The medication enabled me to work full time, participate in school excursions and camps etc. and my balance and gait were relatively good.

I felt at times that maybe I didn’t have Parkinson’s because I felt great and it hadn’t negatively impacted on my life so far. This is why I equate it to a crouching Tiger because it pounces upon you without you knowing it has hit you.

I have joined a number of wonderful groups such as my Dance for Wellbeing and Parkinson’s, Balance and Strength, painting for Parkinson’s and the PD Warrior Program. The activities allows you to be with like people and gives you a positive vibe and enthusiasm to fight on. The people in the groups don’t see you as having a disease. You are seen as an individual with unique qualities.

Positive and Negative effects, impact on my career

Positive Effects

• Brings family closer.
• It is treatable.
• More literature available.
• Excellent medication and medical professionals to assist.
• Community awareness.
• More medical research being done.
• Like people gathering and sharing experiences.
• It takes you to another level of being.
• You develop a new appreciation for nature and the little things in life that you may have taken for granted.
• I now have time to do volunteering work with the Lions Group.

Negative Effects

• Anger and frustration – sometimes people don’t understand that you can’t do what you used to do.
• Limited movement – stiffness, imbalance, tiredness and other health complications may arise
• Reliance on others for assistance.
• Learning to do simple things again e.g., writing.
• Physical activity is comprised – I am not as active as before.
• Retiring before your time.
• People treating you as though you have a brain injury because you’re a little slower in your movements.

How I feel today

I have now had a Parkinson’s diagnosis for eight years, although I had it long before diagnosis. Where has the time gone when you’re having fun.! Some of my bravado coping with Parkinson’s has dwindled but I try to keep my courage up and not be too overwhelmed with the changes.

I have become slower in my walking; it takes longer to get organised, there are days that I feel down, but a good movie or book soon lifts my spirits. Some days I am on top of it but other days I revert back to the “why me” stage. But this stage soon dissipates and I get on with life.

The positive aspect of Parkinson’s is meeting other people who understand what you might be going through. I am thankful that I have met some lovely people who have become part of the tapestry of my life. I am extremely grateful for the love and care of my family and friends, for all their love and kindness.I hope I haven’t bored you. I tend to go on until I’m told to end it.  Thank you to Pam, Peter and Carmel for giving me the opportunity to share my journey of Parkinson’s with you.

My story starts with severe coughing when eating and drinking. My GP tried several tests without finding a problem. Finally, a speech therapist had me eat a cookie which showed abnormalities in my swallowing technique.

I was sent to a neurologist who confirmed I had Parkinson’s due to drooped facial expressions. I felt my whole world exploding in front of me. All I could see was my wife, our 4 boys and our 8 grandchildren. I felt I was about to lose them because of this diagnosis.

As the condition progressed, I developed tremors down my left side, was having hallucinations and had lost my sense of smell. After some trouble with medication, I sought a second opinion and moved to Professor Malcolm Horne, head of Parkinson’s research at the Florey Institute. He explained that Parkinson’s was not a death sentence and how to better manage my symptoms.

A change of medication made a big difference. Since then, I have met and spoken to many people in different stages of Parkinson’s. I have started exercising (very important) and going to support groups which has helped me greatly to overcome my anxiety about my journey with Parkinson’s.

The last couple of points I would like to make are; don’t be afraid to change your neurologist if you are unhappy; put yourself out there and ask for help if you need it; find your local support group (they can be found via Parkinson’s Victoria); include your family in support group meetings as they can learn how to help both you and themselves; and last but not certainly not the least is your I want to thank my wife, my carer. She is the most important person in my life and I know Parkinson’s has impacted her as much as me.

I received a diagnosis of Parkinson’s 12 years ago, aged 51. Over time I have come to realise Parkinsons does not define me nor does it describe who I am. I still have the ability to do things, I just do them a little differently now. It is important to note that Parkinson’s is an individual condition and affects people in a variety of different ways. No two people or their journey is the same. And I am just sharing mine.

I found when diagnosed with a condition that deteriorates and without a cure, I lost part of myself. Upon reflection I realised I went through a process over a number of years to get to where I am today; denial and grieving, followed by acceptance and it might surprise you to hear, empowerment. But let’s start at the beginning.

My journey began in 2007 when my daughter noticed a slight tremor in one of the fingers on my left hand. It was so minor I ignored it. A few years later when it began to affect my capacity to use a keyboard at work and I was tripping over nothing, I sought medical advice and received a diagnosis of Parkinson’s.

My internal dialogue was extremely negative. The greater the stress, the worse things became. Always a very positive person, when asked how things were, my immediate response was, “I’m great, everything is fine.” Plagued with self-doubt, I was exhausted trying to maintain the façade. The truth was, I was not letting anyone in. So many things I thought were the cornerstones of my identity; my career, my hobbies, my relationships, shifted and changed causing me to lose a lot of confidence.

Without realising it, I was secretly grieving my old life, my healthy body, my dreams for the future. They no longer fit my reality. Who was this new me? At my lowest point I felt I had nothing to offer and for several months was quite tearful and depressed. It was only through opening up to a psychologist, my closest friends and relatives particularly my wonderful daughter that led me to the realisation I was grieving. That realisation allowed me to slowly process and learn to accept.

Acceptance doesn’t mean that I no longer experience ups and downs, but it has allowed me to let go of the things I thought my body and mind should be. By embracing it instead, I am empowered to shift my focus from what I have lost or can’t do to what I can do and have gained.Parkinson’s brought to the fore what really matters and gave me permission to discard the little annoying things.

Retiring earlier than planned, gave me precious time to spend with my grandsons and really prioritise those things I enjoy. With a little self-advocacy, my amazing kids and their partners adjusted very quickly. Understanding that I can do many of the things I used to, just one at a time and a slower. They learnt to assist when needed without taking over, fully respecting my right to make my own decisions and I love them for it.

The amazing thing is, the more I engaged the more confident I became. What has made a real difference to my self-esteem is giving back to the wider community as a Co-Leader of ParKanDo (a Parkinson’s support group). Feeling a weight was lifted off my shoulders, I realised it was OK to be the new version of me.

Early 2017 my neurologist suggested I have Deep Brain Stimulation (DBS) surgery. Wanting to make a fully informed decision, I rang the team at Parkinsons Vic. seeking advice. They suggested I attend their DBS Group. After discussion with a number of post-surgery alumni and various medicos I felt confident that I was making the right choice for me. I had DBS surgery in June that year.

Please remember your feelings are valid, no matter what they are. Whether you are living with Parkinson’s as a patient or carer. Don’t let the beast win. You are not alone. I know it can be confronting and even a little scary to reach out. But we are in this together. You just need to take that first step. Parkinson’s Victoria can assist in identifying the supports in your area to best meet your particular needs.

My journey has certainly been unexpected, full of twists and turns, ups and downs. I can’t predict what is or isn’t going to happen, but I am determined to make the most of now and not waste precious time worrying about the what ifs or what I cannot control.

I leave you with one more thing I have learnt along the way. On any given day I do the best I can and accept that this will differ from one day to the next. Be as kind to yourself as you are to others. I wish you all the best in your journey and hope that by sharing mine it may have helped you in some small way with yours.

I feel in retrospect, that my Parkinson’s began a few years ago and eventually earlier this year (2020) I decided to write a summary of symptoms. They included:

• A slight tremor while raising cup to mouth;
• My right foot catching and right arm not swinging as I walked;
• Trouble swallowing and a raspy voice; and
• Clarity of thought during conversation.

After compiling this summary and with symptoms starting to impact my day to day life, I decided to seek medical advice and was diagnosed with Parkinson’s just as the COVID-19 pandemic hit.

Due to severe side effects of medication I contacted Parkinson’s Victoria and one of the nurses on their Health Team assisted with medication issues and each time I called they have been able to help. Parkinson’s Victoria is a fantastic resource! I was unable to join their recent online Newly Diagnosed Seminar but hope to participate in the next one.

I contacted peer support groups in my area, ParkinSong Williamstown and ParKanDo. I joined both. I receive regular karaoke emails from ParkinSong and look forward to participating in face-to-face activities once they recommence.

Through ParKanDo, I joined Dance for Well-being and Parkinson’s. To my surprise I really enjoyed it. Katrina, the teacher, is very inclusive and knowledgeable about the condition. She explains which muscles we are using for the various movements and it certainly assists with stiffness.

COVID-19 has only made the beginning of my Parkinson’s journey more difficult. However, engaging with Parkinson’s Victoria and ParKanDo’s Dance program has made a difference. I am looking forward to connecting in person once the pandemic is over, knowing already that staying connected really helps.