Members stories look at living with Parkinson’s from a variety of different perspectives. Sometimes it helps to read about the journey of others. It is hoped you feel more connected and seek support when needed.
ParKanDo welcomes new members. Feel free to join no matter where you are in your Parkinson’s journey. With a variety of targeted activities available, you will be sure to find something to meet your needs.
“Sometimes, reaching out and taking someone’s hand is the beginning of a journey. At other times, it is allowing another to take yours.” Vera Nazarian The Perpetual Calendar of Inspiration
There are many sayings about being on a journey: “A journey of a thousand miles begins with a single step.” (Lao Tzu) and “Everyone is handed adversity in life. No one’s journey is easy. It’s how they handle it that makes people unique.” (Kevin Conroy) Many of these reveal elements of truth but they can seem a little trite and sometimes often hard to accept when faced with this thing called Parkinson’s.
We are uncertain as to the future; what lies ahead for each of us in this life? Will I have the strength to cope with what life continues to throw at me? How long is this journey and what is the destination? In all of this, there is one certainty. Any journey always seems shorter and more bearable when accompanied by someone close to us: someone who knows our strengths, our fears; someone who has seen us at our best and in our not so fine moments. They know us for who we are and love us unconditionally.
Carmel and I have been on our journey together for nearly 50 years, having met in our final year at school. We have had a not unusual life: two wonderful children and four beautiful grandchildren (I know that’s a proud father and grandfather talking but, hey, we all do it), built, bought and sold houses, travelled, met and made many friends over the years and made some good and not so good financial decisions.
Over all this time we have done most things together, giving strength and support to each other whenever the need arose. Since Carmel was diagnosed with Parkinson’s I believe our relationship has deepened. I stand in awe of Carmel as I watch her refuse to let Parkinson’s define her. She fights against it so strongly every day in so many ways; each day revealing the depth of her strength and her determination. My role as her carer has increased over the past few years and this has revealed to me more about myself: my ability to cook has definitely improved (well, I would like to think so and so long as it is a simple meal) and my ability to handle the day to day challenges are but a few examples.
If this is truly to be a journey we both share, as a carer I see it vital that:
- We each must communicate our feelings and what is happening to each other. It is easy to be stoic but an “I’m ok and just let me work through this” attitude (which seems to apply more to men across the board than women) does not do anyone any good. It only exacerbates a divide that becomes harder to bridge. As carers, we can’t help if we don’t know what is happening.
- Both of us need to attend appointments with the neurologist for having that second set of ears makes a huge difference in post-appointment discussions. It is very easy to focus on what your neurologist has just said and miss the next few points he/she may make.
- Where possible we, as carers, need to step back and let our partners enjoy as much independence as possible. It is too easy to fall into the trap of trying to help too much. Again, this comes back to effective communication between us.
And so, the journey continues and really, deep down, we know that we are not alone. If we truly look around we will see others just like us walking that same journey so please reach out and allow another to take your hand.
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
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
- 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.
- 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.
My story begins many years ago now that I can look back on it. I lost my sense of smell in the 90s, but I didn’t realise it and certainly didn’t bother about it. It was just an inconvenience until one day we were visiting our son’s and I turned on the gas while cleaning the stove. Without our daughter-in-law’s quick thinking who knows what could have happened. Yet, I still didn’t think to check it out.
By 2001 I was having falls and finding it a bit hard to walk especially if I was tired. I was also having shoulder pain that was put down by my G.P. as a frozen shoulder. As I later found out all were symptoms of Parkinson’s.
At this stage, I was working as an EEG Technician for neurologists, but it wasn’t until March 2007, when I was 53 years old, that my symptoms were really noticeable and one of the doctors pulled me aside and asked me how long had I had the tremor in my left hand. By now, I was very good at hiding the shakes in my hand and so I was amazed that he had seen it. He said he had been watching me walk and thought that I had Parkinson’s. He was a neurologist who was mainly treating epilepsy and general neurological patients. He said he would treat me but, as I worked for him and he didn’t treat too many Parkinson’s patients, he could refer me to a neurologist who specialised in Movement Disorders including Parkinson’s.
I don’t know how long it would have been before I was diagnosed if not for that doctor as I had been to my GP on a number of occasions around that time and he couldn’t see anything wrong. I am grateful to that neurologist, for it meant that I started medication sooner rather than later and so I was able to get on with my life.
My husband, Peter, and I have faced this together and without his support (& pushing me at times) I would not be anywhere near as good as I am today. He is my rock upon whom I rely every day and now with ParKanDo he works to make my life better and everyone else’s too. ParKanDo came into our lives with Pam West and it has been a great experience and has made us reach out to other people and get to know others in our new city.
After my diagnosis, Peter & I found out as much information on Parkinson’s as we could and I realised that exercise was going to be a big part of my life from then on. This was a complete change for me because up until then I was busy raising a family and working. So, I exercised and got on with life. I started doing Dance for Parkinson’s and Strength and Balance classes in Brisbane and began again when they were trialled very successfully by ParKanDo in Melbourne’s west.
For many years my Parkinson’s was stable and, while I took my medication, it was not really a problem. We were able to travel (we did three trips overseas) and enjoyed seeing our four beautiful grandchildren beginning to grow up. We lived in Brisbane and our children were all in Melbourne and so I travelled up and back frequently. I was even a Gold member of Virgin Club! Things are very different now as far as travel is concerned but we have been fortunate to have been able to move to Melbourne to be closer to our family.
I was going along fine until mid-2019 when, suddenly, things started to go downhill with my medication not lasting 3 hours. I had to do something about it. So, together with my neurologist, we decided it was best to have DBS at the end of 2021. Such a decision must be made by each person individually, but it has been a very positive experience for me. It has been 10 months since having the surgery and I am off all Parkinson’s medication now and I am much more alive and can enjoy the time spent with my children and grandchildren once again.
After lots of reading and talking with others, the only advice I can give to anyone is to exercise if possible. The best advice I have been given came from a neurologist who said, ”Find a neurologist who specialises in Parkinson’s & Movement disorders and who is younger than you because you will be seeing them for a long time.” And so, my journey with Parkinson’s continues.