"My Journey" by Anne O’Donnell

Welcome to our new community series, a collection of deeply moving stories of hope and resilience from people navigating their journey with Parkinson's. This series is a celebration of the incredible strength found within our community, and we have so much admiration for everyone we have met through PD Buddy and Parkinsons Insight. We are starting our journey with Anne, who joins us all the way from New Zealand to share her personal experience of living with the condition. My Journey by Anne O’Donnell Hi from New Zealand as we begin the fall into winter. My name is Anne. I am now 70 and was diagnosed six years ago with PD when my hand tremor became persistent but like most of us, I now realise the early signs were present long before. I will never forget the shock of being given the diagnosis. Despite being a physiotherapist for the last forty-five years it had never occurred to me that this could be happening to me! So my life changed in that instant and once the shock wore off, took a whole new direction. I have always challenged myself in most aspects of my life. In hindsight this has caused me many levels of stress, but I coped with this by learning and gathering as much information as possible, if only to reduce the chance of failure! This information gathering had to become my most useful tool as I worked out my strategy on how to approach this new life. This involved accessing the best advice from people and professionals I respected. First stop was one of my colleagues, a specialised physiotherapist who gave me hope for the first time. She was the first person who said the progression of this didn’t need to be a disaster and that there was plenty I could do to avert this. Like most people I talk to, I thought that because there was no cure, there was also nothing I could do to influence my outcome. So I left there with a plan, categories of exercise that I needed to cover and most of all ….. hope! I accessed a neurologist who specialised in PD so I was covered from the medication and medical point of view. Like so many people, I chose not to take his advice on medication in the early year or so. Looking back, despite being advised to the contrary, I wanted to see what I could achieve on my own. I had the misguided concept that it would be better to wait till I really needed it! Oh how wrong could I be? All I was doing was making life extremely difficult for myself, living under a cloud, struggling and fighting to stay in one place. I would say now – take it and use it to help you to actively fight – to give you energy and hope and quality of life while you can use it to your advantage. My General Practitioner sent me to a Functional Medicine doctor – few and far between here in NZ. She has been one of my strongest allies and was able to access the functional tests and medications which the US seems to be so advanced in. Together we have addressed so many of the basic issues of gut irritability, constipation etc, mitochondrial degeneration and inflammation throughout the body. I took account of my stress count – checked in with a counsellor as to my best approach to managing this aspect and reduced my work load to a more sustainable level. I addressed my poor sleep habits and took advice from my brother who was involved in the Sleep Apnoea field – I come from a long line of snorers and for some time had not been able to sleep on my back without waking myself up, or my partner doing it for me! So my CPAP machine has become my best friend and I go nowhere overnight without it. I sleep like I’ve never slept before! I am fortunate to have a solid family and friendship base and a loving partner to keep me grounded but I very much feel that this is my own journey and I have to spread myself widely so as not to put too much pressure on those around me. Chronic health issues can be very tedious to others and as we age, I find everyone has their own concerns and issues. I have four children and nine grandchildren but none of them live locally so friendships are vitally important, to be nurtured and treasured. I have never loved exercise for the sake of it so had to find things I enjoyed and could achieve. I took up a dance class which challenges physically and also mentally. Any activity which is coupled with a learning and thinking component seems to me to be the most effective form of training. I’d played tabletennis as a child so this was an easy option. My partner’s son was able to coach me - to drag me up to being competent enough to play in a club which I am now really enjoying. It certainly involves all the necessary components of a physical, mental and fun activity! I go to a friendly gym class once per week to do some weights and most mornings if I can’t think of an excuse, I do some basic strength exercises at home. I was also dabbling in calligraphy and had joined a club – this seemed to be the most “at threat” activity with the tremor in the hand but it seems that with a high level of focus and care, this can be managed fairly well and I love the world and the people of calligraphy and the inspiration of their art. And then there’s the music! This defines my relationship with Charlie, my partner – music is his world and this is what had brought us together. I had begun my musical journey as an adult playing Irish music on the harmonica but in these later years had been mainly playing the ukulele and developing my singing voice with a tutor. So these components of voice development, ear tuning and rhythm fitted the PD criteria perfectly. Add to that the memory aspect and performing and I had found the ultimate challenge – and joy! We have a small 3-person band called “Phonic Fever” where we write all our own songs and record them in our home studio. As I researched the approaches to challenging PD, we wrote a song about each of them and Charlie created the accompanying video. Some serious, some funny but all with the purpose of sharing information and inspiring discussion. As the research and song/video collection grew, I realised we had covered all of the Six Pillars, often referenced particularly by Professor Bas Bloem, as approaches to the management of PD. We have developed these into a playlist on YouTube called The Parkinson Project, each video leading with a discussion on each pillar. I see this as a chance to educate and empower people – both with PD or general aging – to realise they have choices and options regarding their future and quality of life. As one of our performances, we present The Parkinson Project live to the community at large, to retirement villages and to PD groups. In my work as a physiotherapist, I take a special interest in the aging population as it has become so relevant! I think of PD as an accelerated aging process to which we need to bring our A game – or a Professor Bloem says – to treat ourselves as elite athletes if we are to optimise how well we live. I see a lot of grief and disappointment in these older years which I mistakenly thought would be one big well-earned holiday. PD steals that certainty from us. I am intensely grateful for sites like PD Buddy as sources for information gathering and for a sense of community. My mission is to inspire people as I was inspired and to hold back that wave of deterioration with determination. This year as I feel my condition is sufficiently stable and my fatigue levels manageable, I decided the time was right to put more energy into helping the PD community as a physiotherapist with Parkinson’s. Through my work in a local Clinic we have begun offering weekly classes covering education, exercise, challenge, fun and a supportive companionship. This is immensely satisfying and who knows where it will go? I am hoping that as we develop, we may be able to include more creative groups, offering music and art. One of my main goals is to facilitate and encourage early diagnosis, knowledge and empowerment in our approach to fighting this stealthy condition which can, before we realise it, sneak up on us, steal our energy, our personalities, our presence in the world. It’s easier to hold onto what we have than to try to reclaim it. See link: YouTube: The Parkinson Project: Charles Greenlees