My name is Dawn Tonge and I am very proud to be asked to participate in this ground breaking initiative by the BCNU I have worked with many of you here today, as a RN, Lobbyist, steward and now EDMP representative and I feel very honored to be asked to speak about coping with a chronic disease. I would like to take a moment to share my story with you. I have been a nurse for 35 years, qualifying and working in the UK, way back in early 1980s. The days of matrons, nursing uniforms and caps I moved to South Africa and worked there for 10 years caring for children and premature babies in the private sector. Both my children were born there and my eldest certainly has a bit of African blood in her, but both adapted quickly to life in Canada. I came to Vancouver in 1995 and worked at BCCH and St Paul s. I have spent the last 12 years working at LGH both on their pediatric unit and neonatal intensive care unit. Some of you may know me as the EDMP representative on behalf of the BCNU. This is a unique and innovative program created to support nurses that are struggling at work, or away from the workplace due to injury or illness. My portfolio covers Richmond area and hospital, the North shore including LGH, Squamish, Whistler, Pemberton, St Mary s and Powell River. Yes I am busy but I feel blessed to be given the opportunity to give back to the nursing profession. So why have I been asked to speak about coping with a chronic illness? I was diagnosed with Parkinson s disease almost two years ago. Up until that time, except for a little bout of breast cancer, I thought I was fit and healthy. I ran marathons, paddled dragon boats and outrigger canoes. I maintained a good BMI, ate healthy food and had a friend a good thing according to the VCH survey put out a few years ago. Then one day I noticed a twitching in my thumb at rest. It persisted and my husband pointed it out on a number of occasions. I wasn t worried; I could stop the twitching anytime I wanted to. It was just my body de-stressing. The twitching progress, it was now happening every time I tried to rest. To satisfy my curiosity, I visited my GP. It s nothing I shared, just annoying, what do you think?
On the story goes, a visit to the neurologist and a diagnosis of Parkinson s disease on my 56 th birthday. Being a pediatric nurse, I really had little knowledge of Parkinson s. On research, I discovered it was a degenerative disorder of the central nervous system. The motor symptoms of Parkinson's disease result from the death of dopamine-generating cells in the substantia nigra, a region of the midbrain; the cause of this cell death is unknown. Gloomy terms Think Michael J Fox During Dan s presentation, I will share with you what helps me to cope with my progressive illness and life in general.
Depression, I have struggled with that in the past. Moving to Vancouver, leaving my support system behind and moving to a new country without a friend in sight. Just trying to find a job in Vancouver in 1995 was a nightmare. Parkinson s disease has a component of depression as well therefore I am trying to be more aware of what I call my life balance. If I am feeling off kilter, not having that usual joy that I generally experience every day, I work through some of the reasons I may be feeling like this:- Am I tired Am I eating well Am I exercising enough Am I working too hard After looking at the possible reasons for the sad feeling, I chose to take control of them If I have been overworking, I give myself permission to have a down day What have I been eating, is it nutritious and healthy? I refocus on planning healthier meals and snacks. I look at my sleep pattern, am I having enough sleep, is discomfort an issue? What can I do to improve the quality of my sleep? Strangely enough resting tremors do not occur when you are asleep but as soon as you are awake, they start. I like to call my tremors, Trevor, he is sometimes shy but today, because of the increased stress that I am feeling, he is making his presence felt. If I have skipped my usual exercise routine, I re-evaluate and make it a priority. During exercise, our bodies produce Endorphins, also known as a "runner's high," These powerful hormones are wonderful things that produce a positive and energizing effect on our bodies. For me, running is my drug of choice because:- Cheap running shoes are the only equipment you need it can be social or solitary I initially started to run when I first came to Vancouver as I needed to try and control my depression. I met up with a group of ladies in a Learn to run clinic at the local recreation centre.
At the beginning we all started at the same level, unable to run a block. We worked up to running for a solid hour and now I have 17 marathons under my belt. As John Bingham says, The miracle isn't that I finished. The miracle is that I had the courage to start." Running is not about the finish, it s the journey. My running ladies are my psychologist, my cheering team, and my shoulders to cry on. We celebrated when my biopsy from my lymph nodes came back negative for cancer cells. They cried with me when I shared my fear about the future of living with Parkinson s disease and supported me with the commitment to hold my Starbucks latte when I cannot no longer keep my arms still! I am motivated by them; I am accountable to them to be at a pre-arranged point. Many of you may say, I don t have the time, it s just an excuse! I meet my group at 5.50am winter and summer and have done for the past 14 years. If I can do it, so can you! It allows you to get your exercise in early in the day and a little social time over coffee before you head to work. My advice, join a learn to run clinic, a soccer team, learn to curl, set realistic goals, get out and experience life... My mantra Life is not about waiting for the storm to pass, it s about learning to dance in the rain.
Relaxation That is difficult for me as I suffer from resting tremors. I do love to listen to music, especially classical, which I do when I am driving. To relax, I enjoy Yoga, the positions and stretching is good for my balance and increasing rigidity. I have started to knit again as I find the gentle movement of the needles therapeutic and prevents the tremors. I now ask when I am in a course or have to sit for long periods if it is ok for me to knit. I am respectful and share the reason with my colleagues. If not, I find the continuous tremors quite fatiguing. I have also started a little knitting group with friends and we meet a couple of evenings a month to work on varies projects and share our knowledge. I also like to walk with my dog, whatever the weather; she is always keen to get outside. I enjoy having time to wind down after a stressful day, or just to take time to enjoy the outdoors.
WORRY I had my first panic attack recently. I was flying over to Greenland to compete in The Polar Marathon. The plane flew over Iceland and we hit very bad turbulence. I have never been a great flyer but this time it was a full blown panic attack. I was listening to some beautiful harp music at the time as I remember The plane was being thrown from side to side, up and down. One side of my brain kept shouting, oh my we are going to die. I was crying quietly, my hands sweating and the heart racing. The other side of the brain said, don t be stupid, relax, planes rarely crash. The battle in my head continued for the duration of the turbulence. Listening to the beautiful harp music helped me to focus and block out a lot of the negative thoughts. I am a little obsessive, my friends and husband may disagree with a little! I do worry about big and small things. I try to identify what I am worrying about. I then break things down into steps and work through them. On returning from my wonderful vacation touring Southern Spain on my motorcycle recently, I had to deal with around 500 emails in my inbox. Another anxiety attack! How was I going to deal this? I took a deep breath and worked through it step by step. By creating a plan and realistic goal of having my emails under 25 by the end of 10 working days took discipline and motivation but boy, it felt so good to achieve it. If my sleep is interrupted by worrying thoughts, I make the effort to get up and write my worries on paper to deal with in the morning. Problems always seem less in day light.
ANGER I really don t get angry very often. I get frustrated when things go as quickly as I would like them to, or I am unable to solve a problem. I tend to make a list in my mind:- What are the issue What can I do to resolve the problem What am I going to learn from this I tend to reach out to others to discuss the issue and find a resolve. I take time to reflect on what I have learned from this experience
ACTIVITY Yes I think I am somewhat of an expert on that one. Many people say they live their lives vicariously through me. I love most forms of exercise that does not require hand/eye coordination. I don t golf, play tennis, soft ball or squash Activity/exercise is extremely important to me. It is my social circle, my support network, my cheering squad, my councilor. It keeps my life on an even keel. The endorphins keep me happy. I run marathons; I have climbed Kilimanjaro with my tough girl group from the UK. I have hiked for 5 days off the beaten track in the Grand Canyon carrying a 35lb backpack. I have run from the north rim of the Grand Canyon to the south rim in under 12 hours. I ran a marathon in Greenland, on the Polar icecap, with my tough girl group. Why? Because I can. I am not a born athlete; I am a slow back of the pack runner that takes time to enjoy the experience. I am heading off to Peru to complete the Inca Trail in June and In October I am once again joining the Tough Girls for an adventure race in Ireland, to run, bike and kayak. Sometime I worry that I will not able to continue run, but I am sure that I can find some activity to produce these endorphins. When I paddled for the Grandragons, dragon boat team, they were an inspiration to me. The majority of the team were well into their 60s and 70S suffering from many medical issues, Alzheimer s, hip replacements, knee replacements and the Parkinson s. They are the Canada senior C champions and they were amazing motivators. If they could do it, so can I
Pain Pain is a frequent initial manifestation of Parkinson s disease. This is caused by the continuous resting tremor and increased muscle tone. Rigidity is also a component of this disease creating joint pain, difficulty in walking and balance. I try not to focus on the discomfort as it s a negative thought but I acknowledge it. I use yoga, exercise and stretching to mitigate some of the effects of this disease. I also find going for a regular massage help to smooth out any tight areas. On investigating alternate treatments, I found that IMS is having a positive effect on the increased muscle tone and is covered under our benefits. I am working hard to listen to my body and acknowledge that I do get tired. This is really difficult for me to do, but I am working on it. I love to find a quiet spot, often in the forest, to sit and reflect how blessed I am to live in such a wonderful country surrounded by such beauty. I ponder all the things I have to be thankful for:- A great job Friends Great children My health, the list goes on.. I also love to read and loose myself in a good book. Listening to music is a great distraction for me as well. I am the person that lives by the glass being half full not half empty. Thank you for giving me this opportunity to share my story. I would be happy to answer any questions.