Friends for life

21 Feb 2012 by Laura Lewis

It was a shock being diagnosed with Parkinson’s disease (PD) at the young age of 47. In those early days, I was anxious to know what to expect and I spent hours scouring the Internet for symptoms and treatments. It was full of bewildering terms I did not understand like dyskinesia and others I dreaded like dribbling. Nowhere did the websites tell me that it was going to be easy. There were many uncertainties: how would PD progress?; what it was like living with PD?; and how long would I be able to work? I wrongly assumed that the medical profession would be able to give me answers to these questions, but later discovered that Parkinson's symptoms vary in their sequence and intensity between individuals and there was no way of clearly predicting what lay ahead.

The best types of support I received from my family and friends were distractions. My husband and I took many short holidays mostly to places that are remote where I could enjoy the geographical features and submerge my mind into the subject I loved and had taught for 26 years. My friends encouraged me to carry on with my normal activities such as singing in the choir and going to the gym instead of hiding away.

The other type of support I needed was from someone actually suffering from Parkinson’s who could tell me the truth and give me tips about living with PD. Then one day I was contacted by the local Parkinson’s support group asking if I would like to attend their next meeting when the local Consultant Neurologist would be giving a presentation. I was keen to hear him speak, but I was apprehensive about what I was going to see. I dreaded seeing a patient with advanced Parkinson's; a vision of what possibly lay ahead.

The meeting was held in a grim and windowless church hall which allowed in the rain, but blocked out the bright sunshine of that August afternoon in 2001. I kept a low profile by sitting at the back trying to take in what the Neurologist had to say, but at the same time casting my eye over the silent audience. A few were attentive, but many were asleep. Although depressing, this experience inspired me to act. I was determined to set up a local support group for younger people with Parkinson's whose needs were different from elderly patients. Our local Parkinson's nurse put me in touch with another young onset patient and together we worked out our group objectives: supporting; befriending; informing; and having fun. We went ahead and set up a support group and held our first meeting in October 2007, the first of its kind in the district.

Today there are 36 members aged between 40 and 60. We are diverse group with a wide range of backgrounds and interests. We have a Sri Lankan horticulturalist who specialises in making hanging baskets, babies quilts and giving curry demonstrations. We have an IT consultant who runs the website for the group, an artist who specialises in watercolours and a scaffolder whose strength is in making us laugh.

As leader of the group, I had to present a review of the year’s activities last night. We have doubled our reserves, provided new activities for members such as Pilates and hydrotherapy, enjoyed ourselves at dinners, educated ourselves at conferences, and raised public awareness through broadcasts and lectures. Fundraising enables us to run all these activities, but our monthly meetings are where problems are shared and friendships are forged. Another important feature of the meetings is the chance to chat, sometimes about PD. Some of us have lived with the condition for a number of years and have considerable experience in dealing with troublesome symptoms such as poor sleep, dystonia and freezing.

Running a support group has been challenging, but at the same time very rewarding. I see newly diagnosed members arriving traumatised and anxious. Three months later, they are much more relaxed, have regained their sense of humour and the burden of PD begins to recede. I have also made some very good friends with whom I share my ups and downs. Although none of us would have chosen to have this illness, the friendships that have developed from this adversity are for life.

About the Author

Laura Lewis
I experienced the symptoms of Parkinson's disease (PD) during my 40s and was diagnosed in 2000 at the age of 47. At the time I worked as a lecturer in a further education college where I was in charge of geography and environmental sciences, and was Senior Tutor to 250 students. I also held the post of Deputy Chief Examiner in geography for the International Baccalaureate and ran training courses for teachers in Africa, the Middle East and Europe. I worked with PD for 6 years and finally retired in 2006. Since retiring, I have setup a support group for those with young onset Parkinson's in the Reading area. I write in my spare time and have published three geography textbooks.

I have three grown-up children who have all left home and I live with my husband, two fat cats and five tortoises. My hobbies are photography, gardening and breeding tortoises and my philosophy is: "there's no time like the present".