The Joy Club member Sandra opens up about her experiences with Parkinson’s Disease and how she came to terms with her diagnosis.
Eight years ago, I was diagnosed with Parkinson’s Disease. It didn’t come as any great shock. Every time I added a new symptom in Dr Google’s consultation room, Parkinson’s came closer to the top of the list of possible complaints. In the end, it was the only condition on that list.
So I visited my GP.
“I’ve got Parkinson’s,” I told him.
At first, he demurred; doctors really don’t like it when we self-diagnose. But a neurologist confirmed it.
I was perturbed. PD has a rather nasty ring to it, but my research informed me that it was not terminal and its progression, if inevitable, was at least slow. The neurologist was comforting. Apparently my tremor dominant type tends to take longer to impact quality of life.
“Worse things happen at sea,” I told myself and got on with things.
Not so with my family. They went into full panic mode. My eldest son took his worries to his ex-wife who, pragmatic as always, reminded him of my ability to cope. It was just before Mothers’ Day and they all visited, most making very long journeys.
They satisfied themselves that I was managing, took me for a meal, built my allotment shed and went home. Their care continued. Within a year, my youngest son had persuaded me to move next door to him and his family. I have to pay tribute to my wonderful family who never fail to come up trumps.
Once the flurry was over, I settled into complete denial, telling my consultant that I was raising my middle finger to Parkinson’s. He gave me an enigmatic smile and muttered, “Glad to hear it.”
PD was not going to get the better of me. How dare it interfere with a well-earned retirement! I took the medication when I remembered, and attended the reviews (largely so I could keep my driving license). I went into overdrive to convince myself that I was still a strong and capable woman.
Bit by bit the condition has become more evident. The tremor is more noticeable and my balance more precarious. I began to seek solutions. I’ve never been a fan of a purely medical approach, preferring a more holistic path. I have embraced physiotherapy, which really does help with the motor symptoms. I have researched the medication, discovering how to take it more effectively. I have learned to adapt.
A few years ago, I taught myself to write with my unaffected right hand. My handwriting is far from perfect, but I have become almost ambidextrous with a paintbrush or fine liner. I have taken on new challenges. I began writing when I couldn’t manage my large allotment anymore, and I’m learning a couple of foreign languages. PD makes you more susceptible to dementia so brain workouts have become a must.
My most difficult challenge recently came when a women’s poetry group I belong to launched an anthology at a local theatre. We were each to perform our own poems. It was tremendously exciting, except that I was terrified that the tremor, which is becoming less predictable, would start as I was performing. All was well until my last poem which was longer and less well rehearsed. Then it started. My hand was waving at the audience with gay abandon. Sometimes we have to think on our feet. I stuck the offending hand behind my back and continued. The rest of the group behind me on the stage sent love and prayers as I finished the piece.
I appreciate that my experience is not everybody’s. Each person’s PD is different and most of this sounds hollow on the bad days when it seems impossible to control the symptoms. I offer below some of the strategies which have helped me in my journey.
If nothing else, it has allowed me to retain an active role in life management instead of just being a victim:
- Make the most of the health service. They are the experts and can refer you for other assistance, physiotherapy for example. But also, be involved in your treatment. Not every medication will suit you. Sometimes, the side effects are worse than the condition. One medication I tried recently made me drowsy.
“I need to drive more than I need the comfort it affords,” I told my consultant.
We compromised and I now take half the dose.
- Do your own research. www.parkinsons.org.uk is an excellent resource, covering a wide range of relevant issues. I found YouTube to be a mine of varied and useful information from professional talks to vlogs produced by those who experience the disease. I particularly like Ian Frizell’s vlogs on his own very well documented journey.
- Look after your general health. Exercise and nutrition are particularly vital as is mental alertness. Healthline provides a comprehensive guide to foods which help and those to avoid. The importance of exercise is crucial, reducing stiffness, improving mobility and balance, and producing a feeling of well-being.
- Be aware of available support. Social services can help with mobility aids, the local council parking concessions including a blue badge, and financial assistance may be available through Attendance Allowance or PIP.
- If you accept your limitations, you can compensate for them – a lesson it took me a long time to learn. Adjust your lifestyle to concentrate on the things you can still do, and seek help for those you can’t.
Perhaps most importantly, don’t lose sight of the person you were before diagnosis (you probably had it for years before it became obvious). Refuse to be defined by the condition. Adaptation is the key. I am learning to live with PD. It probably didn’t want me any more than I wanted it. I think we have come to terms with each other.
If Sandra’s piece resonates with you, please do leave a comment below to let her – and other members – know.