What is it really like having Parkinson’s disease?

12:00 PM May 31, 2022

A St Albans woman with Parkinson’s Disease has offered a candid insight into her journey following her diagnosis eight years ago.

Mother of three Margaret Stone, 79, was left shocked after her GP said a frozen shoulder might be a neurological condition, and underwent 18 months of tests and scans before finally receiving confirmation that she had Parkinson’s.

Her subsequent experiences recently led to her appearing in a national newspaper calling for better resources for identifying and treating people with the condition.

Margaret explained: “There has been a lot of progress in the knowledge and earlier diagnosis of PD in the medical profession over the last ten years, all of which is good. I have taken part in several research projects, many of which are to do with ways to detect the presence of PD long before any of the more obvious and debilitating symptoms occur. Among some there is an idea that PD is dormant in most of us and all it needs is a trigger to set it off – in my case that might have been my frozen shoulder.”

The former primary school teacher said following her diagnosis she was not in a good place either physically, emotionally and mentally, but joining the West Herts branch of Parkinson’s UK set her on a positive path to begin living her life again.

“I took part in a program called STABLE (STaying Active with Big Limb Exercises) run by a physiotherapist and an occupational therapist who were excellent in showing me the way forward to a better quality of life. I signed up for a six-mile walk to raise money for Parkinson’s UK which I did with my twin daughters, my son-in-law and one of my grandsons, I have an annual swim membership at Westminster Lodge where I usually go two or three times a week; and I go to a dancing music and movement class weekly.

“I try to exercise and walk each day and although I am often tired and finding life quite a trial, exercising to straighten my posture always helps. Many people tell me I am a different person from how I was years ago and it is true my confidence gradually returned and before the pandemic I was traveling again, on my own, making several trips abroad including two amazing trips to South Africa and Victoria Falls in Zimbabwe.”

She asked for a greater understanding of the challenges faced by those with the condition: “People with Parkinson’s are managing different problems and coping with a variety of difficulties, many of which, even their family and friends will be unaware.

“You take a drink carelessly and you have a coughing fit; you fail to chew your food enough or eat too fast and suddenly you’re choking; if you forget to put drops in your eyes, they become sore – most people blink naturally, as they do with everything else without having to think about it, but not people with PD.

“Regulating body temperature we take for granted, but with PD one minute you are cold and the next too hot; bladder control; constipation, which makes you feel really unwell, or as bad; what is delicately termed ‘a loose bowel’, are Some of the issues we face daily. My sense of smell had almost disappeared before I was aware of it. So much else creeps up on you unawares.

“I hadn’t realised that when I concentrated on filling the kettle I put all my weight on my right leg, leaving my left leg free to ‘twitch’, until one of my daughters told me! Reading the lesson at the 9.30 service in the Abbey recently I was cross when I stumbled over a word caused, I realised, by my attention being on ensuring my left foot remaining firmly on the ground!”

But Margaret also is keen to highlight the support she has received: “The people you meet along your journey with Parkinson’s can make a huge difference on how you cope and on your quality of life. Small things can cause emotional distress, for no reason you find yourself in floods of tears.

“Equally, unexpected empowers, suddenly you’re strong and positive, standing up straight and looking the world in the eye. Many people with conditions like PD would benefit from getting help quickly, be it with their GP, consultant and less obviously from Physiotherapists, occupational therapists, speech therapists, mental health and other counsellors, care workers, cleaners, gardeners, dentists and may be from YOU if you know someone with PD perhaps your words or actions will be just what is needed to keep them from harm and that 999 call?”

For more information on Parkinson’s disease, including early warning signs and support post-diagnosis, visit parkinsons.org.uk

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