By Isle of Wight Observer
Most people will know of someone who has, or had, Parkinson’s disease. However, they probably won’t be aware of the symptoms and character changes that the disease brings about. I will probably know better than most, as I am one of the 170,000 people in the UK with Parkinson’s, or PWP’s (People With Parkinson’s), as we are more affectionately called.
The cause of Parkinson’s is unknown, but what is known is that I’m more likely to get it as I am a man over 60. However, that doesn’t mean you won’t get it as a youngster or a woman, as it can be fairly impartial as to whom it affects. To get an actual diagnosis can be rather tricky to determine, as the Parkinson’s journey is not straightforward, and many of the differing symptoms will take their own time to develop, and may occur in different sequences. Most people are aware of the physical changes that PWP’s can get, such as tremors and difficulties with walking and balance. On the Isle of Wight, we have just over 450 people with the disease, some of whom will not be able to walk without assistance, whereas others can walk without any difficulty whatsoever; it just depends on their individual journey.
One thing we do know is that Parkinson’s doesn’t like people who take control of themselves and develop regimes of effective therapies, exercise and emotional well-being. These are positive steps with significant benefits in both physical and psychological aspects. The Island has been particularly fortunate in being able to organise itself to provide its PWP’s with a wide range of beneficial activities.
The NHS, local Parkinson’s branch, and private providers have come together into a diverse group of individuals working together against Parkinson’s. What do I mean by this? Well, when you’re first diagnosed on the Island, you’re given two things which you won’t get elsewhere: one is an invitation to a 10-week exercise class, combined with answers to inevitable “where to get” and “what sort of help” questions, which arise for all recently diagnosed PWP’s and their carers/family/friends or people who support them. The NHS provides the initial ten physiotherapist sessions, as well as one-hour additional sessions for topics such as occupational therapy, speech therapy, dietitian advice, consultant advice, and Parkinson’s nurse services, which other expert professionals deliver. So the newly-diagnosed immediately know who and what can help with the management of their Parkinson’s condition. They also receive a bespoke handbook that lists all the available information.
Part of the new journey is the ability to ensure that Parkinson’s doesn’t get the upper hand, and that newly-diagnosed people form effective bonds with their peer group. This is done informally by arranging local trips, such as going 10-pin bowling, table tennis, etc, or by joining the local Parkinson’s UK group, who meet at the Newclose Cricket Club every month (and also at pubs) for a lively session that includes talks, raffles, demonstrations, trips out, holidays and much more. It is also a thriving group of PWP’s who are interested in engaging with various arts, crafts, and hobbies.
Last June, this group held a “Sparky Parky” variety show in Newport. It will have a similar event on April 11 this year, at the Quay Arts Centre from 7pm to 9pm, billed as a fun-filled evening showcasing local talent to celebrate what people with Parkinson’s can do. The date of April 11 is, coincidentally, World Parkinson’s Day and marks James Parkinson’s birthday. In 1817, he was the first medic to diagnose the disease as a distinct medical condition. If possible, please join us at the Quay Arts Centre at 7pm to show your support for People With Parkinson’s on the Island.