Parkinson’s – what is it and how do I live a full life?

This week is Parkinson's Awareness Week (18-24 April 2016) and two patients who receive treatment at CLCH's Parkinson's Day Unit at Edgware Community Hospital were on the BBC on 18 April sharing their experiences. Elan Shoffman was on BBC Breakfast News talking specifically about his communication difficulties which for him means; low speech volume, reduced clarity of speech, facial masking and also having a stammer. Elan is going to give a speech at his daughter's wedding and so has been focussing on his speech. Watch his incredible story here. The other patient was talking about the daily challenges she faces living with Parkinson's.

Parkinson's is a progressive neurological condition that affects approximately 1 in every 500 people, meaning there are about 127,000 people in the UK with Parkinson's. People with Parkinson's don't have enough of a chemical called dopamine because some nerve cells in their brain have died. Without dopamine people can find that their movements become slower so it takes longer to do things. The loss of nerve cells in the brain causes the symptoms of Parkinson's to appear. There is currently no cure for Parkinson's and we don't yet know why people get the condition.
(Source: Parkinson's UK).

Patients with Parkinson's - or suspected Parkinson's - should seek expert referral and diagnosis as early as possible and should initially access this via their GP. Once under the care of medical doctors it is important they receive regular reviews from a specialist in Parkinson's; NICE guidelines recommend every six months.

At the Parkinson's Day Unit patients are also able to access specialist nurses and a range of therapies with support from clinical support workers and rehabilitation support workers; there is also a medical helpline.

It is important that patients follow the specialist advice they receive as well as take their medications on time. Parkinson's has a range of motor (tremor, slowness of movement, rigidity, postural instability, freezing, poor balance etc.) and non-motor (sleep disturbances, constipation, fatigue, visual difficulties, depression etc.) symptoms that can affect patients. These impact patients in many different ways, therefore patients and their carers should contact their specialists if they have any concerns regarding their condition.

The Parkinson's Day Unit are just starting to participate in clinical research in conjunction with researchers at UCL and further details will be published shortly.

By
Martin Samuel
Parkinson's & Adult SLT Manager, Barnet
Parkinson's Day Unit