For many years now, I've been President of the Montgomeryshire Branch of Parkinson's UK. Although I've not had any direct personal or family brush with this cruel disease, I have known people who have. Invariably I find sufferers to be determined to make the best of life. There was some publicity about Parlinson's last week, following the death of Robin Williams. Our Chair, John Day was inspired to write a letter which I think deserves a wider readership. Here it is;
Parkinson's - It’s difficult to always look on the bright side of life
“I was very saddened by the news that Robin Williams had died last week, he was a very talented actor and comedian who had the ability put a smile on the faces of people of all ages. He had been diagnosed with the early stages of Parkinson’s.
It has prompted me to pass on some of my thoughts and experiences of Parkinson’s to enable others to gain a better understanding. Both I and my wife Sue have been diagnosed with Parkinson’s for over 10 years. In some cases diagnosis can be a confusing and uncertain time. Much of the information at that time of our diagnosis came from the internet. We have always had good support from our fantastic family, great circle of friends and from medical professionals in Powys and Shropshire.
Many people think that it affects only the elderly; unfortunately this is not true it affects people of all ages. Most of the people who are diagnosed are over 50; however one in 20 is under the age of 40. Roughly 127,000 people in the UK have Parkinson’s, with over 300 people in Powys.
Actor Michael J Fox, who was himself diagnosed with the condition in 1991, spoke of his shock at learning that his friend Robin Williams had also been suffering from Parkinson’s. In the year 2000 he established the Fox Foundation for Parkinson's Research in America. It is dedicated to finding a cure for Parkinson’s and ensuring the development of improved therapies for those living with Parkinson's.
In the UK we get outstanding support from Parkinson’s UK, a registered charity, which has a well established support network throughout the country, together with a central help line and online access to a wealth of information on all aspects of Parkinson’s. They have a number of trainers who run a range of specialist courses for health care professionals in hospitals, care homes and health centres.
I feel honoured to be the Chairman of Montgomeryshire Branch of Parkinson’s UK and always look forward to our monthly meetings with a great bunch of people. We have guest speakers come along and talk to the group on a variety of interesting topics and have coach trips and a range of other activities. We have many fund raising events throughout the year and much of the money raised goes towards research and making life a little easier for people with Parkinson’s and their families and carers.
We enjoy the support of our Welsh Assembly Members, especially Russell George who supports many of our events. We have met on several occasions to lobby and create awareness of the needs of Parkinson’s sufferers. I must express my gratitude to Glyn Davies, MP who is President of our Branch and frequently attends our events, as long as they do not clash with his Westminster duties, he has a good understanding of health related matters and understands the needs of people with Parkinson’s and the various ways it affects patients and their families.
The support we have received from our Medical Practice in Welshpool has been excellent, together with a Parkinson’s Specialist Nurse and a host of other local health care professionals. Last year I was admitted to Welshpool Hospital, I had never stayed in hospital before and was quite concerned and anxious. I am so grateful to all the staff for their help and encouragement and getting me on the road back to recovery, they are a very dedicated professional and caring team.
Parkinson's can be a very difficult condition to diagnose, as no two people with Parkinson's are the same, not everyone will experience all of these symptoms and the order in which they appear and their severity also differs from person to person. The primary symptoms of Parkinson’s disease relate to movement. Rigidity can cause cramps and stiffness of muscles. There are other functions that are also affected, including dizziness, pain, fatigue, in addition to a number of health problems like depression and anxiety.
A tremor, or the involuntary shaking of a body part, is sometimes the first sign of Parkinson’s and it can spread from a finger in one hand into the arm or even into the foot on the same side of the body, not all people have tremor. In my case it started with a small twitching of my left side little finger, followed months later by my toes, some days I have a very visible tremor especially when tired or under stress.
It can limit facial expressions, make the task of walking extremely difficult, and can make repetitive movements such as brushing teeth also hard. It means that simple activities such as eating or getting dressed become increasingly difficult. It can be very frustrating when simple tasks like doing up shirt buttons and belts take so long. It can take quite some time to get out of bed in the morning. When I take my medication it takes a while to get “switched on” and get those rigid muscles going again.
For all Parkinson’s patients it is very important that they take the medication on time. Where suitable, most hospitals will allow patients to administer their own medication.
Parkinson’s itself does not cause people to die, but symptoms do deteriorate over time. Though there is no known cure for the condition, treatments to help control the symptoms of Parkinson’s include medications and physical therapies.
Drug treatments can help control some of the problems associated with the condition. One of the main drugs is Levodopa which is effective at improving mobility and motor function. There is a great deal of ongoing research into a cure and improving medications that will help to replace the reduced dopamine levels.
Neurosurgery is sometimes used to treat those who have had Parkinson’s for a long time and whose condition is not responsive to medication.
We have been referred to the National Exercise Referral Scheme which is funded by Welsh Assembly Government and has been developed over the last few years to target clients who have a chronic disease or are at risk of developing chronic disease. We attend the one at Maldwyn Sports centre in Newtown, these exercise sessions are available throughout the county.
With the right medication and exercise, many people continue to live a full and active life with Parkinson's.
The Montgomery Branch meet at 2pm on the last Thursday of each month in the Welsh Chapel, Mount Street, Welshpool.
Chairman Parkinson’s UK, Montgomeryshire Branch
Tynwtra, Bwlchyffridd, Newtown, Powys, SY16 3HX