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.
John Day
Chairman Parkinson’s UK, Montgomeryshire Branch
Tynwtra, Bwlchyffridd, Newtown, Powys, SY16 3HX