Reports of recent meetings
DONATION FROM NOTTINGHAM HIGH SCHOOL FOR BOYS (September 2006)
Our chairman, Mike Cole, on 19 September was presented with a donation raised by the boys over the last two terms of £1000 for the
Association. Well done the school and many thanks.
LIVING IN THAILAND (Our September 2006 meeting)
"Imagine walking barefoot on the hot sands of a beach that stretches for miles, with palm trees for shade, and petrol costing 30p a litre."
Godfrey Kent, our former chair, now living in Thailand with his wide Maxine, told us that while holidays are wonderful, living there is somewhat
frustrating for people from the west. Society is polarised between some very rich Thais and expats, and a large, impoverished, underclass.
Through the Rotary Club he has helped young people who lost their parents in the tsunami disaster and collected 90,000 books for the schools which
were destroyed.
THIGH MUSCLE SAMPLES (Our August 2006 meeting)
Dr. Justine McCullough of Nottingham University Medical School talked about current research into MND. Her own work focuses on trying to
understand how MND affects muscle strength with the hope that therapies can be devolped to prevent muscle wasting. She takes a very small piece
of muscle from a patients thigh (with permission of course) and another four weeks later. "It doesn't hurt", she said. "It's like a small
pen being pressed against the thigh". The aim is to identify genes which switch on muscle building.
HOW TO CLAIM DISABILITY BENEFITS (Our January 2006 meeting)
Jean Everington introduced us to the complexities of Incapacity
Benefit, Disability Living Allowance, Attendance Allowance, and
Carers’ Allowance. State support is available for many
different situations but finding out what one may be entitled to and
applying for it can be a nightmare! The Welfare Rights Service
of Nottinghamshire County Council publishes a useful Disability
Benefits Checklist and has an Advice Line at 08456 015 943 (‘ring
between 11 and 1; calls returned between 2 – 4pm’)
REFLEXOLOGY FOR A BETTER QUALITY OF LIFE (Our Sept 2005 meeting)
David Wayte, who is a reflexologist registered with the NHS, described
how reflexology stimulates different parts of the body through massage
of the feet. For example, work on the little toe can ease a stiff
shoulder and massage of the sole below the big toe can reduce
stress. It is a gentle treatment and although it can’t
affect the progress of MND it can make people feel good and so
contribute to a better quality of life.
CURRENT RESEARCH INTO MND (Our August 2005 meeting)
Professor Jim Lowe, of the Department of Neuropathology at the
University Hospital and Queens Medical Centre talked to us about
current scientific understanding of motor neurone disease and of
present research.
Motor neurone cells are the communication system from the brain to
muscles throughout the body and in MND these cells slowly die.
The clinical features are a weakness and wasting of certain muscles
– because they are not being stimulated by the neurone cells
which carry the brain’s commands. Some muscles are not
affected, for example eye muscles and continence muscles – and
researchers ask, ‘Why is this?’ The disease develops
in different ways with different muscles being affected in different
people – arms, legs, swallowing, speaking and breathing
muscles. In a small proportion of patients dementia can
develop. In about 5-10% of cases there is evidence that the
disease has been inherited – but most cases show no such pattern.
MND has an average incidence of 2 per 100,000 people. Three
men develop the disease for every two women. People living in
rural areas show twice the incidence of city dwellers
(‘but’ said Prof Lowe, ‘it doesn’t follow that
agricultural practice is responsible for the disease, perhaps car
fumes, for example, protect people!’) The mean age of onset
of the disease is 60 years, but in a quarter of cases it is under
50. Between 15 and 20% of patients survive over 5 years and
5% longer than 10 years.
These variations in MND all provide starting points for researchers to
ask questions, but until recently not much progress has been made in
understanding how the disease develops. Now the position is
changing and a number of promising ideas are being pursued.
Studies of genes have found 11 genetic sites associated with different
kinds of MND. Studies of mitochondria (the power houses of cells)
have found problems described as ‘oxidative stress’.
Studies of glutamate – the chemical which travels across gaps
between nerve cells - suggest that too much may be produced in MND
affected cells and cause toxic effects. The medication riluzole,
which can slow down the progression of the disease, is an
anti-glutamate drug.
One very promising line of research started in 1988 when bodies called
‘neuronal inclusions’ were first detected in MND
cells. It seems that protein molecules called ubiquitin in these
inclusions may be what is going wrong. Ubiquitin is part of the
body’s ‘garbage system’ – getting rid of waste
products – failure to do this may be what MND is about.
A
recently developed technology, known as mass spectral proteonic
analysis, coupled with computer directed microscopy, enables protein
molecules to be extracted from MND cells and their molecular structure
identified. The aim is to produce pharmacological drugs which
will block these proteins and hopefully prevent the development of the
disease. It could also lead to a biochemical test for MND which
would aid diagnosis. Prof Lowe thought that within the next five
years the protein responsible for this disorder will be identified and
this will open up research into how the disease develops and perhaps
how it can be controlled. ‘The research tools are there,
it’s just a matter of time to make this progress’, he
said. He also mentioned the importance of MND tissue donations of
brain and spinal cord, which is essential for this research. At
present donation is at the decision of the next of kin, but the law is
being changed and soon the donor will be able to ask for this to be
done.
AROMATHERAPY (Our June 2005 meeting)
Caroline Gray, a qualified aromatherapist from Keyworth, gave a useful and interesting talk about aromatherapy.
Cave wall paintings in France show that the medicinal use of plants
goes back to at least 18000BC. Essential oils are taken from many
plants, sometimes the flowers, sometimes the roots, sometimes the
fruits. These are used in a base oil for massage, blended for the
individual’s needs following a consultation. In massage the
essential oils enter the body through the hair follicles.
Aromatherapy massage is gentle, involving slow rhythmic movement and
usually based on shoulders, neck and back.
Alternatively essential oils may be inhaled and there are several ways
of vapourising the oils into a room: they may be heated (with
water) in a special burner, placed in a magnetic holder fixed to a
radiator, dropped onto a brass ring fixed over a light bulb, or
released from special candles. For the bath there are soaps which
carry essential oils, Dead Sea salt crystals which have been coated
with essential oils, or just oil drops added to the bath water. Over 40
different essential oils are in common use – each with health
promoting properties.
Aromatherapy can help reduce stress, relieve muscular pains, help
breathing, give a goodnight’s rest, counter anxiety and
depression, and give pain relief. Although there is nothing
specific to motor neurone disease, Caroline thought that this list
shows that it could be generally helpful to those with MND.
Among the questions asked was, ‘Is there a scientific basis for
these treatments?’ Caroline answered that the evidence is
that most people benefit and that aromatherapy is becoming accepted by
more doctors and hospitals. In answer to another question she
said that geranium oil may be helpful to relieve muscle cramps.
LIVING WILLS (Our May 2005 meeting)
Macmillan nurse Lindsay Hall, supported by her colleague Sarah Frees,
both from the QMC, talked to a lively meeting at Sutton-in-Ashfield
about living wills.
The idea started in the United States where they are called
‘Advanced Directives’. It is a written
statement by someone who knows they are terminally ill and who, in case
they lose the power to communicate, wishes to assert that, as the end
of their life approaches, they decline medical treatment which might
prolong their life, while seeking palliative care which may reduce
suffering. Fundamentally it is about the quality and dignity of
human life and the right of individuals to make personal end-of-life
decisions within the law. To make a living will one must be over
18 and declare oneself to be of sound mind and making the decision
freely. It is a legally binding document.
Lindsay stressed that this is not euthanasia because it isn’t a
request for treatment, but a refusal of life-prolonging
treatment. (And, of course, euthanasia is illegal in this
country).
Making a living will is not a widespread practice in this country but
is beginning to happen in the case of people with HIV/Aids, dementia
and motor neurone disease. (The MND Association provides forms
and advice on this). It needs to reflect the conditions of the
terminal illness and relate to situations where the person cannot make
clear their wishes with regard to medical treatment, for example
resustication, ventilation or tube-feeding. The British Medical
Association has accepted the idea but is not pushing it; it seems
to be part of a slow change in medical culture from decisions made
solely by doctors about the quality of life to ones that are shared
between doctors and patients.
A living will is obviously something to discuss with one’s
family, GP, consultant and any nurses involved. The signing of
the living will has to be witnessed by someone who will not benefit
from the decease. It is sensible to ensure that there are copies
for self, family, GP and stored in any hospital records. From
time to time one is urged to re-read the living will and sign and date
it (and its copies) if it is still in accord with one’s
wishes. Lindsay said that living wills are understood by medical
teams and respected by them.
Finally she said that is widely recognised that this involves deep
spiritual issues and that while for some it may bring comfort, for
others it may not be what they want. It is something for each to
reflect on and make their own decisions about.
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