 Jooly's Joint News
It's December!
Merry Christmas everyone!
Much love and good wishes to everyone with MS
this Christmas.
Lots going on at Jooly's Joint, with many new
people joining our webpals lists, and the
chatroom is as vibrant as ever.
Speak to you next month!
Recent news...
 Beauty Through Strength
An exhibition of paintings by the acclaimed
British artist Melissa
Mailer-Yateswas held in Birmingham, UK.
Melissa's exhibition is called 'See me... then
see me' and included an exploration of the sensuality of women with MS. The
collection included a number of portraits of three women with MS. The portraits
are nudeand I was one of the
subjects(!).
I stress very strongly that this is art! The
paintings are in no way demeaning or provocative (well, they are provocative in
the artistic sense, but not in any other way!). However, they are
sensualas the artist attempts to convey a sensuality beyond the ravages
of MS.
The exhibition was backed by the
MS Society. In fact, it was they who
asked me to model for Melissa.
To raise awareness of the exhibition I created a
video diary.
Please visit
www.beautythroughstrength.com.
Read the posts, watch the videos and please post comments. I wasnt to know what
you think!
PLEASE NOTE: Although the paintings are in no way
offensive, they are nudes. Naked. Without clothes! If you are offended by
female nudity then please don't look! I stress that this project is all about
sensuality and real women with MS.
What's new this month?
Survey about end-of-life issues
A member of Jooly's Joint is undertaking a
research study as part of her Open University course that asks people with MS
and other conditions how we feel about 'end of life' issues. The results of the
study, which is completely anonymous, will be published in academic books and
journals and the aim is to help health care professionals to understand how to
support disabled people and people with conditions like MS who may be thinking
about end-of-life issues.
This is an extremely sensitive subject and you
may feel that it's not something you want to think about. This is absolutely
fine. I have undertaken the survey myself. It is thought-provoking but does
contain some questions that some may find upsetting.
If you would like to take part in the research,
please contact Margo Milne at m.j.milne@open.ac.uk. Please note that you must
be in the UK to take part in the research. If you contact Margo, she will send
you a short questionnaire to fill out anonymously.
Blogs!
Disease Modifying Drugs
(UK)
Many people with MS in the UK are still waiting for fair access to the MS drug
beta interferon, despite the government's promise that a
'risk sharing scheme' would make the drug more freely available. If you have
been offered one of the disease modifying drugs (DMDs) by your neurologist you
may find the MS Decisions website
helpful. It contains lots of information about each of the drugs and may help
you to choose the best one for you.
Have you had problems getting disease modifying therapies? Have you been told
that funding issues mean you might not get the drugs? Have you been put on a
waiting list, or had appointments cancelled?
Advice
from the MS Society.
Cannabis Spray
(UK/Canada)
Cannabis spray has become available to people with MS in the UK and Canada!
This is good news. People with MS in the UK have finally been granted access to
cannabis-based pain-relieving drugs via a new 'named patient' scheme backed by
the Home Office. Under the scheme a family doctor or neurologist can write to
the Home Office on behalf of the person with MS requesting that the oral spray
Sativex be imported from Canada (where it does have a license) for use by the
person with MS. Many people with MS experience relief from painful symptoms
such as spasms when they use the spray.
Read more about Sativex
on the BBC website.
New MS Assistance Card (UK)
People with MS often need help quickly and find it difficult or embarrassing to
explain why. A discreet new ‘assistance card’ from the UK MS Society
explains that a person has MS, reassures that it is not infectious and
describes everyday situations where help could be given. A person may need a
toilet urgently, be at high risk of stumbling and falling, or not able to see
clearly and needs guidance. The card, which can be slipped into a wallet,
pocket or handbag, will explain if fatigue or weakness means asking to go to
the front of the queue or if MS is the cause of slurred speech.
If you
are in the UK you can order the card from the UK MS Society website.
Jim Sweeney
British comedian Jim Sweeney has MS. I bumped into Jim quite randomly (in the
restaurant of a private members club... it's a long story!) at the end of 2004.
He told me he was preparing to take his one man show 'MS and Me' onto the
radio. It was subsequently broadcast on Radio 4. If you missed it, don't worry!
You can now listen to the show on
Jim's web site (look for
'part one' and 'part two').
New book - 'Sexuality and
intimacy for women with MS'
The MS Trust will publish a new book on sexuality and intimacy for women with
MS in May. Written in conjunction with an MS nurse and illustrated by comments,
opinions, experiences and tips for coping from women with MS, the book offers a
positive and practical approach to an area that affects many women but which is
not always easy to discuss. 'Sexuality and intimacy for women with MS' can be
ordered from www.mstrust.org.uk/publications.
Looking ahead...
MS Society (UK) events calander
More soon...
MS news from around the world
- Worldwide survey seeks MS
answers (World)
The number of people with MS worldwide could be far more than
the estimated 1.3m, researchers say. A major new study has been launched by the
Multiple Sclerosis International Federation (MSIF) and the World Health
Organization (WHO). They hope to answer key questions about MS, the cause of
which is unclear.
- Unproven treatment 'aids
my MS' (UK)
Tracey feels benefit from a set of "All or Nothing"
prevention rules, covering diet and exercise.
- Islands targetted in MS
study (UK)
Dr Jim Wilson of Edinburgh University explains about a study of
the genetics of MS.
- We live with MS
(World)
Four people with multiple sclerosis tell their stories about
the condition.
- Unravelling a medical mystery (UK)
Professor Charles ffrench-Constant, director of the Edinburgh
MS Research Centre, speaks about his work.
- 'I'm just another Scot
with MS' (UK)
Elizabeth Quigley's personal investigation into MS in
Scotland.
- MS guidelines 'are being
missed' (UK)
The NHS is failing to meet national guidelines issued five
years ago to improve the diagnosis and care of people with MS.
- Caffeine 'could help
prevent MS' (World)
Mice given the equivalent of six to eight cups of coffee a day
were less likely to develop a disease similar to MS, a study found.
- Promising trials for new
MS pill (World)
A new oral drug for MS called Laquinimod has produced promising
results in clinical trials.
- Johnstone seals
emotional victory (World)
Zimbabwe's Tony Johnstone has won the Jersey Seniors Classic
golf tournament, finishing two shots clear on three-under-par. It is the
52-year-old's first win since being told he would never play golf again after
being diagnosed with MS in 2004.
- MS drug keeps people on
the move (UK)
A drug which allows people with MS to walk more quickly has
passed the next step in its testing, say its makers.
- Specialist
MS team set up in city (UK)
A specialist team has been created to help people with MS in
Dundee, Scotland. The group, which is described as the first of its kind in
Scotland, features a social worker, physiotherapist, nurses and neurologists.
- Has Neighbours handled MS
well? (World)
A key character in the popular Australian soap has been given
an MS diagnosis.
- The Bill criticised
over MS plot (UK)
ITV1 drama The Bill has been criticised as "grossly
irresponsible" for making up the name of a drug to treat MS in a recent
programme.
- Brain drug target
discovery in MS (World)
US researchers have found two potential targets for
treating MS after an extensive trawl through proteins in the brain.
I'm always interested in your ideas for new
things at Jooly's Joint. If you've met someone through JJ who has become a
close friend, or if your life has benefitted in some other way through being a
member of our community, I'd love to hear from you. You can contact me at
jooly@mswebpals.org.
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