 Jooly's Joint News
It's June!
Hello everyone.
Speak to you next month!
What's new this month?
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.
Exercises for people with
MS
The UK MS Trust has launched a new website full of exercises for people with
MS.
Put together with specialist physiotherapist Liz
Betts, the website contains simple but effective exercises for all people with
MS. The exercises are arranged in categories based both on how they are done
and the type of problems they address.
To see the exercises go to
http://www.mstrust.org.uk/exercises.
MS news from around the world
- MS charity urges end to
drug scheme (UK)
The MS Society is calling on the government to scrap a scheme
which offers disease-modifying drugs to some people with MS, fears the scheme
is hindering access to other therapies.
- 'I had controversial MS
treatment twice' (World)
A team in New York has reported the first results of a trial to
test the theory that restricted blood flow in the brain may underlie some of
the symptoms of MS.
- Brain blood vessels clue
to MS (World)
More than 55% of people with MS have been found to have
blockages of the blood vessels that drain the brain, a US study
says.
- Free from
pain but not prosecution (UK)
Sarah Martin believes cannabis is the best way to liberate
herself from the daily pain she endures. She says just half a teaspoon in a hot
drink will keep her pain-free and spasm-free for about three hours. She also
uses a vaporizer to ingest the drug.
- Trials spark hope of pill
for MS (World)
Oral drugs to treat MS could become available in 2011 after
promising results in two trials.
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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