I hope you had a lovely Christmas and fun over the New Year.
2012 promises to be a year of great change and hopefully many of those changes will be positive for people living with MS.
For some, there will be a renewed struggle to convince the government that people with MS need greater support for an acceptable standard and living and quality of life. For others, developments in the treatment and early diagnosis of MS mean the future is looking brighter than ever before.
Whatever challenges you personally face in 2012, remember that there is a community of people with MS here on your computer that you can turn to any time of the night or day.
Now entering our 17th year, Jooly's Joint continues to go from strength to strength, and I look forward to hearing from many of you during 2012.
Back in 2007, I made a presentation to a group of web industry professionals on World Usability Day where I took the opportunity to tell them all about Jooly's Joint. I thought you might also find the talk interesting, so here it is (17 mins).
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 and other 'disease modifying drugs' (DMDs) 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.
Sex
The UK MS Trust has launched two new booklets about sex for people with
MS.
The men's book is a new publication and the women's is a revised and updated edition.
Sex and MS: a guide for men
Sexuality and MS: a guide for women
Both discuss some of the complicated factors that contribute to and influence difficulties with sex and some approaches that may help manage difficulties. The book also look at the effects of symptoms on partners and ideas for talking about issues with family, friends and professionals. A collection of links and other resources are included.
The books are available free from the MS Trust. Visit the publications page www.mstrust.org.uk/pubs where information can be read, ordered or downloaded.
MS news from around the world
MS stem cell trial to go ahead (UK)
Researchers are preparing for a Europe-wide clinical trial to investigate whether stem cells can be safely used to treat MS.
MS breakthrough 'a cause for optimism' (UK)
Scientists at Cambridge University believe they may have made a medical breakthrough by finding a missing link in the treatment of MS.
Neurology care 'is lacking' for UK patients (UK)
Services for neurological conditions like MS are poorly organised and do not meet patients' needs, says a report by the Royal College of Physicians and the Association of British Neurologists.
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 via the comments form.
Jooly's Joint News
