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Goodbye Dad x
My lovely dad George Williamson passed away on 12 Feburary following a mercifully short period of illness with cancer of the oesophagus. Those of you who were at the Jooly's Joint 10th anniversary party in Birmingham in 2005 may remember my dad as it was he who wrote the quiz! I think my dad found it very hard when I was diagnosed with MS aged 19. His mum had had primary progressive MS and had passed away (not from MS but other complications) when he was in his 20s. But after I started Jooly's Joint in 1995, dad and I found a way to talk about MS without the pain, anxiety or guilt of having to talk about MS directly, and the last few years of his life were the closest we'd had. My dad was very popular with many, many friends who are feeling the loss of his passing very deeply. My only wishes were to make my dad proud and for him to know how much I love him, and I was granted both wishes in the time before he died. I don't know if they have the Internet in Heaven yet, but if they do I know dad will drop by Jooly's Joint from time to time to see how we're getting on (if the angels can drag him away from Ebay for long enough). I love you dad x |
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 worldI'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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With very best wishes, |
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