Accessible Transport Event - 14th August 2013

Top 10 Myths About Multiple Sclerosis

Source abcnews.go.com

Top 10 myths about MS.

Read here!

CUPID cannabis trial results published

Source MS Trust:

THC (tetrahydrocannabinol), one of the active ingredients in cannabis, has no effect on slowing progression in multiple sclerosis according to results published in Lancet Neurology.  Read more here.

Concerned about the Personal Indendence Plan (PIP)?

Source MS Society:

The Disability Benefits Consortium are writing to David Cameron and Nick Clegg to raise our concerns at the changes, including the introduction of the 20 metre qualifying distance for the enhanced rate of the benefit. We believe this could cause large numbers of people to miss out on fundamental support.  Read more here.

What is MS?

Source MS Society:

Great video from the MS Society! "Explaining MS isn't easy. This video explains the condition, symptoms, how to manage it & the support available."  Watch here!

Cognition affects around 50% of people with MS

Source MS Trust:

About half of all people with MS have some degree of problem at some time with aspects of thinking - memory, attention span or concentration. Read more on our http://www.stayingsmart.org.uk/ website dedicated to cognition.

Have your say on care provided at home

Source MS Trust:
The Guardian newspaper, together with the Department of Health, has launched a survey asking for opinions on how to make the homecare system work better. They are looking for views of people beyond the social care sector and are especially interested in hearing from healthcare professionals working with vulnerable individuals and their carers.  Read more here.

MS damage repair treatment looked at by Edinburgh researchers

Source BBC:
New treatments that could help slow the progression of multiple sclerosis could be a step closer due to research by Edinburgh University.
Read more here!

Eight low-tech ways to keep cook in a heatwave

Source BBC News Magazine:
Soaring temperatures in the UK have been welcome for some. But how can people keep comfortable when the mercury rises?  Read more here.

MS-SMART Trial recruiting this Autumn for people with Secondary Progressive MS

Source MS-SMART Trial: The main criteria for taking part are:
- Secondary Progressive MS
- Not on DMT (disease modifying treatment)
- Able to walk at least 20 metres (with the support of 2 crutches) or up to 500 metres without help
- Aged 25-65

Find out more about the trial here!

MS hope from 'off-the-shelf' drugs

Source BBC:Existing drugs for motor neurone disease, asthma and heart disease are being tested as possible treatments for advanced multiple sclerosis (MS). About 500 people with late-stage MS are to enrol in clinical trials in England and Scotland to see if three common drugs can slow disease progression.  Read more here.

Sodium build up in brain can cause nerve damage

Source MS Society:

Researchers part-funded by the MS Society have discovered that nerve damage in people with MS could be caused by a build up of sodium in nerve cells in the brain.  Read more here.

Useful audiobook option from Amazon - switch between reading and listening with Whispersync for Voice

Source Amazon:
Switching back and forth between a Kindle book and Audible professional narration - without ever losing your place is simple.  Whisptesync for Voice syncs Kindle books with professional narration for an uninterrupted reading and listening experience.  Read more here.

Blood-brain barrier vital to regulation of system

Source Irish Times:
The great German scientist and physician Paul Ehrlich (1854-1915) injected dye into the bloodstream of mice in the late 1800s and found that it penetrated everywhere in the body except the brain (and the rest of the central nervous system).   Read more here.

Next Wokingham Pilates classes start 2nd September

Our introductory Pilates classes have been a great success and we now have an 8 week course of classes arranged.  This will start on Monday 2^nd September and will be held at St Crispin’s Leisure Centre, Wokingham from 10.00 – 11.00am, followed by tea and coffee for those who would like to stay.  The classes will cost £1.80 each and will be led by Carol Green, a fully qualified instructor.  It will be suitable for all abilities and will consist of exercises which can be done either seated or on the mat.  This will be open only to individuals who have MS. 

Spaces are limited so we recommend booking soon to secure your place.

 For further information and to book your place at the class please email me at  amanda.speck@wokingham.gov.uk or telephone 07809 309582.

Best Wishes,

Amanda Speck
Physical Activity Co-ordinator - Long Term Conditions
Sport and LeisureTeam
Wokingham Borough Council

Wheelchair ramps available for a donation to BMSTC!

Wheelchair ramps available for a donation to BMSTC! Aluminium, 80cm by 120ccm with a bend in the middle, i.e. it's a ver flat "A" shape. Email tjrobinson@gmail.com

Accommodation needed - can you help?

Employed lady with MS and student son (17yrs) are desperately looking for 2 bedroom accommodation, flat, house, annex, within or surrounding the Reading area (happy with rural areas as well). We are struggling to find suitable private rental that is affordable. Required urgently, by end July 2013 .

Please contact Heather at heathery23@yahoo.co.uk

New Imaging Technology Accelerates Multiple Sclerosis Research

Source Biotechdaily.com

Canadian investigators have developed a new magnetic resonance imaging (MRI) technique that detects the characteristic signs of multiple sclerosis in finer detail than ever before, providing a more effective tool for evaluating new treatments.
Read more here.

Tim Robson climbs Mount Kilimanjaro for BMSTC!

Tim Robson, the son of trustees, Dave & Angela, has just climbed to the summit of Mount Kilimanjaro and raised a fantastic £1,663.75 in sponsorship. Thank you very much for doing this for the MS Centre Tim :)

Neurological Alliance survey on determining local priorities for neurological care

Source MS Trust:
NHS England (formerly the NHS Commissioning Board) has committed to hosting and funding strategic clinical networks (SCNs) for a number of health areas, including neurological conditions.   Read more here.

Thank you to BMSTC runners who have raised nearly £50,000 for BMSTC so far this year!

Last week we held a reception for our running teams who took part in the Reading Half Marathon, London Marathon, Green Park Challenge and Endure 24. They have raised almost £50,000 in sponsorship for the Centre and deserved a glass of bubbly from us! :0)

Phase II trial of new treatment for MS shows promising results

Source: MS Research Australia

The results of a Phase II clinical trial looking at the effects of a new therapy for relapsing remitting MS, siponimod, has been published this week in the journal Lancet Neurology.  Read more here

Making wheelchair gardening easier

Using a wheelchair around the garden is much easier if you find the right tools. Gardening is a hobby that is absolutely possible to enjoy from your wheelchair, made easier using a few simple tips and utilising your Trabasack.

Read more here!

Thank you to the Thursday crowd last week!

Kirsten would like to thank everyone who participated in the filming at BMSTC last Thursday. Also apologies in advance that the house of filming will be cut into a short promotional video and not everyone will be included. :0)

New MS Pilates class 11th July at St Crispin's Leisure Centre, Wokingham.

 
After a successful introductory Pilates class last week we have decided to run a second complimentary class before commencing the 6-8 week course. The class will take place on Thursday 11th July and will be in the studio at St Crispin’s Leisure Centre, Wokingham from 9.30 – 10.30, followed by tea and coffee for those who would like to stay. This will be led by Carol Green, a fully qualified instructor and will be suitable for all abilities. The class will consist of exercises which can be done either seated or on the mat. This will be open only to individuals who have MS. 

Spaces are limited so we recommend booking soon to secure your place.

Anyone wishing to book a place for the class can do so by emailing me Amanda.Speck@wokingham.gov.uk or contacting me on 07809 309582.

Best Wishes,

 Amanda Speck
Physical Activity Co-ordinator - Long Term Conditions
Sport and LeisureTeam
Wokingham Borough Council


Boars Bridge Festival raises a record £4,020 for BMSTC!

Well, we recieved and amazing £4020 on Friday from this year's Boars Bridge Festival! £1,000 more than last year! Amazing!

 

Thanks go to so many people who work very hard to bring music, fun and merriment over a great weekend raising money... for BMSTC! I would like to personally thank the organiser, my dear friend Lynne Reynolds, for her months of work to organise such a great event. She has put her heart and soul into making this year the biggest and best ever Boars Bridge Festival! :0)x

Would you like to participate in another research project?

"Hi Pippa,

I found your blog online, and I found it to be very interesting and inspirational. I work for a research firm just outside of Boston, MA – and we’re currently doing some really interesting work regarding MS medication. My understanding is that the medication that has been on the market is typically administered by injection only, and that it tends to be pretty hard on the body, comes with many side effects, etc. – but that some new oral medications are now starting to come out. My team is currently recruiting MS patients to join an online bulletin board / discussion community to record their experiences with various forms of treatment. Here are the details:

-          The online bulletin board will run for 6 – 8 weeks

-          During this period of time, participants would be asked to respond to questions on the online bulletin board an average of three times per week

-          A professional moderator will also post comments and questions in response to what you’ve written, so participants will also need to log in to respond to those

-          We expect that your active participation would be about 20 minutes per session, so approximately one hour per week

-          Additionally, we might ask you to complete one or two exercises using your imagination and creativity, such as a weekly journal

-          The online bulletin board is not real-time chat, so you’ll be able to log in whenever it’s convenient for you

-          As a thank you for your time and opinions, you will receive a check for $350 after completing the full 6 – 8 week exercise

-          In addition to the monetary incentive, this is a unique and interesting opportunity for you to influence the MS medications that are available and coming onto the market 

We are specifically looking to recruit patients who have Relapse-Remitting MS, and who are in the process of switching to / from  various medications, or starting new forms of treatment.

First and foremost, I was wondering if you might be interested in participating – but I was also thinking that you might be able to help me get the word out to any other MS patients who you think might be interested.

Please feel free to reach out to me if you have any questions, if you’d like to learn more about what we’re doing, or if you’d like to sign up to participate.

Thanks very much,

Elizabeth Staples
Fieldwork Services Manager

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