Back-up COPY Sept. 06 MS Gloucester

Photo ©Corinne Clark 2015
Members from the Forest of Dean meet the BIKE THE UK FOR MS Team when they
passed through our area on 29th July
Full story on page 4
This newsletter is published by the Gloucester & Forest of Dean Branch of the MS Society. All the views
expressed in this publication are individual and are not necessarily the view or policy of the charity and its
Multiple Sclerosis Society - Registered charity nos. 1139257 / SC041990
In this issue:
Editorial page 2
Meet Your Committee - Member Profile page 3
Bike the UK for MS page 4
Recent events page 4
Forthcoming events pages 5-6
Fundraising and Funds Raised page 7
Area Fundraising Events page 8
Pinpoint for Petrol page 8
Sue's Bits & Pieces page 10
The Missing Link? page 11
And Finally (on a lighter note) page 12
Contact your local branch:
07934 919620 (leave a clear message with your name & number and we will call
you back)
(direct link - add it to your Favourite Bookmarks!)
MS Helpline: [freephone] 0808 800 8000 Mon-Fri 9:00am - 9:00pm
Gloucestershire MS Therapy Centre: 01452 419246
From last month's 'Picture Post' to a near barren desert in 31 days - this is YOUR Newsletter
and as Editor I need YOUR contributions. Please. Pretty please.
As we are now back to the bi-monthly format, you have until the middle of October to submit
items and articles for the next issue: I know that seems a long way off, but tempus fugit and all
that and it will come round before you know it so get on to it now! Please.
While I'm on the subject of the last (August) Newsletter, you may recall I quoted a few rather apt
lines from a song in relation to the Canal trip we took back in June: lyrics from "The Waterways
of England". I received the following message from Mr Folklaw himself, Nick Gibbs, songwriter
and fiddle player, after he saw a copy of the Newsletter: "Wow! That’s great. ☺ Thank you for
the publicity".
Gloucester's Fundraising Officer, Steve Pearce, has resigned his post due to now being in fulltime employment and finding he no longer has the time or energy to devote to the Committee:
he has served for nine years in various roles so deserves a break - if being gainfully employed
for long hours qualifies as a 'break'! I'm sure you will join me in wishing him all the best for the
future and in thanking him for his much appreciated efforts over the years. Although I have to
say, as a way of getting out of writing his "Committee Member Profile" this takes some
Which brings me neatly to the next plea: your Committee is still looking for a Branch Secretary
and we now require another volunteer to take on some of the Fundraising for Gloucester and
help out with collections, to complement the sterling work done by Margaret and Michael in the
Forest. If you would like to join the Committee in these or any other roles (we really don't bite!)
please contact your Chairman, Malcolm Wilson or any Committee member.
Member Profile - Chairman - MALCOLM WILSON
"My wife Maureen and I knew one another from the age of 3 years old: we were born in
Yorkshire in 1937-8 and had been married 52 years when she died in September last year. We
have been members of the MS Gloucester & Forest of Dean branch since 2009. Maureen had
MS for about 30 years, which progressed rapidly in the last 5 years prior to her death.
I retired in December 2004 with the intention of offering consultancy and accepted an
assignment at a company in India. My wife and I spent 6 weeks there in February/March 2005
and after returning to the UK for 2 weeks to make a visit to Poland for my old company, I
returned to India for an 8 week period. After some health problems and subsequent treatment
back in the UK, I was told I could return to India but decided the hot climate and working
conditions were no longer acceptable, so an engineer was employed to work with them under
my guidance.
My working life started at Landis Grinding Machines as a student apprentice where I qualified as
a production and mechanical engineer. After which, like all young people, I moved on and spent
3 years with a metal forging company and then 3 years with a precision tool maker before
joining a diamond tool maker, Van Moppes of Basingstoke. I became a Fellow of the institute of
Marketing Management and Sales Engineers, then in 1985 I joined Diamant Boart of Belgium
working out of Brussels overseeing 3 European projects on high speed grinding plus other
various jobs until 2000 when I returned to their UK plant at Staplehurst in Kent as Project
Manager until I semi-retired.
And that brings me up to date. I still help a company with special projects in the UK and Poland
which I visit 3-4 times a year."
Contributed by Corinne Clark
If you haven't heard about Bike the UK for MS, then you probably should have done. It is down
to James Whateley, a young Bath University student. He took part in Bike the US for MS as a
19 year old in 2012 and returned with the idea of setting up a similar venture in the UK.
In 2014, James pioneered Bike the UK for MS and this summer another team of cyclists got
together to ride from John O'Groats to Land's End, a distance of 1006 miles in 15 days! The
team included university students, some from the US who had flown over to take part and
others who had taken time off work to join in.
Checking the route myself and seeing that the Hereford to Bath stage passed through the
Forest of Dean, I decided that it would be nice to support them. James asked me for advice
about a rest stop and I suggested Tidenham Chase near Chepstow. So on July 29th, Graham
and Liz Spearman, Janet Berny and I met the cyclists. James told me that they had raised their
£20,000 target already. We chatted about our Branch activities and the importance of raising
funds to support the needs of those affected by MS. He shared some ideas about future MS
charity events.
It wasn't long before the 30 minute rest stop was over and the team sped off towards the Severn
Bridge. It was a privilege to meet the riders and to support them in their challenge and to pose
with them for the group photograph which appears on the cover page 1 of this issue.
The weather was kind for the visit to the Slimbridge Wetland Centre on Saturday 22nd August, in
spite of the doom-laden wet weather forecasts from earlier in the week - yet another case of the
sun shining on the righteous?
Photo ©Jenny Lowery 2015
Jenny Lowery writes:
The trip to Slimbridge was enjoyed by us all (17 in total). The weather turned out to be very
good - nobody took sun cream. My photos turned out quite well. We were impressed with the
Lego wildlife as well as the real wildlife, especially the Black Swans.
Thursday 10th September
Forest Meeting at the Great Oaks Dean Forest Hospice,
Coleford GL16 8QE at 7:00-9:00pm
Sunday 13th September
Land Rover trips up Robinswood Hill, Gloucester all day
between 11:00am and 4:00pm [see below for more details]
Saturday 19th September
Visit to the Dean Heritage Centre, Camp Hill, Soudley GL14
2UB Meet at the entrance for 12:30pm. Note new earlier
time. Bring a picnic or enjoy lunch in the Cafe on site.
Admission from £8.00 adult Gift Aid to £6.30 non-Gift Aid
concessions. Please let Jenny know in advance if you plan
to attend: 01452 532303
Tuesday 22nd September
Note change of date and venue. Lunch at the Whitehart,
Broadoak GL14 1JB at 12:30pm
Thursday 8th October
Forest Meeting - coffee, cake & chat at the Great Oaks Dean
Forest Hospice, Coleford GL16 8QE at 7:00-9:00pm
Saturday 17th October
Skittles Evening at the Wotton Hall Club, 138 Barnwood Road,
Gloucester GL4 3JS Meet at the Skittle Room for 7:00pm
Charge of £3.00 per person to include a light supper. Prizes
for highest scores.
Tuesday 27th October
Lunch at the High Orchard, St. Ann Way, Gloucester GL2 5FD
at 12:00 noon
Thursday 12th November
Forest Meeting - Quiz Night at the Great Oaks Dean Forest
Hospice, Coleford GL16 8QE at 7:00-9:00pm
Saturday 21st November
(provisional - tbc) Meeting at The Gloucester Deaf
Community Centre, Colin Road, Barnwood, Gloucester
GL4 3JL at 2:00-4:00pm Tea/coffee, cake, chat & Quiz
Tuesday 24th November
Lunch at The Avenue, Gloucester GL1 5TH at 12:00 noon
Thursday 10th December
Christmas Meal at the Orepool Inn, Chepstow Road,
Coleford GL16 8LH at 7:00pm
Saturday 5th December
Christmas Lunch at the High Orchard, St. Ann Way,
Gloucester GL2 5FD at 12:30pm
Booking form and menu attached: please complete and
return to Jenny with a deposit of £5 per person no later than
15th November.
Coffee Mornings - Gloucester
Meet up with Sue Wilber on Tuesday mornings between 10:00am and 12:00noon at the Coffee
Pot, St George's Church Hall, Grange Road, Tuffley GL4 0PE for tea, toast (or bacon butties or
a full breakfast!) and a chat. Sue enjoys these social occasions so much she is there almost
every week
In addition there are exercise classes every Friday from 11:15am (arrive at 10:30 for
tea & bikkies) together with the Take Heart Cardiac Support Group (British Heart Foundation)
at Elmscroft Community Centre, Coronation Grove, Gloucester GL2 0SS. There is a charge of
£3.00 per session as well as an annual membership fee to the Community Centre.
Exercise Classes in the Forest
The MS individually-tailored exercise programmes at Viney Hall Physiotherapy, Lydney,
If you think you might be interested in joining a class, please contact Graham Spearman:
e-mail or call 01594 528196 for further details.
Land Rover Trips up Robinswood Hill - Sunday 13th September
You know that hill that lives on the edges of the City of Gloucester? Parts of its slopes are
occupied by a ski and snowboard centre and a golf course while much of the rest is designated
as a Country Park. It is a steep climb to the top but the views on a good day are well worth the
effort if you are able to manage it. If you are unable to manage the climb due to age or disability
then help is at hand: the Friends of Robinswood Hill will take you up to a viewpoint at or near
the top in a nice comfy Land Rover, with tea and coffee provided by the St Barnabas Cub
Scouts. The shuttle service will run all day from 11:00am until 4:00pm and you can stay for as
much, or as little, time as you wish on the hill where I understand seating will be available.
Bring binoculars and try to spot your house! Meet the Friends in the car park off Reservoir
Road. If you would like to join up with fellow Branch Members, a small group will be meeting at
11:00am on the day. Please note that the vehicles cannot accommodate wheelchairs but as
long as you are able to get in and out of the Land Rover (there will be help) you should be fine.
"Unwrapping Chocolate" - Elmore Village Hall - Saturday 24th October
Andy Jarrett has highlighted this fun event which has been organised by The Rotary Club of
Severn Vale. The MS Society is one of the beneficiaries and the MS Society's share will be split
equally between Gloucester & Cirencester Branches.
The talk by Laurence Trackman will cover the history of chocolate from the Aztecs to the
present day and will explain the difference between 'good' and 'bad' chocolate. Tickets cost £10
and are available from Andy on 01452 883450 or from
[All chocolate is good for Editors, especially if it contains marzipan!]
Sunday 25th October - British Summer Time ends
Remember to put your clocks
back by 1 hour.
['Now the autumn leaves are falling…' ©C&R Macdonald]
Transport to Meetings
Any one needing assistance with transport to get to meetings please contact Teresa Dance
who will try to help: 01452 416434.
From Margaret & Michael Rose, Branch Fundraising Officers (Forest of Dean)
There will be a store collection on Friday 18th September between 10:00am and 4:00pm at the
Co-op in Cinderford. Volunteers needed so if you are able to help please contact Margaret or
Michael on 01594 564492
From Steve Pearce, former Branch Fundraising Officer (Gloucester)
The store collection at Tesco in St Oswald's Retail Park on Friday 7th August raised £298.41
and the collection at Morrisons, Abbeydale the following week, Friday 14th August, raised
It is interesting (ish!) to note that while these amounts are nearly the same, the weather on the
two collection days could hardly have been more different with the 14th being a very wet day
indeed: clearly weather doesn't bother car-borne shoppers very much!
As mentioned in the last Newsletter, on the 16th August Mark Beddis made the UK's highest
Bungee Jump (at 400ft) at the Chepstow Diving Centre, in aid of the MS Gloucester and Forest
of Dean Branch. I have been unable to contact him directly for a report but according to his
"Just Giving" web page he has already raised £690, which is well in excess of his £500 target
and I understand there may be more still to come. Well done, that man! Brave or crazy?
From Andy Jarrett Area Fundraiser
Cheltenham Half Marathon
Great news that we have a team of thirty runners from Messier Bugatti Dowty and twelve
regulars from The Greatfield in Cheltenham who have kindly signed up for the above on 27
Why not persuade someone you know to join them in a bright orange running vest to raise
funds for the branch?
Would be great if a few of us could be there in the morning to cheer them on and raise
Be brave to beat MS
Registrations are now open for an amazing abseil in Stroud on 20 September and the
exhilarating The Wire Zip Line challenge near Chepstow on 26 September.
Amazing low cost ways to have fun, challenge yourself and raise some funds for the branch.
For more information about any of the above, please contact Andy Jarrett our Area Fundraiser
on 0208 438 0943 or
For a solo disabled driver with restricted mobility, going to a petrol station to simply put fuel in to
the car can be a difficult and daunting prospect. Yes, you can sit by the pump and sound your
horn in the hopes of attracting a member of staff but this may not always have the desired
effect. The charity Disabled Motoring UK (DMUK) has been working with a number of different
companies to try to resolve these problems although of course any solutions can only work at
petrol stations that are staffed! Various ideas in place around the country include phone apps
and alert buttons, but the one that DMUK is advocating, and the system that one of our
Members was telling me about during our Canal Trip back in June, is Pinpoint.
The company Contacta have devised this handy system, which is basically a more reliable and
efficient version of older alerts: drivers have a small fob in their vehicle which they use to
summon help by pointing it at a receiver in the petrol station window and pressing a button,
much like that on a remote control car key. Once the system is activated by the customer the
attendant will press a button which lights up a display on the receiver so the customer knows
help is on the way, and as soon as they can a staff member will be there to assist, and this
includes bringing a card machine/slip to take your payment, while you remain comfortable in
the driving seat, so my Branch informant tells me.
The Pinpoint key fob is available to buy online but I understand that our member was actually
given one by her local petrol retailer so it may well be worth asking them about it in the first
instance. DMUK is requesting that customers who would like to see this system adopted by
their local petrol forecourt or supermarket filling station send an e-mail or letter to ask them to
install the Pinpoint system. A form of letter for this is available from the website so the hard
work has already been done - just copy and paste it into a letter or e-mail:
See also the Pinpoint by Contacta website:
Pinpoint at Sainsbury's petrol forecourt in Barnwood, Gloucester
At present, and according to the Location Finder on the Pinpoint website, Pinpoint is currently
only available at three sites in our area:
Sainsbury's Barnwood - Barnett Way, Gloucester GL4 3RT Tel: 01452 612 673
Tesco Brockworth - Delta Way, Gloucester GL3 4AA
Tel: 0345 6 719 415
Asda Cheltenham - Hatherley Lane, Cheltenham GL51 6PN Tel: 01242 840 300
Elsewhere, you will find Pinpoint the length and breadth of the UK from Penzance to Wick,
Pembroke Dock to Great Yarmouth and across Northern Ireland, predominantly at Asda, and
then Sainsbury's, with fewer at Tesco stores - you can check online for the nearest if you are
travelling although inevitably most supermarkets with attached petrol forecourts do tend to be in
the more built-up areas: even so there are still gaps.
As an aside, when Himself explained to the curious lady at the till why I was taking photographs
of the petrol station window while he was filling up the car, she remarked that Pinpoint is a
great system but little used at present so it makes the staff jump whenever it is activated.
Probably not as much as the poor chap on the other side of the pump jumps when you sound
your horn for attention though!
All submissions for the November-December Newsletter by 20th October 2015 please!
Send to or to 6 Sudbrook Way, Gloucester GL4 4QW
Sue Bennison has had MS since 1986 and contributes regularly to local Groups &Newsletters.
PIP Advice for MSers from Fightback
We are getting more and more Fibromyalgia/ME/MS/Epilepsy sufferers contact us lately
because they have failed to get an award of PIP. Equally we are hearing of many awarded PIP
when the forms are completed correctly. Because Fibromyalgia, MS etc are considered a
"fluctuating" condition, the form and assessor encourages you to put good days and bad days.
How many of you with a disability had a good day, to the point where it was "like you had no
pain and could do most things?" The words therefore mislead, and we believe it should
therefore say bad day and better days etc.
We recommend that when you are describing your days and fluctuations, you tell them as it is,
for instance, "a bad day is when I can't leave my bed because of the pain, I can't even get
myself downstairs, a better day means I can attempt to get downstairs and get myself a piece of
toast slowly, but then I have to rest an hour before trying to get a simple wash. This is a better
day for me."
Don't forget to tell them how many days on average you have these, and include examples, for
instance: "I had three days last week where I managed to do the simple task such as change
my clothing before 3pm and the other four days I needed help getting dressed because the pain
and exhaustion was so bad all day. Two of these days I just couldn't manage at all and on the
Friday I fell as I got out of bed and hurt myself so I therefore couldn't do anything at all that day
and didn't get up."
Remember to be entitled to PIP you MUST show that the inability to do a task is there for the
"majority of the time," which in layman's terms is 51% of the week. Describing it exactly as it is
will mean you have a better chance of success.
Give examples, warts and all and don't hold back. In court and during assessments you must
tell them as it is, warts and all. The panel and assessor will hear it all the time, so try not to feel
embarrassed. You will most likely never see these people again in your lifetime so try not to be
withdrawn or embarrassed, it is crucial to a successful claim.
Hydropool Treatment in Gloucester and Cheltenham
Ben Wilkins, a Registered Osteopath and Research Lead of Fluid Motion C.I.C. is delivering 1on-1 hydrotherapy sessions in Pamington just north of Cheltenham every Thursday 9am - 5pm.
He is aiming to run Saturday sessions from early September.
He has been supporting people with MS and neurological conditions over the past 8 years and
worked in multiple medical settings. He is the research lead and instructor for Fluid Motion, a
multi-award winning community aquatic rehabilitation programme.
'Back Into Action' has a purpose built hydrotherapy pool set between 30C - 32C which provides
the perfect environment for assessment, treatment and support for musculoskeletal conditions,
sports injures and disabilities. Using the Hydro Pool enables many injuries and conditions to be
treated earlier than on land and enabling and promoting movement, rehabilitation and recovery
in ways not possible without water. The pool allows for adaptable treatment programmes to suit
all stages of injury, disability and personal needs.
1 Hour one on one Hydrotherapy Sessions £60
telephone: 01684 772192
Back into Action Physiotherapy, Tirlebrook Barn, Pamington, Tewkesbury, Gloucestershire,
GL20 8LY
I knew I wasn't wasting all the time I spend on Facebook (internet social thingy) when I saw a
link in early June to a very interesting report on the website reporting
on an amazing discovery from researchers in the United States. The website permits, and
encourages, sharing of its news so I make no apologies for 'copying and pasting' this piece,
released on June 1st this year. The full scientific paper "Structural and functional features of
central nervous system lymphatic vessels" was published in the highly respected journal Nature.
Researchers Find Missing Link Between the Brain and Immune System
Implications profound for neurological diseases from autism to Alzheimer’s to multiple
In a stunning discovery that overturns decades of textbook teaching, researchers at the
University of Virginia School of Medicine have determined that the brain is directly connected to
the immune system by vessels previously thought not to exist. That such vessels could have
escaped detection when the lymphatic system has been so thoroughly mapped throughout the
body is surprising on its own, but the true significance of the discovery lies in the effects it could
have on the study and treatment of neurological diseases ranging from autism to Alzheimer’s
disease to multiple sclerosis.
“Instead of asking, ‘How do we study the immune response of the brain?’ ‘Why do multiple
sclerosis patients have the immune attacks?’ now we can approach this mechanistically.
Because the brain is like every other tissue connected to the peripheral immune system through
meningeal lymphatic vessels,” said Jonathan Kipnis, PhD, professor in the UVA Department of
Neuroscience and director of UVA’s Center for Brain Immunology and Glia (BIG). “It changes
entirely the way we perceive the neuro-immune interaction. We always perceived it before as
something esoteric that can’t be studied. But now we can ask mechanistic questions.”
“We believe that for every neurological disease that has an immune component to it, these
vessels may play a major role,” Kipnis said. “Hard to imagine that these vessels would not be
involved in a [neurological] disease with an immune component.”
New Discovery in Human Body
Kevin Lee, PhD, chairman of the UVA Department of Neuroscience, described his reaction to
the discovery by Kipnis’ lab: “The first time these guys showed me the basic result, I just said
one sentence: ‘They’ll have to change the textbooks.’ There has never been a lymphatic system
for the central nervous system, and it was very clear from that first singular observation – and
they’ve done many studies since then to bolster the finding – that it will fundamentally change
the way people look at the central nervous system’s relationship with the immune system.”
Even Kipnis was skeptical initially. “I really did not believe there are structures in the body that
we are not aware of. I thought the body was mapped,” he said. “I thought that these discoveries
ended somewhere around the middle of the last century. But apparently they have not.”
‘Very Well Hidden’
The discovery was made possible by the work of Antoine Louveau, PhD, a postdoctoral fellow
in Kipnis’ lab. The vessels were detected after Louveau developed a method to mount a
mouse’s meninges – the membranes covering the brain – on a single slide so that they could be
examined as a whole. “It was fairly easy, actually,” he said. “There was one trick: We fixed the
meninges within the skullcap, so that the tissue is secured in its physiological condition, and
then we dissected it. If we had done it the other way around, it wouldn’t have worked.”
After noticing vessel-like patterns in the distribution of immune cells on his slides, he tested for
lymphatic vessels and there they were. The impossible existed. The soft-spoken Louveau
recalled the moment: “I called Jony [Kipnis] to the microscope and I said, ‘I think we have
As to how the brain’s lymphatic vessels managed to escape notice all this time, Kipnis
described them as “very well hidden” and noted that they follow a major blood vessel down into
the sinuses, an area difficult to image. “It’s so close to the blood vessel, you just miss it,” he
said. “If you don’t know what you’re after, you just miss it.”
“Live imaging of these vessels was crucial to demonstrate their function, and it would not be
possible without collaboration with Tajie Harris,” Kipnis noted. Harris, a PhD, is an assistant
professor of neuroscience and a member of the BIG center. Kipnis also saluted the
“phenomenal” surgical skills of Igor Smirnov, a research associate in the Kipnis lab whose work
was critical to the imaging success of the study.
Alzheimer’s, Autism, MS and Beyond
The unexpected presence of the lymphatic vessels raises a tremendous number of questions
that now need answers, both about the workings of the brain and the diseases that plague it.
For example, take Alzheimer’s disease. “In Alzheimer’s, there are accumulations of big protein
chunks in the brain,” Kipnis said. “We think they may be accumulating in the brain because
they’re not being efficiently removed by these vessels.” He noted that the vessels look different
with age, so the role they play in aging is another avenue to explore. And there’s an enormous
array of other neurological diseases, from autism to multiple sclerosis, that must be
reconsidered in light of the presence of something science insisted did not exist.
Remember this is a very new breakthrough and there will be years of research and
experimentation to come before any effective treatment or cures can come out of it but it does
give a glimmer of hope for the future. No doubt too that there will be others who will seek to
discredit the findings of Professor Kipnis and his team.
Susan Wilber saw this in another Branch's Newsletter nearly 5 years ago and thought she
would share it with us.
Rules For Having MS Successfully
In order to have MS, you should acquire a cleaner, gardener, cook and general handyman.
If this is impossible, you should find a rich, devoted, non-talkative partner with few outside
Do not even consider having MS unless you have a downstairs toilet.
It is advisable to get rid of dependent children (unless they’re very helpful) and ask elderly
relatives not to have any major crises during the course of your life.
All visitors should bring their own food.
Before embarking on this illness, you should make a badge, which says ‘Looks Alright, Feels
As the most restricted member of the household, you should establish absolute authority over
the TV remote.
You should also let it be known that your needs will change from day to day without notice and
family members who help or fail to help will get their heads bitten off.