sep/oct 2012 - ms society wigan branch newsletter
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Sep/Oct 2012 - MS Society Wigan Branch NewsletterTRANSCRIPT
Multiple Sclerosis Society Wigan Branch
Multiple Sclerosis Society Registered as a LTD Company in England and Wales. 07451571
Multiple Sclerosis drug Ampyra linked to risk of seizure soon The FDA gave new warnings for AmpyraSclerosis may be at risk of having seizures in the first few days or weeks of taking the drug.Patients taking Ampyra should talk to their doctors abhistory of seizures.Doctors should be doing blood tests todrug.
Talk to your doctor about your risk of seizure.Ampyra (dalfampridine) was approved by the Food and Drug Admini2010 to improve walking for people with Multiple Sclerosis.The FDA looked over information they have been getting about seizures. On July 23 they issued an update to the warning label information.
The new label warns that people taking during the first few days or weeks they are taking the drug.
It also warns that anyone with kidney problems is at higher risk for seizures.
Ampyra is processed by the kidneys, so any problems with kidney funlevels of the drug in the blood. If the kidneys are not working properly, the drug cannot be cleared from the blood.The FDA gave the following guidelines for patients taking• Do not double-up on doses of Ampyra• Do not crush or chew Ampyra tablets or capsules.• Tell your doctor about any history of kidney problems.• Tell your doctor if you have ever had a seizure.• Make sure your doctor is doing blood tests to watch your kidney funThe new safety alert urged doctors to monitor kidney function while their patients are taking Ampyra. Blood tests at least once a year should be done to check for kidney problems.Anyone with a history of seizures should not takeThe FDA issued this new safety warning as part of their Safety and Adverse Event monitoring program.
Wigan Branch Front Page Newsletter
Multiple Sclerosis Society - Registered Charity Numbers 1139257/SC041990Registered as a LTD Company in England and Wales. 07451571
WIGA
Multiple Sclerosis drug Ampyra linked to risk of seizure soon after starting on the drugAmpyra. Some people taking this drug for Multiple
Sclerosis may be at risk of having seizures in the first few days or weeks of taking the
should talk to their doctors about any kidney problems or any
Doctors should be doing blood tests to watch kidney function while you are taking the
Talk to your doctor about your risk of seizure.) was approved by the Food and Drug Administration (FDA) in
2010 to improve walking for people with Multiple Sclerosis.The FDA looked over information they have been getting about seizures. On July 23 they issued an update to the warning label information.
The new label warns that people taking the drug may be at risk for seizures, especially during the first few days or weeks they are taking the drug.
It also warns that anyone with kidney problems is at higher risk for seizures.
is processed by the kidneys, so any problems with kidney function can raise the levels of the drug in the blood. If the kidneys are not working properly, the drug cannot
The FDA gave the following guidelines for patients taking Ampyra:Ampyra. If a dose is missed, talk to your doctor.tablets or capsules.
• Tell your doctor about any history of kidney problems.• Tell your doctor if you have ever had a seizure.• Make sure your doctor is doing blood tests to watch your kidney function.The new safety alert urged doctors to monitor kidney function while their patients are
. Blood tests at least once a year should be done to check for kidney
Anyone with a history of seizures should not take Ampyra.ued this new safety warning as part of their Safety and Adverse Event monitoring program.
October Newsletter 2012
Newsletter Sept/Oct 2012
1139257/SC041990
Page 3Bun loafRecipe
Page 5 Reverse Bunji-Jump
Page 7Hello from Emma Clegg
Page 10Sleep Problems
WIGAN
after starting on the drug. Some people taking this drug for Multiple
Sclerosis may be at risk of having seizures in the first few days or weeks of taking the
out any kidney problems or any
kidney function while you are taking the
stration (FDA) in
The FDA looked over information they have been getting about seizures. On July 23 they
the drug may be at risk for seizures, especially
ction can raise the levels of the drug in the blood. If the kidneys are not working properly, the drug cannot
The new safety alert urged doctors to monitor kidney function while their patients are . Blood tests at least once a year should be done to check for kidney
ued this new safety warning as part of their Safety and Adverse Event monitoring program.
Newsletter 2012
Multiple Sclerosis Society Wigan Branch 2 Newsletter Sep/Oct 2012
“Just Jane’s Vintage & designer Clothing”
“E-Motion Therapies”
AromatherapyReflexology
Ladies pamper eveningCome on Girls spoil yourselves at our Pamper Night
To be held at Pemberton Social Club, Enfield St, Pemberton, on the 16th October 2012Don’t miss out on this Great night come and spoil yourselves, “you deserve and it!....”
Doors open at 7pm entrance fee £3
We have all of the following and plenty more. So please come and support us!All proceeds go to the Wigan MS Branch, “Thank You”
łłłł
This year we thought a Christmas Night out, with a Hot Pot supper may be preferable to the Annual January Dinner
MLC
The event will take place at St Jude’s Rugby Club, Keats Avenue, Poolstock Lane, WiganWN3 5UB, on Friday 14th September at 7.30pm.
The above band will be supplying the music for you. They play and sing songs from the previous decades.
The night will be free for Members and their partners. Additional family members will pay a charge of £3.
Please ring Tracy or Janet on 01942 323 836 between 10 am – 3pm, to order tickets for your extended family members
Events Page
Body shop Make-up DemosJewellery Raffle
“Wigan Wellness Centre”
MLC (Mid Life Crisis)
Are a very experienced Pop/Rock band who are all in their 50’s, they’vebeen Gigging, & friends for 35yrs
Jeff- Guitar & VocalsPaul Drums & VocalsNeil Keyboard & VocalsBryan Bass Guitar & VocalsGood range of music from Beatles–Pink Floyd
Multiple Sclerosis Wigan Branch 3 Newsletter Sep/Oct 2012
This Bun loaf recipe was sent to me by my sister Emily.She tried it last year (with the brandy of course) and gave it the thumbs up. With Christmas creeping up on us I thought why not get your aprons out and give it a try.
Bun LoafI lb mixed fruit4ozs butter 4 ozs brown sugar4 ozs plain flour4 ozs self raising flour 2 eggs1 tea cup of water1 tsp mixed spice1bi-carb 1pinch salt
MethodPut all except flour and eggs in a pan.Boil gently for a few minutes,Stir and let cool then stir in the flour and eggsTurn into a 2lb loaf tin and bake at gas mark 3 for about 2hours.
You can add a drop of brandy if desired.
Leigh GroupThe Leigh group are sorry to announce there will be no Harvest Festival in October due to circumstances beyond their control and send their apologies..
Their Group still meet each month at the Sports village in Leigh.
If you wish to receive more information about this group and the events they will be having in the future.
For more informationPlease e-mail Sue O'Connell @: [email protected]
Quick Crossword 18
Across1. Snake (5)4. Saying (5)7. Villainous (9)8. Way out (4)9. Bee house (6)12. Maelstrom (6)13. Desiccated (4)16. Allowed (918. Trench (5)19. Indigent (5)
Down1. Obscure (5)2. Wicker basket (7)3. Prevalent (4)4. Precipitous (6)5. Fuss (3)6. Composition (5)10. Abbreviate (7)11. Gusto (6)12. Lacking taste (5)14. Journal (5)15. Stupefy (4)17. Furrow (3)
Multiple Sclerosis Society Wigan Branch 4 Newsletter Sept/Oct 2012
To:People affected by MS in the Wigan Hi there,
The Wigan branch of the MS Society has been growing over the last few years and now provides a wide range of activities and services to the MS community. Just some of the initiatives are:
x Exercise with pilates and yoga classes at various locations around the branch.
x A counselling service supported by the branch
x The shop and drop in where there are people to talk to and a wide range of MS literature to pick up
x A regular coffee mornings and pub socials
x A regular newsletter, web presence and active Face book page
x A grant giving service for home adaptations, mobility aids and much more
x A wide selection of fundraising activitiesx Information eveningsx A selection of fundraising events that
raise money; our profile and are usually fun!
That is quite an impressive list and whilst we would like to hear from anyone willing to help, we have many great volunteers who are happy to keep this going and do more. However, we would struggle to be able to carry on successfully if we didn’t have a Treasurer to keep the books, pay invoices and manage donations which is why I am writing to you all.
After many years on the committee Ann Parr, our long serving Treasurer, wants to set aside the calculator and call it a day. She has really done a great job but we now need to find someone who can take this on.
The role of the Treasurer is to oversee the financial activities of the branch and givefinancial advice to the committee. Specifically the Treasurer must
x maintain accurate and up-to-date accounting records for the branch
x ensure proper financial controls are established and complied with
x be prepared to act as one of the bank signatories
x submit accounts to MS National Centre and any other financial reports as required
A full role description can be found at:
http://volunteers.mssociety.org.uk/volunteer-basics/roles
We are really looking for someone with book-keeping skills or some experience of working with financial systems.
Ann Parr, our current Treasurer, will be happy to provide a proper handover and we have a regional volunteer who can also help. The MS Society provides written guidance, organises introductory courses and forums for Treasurers and we employ staff at our National Centre to assist.
Obviously the time commitment depends on the individual but generally speaking it would be about 90 minutes a week plus attendance at a monthly committee meeting.
This is a great opportunity for someone who wants to make the most of a skill they have, meet new people and play an important part in helping us maintain and develop local services.
Could you help or perhaps encourage someone with the skills to come forward to support the branch?
If you would like to know more then please call me on 020 8438 0918 for a chat or email [email protected].
Yours sincerelyLeo BrightleyLocal Support Development OfficerHoughton Farm, Briercliffe, Lancashire BB10 3PW
Multiple Sclerosis Society Wigan Branch 5 Newsletter Sep/Oct 2012
I increased my knowledge and understanding of MSI was diagnosed in 1997, when I was 50. I only found out two years later when a new consultant was appointed, that I had Primary progressiveMS. This led to me taking ill-health retirement in 2000 from my social work job.
I found I was not given a lot of information at this stage and I chose to find out for myself, both about local and national services and provision.
I attended as many courses and lectures as
possible to increase my knowledge and understanding about MS. I discovered the local MS therapy centre and attend there for various therapies. It's now too far to drive myself and cope with the therapy. I link up with a friend who also attends, whose husband drives both of us there or sometimes my partner takes me when his commitments permit. Social contact with other MS sufferers is as important as appropriate practical help.
Up until now there has been considerably less information about primary progressive MS but I am pleased to see the MS Trust is redressing the balance a little with the new book, Primary progressive MS exposed
I fractured my femur in a fall in December 2009 and the recovery has complicated life somewhat. It has taken much longer than I expected. Fortunately (I think) I broke my already MS-affected leg. My foot drop is worse since the fall but at least my good leg still works quite well! Finding comfortable and appropriate footwear that I can actually walk in properly is a HUGE ongoing and expensive problem.
Reverse Bunji-Jump
Reverse Bunji - JumpOur new Fundraiser Susi has raised £800, with money still coming in after completing a reverse Bunji Jump.
Susi has raised to date, £800 with monies still coming in. Personally, I think she’s
daft, but, very very brave. And if I wore a hat, I would take it off to her.
This is her in the air. I feel sick just looking at the picture. You can tell I’m no hero.“Well done Susi. I know you’re our fundraiser, but you didn’t have to be raised so high to get us funds. “You are my hero” and on behalf of the Branch,
“Thank you so much”
Celia Byham
Strong people know how to keep their life in order.
Even with tears in their eyes, they still manage to say, “I’m ok” with a smile
Multiple Sclerosis Society Wigan Branch 6 Newsletter Sep/Oct 2012
Wigan Branch MS Society:Contact Number: 07963345329
National MS Society
Central Duty Team: 01942 828 777Disability Resource Centre:01942 700889Crossroads: 01942 700 612
Address: 372 Edgeware Road, London,NW2 6DNTel: 020 8438 0700
Website: www.mssociety.org.ukEmail: [email protected]
National MS Helpline0808 800 8000 (Mon-Fri 9am-9pm)
Local Support Development ManagerLeo Brightley: Tel, 020 8438 0918Mob: 07788717589
Service Development OfficerTracey Cole: Tel: 020 8438 0984Mob: 07919698308
MS NursesDenise Winterbottom at Salford Royal(Formerly Hope HospitalTel: 0161 206 1611
Carolyn Cairns at the Walton CentreTel: 0151 529 5645
Karen Lea, Community Matron for Neuro Sciences. Taylor Neuro Community Team, STOT Unit, Leigh Infirmary, the Avenue, Leigh WN7 HIS.Tel: 01942 264 255
Therapy Centre Ince, WiganMarsh Green Community Centre,Kitt Green Road, Wigan, WN5 0EFPhone No: 01942 217 696Mobile No: 07759286285
Adult Services Area Offices Aspull: 01942 832 592Golborne: 01942 728 603Ince: 01942 828 479Leigh: 01942 404 523Standish: 01942 832 592Tyldesley: 01942 404 765Wigan: 01942 487 901Carers Centre: 01942 683 711
Social Security Offices: Wigan: 01942 758 000Leigh: 01942 236 700
Continence Advice Services:Tel: 01257 501 340
Wigan Independent Advice Services:Tel: 01942 324 851.
Young Carers Free Helpline:Tel: 0800 169 3669
Shop MobilityTel: 01942 776 070
Ring & RideEnquiries: 01942 492 252, 7.30am-5.00pm
Booking Wigan Area:01942 829 444, 9am-11am
Booking Leigh / Atherton:Tel: 01942 829 400, 9am-11am
Wigan & Leigh Wheelchair Service:Tel: 01204 390 742 (24hr-365 Days a Year)
Carers Helpline: 01942 606 086Monday-Friday: 9.00am-10.30pmSaturday-Sunday: 1.00pm-10.30pm
Contact List
Support for young peoplewww.mssociety.org.uk/pieces
Aimed at people aged 18 – 40.
Kids and Teenswww.youngms.org.uk
Young Peoples Newsletter!!www.staying-positive.co.uk
Multiple Sclerosis Society Wigan Branch 7 Newsletter Sep/Oct 2012
For sale- K2 WheelchairThe K2 is brilliant!.. And my wife Christine is only selling it to make way for a powered chair of the same design by the same company.It was manufactured in 2010 and is in absolutely excellent condition and would make a fantastic purchase for somebody that did not want to buy new. To buy the K2 new would be in the region of £5000 dependant on extras required, and we would like to advertise it in your newsletter for £2250. For further enquiries ring: 07753812018:
A photograph of this Item was sent to me, but for some reason it was blocked. For further information, please ring the owner on above number. Thank you………
HELLO FROM EMMA CLEGG, RESIDENT COUNSELLOR/PSYCHOTHERAPIST AT THE WIGAN BRANCH PREMISES!!!
Hi everyone, hope you are all well and happy. Appointments are available to MS Society members and close relatives to see me Monday to Friday during shop opening hours, for £5 contribution, first session free. Telephone the shop or myself for more details. Home visits are by special arrangement only.
With the LADIES’ PAMPER EVENINGcoming up on 16th October I thought I’d mention a bit about Colours, as I am doing a “slot” then about Colour Consultancy, a subject that I love and am trained in.
Colour has profound Psychological effects on people. I see a lot of depressed clients both MS Society members and non-Society members, whose dress reflects their mood, ie greys and blacks are very common. Introducing colour into your life in the form of jewellery, accessories, décor, home items etc. while depressed can lift your mood significantly, although this is not the total answer to depression of course. Below are some colours and their Psychological effects which you might like to consider: YELLOW - positive, inspiring, warming, comforting, productive.
RED – strong, vital, stimulating, energetic (not recommended for regular usage by anxious or depressed individuals).
07753812018ORANGE – energizing but less energetic than red, joyful, happy.
GREEN – balancing, harmonizing and empathetic, cleansing.
BLUE – peaceful, inspiring, contemplative, tranquil.
Colour Consultancy is the means by which an individual’s personal colour palette can be discovered, based on the four seasons, so is quite different to Colour Psychology. Knowing your palette saves time and money. To find out more about it, do come to the pamper evening, only £3 admittance. ƀ
A Very Proud Mum
This is Janet Anderson our shop Facilitator.
Her daughter Sophie graduated from Edge Hill University this summer with a BA Hons Degree in Journalism. And just like any proud mum, wanted to tell the world of her daughter’s achievement.
Well it’s not quite the World Janet, but it’s a whole lot of Wigan. Well Done Sophie!.. (Don’t think about taking over my little bit of journalism) Ha Ha
Multiple Sclerosis Society Wigan Branch 8 Newsletter Sep/Oct 2012
MS Trust Christmas cards
now on saleAuthor: MS Trust
The doors to our Christmas web shop opened on Friday and we have already received over 40 orders!
Thank you to everyone who has already placed an order.
By sending MS Trust Christmas cards, you will be helping to raise awareness as well as much needed funds.
When you buy your cards directly from the MS Trust, 100% of the profit will go towards funding our work.
There is a great selection of cards available and some fantastic stocking fillers too, such as our brand new MS Trust shopping bags, wristbands and ducks. MS Trust Christmas web shop –order today!
Free Phone Information Service
0800 032 38 39
Talking Book ServiceWhen I first started to lose my sight many years ago one of the things I was devastated about was the thought of not being able to read books as I have always been an avid reader. I tried large print and magnifiers but even with those I struggled and began to feel as if it was all a useless exercise. Then I discovered talking books, and was amazed at the huge variety of authors and genres they covered. The books are on tape and cd so all you need is something to play them on.
When I moved back to Wigan 3 years ago I spoke to the local library to find out about getting books through them and found it all surprisingly simple. All I had to do was tell them what kind of books I like and the Talking Books Service sends them to the library for me to collect. They normally send around six books at a time and when I am on the last one I give them a call and they send the new ones to replace them. Couldn’t be easier !! They will find specific books if there is something in particular you want to read and also deliver them to your home if you have difficulty getting out.
All this is free of charge.
So if you are missing out on a good book because of sight problems and would like more information call in at your local library and speak to the Talking Book Service, or give them a call on 01942 486984
Somewhere betweenlaughing for no reason, innocent smiles, Long
talks and making fun of each other, I fell in love
Multiple Sclerosis Society Wigan Branch 9 Newsletter Sep/Oct 2012
To keep up to date with all that ishappening in your branch
Log on our Website;www.mssociety.org/wigan
Come and join us at our coffee morning!
They take place at the Mount Hotel Orrell, every other Tuesday @ 11am.
We have quite a number of interesting members who join us (Men & Women)Our next Coffee Morning is Tuesday
October the 2nd and fortnightly onwards.
“Look forward to meeting you there!....”
Free PilatesClasses
Every Tuesday@
The Therapy CentreMarsh Green Community Centre,
Kitt Green Road,Wigan, WN5 0EF
Pilates class 12.30pm – 1.30pm
“Plus our new Class”
Which has started at theCommunity Life CentreUpper George Street
Tyldesley
Every Tuesday @ 2pm-3pm
With our Neuro-Physio TherapistVicki
Please phone Tracy to book a Session!
Phone: 07963345329 or the Charity shop,
On: 01942 323 836
The classes are free to people with MS. Paid for through donations and
fundraising.
Sadly missed member of the MS Wigan branch
Mark, Paula and family would like to thank everyone for the kindness, support and expressions of sympathy at this very sad time.
Very special thanks to all who helped care and support Edna during recent years
Donations in memory of Edna went to the Multiple Sclerosis Society Wigan Branch
Multiple Sclerosis Wigan Branch 10 Newsletter Sep/Oct 2012
Sleep Problems in MSPoor sleep is common in people with multiple sclerosis, with about 50% of people with MS reported to experience some form of sleep disturbance.
Poor sleep quality and quantity can impact on daily life, causing daytime sleepiness, decreased concentration and memory,worsening depression, and the inability to work effectively. A lack of sleep can also lead to low energy levels or make fatigue(and other symptoms of MS) much worse.
The types of insomnia that people with MS may experience include difficulty falling asleep, difficulty maintaining sleep (such as waking up during the night or not being able to fall back asleep immediately) and early wakening.
By addressing the causes of the poor sleep quality and establishing good daily sleep habits, people with MS can greatly improve overall energy levels and quality of life.
Causes of sleep disturbance in MSThere can be many reasons why getting good quality sleep is difficult:
MS related symptoms that make sleep difficult or interrupted. These include:
� spasms
� pain (neuropathic or musculoskeletal)
� restless legs syndrome
� anxiety or depressionn
� side effects of certain medications
� nocturia (the urge to urinate frequently at night)
� sleep apnoea (abnormal pauses in breathing)
� high levels of daytime fatigue
Family responsibilities that mean less time available for sleep
� Concerns and worries that make it difficult to 'switch off' and drift into sleep or produce restless sleep
� Being less active, which can alter sleep patterns as can a lack of exposure to daylight.
Treatment and managementSymptom managementSleep disturbance may be due to a variety of symptoms related to MS and many of those symptoms are treatable or may be improved by changing medications or altering the time the treatment is taken. For example, treatment options for pain can include medications such as gabapentin, which has been shown to improve nocturnal pain and also promote restorative sleep.
General tips improving sleep qualitySleep quality can be improved by establishing regular habits or good 'sleep hygiene':
� try to stay as physically active as possible during the day, but allow plenty of time to wind down before bedtime
�avoid getting overtired by doing too much, as being too tired can make it difficult to get to sleep
�ensure some daily exposure to sunlight and avoid bright lights in the evening
�avoid unnecessary stress or stimulants (eg caffeine, chocolate, alcohol) in the late afternoon and evening
�keep the same nightly ritual every day throughout the week
�establish a bedtime routine that can include, for example, relaxation, a warm 'milky' drink, taking a warm bath
�only use the bed as a place for sleeping, not for other activities such as watching TV
� instead of lying in bed awake, after 15 minutes of not sleeping get out of bed and do something calming or boring, and return after a short period of time
�avoid getting too hot; although some people find having cold feet can also disturb sleep
Multiple Sclerosis Society Wigan Branch 11 Newsletter Sep/Oct 2012
DonationsSacred Heart £16 -07Stag at Orrell £46-40The Mount £61-06
Mr Mrs Longson in memory of -Nellie Ratcliffe £50
Mrs Kath Isherwood in Memory of her Mother, Mrs Sally Scully, £115
Paula Sandland, in memory of Edna Sandland £150
Emma Clegg £20-00 Emma Clegg £10-00
Mr N Pont Fun Fair £200
Tesco collections, Leigh: £67.71
Tesco Collection, Atherton: £300.12
“Thank you so very Much”
Wigan Branch
Who’s who in the Wigan Branch?www.mssocietywiganbranch.co.uk
Chair person: VacancyTreasurer: Vacancy
Vice Chairman: Jan Hough
Welfare Support Officer:Leigh & District Martin HoughWelfare Phone No: 07963345329
Volunteer Co-ordinator & Information OfficerTracey WadsworthPhone No: 01942 323 836
Treasurer: Dr Ann ParrTel No: 01257 424 168
Donations: 22 Parkway, Standish Wigan. WN6 0SJ
Editor: Carol CritchleyTel: 01942 207 483Mobile No: 07580894246
Lucky Numbers: Ken SuttonTel: 01942 715 349
Secretary & Social Media Officer:Ben CusickTEl: 07708228714
Shop Facilitator: Janet AndersonTel: 07878709102
Fund Raiser: Susi TidmarshTel:07756583709
Social & Events co-ordinator:Vacancy
MS Charity Shop Phone No:01942 323 836Email: [email protected]
Solution to Quick crossword 18
Multiple Sclerosis Society Wigan Branch Back Page Newsletter July/August 2012
The MS Newsletter is published by theWigan Branch of the MS Society
We give regular up-dates about MS and what is happening locally in theMS Community
Editor: Carol CritchleyContact No: 01942 207483E-mail: [email protected]
DisclaimerAll the views expressed in the publication are individual and not necessarily the view or the policy of the charity and its supporters.
We will be pleased to receive your comments, poems, jokes, or any articles you wish to share with us.
Please send to the above E-mail address
Happiness is not a destination
It is a way of Life…
Have a Great Day!
Wigan MSS “Lucky Numbers”Results
Draw August 2012
1st £40 No 51 Mrs J Kenyon
2nd £20 No 28 Mrs A Irvine
3rd £10 No 3 Mr B Sutton
4th £10 No 122 Mrs M Higham
Draw Sept 2012
1st £40 No 33 Mr& Mrs J Fairhurst
2nd £20 No 171 Mr K Wright
3rd £10 No 146 Mr B Jackson
4th £10 No 109 Mrs JS Bennett
6 months remaining if you wish to join our lucky numbers. Please call Ken Sutton on: 01942 715 349