help us to contact you - ms therapy centre beds & northants€¦ · news 3 ms therapy centre...

Help us to contact you We are updating all of our records so that we can make sure we have your current details. Add your name to our contact list (some of you may have already signed up via the online form or paper form at the Centre. If you are not sure, do it again!) u  Return form overleaf to reception u  Sign up via our website

www.mscentrebedsandnorthants.com/gdpr u  Email [email protected] u  Phone 01234 325781

By providing your details, you consent to us sending updates and news to you in accordance with our privacy statement, which can be found on our website - www.mscentrebedsandnorthants.com

Your newsletter is inside

Please bring this form in to the MS Therapy Centre, or post to: MS Therapy Centre 155 Barkers Lane Bedford MK41 9RX It is also helpful if you tell us if you no longer wish to receive communications from us.

CentrePiece

AUTUMN 2018

www.mscentrebedsandnorthants.com [email protected]

01234 325781 Newsletter deadlines – 1st of Feb, May, Aug and Nov

News from the Beds and Northants MS therapy Centre

•  News p3/4 •  Staff News p5 •  Spasticity training p6 •  Events coming up p7 •  Thank you p8 •  Christmas p9 •  Community p10 •  Accessible motorhome p12 •  Recent events p14/15

•  Events p16 •  Finances p17 •  Therapy Timetable p18 •  MS & employment study p19 •  Fire & Ice challenge p20 •  Carers workshops p21 •  Power chair for sale p22 •  Miranda’s blog p23 •  Minibus spaces p28 Christmas Bazaar Sunday 25th November

Beds and Northants MS Therapy Centre

CHARITY NO 802510

2

@MSTherapyBeds

Beds & Northants MS Therapy Centre

Bradbury House 155 Barkers Lane

Bedford MK41 9RX

Tel: 01234 325781 Fax: 01234 365242

Email: [email protected] Web: mscentrebedsandnorthants.com

Patrons HM Lord-Lieutenant of Bedfordshire, Helen Nellis

Roger Jefcoate CBE, DL Clifton Ibbett OBE Alastair Compston CBE, Professor Emeritus of Neurology

Centre Manager Tracy Mckenzie

Trustees: Kay Taylor (Chair), Frank Sudlow (Treasurer)

Sue Napper, Alex Scott, Jean-Pierre Brown, Melanie Hawman, Karen Lathaen

Oxygen – David Greenwood

Fundraising – Paula Priestley, Robert Barker Gifts - Jill Bozdogan & Kathy Dear-Miles

Jane’s Bazaar –The team The Emporium – Rita Lewis and Rose Beal

NEWS 3

MS Therapy Centre 01234 325781

Your Contact Details –PLEASE fill in the form on paper or online so that we have your current details, and do not lose touch with you!

Your copy of CentrePiece – Please remember to tell Tracy if you could receive the newsletter as a PDF file by email. It would save us paying for the postage.

Bowen therapy– Due to demand from members, the Centre now has some extra hours of Bowen appointments available each week. This should reduce the waiting times between appointments, and allow more people to be seen. Alternate Mondays and Tuesdays 9.30-1.30 Alternate Thursday evenings 3.30-6.30 Please ask at reception for appointments.

Booking Oxygen Therapy – We are upgrading to a more efficient and reliable system for booking slots for Oxygen Therapy. Please be patient as we move to the new, improved system. Toreserveyourslotsplease:callbetween9–2,seeTracyorHarrietinpersonoremailonrecep:[email protected]

Seating workshop - Linda has organised a date for someone from Helping Hand Company to come to the Centre on Thursday 9 August (morning) to demonstrate their standing chairs (rise and recline) and their wheelchair cushions. Linda attended their workshop earlier in the year to see their products and would highly recommend you come along. Their website is www.ADLEssentials.com

Annual MS Nurse Assessments – We will no longer be sending annual reminder letters about assessments with the nurses. You are welcome to make an appointment with Miranda or Emma any time you would like to, whether it is for an urgent issue, or just to catch up and discuss your symptoms in general. Please ask at reception or call 01234 325781.

NEWS 4


Your copy of CentrePiece – Please amend your contact details & tell us if you could receive the newsletter as a PDF file by email.

Group for Younger People –Don’t foget this support group of peers, a chance to meet new people and a step in the direction of easing some of the fears and anxiety surrounding MS. The group will meet whenever people want to, and you can also join in by video chat. If you are interested, please contact the Centre on 01234 425781 or Frank Profeta on 07580529647

Therapy Donations - the new system for non-regular attenders Our aim is that everyone gets the treatments they need and donates what they can afford. You can donate “pay as you go”, but for regular attendance, we suggest a regular donation of £40 or more per month. Please set up a standing order for this. If you have difficulty making a donation for your therapy, you can always help out at collections or do a fundraising event. Please speak to Tracy or one of the trustees if you are struggling.

Thursday Evenings at the Centre – Thursday evenings now include: Physiotherapy until 6pm, reflexology every fortnight, Bowen Therapy every fortnight until 6.30, and an oxygen therapy session. If you would like to see the MS specialist nurse on Thursday evening, please let Tracy know.

AGM - The AGM was a very well-attended event. Presentations were made to staff, volunteers & supporters by one of our patrons, Helen Nellis (see photos in this newsletter). Full reports are available on our website & article on finances p17. Dominic Quirke, has retired as a trustee due to other commitments. We are very grateful for all that he has contributed, including the fantastic charity balls. See advert for Dom’s Hallowe’en event on p16.

A new trustee will be co-opted onto the committee until the AGM next year. Laurence Culhane says "I've worked in BBC Local Radio for more than thirty years, first coming across the Therapy Centre in the early nineties when I interviewed someone for my programme on Radio Northampton. I certainly wasn't expecting to need its brilliant services myself twenty years later!!! I know there are lot of people with MS who work and I'd like to see us make it easier for them to benefit from what's on offer here.”

5


We are sorry to say goodbye to Lorna Spicer and Lyn Bradshaw. Lorna has been working as a reflexologist at the Centre for 16 years, and will be retiring to Dorset. Lyn has been providing shiatsu sessions for over 18 years. Both will be sorely missed.

STAFF NEWS

Ros, physio, will be working four days per week from now on. She will work every Monday, but eill rotate her other days off throughout the week so that all of her clients will still be seen regularly.

Paula is looking for pubs, clubs, shops and other venues to put our collecting tins in to. If you are able to take some into your local area and then collect when they are full that would also be very much appreciated.

Collection Tin Venues Required – Can you help?

Roger Prettyman is retiring as oxygen operator after 13 years. He has been a valuable member of our team of volunteers providing oxygen therapy to our members.

Jane, Pam and Eileen will all retire in August. Jane is now 94 years old and she and the team have worked tirelessly at the Centre for many years, running the used clothing shop, Jane’s Bazaar, which adds a large amount of our income each year. Thank you Jane and team! We will hold a ‘thank you’ tea and cake afternoon on Thursday 16 August 1pm – 3pm. All are invited!

John Chasey, another volunteer oxygen operator celebrated his 90th birthday recently. John and his wife, Annie, were very honoured to be invited to a garden party at Buckingham Palace in June.

6


STAFF TRAINING - SPASTICITY

So, what is spasticity? It is defined as “ a motor disorder characterized by a velocity-dependent increase in tonic stretch reflexes with exaggerated tendon jerks” (Lance 1980), which means the muscle has increased tone making it feel tight or rigid and the reflex is exaggerated. Causes of spasticity.. When a muscle contracts/works it shortens and increases in tone. This is the result of a message carried along nerve pathways. When these pathways become damaged as in MS, the message to relax the muscle can be disrupted, causing the muscle to stay in the contracted state. Triggers to spasticity.. There are various things to keep an eye on that can have an effect on spasticity such as an infection, pain or skin sores, bladder and bowel issues, seating position, tight or uncomfortable clothing and sleep. Treatment.. The key point to come out of the course was that there is a vast array of treatment options available including medication, physio, Botox injections, splinting, baclofen/phenol pumps and surgery. And the sooner treatment is started the better!

In May, Linda and I attended a two day course on Spasticity at the National Hospital for Neurology and Neurosurgery at Queens Square in London. The aim of the course was to give us a better understanding of the causes, assessment of and treatment for spasticity , some of which I hope will be useful to share with you. Louise

7 EVENTS COMING UP – BUY TICKETS FROM THE CENTRE

Email articles to [email protected]

We always need gift baskets & raffle prizes please!!


Find out about all of our fundraising events as soon as they are announced by following us on Facebook

March 23rd Fri 7pm – 10.30 At the Centre £10pp

CHARITY SALES Third Saturday of every month 10am – 12noon

Aug 18, Sept 15, Oct 20, Nov 17

Quiz Night Fun and Food. 6 people per team – get your team organised!

STORE COLLECTIONS 12th September Budgens Bromham 5th December Milton Ernest garden Centre 20th December Tesco Riverfield Drive

FIRE AND ICE EVENT (see p20) Walking on fire and glass!! Let Paula know if you are brave enough

to take up this challenge in the autumn.

If you or a relative can help with any of these events, please let Paula know. Phone 01234 325781 Email [email protected]

QUIZ (see p16) Teams of 6

Date: Friday 12th October Time: 7pm Venue: MS Therapy Centre Price:£10 includes buffet

HALLOWE’EN PARTY (see p16) Dare you dress up?

Date: Friday 26th October Time:7pm – 1am Venue: Sharnbrook Hotel Price: £35 includes dinner, entertainment

CHRISTMAS BAZAAR Always a lovely event. Santa’s grotto, stalls, gifts. Date: Sunday 25th November Time: 1pm – 4pm

Venue: MS Therapy Centre

8


Thank you! Thank you to The Chosen Charity for their kind donation of £450. The donation was raised by running a netball event. One of our members is known to the charity, representatives of which came to present a cheque at the Centre in July.

We have some lovely art work in our refurbished hydrotherapy pool area thank you to one of our members, Mandy Knight. The artwork looks wonderful!

We are very grateful for the generous donation from the Bedford Lions Group of £1000. Derek Beazley presented the cheque to manager Tracy Mckenzie. The group have been using our premises for their meetings, and held a race night to raise money to say thank you.

The staff and customers at the Ship Inn have supported us all year, raising funds to purchase a therapy couch for shiatsu and a changing table for our hydrotherapy pool. We thanked them at our AGM with a presentation by our patron HM Lord-lieutenant of Bedfordshire Helen Nellis.

9


CHRISTMAS AT THE MS THERAPY CENTRE

We always need good raffle prizes, and are very grateful for any unwanted gifts or wicker baskets that you might have. Thank you! [email protected]

Our ever-popular Christmas Bazaar will be held on Sunday 25th November from 1 – 4 pm. Please come along! We also need volunteers to help, plus donations of tombola prizes please.

Grand Raffle tickets are now available. If you receive your newsletter by email, please pick up some books from the Centre and sell as many as you can. First prize is £250 with plenty of other prizes to be won.

Our Christmas hampers are very popular. We can raise lots of funds if we can find more locations to place them. Could we put one in your workplace or local pub?

Cheap Christmas cards available! We have old stock Christmas cards available at cheap prices! Would your friends or family like some?

10


Thom has cycled from Land’s End to John O’ Groats! www.justgiving.com/fundraising/MS-cycle

Michael Dyer ran the Bedford 10K in memory of his father and raised £870 www.justgiving.com/fundraising/michael-dyer4

OUT IN THE COMMUNITY

What does it feel like to have MS? Miranda, Emma, and quite a few other people got a taste of it the other day in Barclaycard Northampton. It feels like weights on your arms, weights on your legs, weird glasses, oven gloves & gloves on your hands, a spongy-floored obstacle course and standing on a wobble board to do the nine hole peg test. Miranda and Emma were raising awareness of MS and the MS Therapy Centre at the workplace of one of our members.

Paula spent a lovely evening with Renhold WI talking about the work of the MS Therapy Centre. Thank you for giving us the opportunity to spread the word on what was a very warm night, and thank you for your donation.

Charity Groups & Workplaces Are you a member of a local charitable group, or a social group that could hold a coffee morning or social event to raise funds for us? Would you like us to come to your workplace or hobby group to raise awareness?

11

3rd SATURDAY OF EVERY MONTH 10AM – 12Pm

R R DAVIS LTD 47 Andrew Road Eynesbury St Neots PE19 2QE. Phone: 01480 812760 or 01480 475864 Mobile: 07885617295 or 07889694274

Plumbing & Heating Installations Bathroom Installations

Oil & Gas Heating Installations

Oil & Gas Boiler Installations

Oil & Gas Boiler Servicing.


Linda says: I hope that you have all noticed that my Christmas Cards are now on sale in the main area, along with my scrabble art and a few new Christmas lights, proceeds of which all come to the Centre. Thank you to all those who have already purchased or ordered a frame, all finished pieces can be seen on my website. www.facebook.com/LindasEpiphany

Unwanted Christmas Presents If you have any wanted gifts, chocolates, biscuits or smellies etc. Please donate to the Centre and we can use them for raffle and tombola prizes at future events. Thank You Paula

Caring for you,in the homethat you loveHome & Live-in carefrom Bluebird Care

Email the Bluebird Care [email protected]

or call us on 01234 211481bluebirdcare.co.uk/bedford

12

How can I help to

raise funds without much

effort?

£0.00£1,000.00£2,000.00£3,000.00£4,000.00£5,000.00£6,000.00£7,000.00£8,000.00£9,000.00

2016

2015total

INFORMATION FROM OUR MEMBERS

Buy gifts in our charity shops Add a donation to us when you sell on Ebay

Use Easyfundraising website/App Bring old CDs or DVDs

Bring recycling – rags, bedding, shoes

One of our members and her husband have recently bought a wheelchair accessible motorhome, and they say it is fantastic! After holidaying in their static caravan for many years, they are now able to journey around the countryside. Motorhomes come with a wet room and ramps as well as everything else you would expect including kitchen facilities.

Donate by TEXT! Please spread the word – Text MSTC32 £10 to 70070 to donate to Bedford MS Therapy Centre today (Or any amount of your choice). Or use our ‘Justgiving’ page www.justgiving.com/bnms

You can also hire one to try it out, if you don’t want to buy one. See www.coachbuiltgb.co.uk for more details.

13


40 Kimbolton Road, Bedford. MK40 2NR

T: 01234 340034 F: 01234 212640

E: [email protected] www.colletthulance.co.uk

At Collett Hulance we specialise in taking away the hassles and headaches of accounting from your business. We can handle as little or as much as you like and, above all, we are a friendly team who get the job done quickly and efficiently, leaving you to get on with running your business. x Accounting and tax returns x Corporate services x Audit x Payroll x Bookkeeping & VAT x Personal Tax x Business advice x Specialist sector services Call us today on the number above to arrange a free consultation.

Two specifically designed wheelchair accessible cottages offering:

• Ensuite wetrooms• Electric profiling beds• Air/pressure mattress• Hoists

• Shower chairs• Riser/recline chairs• Local care available• Adapted kitchens

We are only 15 mins from Truro and 30 mins from the Eden Project, makingTreworgans Farm Holidays the ideal place to explore this beautiful county.

We are also very close to the Merlin Project, Cornwall’s MS Therapy Centre.

01726 883240 / 07762 173860www.treworgans.co.uk

TreworgansACCESSIBLE HOLIDAY COTTAGES IN CORNWALL

14 SOME OF OUR RECENT EVENTS

.

The MS Therapy Centre was the charity of the year for Taste Bedford – a fantastic food festival that took place by the river on Saturday 16th June. Our volunteers helped with lots of tasks including setting up the event, working on our tombola and information stall and in the food tent. Gill Taylor with Howard from the Great British Bake Off.

We are very grateful indeed to Simon and Benjamin for performing for us at St Andrew's Church in Ampthill. We heard some beautiful music and raised funds for the MS Therapy Centre at the same time. The evening raised £659

Once again, we had a sell-out event for Philip Kinsella, psychic medium. Philip very kindly gives his time for free, and provides comfort and reassurance to the people who come to hear words from their loved-ones. We raised £1053

Our thanks also go to Ciro and the team at The Sharnbrook Hotel & Vesuvio Restaurant and the students at Mark Rutherford School. Please get your tickets for our Halloween event on 26th October!

Congratulations and thank you Dominic Quirke for organising another excellent ball. The fantastic sum of £6,549.64 was raised and donated to the Centre. Thank you to everyone who attended, and to the numerous people and local businesses that donated prizes for the auction & raffle.

15 SOME OF OUR RECENT EVENTS (CONT)

100 Club Winners in last 3 months May 1st Phil Moreton £75.00 2nd Pauline Burgoyne £45.00 3rd Victoria Lowe £30.00 Jun 1st Jill Bozdwgan £75.00 2nd Patricia Hains £45.00 3rd Alison Siddons £30.00 Jul 1st Sophie Thorius £75.00

2nd Stephen Pritchard £45.00 3rd Gordon Staple £30.00

.

Strawberry Tea and Fete. It was a sweltering day for the fete this year. Thank you to everyone who helped at the event, and who attended. We raised a total of £2,040. We were pleased to have a surprise visit from our MP Mohammed Yasin. Mr Yasin will visit the Centre soon to see the facilities that we provide here, and meet some members.

Spicy fun at Edible Ornamentals. Thank you to the team at edible ornamentals for a very enjoyable evening of spicy food, information about growing chillis, and chilli tastings. Due to low turnout, we didn’t make much money. Please try and attend the Centre’s events..

We are posting more pictures of our activities on our Social Media pages, to share what's going on in different areas. Please follow us if you're on social media, and remember to like, comment or share. If you have something to contribute, or can help in this please tell Tracy.

15


Quiz Night Friday 12th October 7pm

At the Centre

Book a table for your team of up to 6 people £10 per person includes buffet, drinks available to buy

For tickets call Paula on: 01234 325781 or email: [email protected]

Summer Fete & Strawberry Tea

. Hallowe’en Party

Friday 26th October

7pm – 1am

Sharnbrook Hotel £35 per person includes dinner,

dancing, entertainment

Tickets 01234 268012 [email protected]


17


WHERE DID OUR MONEY COME FROM IN 2017?

We are a self-help Therapy Centre run on the principle that you pay what you can and you receive what you need. We needed about £1000 per day. So where did the money come from to run the centre in 2017?.

In 2017 over 240 members made monthly contributions by Standing Order. This is our most secure source of funding and raised 24% of all our income.

Many members helped with our Fundraising events and collections, contributing over 13% of our income.

We could not survive without the generosity of local clubs, groups, businesses and individuals who give us money in both large and small amounts.

It’s a whole team effort when it comes to raising the funds we need. Whether your company, club, friends or charitable trust gives us funds, or you make a regular donation yourself, or you shop in Jane’s or the Emporium and support our fundraising events, or you leave us a legacy, you are making a difference and helping us to provide the support and therapies we all rely on. Thank you.

THERAPY TIMETABLE

To make appointments please ask at Reception

MS SPECIALIST NURSE Three days per week

SHIATSU MASSAGE Melita or Paula Mon - Fri

COUNSELLING Gill By Appointment

YOGA Heather Thur 11am (floor) & 12pm (seated)

TAI CHI

HYDROTHERAPY Mon - Fri Sarah

PHYSIOTHERAPY (plus orthotics)

GYM

10 – 3.30 Mon – Fri Until 6pm on Thur

10-15 Mon - Thur

Mon - Fri

Ros, Louise & Jennie Groups with Jo Linda and Jo

Various Operators Mon – Fri (some eves) 10.30, 12.15 & 1.45

OXYGEN THERAPY

CONTINENCE NURSE PLUS BLADDER CLINIC Melanie One Thur per month

REFLEXOLOGY Teresa or Patience Mon – Fri, alternate Thur eve

BENEFITS HELP As required

Miranda/Malcolm

Jenny Wed 12-1

Miranda/Emma

BOWEN

James

PEDICURE Priti

Week A Tue am, Wed & Fri pm Week B Mon am, Thur 1.30 – 6.30 & Fri pm

Alternate Wednesdays

APS

Heather & Volunteers 10-3 Mon - Fri

To make appointments for oxygen please email [email protected]

18


19


A few months ago, we advertised inviting people from the Bedford MS Therapy Centre to take part in a study on employment and cognition (thinking). If you recall, our study was trying to find out whether the JEF, a new computer-based assessment which is set in a virtual office, is sensitive to difficulties with complex thinking skills (executive function) in people with MS. We were also curious as to whether there was a relationship between the JEF and employment experiences and coping styles and how this compared to the existing tests that are used. A total of 18 people with MS and 24 healthy controls took part in the study. Everyone completed JEF, the traditional thinking tasks and puzzles and questionnaires. The puzzles included memory tasks, language games and problem-solving puzzles. Our results found that the JEF is able to detect difficulties in these complex skills, with people with MS not performing as well as the healthy control group. We also found that there was a relationship between the results of the JEF and people’s experience of difficulties at work. The harder people found the JEF, the more difficulties they reported having at work. People who found the JEF harder also used fewer helpful coping styles to manage stress. The JEF was able to detect difficulties better than the standard paper and pencil tasks used by psychologists in clinics. We hope that the results of this study will contribute to the JEF eventually being used in clinical settings, as well as highlight how important it is to understand the role of difficulties with thinking in employment outcomes for people with MS. Laura has reported the experiment in her DClinPsy thesis, which she submitted on June 1st. We are now writing a paper to report our findings in a scientific journal. Thank you to everyone from the Bedford MS Therapy Centre who expressed an interest or volunteered to take part in this study. Laura Clemens, DClinPsy Trainee Dawn Langdon, Professor of Neuropsychology Royal Holloway University of London

Result of MS and employment study

21


.

We have been awarded some funding by Central Bedfordshire Council to deliver the following free workshop for carers of people with MS in Central Bedfordshire.

Learn about the treatment,

management and prevention of

complications in the common symptoms

of advanced MS.


@MSTherapyBeds

Each 3 hour interactive workshop is led by a clinical nurse specialist in MS. Learn about problems with: • Spasticity & spasm • Bladder & bowel function • Pain • Tremor • Speech & swallowing • Cognitive & emotional effect

If you are a person living with MS, please contact the MS Therapy Centre to speak to our nurses one-to-one.

Choose your date:

Tues 4th Sept 12.30-3.30 (at The Disability Resource Centre, Dunstable) Wed 3rd Oct 1.30-4.30 Fri 2nd Nov 10.30-1.30

To book: Call 01234 325781

Workshops will be held at various venues. Please phone or visit our

website for details.

Caring for MS

Workshops for healthcare professionals, carers & family members

22 POWERED WHEELCHAIR FOR SALE


Wherever you are in Bedfordshire, Hertfordshire or North London, when you need a reliable and effective electrician, be sure to contact Graham Electrical & Sons, Ltd.

Graham Electrical & Sons Ltd, Ronald Close, Bedford M42 7SH Tel: 01234 852 852 or 07710 511 485Email: [email protected]

Days Power Chair Approximately 5 years old. Hardly used. Sale price - £250 Two Hundred & Fifty Pounds Contact details: mobile 074 114 314 71 Upon sale of the item a donation will be made to the Centre.

DON’T FORGET EASYFUNDRAISING.ORG.UK

Make your purchases by clicking through to over 3,300 popular retailers, and raise money for the Centre at no extra cost to yourself. Visit the website and register to support the Beds and Northants MS Therapy Centre to see how much we have raised so far. 1. Use the Donation Reminder They'll tell you if a donation is available as you shop on your laptop or pc 2. Use the app Available on iPhone, iPad and Android 3. Through the website Visit the site and click out every time you shop

MIRANDA’S BLOG - www.mirandasmsblog.com

24

23


Spasticity can be defined as a tightening or stiffness of the muscle due to increased muscle tone, and exaggerated response to muscle stretch. It is a common symptom of MS and can affect normal functioning, walking and posture, increase fatigue, and cause pain. If unmanaged, can lead to permanently shortened or muscles, called contractures and cause problems with all activities of daily living. Spasticity also refers to involuntary muscle contractions or sudden movements that range from a mild feeling of tightness, to severe, painful spasms, often of the legs. 'Natural treatments for MS Spasms' has been covered previously; here we are focussing more on the problem of constant stiffness. Treatment of spasticity is ideally done with the person with MS at the centre of a multidisciplinary team, with Neuro physiotherapist, Occupational therapist (OT), MS Nurse, any relevant consultant, and possibly wheelchair services all liaising with each other.


MIRANDA’S BLOG CONTINUED 24

The first thing to be aware of, is that anything that is bothering the body can trigger or exacerbate spasticity in MS, so before medication, these 'trigger factors' need to be dealt with. They include, but are not limited to: •  infection •  constipation •  urinary retention •  sore skin / pressure areas / •  anything that pinches, rubs or chafes •  increased emotional stress •  Pain

Muscle relaxant medication The key with all muscle relaxants is to start low, and go slow. You can even cut tablets in half with a tablet cutter from a pharmacy, and start with half. The idea is that by gradually increasing, every few days, you find a dose that reduces the problem, without causing too many side effects. The first medication usually tried is Baclofen, and the most common side effects are drowsiness, or feeling too weak. Because MS involves both stiffness and weakness in the muscles, you can find that a degree of stiffness is needed to maintain the strength needed for standing, so it can be a fine balance. NICE guidelines recommend Gabapentin as the next treatment to try if baclofen is not right for you. This is often used for nerve pain in MS, but also has a muscle relaxant effect. However, some people find the sedating side effects, or the fact that they are putting on weight, too difficult.


25 MIRANDA’S BLOG – WWW.MIRANDASMSBLOG.COM

Another muscle relaxant that can be tried, which is less sedating, but for which blood tests need to be done before, and for the first 3 months of treatment, to check that the liver is not harmed, is Tizanidine. Occasionally, an older muscle relaxant, Dantrolene, is tried. Diazepam ( Valium ) is also effective as a short term muscle relaxant, but it is easy to become dependent on this. Clonazepam can also be tried. When just a couple of defined muscles are causing the problems, Botulinum toxin (Botox) can be very effective when injected to paralyze these muscles. This needs to be repeated around every 3 months. Cannabinoids: There has been evidence for some time that components of the cannabis plant can help some people with MS spasticity and pain. It is often not possible to get the cannabinoid medication licensed for MS, Sativex, prescribed, so many people with MS do use cannabis in various forms; the problem being that it is an illegal drug in the UK; its use medicinally is currently being reviewed by the government. Recently, CBD oil, a legal alternative, has become widely available. In studies where there was evidence of effectiveness, doses ranged from 0.8 to 1.8mg, taken between 2-4 times a day. The easiest way to control the dose is to take it in liquid form, and start with one drop under the tongue, then increase as necessary. If effective results just can't be obtained with oral medication, a referral can be made to be seen in a specialist spasticity clinic, where a baclofen pump can be considered. This involves a tiny dose of baclofen being delivered straight to the spinal column via a small plastic tube, fitted to a pump, about the size of a shoe polish tin, which is inserted just under the skin in the abdomen. As the dose is so small, people have a lot fewer side effects than with tablets.

26 MIRANDA’S BLOG CONTINUED


The way that you sit, and lie in bed is important to break up the pattern of tight muscles. Lying with the arms and legs slightly bent, but not fully curled up, supported by pillows or a T-roll is something that some people will need a Physio or OT to help set up. OTs can also assist with night time splints to stretch out hands that have become very tight, and to help ensure that all seating and equipment is supportive. Lying for a in the prone position could help to reduce spasticity in the hip or knee flexors flexors. Check what your neuro physiotherapist recommends for you. Keeping a full range of motion is important. Start by seeing a neuro-physio, and then keep things going with Exercise. Everybody should be able to do some exercise or stretching, whether this is attending a regular exercise or yoga class, using normal or power assisted gym equipment (such as we have at the MS Therapy Centre), including from a wheelchair, or even just passive stretching with a helper. A resource for this, 'Stretching with a helper' can be downloaded here: https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Stretching-with-a-Helper.pdf Exercise not only helps to stretch out tight muscles, but also to reduce spasticity and spasm, boost fitness, and lift mood.

27


OURCARPETHASBEENCLEANED

Please use this title on your donation cheques: THANK YOU The Bedfordshire and Northamptonshire MS Therapy Centre.

Wellingborough Golf Club Golf day £250 Kate and Norman loan of wheelchair £25 Mr & Mrs Haddon Donation £200 Mrs E Payne Donation from a talk £95 Linda Richardson Craft sales £653 Noon High County Music Club £500 Harpenden Phoenix Holidays £1,000 The Letrim Association £500 Heather Dale 100 mile bike ride £755 Bolnhurst Vintage County Fayre £450 Bedford Lions Group £1000 Housewives of Bedford Physio slings £367

DONATIONS – THANK YOU VERY MUCH INDEED

Thank you to Dave Jessop from Inter County Ltd who cleaned our reception carpets for free in the terrible heat in July. We are very grateful.

In memory of N Stone £318 In memory of Gill Parry £199 In memory of Amanda Glass £598 Anne Rattley £5 June Wold £50 Julia Quirke £125 Mr & Mrs Lokey Donation £60 Enid Giles Craft Fayre £175 Renhold WI £40 The Chosen Charity £450 Rev & Mrs Evans £10 Bunyan Bridge Group £300

•  Minibus – If you need transport to the Centre. Please speak to Tracy as we might be able to fit you onto our minibus.

•  The Centre has spaces available on the mini bus on Tuesday (Luton), Wednesday, Thursday and Fridays (Locations around Northampton).

•  We can collect you from your homes and bring you in for therapies at a small cost of £9 return.

•  Limited availability so don’t delay in speaking to Tracy if you

are interested.

•  We are raiing funds to buy a new minibus. Can you help? How about doing a sponsored event or holding a coffee morning?

GETTING TO THE CENTRE 28

LEAVING MONEY IN YOUR WILL

We are grateful to Autoglass for printing this newsletter for us. Autoglass 0800 222777 www.autoglass.co.uk

29


Leaving a gift in your will is a special way of ensuring that we’ll be able to continue providing professional therapies and support for people with MS and their families in the future. There are several ways to leave a gift to The Beds & Northants MS Therapy Centre in your Will. Details are on our website, or ask Paula or Tracy. Registered charity number 802510,

Residuary Legacy - After making provision for family and friends, you can leave whatever is left in your estate – the residue - to The Beds & Northants MS Therapy Centre or other charities, should you wish.

Cash Legacy - Cash donations are always welcome. However, as cash donations tend to decrease in value over time, you can avoid this by index-linking your gift.

Specific Legacy - Specific items such as property, shares, jewellery or furniture can be gifted. Codicil Form - If you have already made a will, but would like to add a donation to the MS Therapy Centre, you can use a very simple Codicil Form that means that you don’t need to change your original will. Registered charity number 802510, More details are on our website, or ask Paula or Tracy

help us to contact you - ms therapy centre beds & northants€¦ · news 3 ms therapy centre...

Documents