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Designed specifically for MS and CP patients andused extensively Worldwide for Rehabilitation

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• multiple sclerosis

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• spastic and rheumatic illnesses

• blood circulation disorders (prophylaxis of thrombosis)

• Parkinson’s disease

• muscular dystrophy

• arthrosis

• ‘stroke’ patients

• non-inflammatory illness of the peripheral nerves (polyneuropathy)

• insufficient physical exercise

• oedemas

• osteoporosis

• stiffness of the joints

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54 New Pathways Issue 50 July/August 08

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MSRC

53FREEPHONE: 0800 7830518 MSRC: 01206 505444 www.msrc.co.uk

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Cryptic Crossword Answers

By Cryptic Charlie GeeAcross8. The soldier leaves reportedly to get model

of perfection. (7)soldier = PARA + leaves = GON

10. If here you will find the young cow. (6)ANAGRAM

19. Sounds like you say hello to Mick and Keith for wintry weather. (9) hello= HAIL + STONES

23. Company man and revolutionary Red Indian. (8)company =CO + MAN + revolutionary = CHE

24. Join in citiz (en list) ening society. (6)25. Use in mothers where old things are kept. (7)

USE in MUMS = MUSEUMS26. In the last issue he wondered whether there

was a certain personality for people who have MS. (7)

Down1. Sort group sorted by compositor! (7)

sort = TYPE + group = SET a compositor is a typesetter

6. Mug about above leads to Watergate for example. (7)mug = CUP + above = OVER = COVER-UP

9. Laurel follows alcoholic beverage for capital. (4,7)Stanley Laurel + PORT = PORT STANLEY

16. Kiss material for jewellery! (8)kiss = NECK + material = LACE

17. Sounds like you ban modern music and get classical music. (7) ban rock = BAROQUE

18. Very warm round and becomes extremely successful person. (7)very warm = HOT + round = SHOT

1 1

T2 2

R3 3

C4 5 5 4

B6 5

D7 6

C8

7

P Y J A M A S9 8

P A R A G O N9

P F B9

P D N V10

H E I F E R11

O U T L I V E S12

S E A R E E R12

B E A R13

L I T T E R L O U T15

T T16

S T16 17

P14

E Y E15

C A T C H I16

N G19 17

B A A E18

H19

H A I20

L S T O N E21

S22

C R O W22

R E A L23

E K T23

C O M A N C H E24

E N L I S T26

Q V O Y S A H25

M U S E U M S26

I A N C O O K28

E Y B29

W E T

A survey of services for people with MS by theRoyal College of Physicians' and the MS Trust showsthat the NHS is still failing to implement the 2003The National Institute for Health and ClinicalExcellence (NICE) guidelines on the management ofMS patients.

Only 36% of people had access to neurological

rehabilitation services and effective symptommanagement. If neurological rehabilitation werereadily available, the severity of disability would bereduced. And although access to specialistneurological services has improved, there are stilllong delays from GP referral to diagnosis, with 50%of all patients waiting over 20 weeks.

NHS Still Failing MS Patients, Says MS Trust

newly diagnosed with MS tobecome very proactive and doeverything reasonably possible toreduce the risks of MS-relateddisability.

This is the time to take actionas opposed to 10-15 years laterwhen the accumulateddisabilities may have becomevery problematic and the chanceof reducing the risk of furtherdisability is much slimmer. Onedoes not want to do a riskassessment about crossing theroad when they already in themiddle of the road.

Given the very real and ratherugly risks people with MS face,they need to let theseestablished risks associated withMS guide their actions, just likethey let risk assessment guidemost facets of their life. Theseactions have to centre onstrategies to slow and haltdisease progression and theaccumulation of disabilities.

Unfortunately no one,including one’s neurologist,

provides a rational andcomprehensive list of actions totake when one is diagnosed withMS. The only thing a neurologistwill recommend to potentiallyreduce risk of progression is aprescription for one of the MSdrugs. The current data indicatethat such a strategy will, at best,only slightly reduce the risk ofdisease progression for most.

This is where I believe Dr Coles falls down. He obviouslyknows the high risk ofaccumulated disability and earlydeath for persons with MS. He isalso well aware of the lowefficacy of the existing MS drugs.

Neurologists Don’tHelp MS Patients WithNon Drug Treatments

In spite of all this knowledge,Dr Coles and other neurologistsfail to help their patients explorenon-drug related therapies. I would be willing to bet thatmost have not ensured thatevery one of their MS patientshas a circulating vitamin D level

near the top of the normalrange (120-150 nmol/l) despiteall the information linkingvitamin D deficiency to MS andthe fact that such a therapywould be extremely easy andinexpensive to institute.

I would also bet that they donot advise all the first degreerelatives of their MS patients tomaintain a high level ofcirculating vitamin D in spite ofknowing they have much higherrisk of MS than the generalpublic and that the currentdatabase leaves little doubt thatadequatevitamin D canprevent MS inmost cases.

There aremany otherpotentiallyvaluableactions thatneurologists arenot telling theirpatients about.It is fine thatDr Colesprovidesstatistics ondisease effects of MS and this isa service to persons with MS.However it is not fine that,despite the grim nature of thestatistics, he and many of hisneurology colleagues do not acton them as much as they could.

In my next column I’ll try toprovide a long term action planfor someone just diagnosed with MS.


24 hour Telephone Counselling Service0800 783 0518 and press 1

Did you know that the MSRC funds an excellent Counselling Service? It’s not just forthose who have MS themselves, but for family members, friends, or anyone else affectedby MS. There doesn’t have to be a crisis. You can ring just for a chat if you like!

The Ashton Embry Column


tatistics are veryvaluable for theindividual, not to

mention for their doctors andtheir insurers as they provideus with accurate riskassessments and this is mostimportant for helping to guideone’s actions.

Risk assessment haseverything to do with survivaland we are constantly doing riskassessments every time wecontemplate an action, fromcrossing the street, to changinglanes in our car.

Such genetic programming iscrucial for survival and, over themillennia, most of those whowere not good risk assessorswere eliminated from the genepool due to their bad and fataldecisions. This resulted in ahuman population of excellentrisk assessors.

When one is diagnosed withMS, it is important to beknowledgeable about the risk

statistics associated with thedisease. The risks mainly involveacquiring various disabilitiesthat restrict one’s capacity fordifferent actions but extend allthe way to death.

Thanks to many longitudinalstudies of populations of personswith MS, such as the Frenchstudy mentioned by Dr AlasdairColes in the last issue of NewPathways, a person newlydiagnosed with MS can obtainreasonably accurate riskassessments in regards tovarious consequences of havingMS. Such a quantitative riskassessment can and shouldguide that person’s actions inregards to what they do abouttheir MS.

Dr Coles has done us a favourby providing some quantitativerisk assessment information onkey potential problemsassociated with MS. It is veryworthwhile for a person justdiagnosed with MS to know

that, if they take no actionsregarding MS, their risk ofsubstantial disability in 20 yearstime is about 50/50. Those arenot good odds!

Dr Coles also noted there is afair chance a person with MSwill die a bit earlier than theyotherwise would have if they didnot have MS.

Finally, Dr Coles’ statisticsmade it clear that one has a verylow chance of not eventuallyaccumulating some disabilityover 20 years with MS (i.e. veryfew remain “benign” over alifetime). All this information isnot good news and hence thebacklash against Dr Coles’ article(see Postbag). However it isuseful news which canpotentially be very motivatingand lead to great benefits.

Good Reasons To Be Proactive AndReduce Risks

To me these somewhatsobering statistics shouldstrongly encourage a person

Statistics And RiskAssessment in MS

Ashton Embry says we need to know the risks facing us with MS inorder to guide our actions about our future.

S

By Ashton Embry PhD

Ashton Embry


People with multiple sclerosis are at a greater riskthan the general population for developing restlesslegs syndrome, a new Italian study suggests.

"This is important, because RLS is one of thesymptoms that can seriously affect an MS patient'squality of life, even more than a lot of otherproblems MS patients face," said lead researcher Dr.Giovanni Cossu, a neurologist at Brudzu Hospital inCagliari, Italy. "Therapies for RLS such as dopamineagonists are normally very effective and can restorethis quality of life.”

According to the study, almost15 percent of the MS patientswere diagnosed with RLS,while less than 3 percent ofthose without MS had thesyndrome. Based on these results,MS patients run a significantly higherrisk for RLS than the general population, the teamconcluded. They said MS should be "definitively"noted as being highly associated with RLS.

Source: HealthDay 30/06/08

MS Patients At Higher Risk of Restless Leg Syndrome

The Medical Student Section of the AmericanMedical Association (AMA) overwhelminglyendorsed a resolution urging the American MedicalAssociation to support the reclassification of

marijuana for medical use at the AMA’s annualconference in Chicago in June.

From Drug War Chronicle, Issue #541, 6/27/08

American Medical Students Back Use OfMedicinal Cannabis

News & Snippets

The Data Safety Monitoring Board has completeda safety analysis of the drug dirucotide (known asMBP8298) for relapsing-remitting MS and

recommended that the trial continues,says manufacturer BioMS MedicalCorp. The fifteen month trial hasenrolled 218 patients at 24centres in 6 countries. The aim ofthe study is to demonstrate thesafety and efficacy of this drug

compared with placebo as

measured by relapse rate, MRI activity and disease progression.

MBP8298 is a synthetic peptide that consists of 17amino acids having a sequence identical to that of aportion of human myelin basic protein (MBP). Thesequence of MBP8298 is associated with theautoimmune process in MS patients with certainimmune response genes (HLA types DR2 and/orDR4); MS patients having these genes represent 65to 75 percent of all MS patients.

Source: BioMS Medical Corp press release.

Synthetic Peptide Drug Dirucotide (MBP8298)Gets Positive Review

Stem cell research is moving from the lab to thebrain. Researchers at the Salk Institute for BiologicalStudies have been able to manipulate adult neuralstem cells still in place in the brain. They successfullycoaxed mouse brain stem cells bound to join theneuronal network to differentiate into support cellsinstead. The discovery opens up new directions for

the treatment ofmultiple sclerosis andother brain disorders.

Source: NatureNeuroscience

Adult Stem Cells In Brain Can BeReprogrammed

Recipe


A quick, easy-to-make and delicious summer salad.

Ingredients• 135g bag mixed salad • 1 ripe avocado, stoned, peeled and sliced • 30g pine nuts, toasted • 40g cooked crispy bacon, in pieces • 170g can white crab meat in brine, drained • 3 tbsp olive oil • 1 tbsp lemon juice

Method1. Divide the salad between 2 plates. 2. Place on top: avocado slices, pine nuts and

bacon, then top with the crab meat.3. In a small bowl, whisk the olive oil and lemon

juice. Season to taste and drizzle over the salad to serve.

Crab, Avocado And Bacon Salad

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MSRC


alling all the ladies t’snot too late to oineam for the

adidas omen’s khallenge formerly the ydroctive omen’s hallenge . his

fantastic event takes place onunday th eptember and is for

ladies of all ages and abilities.It would be brilliant to see the

MSRC adies out in force for thisevent, so why not get a group ofyou together and have a fun dayout. The MSRC staff will be at theHyde ark event and we meet upafterwards for a picnic so you canbring along family and friends!

There are no age restrictionson who can enter ouryoungest runner has been just

years old! If you are not arunner, then it’s perfectlyacceptable to walk the 5kdistance or you can use awheelchair or scooter.

h r nt ntr sn yo n t yo r on th

t m by ont t n Ab on or m b msr o

so s n no

Adidas Women’s 5kChallenge – Looking forThe Ladies!C

SHP have launched an new way to supportcharities and recycle your old mobile phone at thesame time. Instead of producing thousands ofpolybags that, in many cases, just end up in the bin,you can now go tohttp://www.shpforcharity.co.uk/msrc and check thevalue of your phone before then deciding howmuch of that money comes to the charity.

The minimum percentage donated to MSRC wouldbe 20% but you can choose to donate anypercentage up to 100%.

The site makes it easier to identify your phone

(there are pictures!) and is really easy to navigateyour way round. Once you have found your phoneand decided on the percentage to MSRC, you thenjust pop the phone in a suitable envelope and sendto the FREEPOST address provided.

It really is that simple!So, don’t delay, check your drawers and

cupboards for those phones you had forgottenabout and recycle them whilst supporting MSRC.(If you are a company with many phones to recycle,please call MSRC offices 01206 505444 and we canarrange a collection).

Mobile Phone Recycling Just Got Easier And Greener!


to go to work and do nothing.Deb seemed to think the

sensation would pass and toldme not to worry. I couldn’t sleepthat night. Part of me wasoverjoyed at my ability to useDeb’s accident for my own gain,but real concern was setting inabout her condition, which hadnot improved.

‘Hello again’, said my littlegastric friend; ‘I’ve a feeling yourreal troubles are just beginning’.

Deb was fully recovered thenext day but I took the wholeweek off, just to be sure of course.The spare room needed decoratingand I hated using any of myprecious twenty-two days annualleave for such mundane jobs.

I’d always go sick if anythingneeded doing around the house.Holiday was exactly that; timefor holidays. Debbie was agraphic designer and earned farmore than I did.

Childless, we used all ourspare time and money for sun inGreece or Spain, trips round thecanals of England, or skiing inScotland. We had a great time,but for me there was alwaysthat little voice; ‘back to worksoon, don’t enjoy yourself too much.’

Life then put the boot in, bigtime. I came home from work tofind Deb sat behind the steeringwheel of the car, crying. She hadbeen spending a lot of time withher boss’s son, trying to turn him

into the calibre of graphicdesigner she had become. Hewasn’t even close but wasdeemed competent enough tohave my wife’s job.

She tried so hard to find work,but Britain was in the bust yearsof its cyclic boom and busteconomy, and graphic designwasn’t high on many firms’ listsof priority appointments.

We managed to keep payingthe mortgage, but the holidaysstopped, the new car went, andmost of the shopping waslabelled, ‘value’.

At work I was stagnating in asmall pond. The recession wasslowly drying it out and workcolleagues were turning on eachother in order to survive. Thecompany loved it; no pay rises,no security for the staff. ‘Luckyto have a job’ was branded intomy sub-conscious.

After selling papers door todoor and working in asupermarket, where in sixmonths she had managed towrite off two cars in inexplicableaccidents, Deb managed to get ajob at the local Evans, sellingclothing to the ‘fuller figured’woman. What a joke, why don’tother shops advertise for the‘painfully thin?’ I’m notpromoting sloth or unhealthyliving but ask most men: MarilynMonroe or Kate Moss?

I answered the phone; “Goodafternoon, can I help you?”’ Bugger off, I’m busy doing nothing’.

“Mr Lake, I’m afraid your wifehas collapsed at work, she’sawake but can’t move her legs.”

Living In Fear CertainlyMakes You Regular

‘I told you didn’t I?’ Mydigestive companion was backand seemed as acidic as ever.That night I tried to drown himin Tesco Value Bitter, but

without success. On the plus side I wasn’t in

need of any pro-active yoghurt or‘Bifidum digestivum’ as the ladieson the television are so keenextol the virtues of. Living in fear

certainly makes you ‘regular’. We were at the Kent County

Ophthalmic and Aural Hospitalbuilding in Maidstone. (A lovelybuilding, closed in 2003). Debbiehad suddenly lost the sight inone eye. Terrified, we telephonedher specialist who told us tovisit the ophthalmologistdepartment immediately.

Neither of us spoke aloud, butwe both feared that Deb wouldgo permanently blind. (Acondition that had somehowpassed me by, even with allthose years of self-abuse).

Over the previous three yearsher condition had worsened; shefound it increasingly difficult towalk, her balance was terrible,(in fact some friends had askedif Debbie was drinking toomuch), and she was always tired.

King’s College Hospital hadbeen unable to diagnose; thescans and lumbar puncture hadnot discovered anythinguntoward. The neurologistcouldn’t (or wouldn’t) say whatit was. This was the first time,however, that Debbie’s sight hadbeen affected

The ophthalmologist began hisinvestigation of Deb’s eyes ‘So’,he asked her. ‘How long haveyou had Multiple Sclerosis?’

Short Story


ome on Keano, putyour foot in!” I shouted at

my own private 28inch football stadium.United were in cruisecontrol again,seemingly obliviousto my exhortations.

rom my hori ontalposition on the settee Isomehow managed the athletictask of reaching down foranother can of the stress-relieving nectar.

God, I hated Sundayafternoons, thinking about thefollowing five days’ drudgery ina job I had loathed in its variousguises since I started workeighteen years ago.

Today was worse than normal

because I had a course to go onthe thought of sitting around atable discussing the possibleprofit margins in brake pads wasnot exactly inspirational. I wouldalso have to play the M25lottery game to get there.

Get in you beauty, aboutbleeding time! t least we hadanother three points in the bagthanks to another ndy Cole tap in.

hy wouldn’t that knot in mystomach clear off and leave mealone? e were winning, I’d hada couple of beers it had beenwith me for so long that it evenspoke to me ork tomorrow,you hate it, you deserve better,but tough luck don’t worry,though, I’ll be with you all theway.’ ith friends like that whoneeds laxatives?

Bang! Over She GoesLike She’d Been Shot!

Deb got up to check thedinner. ang! Over she goes as ifshe’d been shot.

hat’s up, has all thatchocolate given you cramp? Mywife was stuck on the floor andcouldn’t get up. leeding hell’, Ithought to myself. hy does

this kind of thing never happenwhen Corrie is on?

ifteen minutes later and I’vemanaged to help Debbie ontothe settee. erhaps your legsare still drunk from last night, Ijoked, trying to reassure her.

nock, knock. I can hear thearrival of an opportunity to get acouple of days off work. Iphoned the man whose job titlewas higher up the ladder thanmine (I don’t have bosses!)

I’m really sorry aul, but Debshas had a fall and isn’t going tobe mobile for a couple of days, Iknow you must have paid out alot of money for me to stay twonights in that one star bed andbreakfast in Coventry, and Irealise I could have changed theface of the car parts businessindustry forever, but it’s out ofmy hands.

ell that’s what I meant tosay but somehow it came outdifferently.

Hello aul, I’m really sorrybut Deb has had a fall and Iwon’t be able to make theCoventry trip. Hey presto! couple of days to sit at homeand do nothing rather than have

It seemed like an ordinary Sunday afternoon but the knots inJohn’s stomach told him that life was just about to take a turnfor the worse.

Another Lazy SundayAfternoon

John Lake, 48, is married to Deb, who wasdiagnosed with MS in 1997. He is now her fulltime carer. Deb goes to Canterbury MS TherapyCentre where John helps out with fundraising.The couple live in Gillingham, Kent, and have two children.

“C

By John Lake

John & Deb Lake

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The LDN Research Trust would like people with MSto take part in their survey if ANY of the followingapplies to you:• You are currently taking LDN and have been doing

so for at least the last 4 months

• You You have taken LDN in the past but are nolonger taking it.

• You You took part in their last survey.The survey can be found online by going to:

http: / /www. ldnresearcht rust .org/

LDN Survey

Closing date for entries is July 31st, 2008. Send to: New Pathways Children’s Writing Competition, MSRC, 7 Peartree Business Centre,

Peartree Road, Stanway, Colchester, Essex CO3 5JN

Children’s Story Writing Competition – Win £50!

Life Is For Living


existential gloom, wondering if Iwas ever going to get completelyused to acrylic painting.

I have now found a paintthinner and solvent made fromlemon oil and although I havedecided that I can’t risk using itactually as a paint thinner, I willuse it to clean brushes since it ismuch kinder than white spirit orturpentine substitute. I have agood quality air filter and I have increased my intake

of antioxidants. s my disease worsened, so

did my tendency to allergies.I also developed asthma andspent every winter coughing. llthis has now gone, so I feel thatmy immune system is balancedenough not to be perturbed bythe organic solvents.

So, at the age of 50, I amentering a new stage in my life,one that a few years ago Davidthought I never would see.

Info Boxhttp //www.avenues-of-sight.com Sarah onglands’ website.

http //www.picassomio.com/ ased in Madrid and oca Raton, lorida,

Sarah is one of their invited artists.

http //www.davidwheldon.co.uk Dr David heldon’s website

http //www.davidwheldon.co.uk/ms-treatment.htmlDr David heldon’s MS treatment pages

http //www.cpnhelp.org/http //www.thisisms.com/forums.htm

s rom th n ry on n n n s m


painting canvases again. To avoid organic solvents, I bought and used

top quality acrylic paints rather than oil paints,and this involved learning a whole new way of working.

My mind was coming back and I was able towork out what to do. Always feeling cramped bysmall spaces, I not only started painting canvasesagain but larger canvases. I do all this with myright hand.

As a finishing note: I have just started paintingwith oils again. David knew I wasn’t really happywith acrylics and he suggested I should change back.I had spent much of the previous year in a kind of

Below: “Avant le Déluge” 1997. Oil on linen canvas, 175 x 120 cm.This was painted just before I began to get much worse and I thinkthe gathering storm clouds were indicative of how I really felt.

Right: “Isola Capri” 2006. 130 x 85 cm. Acrylic on linen canvas.

‘SNOWDROP’ Me working on one of my new oils, June 1st 2008.

Life Is For Living


n late wasoffered the chance todo what was the

biggest commission had everbeen offered to paint si largepaintings to hang in thepenthouses of the famouscruise ship ueen ary . was determined to do this.

The designs were acceptedand I finished the paintings in200 . hile I was working onthem I became increasinglyunwell and by the time theywere finished I found myselfunable to use my right arm. ustsigning the six works took aweek and I was unable to finish

varnishing them withoutenlisting David’s help.

The ship was launched inanuary 200 and much as

I wanted to see my paintingshung in situ I wasn’t wellenough to go.

The diagnosis was not goodvery aggressive secondaryprogressive MS. ut just weeksafter this David found on theinternet the thoroughlyresearched medical treatmentdeveloped at anderbiltUniversity involving Combined

ntibiotics (see ew athwaysIssue .)

Gradually Life Came Back To MyParalysed Arm

I started this treatment inugust, 200 and spent much of

the first month in a deliriousha e, sleeping for much of thetime. couple of months afterthat, though, I felt life comingback into my paralysed right arm.

I began tentatively painting inwatercolour and after a fewmonths I managed to dosomething that wasn’t justheaded for the waste bin.

However, as a painter of largecanvases, I was not going to becontent with spending the restof my life as a watercolouristand at the start of 200 , I felt Ihad improved enough to start

Painting In Oils Again Artist Sarah Longlands is married to Dr David Wheldon, an award-winning novelist and consultant microbiologist. Trained at the SladeSchool of Art, Sarah was no longer able to paint in 2003 due to her MS,but thanks to being the first person to use Dr Wheldon’s CombinedAntibiotic Protocol ( New Pathways Issue 47) she is now able to producewonderful paintings once more. Some of her paintings hang in theocean liner Queen Mary 2.

I

By Sarah Longlands

r h or n on no ro n n

Naidex


A Bicycle Made For Two

This Fun 2 Go trike is designedfor two people to ride together great idea. Made in Holland byan Raam, and sold exclusively

in the U by R Cycles.www.wrkcycles.comel

s well as manufacturing arange of children’s trikes in theU , R also sell a trike whichcan transport a wheelchair.Called the elo lus heelchairTransporter.

U company making attractivecycles isashley yclesel

www.pashley.co.uk

Colourful Walkershat a delightful change

from the usual glum walkers.These brightly-coloured walkerscome from TG .el

Make A Statement On Your Scooter

You’re bound to get admiringlooks on this fluorescent yellowscooter. It’s made in Israel byT ora but is not yet available inthe U . www.t ora.com

The Wet LookIf you’re giving your bathroom

a makeover, how about a wetroom. There were several ondisplay at aidex and all lookedgreat. et room suppliers includempey td,el

www.impey uk.comasa, www.easagroup.com

Funky Future ForMobility Aids

Amid the boring old care-home armchairs, the Naidex mobilityexhibition at Birmingham NEC had on display some truly innovative,funky and colourful new mobility products. Some of the best areimported from Scandinavia, Holland or Israel. But the UK also has somesnazzy new products.

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Anna helped me to plug mylegbag into the nightbag. Theother passengers didn’t seem tonotice, and there was plenty ofspace to conceal it under therugs we were given for thenight. In the morning Annadetached the nightbag andemptied it in the toilet.

Disembarking wasn’t aproblem thanks to a kind Africanfrom BA’s local handling sub-contractor. But to our dismay wefound that our luggage hadn’tarrived: there hadn’t been timefor it to make the tightconnection between TerminalOne and Terminal Four.

That meant we didn’t have oursuitcases, my own wheelchairthat fits me, nor the portablecommode I’d brought along aswe’d heard that the loo in thehouse was hard to get on and off.

We didn’t get our luggageuntil two days later, partlybecause of a muddle over theaddress where we were staying.In the meantime I borrowed awheelchair from the airport. Itdidn’t have drop-down arms,making it hard to get onto.

Cape Town’sSpectacular Scenery

But we were in Cape Town,gazing out at the spectacularscenery. In 1580 Sir FrancisDrake wrote: 'This Cape is themost stately thing, and thefairest Cape in all the wholecircumference of the earth'.

The city is a friendly English-speaking place and we didn’tfeel the worries about securitythat some visitors talk about.Everything was so easy that if ithadn’t been for the Africanservants who cooked and lookedafter us we could have beenstaying at a villa in France.

But there was onedisappointment: Lots of rampsmade of hardboard had beenplaced where there were steps,but they were steep and I couldn’ttackle them on my own. Anna,our friend Christopher or someoneelse had to push me. So I wasactually less mobile than I am athome. And until the commodeturned up Christopher had to liftme on and off the loo once a day.

I started to realise how muchindependence I have at home,where, after I’ve been helped toget dressed, I can go anywherein the house, take the lift to thebedroom, and go onto the streetand get a taxi.

We left our friends’ villa anddrove to Franschhoek, a lovelyvillage in the Winelands. Therewe had reserved a room adaptedfor a disabled person in a guesthouse. Everything was on theground floor and worked out fine,although it was a shame the

chain to flush the toilet was wayabove my reach. I had to getAnna’s help to get over somegravel on the way to thebreakfast room, and to negotiatean irritating lip at the entrance tothe room. But it was a nice place.

Here the activity wassightseeing in our hired Renault,just like the car we have athome. Anna drove and to get in Iwould pull myself out of thewheelchair by the car door, andswing myself into my seat. Thetrick was to remain standinglong enough for her to be ableto whisk the wheelchair awayand put it in the back of the car.

From what I could see SouthAfrica is some way behind the UKin the level of provision for thedisabled. Some of the kerbs inCape Town and Franschhoek havebeen levelled to take wheelchairsbut many have not and therewere plenty of other hazardsalong the pavements. Anna hadto do a lot of pulling and pushing.

However some of therestaurants we went to had hadmade a real effort toaccommodate wheelchair users.One of them was built on the sideof a hill and had a long steeplysloping ramp to get them up tothe dining room, but with staffwaiting to help. But I would faultthem for the brutal language ofthe sign they’d put up: ‘ParaplegicAccess’. It may technically be true,but don’t rub our noses in it!

In the event it was a lovelyholiday, though it did have a fewanxious moments for both of us.

Ann ton

Life Is For Living


’d always wanted to goto South Africa. Thenone day we got an

invitation out of the blue fromsome friends who have a housein Cape Town.

It was a wonderful invitationbut also a challenge. I’m in awheelchair and although Ioccasionally go on aeroplanes Ihaven’t been on a very longflight for years.

It’s a 12 hour flight to CapeTown but the time difference isonly an hour or two. lso, goingthere in early March wouldn’t betoo hot. nd our friends told usthat their house had often beenused by a man who ispermanently in a wheelchairafter a motorbike accident.

travel agent arranged ouritinerary. e would go for a weekto Cape Town, and then spend aweek in the inelands, a lovelyarea about 0 miles away. Itwasn’t very ambitious but it waswell-suited to my capabilities.

Reliant On Wheelchair Pushers

I wasn’t very concerned aboutthe journey as I’d managed Oon previous flights. I requestedspecial assistance and you justhave to entrust yourself to thewheelchair pushers whomanoeuvre you into your seatand get you out of it at theother end. The main anxiety is

wondering whether they’re goingto turn up.

I was a little concerned abouthow I would manage my urine. Ihave a supra-pubic catheter whichfeeds into a legbag which I emptyevery few hours. t night I connectit to a nightbag. I wondered if itwould be O on a night flight. .

e flew with fromdinburgh to Heathrow to join the

Cape Town flight, with a departuretime from Terminal our of 1 .20.ut on the snowy day we flew, the

flight from dinburgh departedalmost an hour and a half latethen waited in a stack for 10minutes. It finally landed at 1 .15,but then faced a further delaybefore it was allocated a stand atTerminal One.

e finally arrived, the otherpassengers disembarked and Iwas lifted out of my seat andout of the plane. I was pushed

along some corridors of TerminalOne, then had to wait for severalminutes until a van arrived forthe journey through tunnels toTerminal our. It was getting solate that I began to resignmyself to missing the flight toCape Town altogether.

ut the two sian womenescorting me told us not to worry,the plane will wait. inally the

van reached Terminal our and wewere plunged into its corridorsand lifts. hen we finally got tothe aircraft the clock had reached1 .20, exactly the departure time.

e’d made it but it had been awhite knuckle ride.

e were in orld Traveller luswhich is just behind Club Classand gives you a slightly widerseat but not much more. esettled in and had supper. ater,after watching a bit of a movie, itwas time to settle down.

Our Challenging Trip To South Africa

James Buxton was diagnosed with what became secondary progressive MSin 1984 when he was 37. He used to be a journalist on the Financial Times.He and his wife Anna have two grown up sons and live in Edinburgh.

I

By James Buxton

James at the Cape of Good Hope


more confident, with my eyes closed. This requiredme to stand near some support, so I could havefingertip touch to keep my bearings.

Lifestyle SkillsIain, the O.T, gave me practical advice to help mewith everyday living. The ideas are common sensereally and include:• Rest - means doing nothing at all (including

watching TV) – and letting the body as well asthe mind relax.

• Diet - eat regularly and try to cut out food anddrinks with caffeine that give shorter energybursts.

• Exercise - keeping fit generally by regularlydoing some sort of fitness activity.

• Setting Priorities and Planning - putting themost important activities first before running outof energy. This involves writing lists beforesetting out to achieve something. All four lifestyle skills required me to keep a

diary of my day’s schedule and a fatigue chart. Thismade it possible for me to view where my energywent during the day and to organise my time andenergy more efficiently.I could see by the end of my stay that the crux ofmy problems (fatigue) stemmed from lack of rest (Iam a bit of a live wire, and cannot sit still for morethan two seconds!) The discovery that if I canmanage my fatigue I will have a better quality oflife was quite a revelation!

Understanding the extreme energy levels Iexperience from peaks to slumps during the dayhelped me to see the benefits of rest. Planning canhelp me reserve energy for the times I most need it. The Neuro-Psychologist

My memory and thought processes were lookedat thoroughly with psychometric tests. One ofthese involved looking at a set of 50 photos andthen trying to remember exactly which picture Isaw out of three similar ones on a page- such aspictures of the same rose bush, only with slightlydifferent angles or details to it. Only one wascorrect! My memory of names was also tested froma set of picture cards. The first and last name hadto be remembered. I did badly at the names test.

Information processing was also examined. Thisinvolved trying to piece together patterns from sixsided cubes from a template design already made onanother card. Through this, my neuro-psychologistcould see my thought process working out thepuzzle. The results of these tests were normal.

I believed that my memory was partly impairedbecause I have trouble remembering past eventsand names. My poor recall of names exposed amild or very slight impairment to my short termmemory. The overall results, however, showed that Ihad no significant problems. My neuro-psychologistsuggested a remedy for this: keeping a diary. Thiswould act as a memory jogger and help me topiece together past events.

How I Got OnThe NRU’s programme lasted only two weeks and

I left feeling frustrated that my physical health hadnot improved more significantly. I still have to usea stick and I’m still not very confident about goingout by myself.

Practice and discipline would be central to myrecovery and if anything, the NRU has given me theopportunity to take stock of my life. The Rehabcould only do so much; the rest was down to me. I found that all three parts of my rehab were usefulin discovering where my weaknesses were andmaking me realise how I should remedy these.

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Rehab

he aim of going into rehab was toimprove my physical potential and regainmy independence. y the time left felt

mentally more prepared for the outside world andable to control my better than before, though still walk with a limp and also use a stick.

Recently, my MS had been getting worse andtasks such as shopping and cleaning had become astruggle. My MS had reached an all-time low soeven going out alone was frightening. I was anideal candidate for neuro rehab as I was still youngand relatively mobile.

There were 1 beds in the rehab ward, alounge/dining area and a separate therapy roomwith a gym. The lounge had a widescreen T and anexercise bike. The therapy area had eight electronicmoving beds, a running machine and more exercisebikes. There were also many different si ed inflatableballs for balance and co-ordination training.

I then met my rehab team, physiotherapist aura,neuro-psychologist Duncan and occupationaltherapist Iain, who co-ordinated the whole thing.

The objective of my treatment was to improvebalance and di iness, co-ordination, core strengthand manage fatigue better.

Exercises from the Physiotherapist –Strengthening Core Muscles

These were similar to Yoga therapy with theemphasis on slow, smooth movements. The aim was to strengthen core muscles- which arethe underlying muscles running the entire length ofthe torso that stabilise the spine and pelvis.

The exercises for this included• Resting my leg on the ball, whilst hollowing my

stomach and clenching the buttocks. I would arch myback and lift alternate hips. Repeat 5 times for each hip.

• On my hands, knees under the hips, with the backin a relaxed neutral position, I then had to makea controlled, slow movement, clenching buttocksslightly, and straightening out the hip and kneeout behind me. I was told not to arch or twist myback. I repeated this 10 times for both sides. The aim of these exercises was to strengthen

hip and trunk muscles.

Improving BalanceThese took the form of standing with my feet, heelto toe and also, closely placed, side by side. Thesewere firstly with eyes open, and then when I got

How Rehab Helped MeJoanne Akong, 26, has had relapsing-remitting MS for 10 years. She hasa degree in Human Geography from Sussex University and lives on herown in Crystal Palace, south London.

By Joanne Akong

T

Two weeks in the Neuro Rebilitation Unit ( NRU) of the NationalHospital helped Joanne Akong take charge of her life and her MS.

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Life Is For Living


izzie found theWheelieChix-Chicwebsite on the MSRC

Message Board where she postsunder the name “Wizzie”. Whenshe discovered WheelieChix-Chic was looking for new faces,she promptly contacted them.

“It was fantastic to finally find a company catering forwomen who use wheelchairs butwho still wish to be stylish”, says Lizzie.

WheelieChixChic’s managingdirector Louisa Summerfield –also a wheelchair user - saysLizzie was the right person tomodel their clothes. “Lizzie’s facehas great bone structure whichwill look great in make-up.

“She is a very determinedyoung woman who hasn't let herdisability get in the way of livinglife to the full. I greatly admireher confidence and sheerdetermination; she's very muchan inspiration to all youngwomen with a disability.”

The WheelieChix-Chiccollection is specifically tailoredto enhance and flatter the figurewhile sitting. The designs ensurefreedom of movement includingwider sleeves, trousers which are

higher at the back compared tothe front, waistlines thataccentuate but are not restrictive,as well as fastenings designed toensure dressing becomes apleasure and not a chore.

Beyond Boundaries LiveBeyond Boundaries Live is all

about opportunities – what youcan do, rather than what youcan’t do.

At the event Lizzie will bemodelling clothes from theWheelieChixChic Autumn/Winter collection.

The show will also featuremembers of the hit BBC TVdisability adventure seriesincluding Ade Adepitan andKerry McGregor, although theevent is not connected with the BBC.

As well as watching thefashion show, you can also havea go at football, basketball,drama and rock climbing, or testdrive the latest cars, handcyclesand wheelchairs. There will behelp and advice on hand fromexperts, information aboutholidays for disabled people, andcooking demos from celebritychef Michael Caines.

The event is being held onJuly 25 and 26 at the KentShowground, Detling, Maidstone.There is no admission charge.You can just turn up on the dayalthough the event organisersrecommend online registrationin advance to beat the queues.www.beyondboundarieslive.co.ukTel: 0208 971 8286.

Lizzie Gilchrist never thought she would be a model as she’s only 5’ 4”.But this summer she will be on the catwalk in her wheelchair modellingclothes from the glamorous WheelieChix-Chic collection at the “Beyond Boundaries Live” show in Kent on July 25-26.

“An Inspiration To AllYoung Women WithA Disability”

Lizzie Gilchrist, 26, was diagnosed with MS in 2000. She started a musicdegree but was unable to finish after her MS got worse. She is currentlylooking for work in the police’s civilian staff. She lives in Essex.

L

Lizzie Gilchrist

A disabled modelwearing theWheelie-Chix-ChicYara dress, whichalso has a matchingjacket. Price £141.00Sizes 8-16


I want you to enjoy it!exclaimed ernd, who told me most disabled people feelreally excited to go flying. You don’t feel your disability

when you’re flying.or the first twenty minutes

or so, ernd was firmly in chargeas we flew over the patchworkof fields above etersfield, thenon to ortsmouth and over tothe Isle of ight.

The World From ADifferent Perspective

hat fun this was. Up here,you see the world from adifferent perspective. ook down,the cows in the fields and thecars on the roads are like dots.You can spot landmarks like theSpinnaker Tower in orstmouth,the ships in ortsmouth Harbourand the sandy beach at Ryde.

If we weren’t sure what wasbelow us, ernd would get hishandy little aeronautical map outand have a look. On a good daylike this, you can see 0 miles inall directions. onderful!

So far, I had been only been apassenger. ut now came themoment of truth. ernd turnedthe plane around towards homeand then asked me to takecontrol of the tiller.

t this point my knucklescould have turned white, butthey did not. ith commendablecomposure, I held the tiller firmlyas we flew straight ahead. Thedial which showed the hori onwas on an even keel and on aneven keel I intended to stay.

Turn to the left! commandedernd, whose day job is

designing aircraft. I kept mycollywobbles to myself as Imeekly turned direction. Turnleft more! said ernd. So Iturned left more and the dialwhich showed the hori onoomed worryingly off centre.

Ten minutes of this and I washappy to hand back the controls toerndt, a real daredevil who told

me he liked nothing better thanflying a light aircraft in savageweather and being buffeted

around by the wind and rain. uckily, no such adventure can

befall a disabled pilot as the Dwill only let the planes up in clementweather with good visibility.

ack on terra firma, mrysHarries told me that around 100disabled people fly each year,most of them first-timers. ll thepilots, like ernd, are volunteerswho do it for the love of it.

My motivation is to see thesmile on the faces when they getout of the plane , says mrys. Itcan change peoples’ lives.

Info BoxThe ritish Disabled lying ssociationwww.bdfa.net

ased at asham Gliding Society,asham irfield,lton,

Hants GU 5SSTel 01 2- 110

t the time of writing, a (heavilysubsidised) flight costs 50.verything ou ant n otel

The night before, I stayed at the remierInn south of asingstoke. This chain ofhotels never lets you down when youwant a disabled room and the quality ispretty much the same all over thecountry. The bathrooms have a levelaccess shower and plenty of grab rails.The double bed has a comfy duvet. Thebreakfast spread is wonderful, and witha wide choice of fresh fruit, it’s easy tostick to the est et Diet. The price isreasonable too.

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Life Is For Living


hen it comes todaredevil antics, amone of life’s scaredy

cats. o it was with someama ement that found myselfflying a light aircraft highabove ampshire one sunnyday in ay.

Admittedly, I was at the tillerfor only 10 minutes with ace pilotBernd Vermeulen safely by my sideat the dual controls, but flying Iwas nonetheless - just one of thehundreds of disabled people whocan experience this thrill thanks tothe efforts of the British DisabledFlying Association.

The plane I was to fly – aPiper PA28 Archer with 181horse power was parked in agrassy field at Lasham Airfield,not far from Basingstoke. It wasmeant to be a Bulldog G-DISA,but it made no difference to me.

But how was I to get insideit? “You shuffle on your bumalong the wing”, advised Emrys

Harries, my host at the BDFA,who has MS and walks with astick but flies like a real pro.“Though they can also hoistpeople up if needed”.

Once inside the compactcockpit, I was faced by abewildering array of dials. If onlyI knew how to read them theywould tell me the number offeet we were above the ground,our speed in nautical miles, howmuch fuel we had, and wherethe horizon was – apparently

very useful if you can’t see outof the windscreen.

There were also lots of knobsand levers which I was happy toleave Bernd to pull, push andtwiddle, which he did frequently.

The only thing Bernd had toteach me was what to do withthe tiller, the black lever thing infront of me. If you pulled it outthe plane went up and flewmore slowly. If you pushed it inthe plane went down and pickedup speed, and if you steered it tothe right or left, it made theplane gently roll.

As the plane goes up, you seeless out of the windscreen andrely more on the gauge in frontof you, and as you go down yousee more – much more.

I Am Flying!“You Don’t Feel Your DisabilityWhen You’re Flying.”

WBy Judy Graham

On a wing and a prayer

If only I knew what they all meant!

Bits & Pieces


The biggest heat problem whenyou have MS is not so much dryheat but humidity. It saps every lastounce of energy from you and makesyou feel like a wet rag.

Meteorologist Russell Johnson, whohas had MS for 25 years, sufferedhis first symptoms of MS when hewas outside in the hot and humidclimates of Borneo and the UnitedArab Emirates. But when he wentinside an air conditioned building, his MSsymptoms eased.

This prompted him to study how humidityaffects MS and despite increasing disability, hecontinued his studies until recently.

The basic result of his investigations indicatesthat when the dew-point temperature* is above10 degrees Centigrade (50 Fahrenheit) it makes MSsymptoms worse. He also came up with tableswhich show how increasing humidity affects MSsymptoms (see below).

His campaign is for our weather forecasters onTV and radio to always mention humidity as wellas temperature, as they do in countries like the US.But says Russell Johnson: “On their own, humidityreadings are not easy to convey in a weatherforecast to the general public, whereas the dew-point temperature does take account of thehumidity and is very easy to produce and understand.”

* What Is The Dew Point Temperature?If we have a parcel of moist airand cool it until it becomessaturated and produces waterdroplets, the temperature atwhich this occurs is defined asthe dew point temperature.

Feel Like A Wet Rag?

SIMPLIFIED TABLE(Temperatures in Centigrade C )

DRY BULB DEW-POINT EFFECT ONMS SYMPTOMS

ABOVE 27C >17C VERY SEVERE

25-27C >17C SEVERE

17-22C 14-17C MODERATE

15-19C 11-15C SLIGHT

10-15C 05-10C VERY SLIGHT OR NIL

A study into a combination treatment ofinterferon beta-1a and atorvastatin found thatpeople who took both medications had more

relapses and moredisease activity as shown on MRI. The dose was40 or 80 mg atorvastatinwith thrice weekly, 44 mcg interferon beta-1a.

Source:PubMed PMID:18525027 (18/06/08)

Beta Interferon And AtorvastatinCombination MayIncrease DiseaseActivity In MS

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Tried & Tested


y MS is made worseby a condition I’vehad since I was a

teenager, Scheuermann’sdisease, which resulted in acurvature of the spine and rigiddiscs in my upper back. Havinga balance problem with MS andbeing very tall at 6 feet 1”meant pain on a daily basis.

Over the years I have spent afortune on various treatments totackle the pain but have foundthat standard body massages,although relaxing, did not reallygive me deep or lasting benefit.

Then two and a half years agoI sought the help of MikeDuffield, a nutritionist and bodyworker. His massages were muchdeeper than any others I hadever had. He also uses specialistmachines like the G5 massagerand Thumper which are morepowerful than manual treatmentand have given me great benefit.

Six months ago, Mike Duffieldintroduced me to the Mobiliser’.I have been having regularsessions on this, which haveproven excellent for both backpain and MS symptoms. I usedto have aches and spasms in my

legs but the Mobiliser is sopowerful that all the musclesjust give in and completely relax.

I am also less afraid of fallingover when standing up straight asmy back feels stronger. I am nowmuch more upright when walkingand standing at my full height. Inow also have more energybecause I am not worn out asquickly with the pain and fatigue.

Massaging The Muscles The Mobiliser machine looks

like a slim mattress that you lieon. It also has two sets ofknuckled rollers that go from

the feet, up the legs and spine,to the top of the neck.

The machine is very powerful.Its twin rows of knuckled wheelsmove under the body. This liftsand massages the muscles andflexes the individual vertebraefrom head to toe, releasingtension and greatly improvingthe flexibility of the spine. Themobiliser can also be set to workon specific areas as needed.

fter my first session mywhole posture felt more relaxedand aligned, and it seemed themore I used the machine the

better the results. ow my rightside, which was weaker, feelsmore equal to my left side.

t first use it may seem harshor painful as things realign thatperhaps have not moved for years.

ut with continuing treatments, Ihave been able to deeply relax onthe Mobiliser- a far cry from myfirst session! This is also helped bya heated comfort pad under yourback (selectable) which warmsdeeply as the massage progresses.

ow, I have graduated tousing the Mobiliser without thecomfort pad which although Ifelt a little tender initially, isgetting to forgotten muscles andloosening tight fibrous areas.

I am sure that I would be on acocktail of pain relieving medicationto mask the pain if it wasn’t forregular use of this machine.

The Mobiliser is not the onlything I have found beneficial forMS D , diet and supplementshave all played an integral role.

“After my first session my whole posture felt more relaxed and aligned.”

The MobiliserJulie Green, 30, was diagnosed with MS three years ago. She lives in Leedsand worked as a Clerical Officer in Outpatients and then in Personnel for8 years at Leeds General Infirmary. She is currently an admin volunteer fora local Community Centre and is also studying reflexology.

M

By Julie Green

Info BoxThe mobiliser is available for a free weektrial to support groups and individuals.Contact Mike Duffield on 0 0 2 5 .He also has lists of practitioners whohave the machine. Mobilisers can be bought for 2 5.00,no T.

00 discount if you write MikeDuffield/MS ife in comments box whenordering online.If you start by hiring a machine for amonth (this costs 150 ) then decide tobuy one, the costs of first month hiringwill be taken off the purchase price.More info www.backinaction.co.uk/mobilis

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Bits & Pieces


Australian doctor Professor George Jelinek, authorof the book “Taking Control of Multiple Sclerosis”now has a website of the same name:www.takingcontrolofmultiplesclerosis.org

Professor Jelinek says: “Although there is no cure,the medical literature has considerable evidence thatMS is a modern, lifestyle disease of developedcountries and that there are many lifestyle changesthat modify its course. These therapies have beenextensively researched and offer exciting possibilitiesfor controlling the illness and preventing disability.

The aim of this website is to present a summary ofscientific information about multiple sclerosis, aboutthe cause, incidence, genetics, signs and symptoms,diagnosis, prognosis, and the best medical researchabout each of the available therapies. Thesetreatments include diet with emphasis on dietaryfats, sunlight and vitamin D, meditation, exercise,supplements, the mind-body connection andmedications (such as Betaferon, Avonex, Rebif,Copaxone, Tysabri, Novantrone, and steroids).Recommendations are provided for people with MS

to use in aiming at recovery. For those just diagnosed

with MS, there is every reasonto hope for a long and healthylife. For those with disability,there is the real potential toslow or completely stop theprogression of the illness.For some, symptoms willimprove. For many people,visiting this website is theirfirst step in a journey toregaining their health, with the potential for genuinehealing. Good luck on the journey.”

Professor Jelinek, who lives in Melbourne, wasdiagnosed with MS in 1999. His mother died of MSin 1981. He says: “Towards the end of her life, shewas totally incapacitated, unable to feed or care forherself. I was determined that this was not going tobe my fate.” He sticks to his own lifestylesuggestions and has been free of relapses.

Taking Control of Multiple Sclerosis Website

Professor George Jelinek

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Managing MS


The Chillow The Chillow is a fantastic way to

keep cool at night and beat the“hot pillow syndrome”. If you arenot sleeping very well then theChillow could be the answer. TheChillow is a personal cooling padjust 2 cm thick and it can be usedwith your existing pillow. It isactivated by filling it with tap waterwhich is absorbed into the foamcore. You can either insert a Chillowinto your pillow or sleep straight onit for maximim coolness.• Chillows come in three sizes -

Mini Chillow: £19.95 + £2.95p&p, Chillow £24.95 + £2.95p&p and Cillow Plus £39.95 +£2.95 p& p .

• Soothsoft UK, Unit 10, North’sEstate, Piddington, HighWycombe, Bucks, HP 14 3BETel 08700 117174www.chillow.co.uk

KEEPING YOUR HOME COOL

Air ConditioningPortable air conditioning unitsare usually on wheels so you canmove them around. All you haveto do is put the hose outside.The air that comes out of themreally is pretty chilly.

Much more expensive butmore attractive are fixed airconditioning units. More andmore companies are now doingthis and you should be able tofind one in your area.

There are also evaporative aircoolers where you fill an internaltank with ice cold water whichwork by evaporating water from

the tank. They do reduce airtemperature by a few degreesbut not as much as airconditioners.• For a good selection of air

conditioners and evaporativeair coolers check out Argos -www.argos.co.uk or a largeDIY store such as B & Qwww.diy.com or Homebase -www.homebase.co.uk

FansFans are an effective and

cheap way to keep cool. Theserange from large floor fans totable top fans, ceiling fans andpersonal hand held fans. DIY stores or catalogues such as• Argos - www.argos.co.uk.• Boots hand held fans, £2.99,

M & S travel fans £3.50.

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your neck or head. Soaking your feet in cool

water, putting your hands underthe cold tap or taking a coolshower can also help cool you down.

Ice is the big chill and manysupermarkets now sell ice cubesin large bags but you can alwaysmake our own. Ice shouldn’tcome in direct contact with yourskin as you can get ice burns. • Ice is available at several

supermarkets includingSainsbury’s ( lue eld Spring

ater Ice Cubes 5p for 1kg) and Somerfield. (CalypsoMineral ater Ice Cubes -1. 0 for 2kg).

COOLING PRODUCTSYOU WEAR OR SLEEP ON

Cooling Ties, Scarves,Neckwraps And Hats

ool Ties are a great way ofcooling down when things get abit hot and sticky. ool Tie is afabric scarf which containspolymer crystals. hen soakedin water the crystals absorbwater and the ool Tie cools thebody as the water evaporates.

hen the surface next to theskin warms then you simply turnthe ool Tie over for renewedcooling. In very hot conditionstake the ool Tie off for a fewseconds and wave it around asthis refreshes the coolness. quick re-soak in cold water willhelp you chill out again.

• ool Tie 10 each plus 2 p p per tie. ( approx 5. plus1p p) afka’s ool Ties

10 .Cave Creek Road, St 101, hoenix, ri ona 5020 US .

Tel ( 02) 11www.kooltie.com ool Tie alsohas a U representative whooffer a quick service. They arewww.soo-cool.co.ukThe Cobber ody Cooling eckrap is pretty much the same

idea as ool Ties. It is madefrom polyester and cotton andfilled with poly-crystals. • Cobber ody Cooling eck

rap .5 plus shipping.odycool Industries, Toronto,

Canada. Tel ( 1 ) 10 www.bodycool.tv

• nother polymer crystal filledcooling scarf called Trekmatescan be found at outdoorsuppliers lacks, . .

et Rock Hats are 100 cotton and have cooling crystalsthat work in a similar way tocooling ties and scarves. Thecrystals are stitched into thefront of the inner headband ofthe hat. To make them worksimply soak the front section ofthe inner headband in icedwater for about minutes. utthe hat on and feel the crystalswork! Depending on thetemperature, the crystals willkeep cooling you for days andare fully re-useable. The hatsalso work as sun hats.

• et Rock Hats available fromThe Complete Outdoors,ondon Road, ourne nd,

Hemel Hempstead, Herts, H 12RS tel 012 price1 . plus .50 p p.

Arctic Heat Cooling vests.

These cooling vests havespecial cooling crystalsincorporated into the material,You simply soak the vest in coldwater for two minutes Thecooling crystals can hold thetemperature for a substantialperiod of time. Cooling vests arevery popular with MSers in hotcountries such as ustralia. • rctic Heat Cooling ests cost

US1 (about ) plusshipping from rctic Heatroducts

www.arcticheat.com.au tel 1 5522 1552.

rctic Heat ty td Unit 5/1Rothcote Court, urleighHeads, ld 220, ustralia.

Kool Ties

Arctic Heat Cooling Vests

Managing MS


Heat and MS – Go OneDegree Under

Heat causes MS symptoms totemporarily worsen. Vision cango blurry (Uhthoff’s Syndrome),you feel fatigued, weak, listless,and everything is an effort.

This happens because de-myelinated fibres are worse atconducting electrical signalswhen the core body temperaturegoes up even half a degree. Butif you can get your core bodytemperature down one degreethe symptoms are reduced.

Cooling is considered one ofthe most effective treatmentsfor MS.

PERSONALCOOLING PRODUCTS

Cooling sprays. Magicool is a cooling spray

that’s the nearest thing to airconditioning in a can. It’s afavourite of many people with

MS and can be the perfect wayto chill out if you find yourselfstuck inside a baking hot car ora stuffy room.

In addition to the MagicoolHot Weather Cooler & FreshenerSpray there is also a pocket sizedMagicool Body Cooler andFreshener Spray and MagicoolPlus Prickly Heat Spray. Bootsalso does a Hot Weather Cooling Spray. • Magicool Hot Weather Cooler

and Freshener £4.99 for 200ml spray, Magicool BodyCooler and Freshener £4.29 for150ml (hand-bag sized )spray,or £3.99 for 75ml (pocketsized) spray. Magicool PlusPrickly Heat Spray £5.99 for150ml spray. Magicool 020 8645 0773www.magicoool.uk.com

• Boots Hot Weather CoolingSpray £3.89 for 125ml spray.

Kool ‘n’ SootheMigraine Cooling Pads

These soft gel pads aredesigned to provide immediatecooling relief. Ready to use withno need for refrigeration theycan last for up to six hours. Theslightly sticky gel pads can beused on your forehead, the backof your wrist or anywhere youwant to cool down. • Kool ‘n’ Soothe Migraine

Cooling Pads cost £2.99 for apack of four. Boots also do cooling

headache pads – soft gel padsprice £0.99 for a pack of two.Also a range of other coolingproducts including Nelson’sArnicare Cooling gel. Nelson’s isthe famous London homeopathicpharmacists and the ArnicareCooling Gel combines thebenefits of Arnica with therefreshing sensation of naturalgrapefruit oil and menthol. • Arnicare Cooling Gel 4.65 for

a 30g tube. • Arnicare Soothing Spray

£4.95.• Antistax Cooling Leg Gel

£5.55www.boots.com

Cool, Cool Water And Ice

Cool water can be a reallyeffective way of getting cool. A scarf soaked in water and thenwrung out can be worn around

Keep Your Cool!Summer heat can be hell when you’ve got MS. Heat and – even worse –humidity – can make you feel weak and wiped out. But there is now a growing range of products to help you chill out,from personal cooling sprays to fans and air conditioners that cool your home.

By Ian Cook

h oo r n

son s Arn r r n


to forget the problems of being disabled.

The wow factor in my jobwas starting to lose its first w. Ifit were to lose anotherconsonant it would end up asone tiny insignificant ero.

ll the time eannie, my wife,my rock, my shield and myfriend, was also lying sleepless inngland, trying to keep our life

together and knowing that whenI got back I would be more of awreck than I had been the timebefore and that the time torecover- the brunt of which shealways took- would be longer.

The seven weeks of the Rugbyorld Cup in rance confirmed

my worst fears. The last twoweeks, when ngland reachedthe finals, createdunprecedented demands. I gotthrough, but only just, and only

with fantastic support from myclosest colleagues.

I knew that when the next bigrugby event came along the gapbetween the demands of the joband the supply of my energy todo it would have become achasm.

The C very kindly allowedme to bow out on my terms, at abig occasion, while I was stillable to do my job reasonablywell. nd what an occasion, andwhat a day, and what anama ing display of warmth fromso many people!

ow to the future. I’m notgiving up work, just thisparticularly demanding job, and Idon’t feel in any way that I amgiving in to MS.

I’m just finding a better wayof living with it.

A ys r t s ort r t nts

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People


he final day of mycareer as a commentator began

with a steward uerying mypass and ended with twodoormen carrying my buggydown steps from a functionroom with no lift. n between,a man in a yellow acketattempted to prevent me fromaccessing the floor from which had broadcast for the last fivebuggy dependent years.

Over the last few years the jobhad become even moredemanding and the practicalitiesof broadcasting when you’ve gotMS were becoming a nightmarefor me: trying to lever myselfinto inadequate and dangerouscommentary boxes; assemblingand disassembling my buggy,lugging broadcasting equipmentup flights of awkward stairs andthrough unforgiving crowds.

But while these demands wereescalating, my ability to copewith them was going in theopposite direction.

In journalism, when a storyneeds covering, you work untilit’s done even if it means working16 hours days for weeks on endor travelling not just the lengthand breadth of the country buthalfway across the world.

You hope there’ll be a chanceto slow down, catch up andrestore your energy. Except, withMS –or at least my form of MS-there’s not. I was increasinglydiscovering that I lacked thereserves of energy to push myselfto the absolute limit at times ofgreatest demand, and I wasstarting to lack the resources toput myself back together againduring rest periods.

The “Wow” Factor inMy Job Was BecomingMore of an “Ow.”

I loved my job and wanted todo it the sort of justice Ibelieved it deserved, that I hadmanaged to deliver so far, andthat was in danger of beingcompromised by my dwindlingenergy levels.

I had found myself spendingincreasing amounts of time lyingin my hotel room in an attemptto summon up the energy toattend press conferences. Iwasn’t sleeping well, and I wasstruggling, for the first time,

With increasing demands from his job and decreasing energy,Alastair Hignell has retired as a Radio 5 Live sports presenter.

Moving OnAlastair Hignell, 53, was diagnosed with MS in 1999. Married to Jeannie,they have two sons and live in the Cotswolds. He has been a sportscommentator since the 1980s. A sporting legend, in the 1970s he played rugby for Bristol, CambridgeUniversity, Gloucestershire, the Barbarians and England. He also playedcricket for Cambridge University and Gloucestershire.

T

By Alastair Hignell, Patron of MSRC

In the commentary box

England’s Phil Vickery with Alastair

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Treatments - Prokarin


rokarin, which used tobe called Procarin, is an‘off-label’ compounded

patented prescription medicationin the USA containing histamineand caffeine.

It is supposed to work in MSbecause histamine phosphate, anatural amino-acid derivative, isa potent neurotransmitter.Caffeine inhibits an en yme thatgets in the way of this.

rokarin was first madeavailable as a cream that had tobe measured out onto a patchwhich was then applied to theskin. ow, there is a ready-madeversion of rokarin which comesin the form of a small disc whichis simply applied to the skin andworn from morning until bedtime.It does not require refrigeration.

laine De ack, anurse with MS,revived thistreatment firstdone by Dr Hintonone in the

1 0s and wenton to research

and patent rokarin.She says it works for her and hashundreds of anecdotal reportsfrom people with MS who haveused it with success 2report at least one significantimprovement in symptoms, andsome many more.

What Is Histamine?Histamine is a very small and

simple molecule made byeverybody from the naturally-occuring amino acid histidine.The theory goes that people withMS have trouble turninghistamine into the

neurotransmitter Histamine 2. Histamine 2 sends messages

down the H2 pathway, but thispathway does not work well inMS. It also plays a role inbalancing the immune system,making digestive en ymes,regulating stress and stimulatingthe thyroid.

What MS Symptoms IsIt Supposed To Help?

Those who claim it hasworked for them say rokarinparticularly improves thesymptoms of fatigue, poorbalance, walking speed, motorfunctions, bladder problems,brain fog, speech difficulties,numbness and poor sleeping.

Studieslaine De ack, knowing that

she needed the support ofdoctors, set up a double blindpilot study on rokarin and MSfatigue at the University of

ashington, later published inthe peer-reviewed MultipleSclerosis Research ournal.

In the study, 21 people weregiven rokarin and 5 a placebo.The conclusion showed a modeststatistically significant effect ofrokarin on fatigue. The average

improvement in fatigue for eachindividual was . Side effectswere minimal.

atigue is often the firstsymptom to improve with rokarin,sometimes obvious within hours ofstarting the treatment.

However, this study wasrubbished by the merican

ational MS Society, criticisingthe study design, the smallsample si e, the difference

between the subjects, and thepotential confounding effects ofcaffeine (the amount of caffeineis half a cup of coffee per dose),a known stimulant. In short noscientific proof.

In the years since then,arguments have raged on bothsides. ut there is no doubt that alarger trial on rokarin is needed.

How To Get Prokarinrokarin can only be prescribed

by US physicians and is made upby one US compoundingpharmacy called Customrescription Shoppe (see below).The doctors at the Tahoma Clinic

can prescribe rokarin, including topatients from overseas. You have tofill in a long patient questionnaire,and then have a one-hourtelephone consultation.

P

E n

Info BoxThe US company DMS, C, thecompany set up by laine De ack haslicensed patent rights to rokarin. There’sa lot of information and laine De ack’sown story via this website.DMS, C

Tel 00-1- 0- 5 -0mail info edmsllc.comebsite www.edmsllc.com

Tahoma Clinicwww.tahoma-clinic.comTel 00-1- 25-2 -005The only compounding pharmacy whichsupplies rokarin is Custom rescriptionShoppe in ashington state.Mike alsh is Canon ndrew hite’scompounding pharmacist. mail mwalsh crxshoppe.com

Tel 001- 0- 5 -0

Prokarin – What Is It andHow Do You Get It?

A ro r n t h th t n nt o n


rokarin is cheap compared toother things I have tried. Itcomes from the US . I amrather fortunate in working withmany US military doctors andthe US Deputy Secretary ofDefense at the entagonarranges it for me. It is sentfrom the US to the U .

t times I cannot get the skinpatch when I need it. ither Iforget it in a fridge in anothercountry or else my bodyguardsfrom the U cannot bring it overto Iraq on the day that I need it.If this happens my health rapidlydeclines. t least that shows me

that this is really working. t times I get angry why is it

that there is such a simplesolution that is not widelyknown about? It does not costmuch, it always works anddespite the distance it is readily available.

Just Off To Meet Some Terrorists

Meanwhile for me it isanother day in aghdad. I amjust off to do a press conference,then to the US mbassy, then tomeet some terrorists to try andarrange a local ceasefire and the

list for this day alone goes onand on.

This morning I did not finishwork until 2 am having nowwritten this it is am and it istime to get going. I am writingthis from my ortakabin in theInternational one.

I hear the mortars andhelicopters flying. The heattoday is 5 C and I just have togo on and on and on. The heathere is an issue but I am veryodd in that I am worse in thecold and wet than the heat.

hen I come back to the U Ialways get worse.

I can cope with the heat up toabout 50 C. Here it reaches 0 Cin ugust and then I have toleave. e do have airconditioning when we haveelectricity, which is not always.

There are indeed days when Istill feel awful but the reality isthat I could not do what I dowithout rokarin. I have triedother substances for my MSincluding imspro which didhelp hugely for a while but was expensive.

rokarin could be a simplesolution which takes you out ofhell. Since I have been on therokarin I have only had one

relapse which was quite bad and recent.

Of all the things I have triedrokarin has been the best. It

does not cure you but deals withso many of the symptoms andhas no side effects. I haverecommended it to other peoplewith MS and they have allseriously improved.

hen I have a relapse it isreally difficult because mostpeople do not really understandhow much help I need. I usuallyhave one member of staff withme who kind of understands itis so difficult though.

non An r h t o ts h s ort b n n h hoto o rt sy

n st r n to h s hr st n r r sh on rs hoto o rt sy

Treatments - Prokarin


y is notasymptomatic. ikeall of us have good

days and bad days. strugglewith my sight, my balance andmany other things. also havedays when wonder how muchlonger can keep going.

I too have longed for a cure. Itoo have become so frustratedby all the people who send methe answers. Most of them Icannot observe because I do nothave control of my diet. I haveto eat what I am given. There isno chance of going out here tothe shops. If I was to do so Iwould be killed.

I have tried many of therecommendations and finallyhave found one that really doeswork and has transformed mylife. The reality is my ten yearshere would now be over if itwere not for the one thing thathas simply transformed my life: Prokarin.

I was sent a book from the USby Elaine DeLack called "It doesnot make Cents". Elaine Delackis a nurse who got MS. She thendedicated her life to finding theanswer. It finally came in the

form of a skin patch which isrelatively cheap called Prokarin.Its active ingredients are simplyHistamine and Caffeine.

For me it did not workovernight. It took a few weeks towork and then suddenly Irealised my life was different.My wife first noticed that I hadcompletely changed. No longerdid I have mood changes. Nolonger did I have to spendseveral hours resting. No longerdid I feel ill all the time. My life

was transformed.The treatment of Prokarin is

so simple; one skin patch a daywith no side effects. Prokarin isnow in a ready-made skin patch,not the separate cream andcaffeine like it used to be.

How do I manage to keepgoing, how do I manage to doone of the most complex anddifficult jobs, in the mostdangerous place in the world? Itis simple - I have one skin patcha day of Prokarin.

“My Life Was TransformedThanks To Prokarin”

Canon Andrew White was told by the Church in England that he wastoo ill with MS to work as a vicar in this country. Now he has found hissalvation in Baghdad trying to bring the warring factions together aswell as being minister at the only Christian church there, St George’s.He uses Prokarin patches for his MS, which he says keep him going.Diagnosed with MS in 1999, Canon Andrew White, 43, is Director of theChurch of England’s International Centre for Reconciliation. He ismarried with two sons and, when in England, lives in a rectory inHampshire. He was recently the subject of an ITV documentary

M

Says Canon Andrew White, The Vicar Of Baghdad

Canon Andrew White in Iraq. Photo courtesy ITV

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n ro o sts h n t to s bo tth hys rob ms th t m y

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m no n h h or mor y rs th n r to

r m mb r n so m r t nth s no s or n to o s m ht not b h r or too m hon r ot str ss st

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th ys or b sh nh s so ts rA s r o s or r s nt nth m or mys or tt nth m t to m

sh r o s o s nmor t m n r s m b y br n

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s s n ho n n or b n t

tr tm ntsn th m nt m s st ont n th n n

os t y o n o r o nr m s or m n n o r

on t on n s n o r nn tno o h t o s no sn t or or s

on t t n ro o sts t s o n ry

At the end of July Christine Jones,57, retires as Chief Executive of the MSTrust after 15 years at the helm.

“After I retire I’m going torediscover life, and start with the“gap year” I never had,” saysChristine, who now plans to gotrekking in northern India andBhutan with her husband Roger.

“I thought I should live life to thefull and travel while I still can. I lost

both my parents in the last 18 months and it makesyou look at your own mortality. It makes you wonderhow long you’ve got.”

Diagnosed with MS in 1980, Christine neverthought she would be trekking 28 years later.

“At the time I was diagnosed the image of MS was

very negative. It was diagnose and adios. It was atthe height of those shocking ads about MS. Thoseimages got into my head and I feared I wouldbecome seriously disabled.

“I thought, ‘I’d better order my wheelchair now.’ I expected to be very disabled very quickly but thatdidn’t happen. I was quite unwell for the first threeor four years but then came through it.

“Now, I do have minor sensory symptoms butwalking is very rarely a problem. I recently went toScotland with my husband and walked 14 miles to getinto training for Bhutan. I know I am incredibly lucky.”

At the MS Trust Christine hands over the reins ofChief Executive to Pam Macfarlane. She says “I couldnot be more confident in her ability to lead thefabulous MS Trust team and to continue our work toimprove services for people with MS.”

Christine Jones ‘Rediscovers Life.’

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15MSRC 0800 7830518 www.msrc.co.uk

Diet, Supplements, Exercise & OtherTherapies Can Make A Difference

The overriding positive message we must putforward is that the statistics quoted by Dr Coles donot take into account how the course of MS can beimproved by doing all the things we so often writeabout in ew athways diet, supplements,exercise, alternative therapies, positive thinking etc.

nother positive way of looking at scary facts is that,armed with this knowledge, you can make decisionsabout your lifestyle and future. Dr shton mbry goesinto this aspect in more detail on pages and 50.

eurologists like Dr Coles will never take thetherapies we feature in ew athways seriouslybecause he does not think they stand up toscientific scrutiny. If a treatment hasn’t beenshown to work in a double blind placebo controlledtrial, then it doesn’t work! is what he said to theMS ife audience (talking about D ).

ut that’s the view of a typical, old-schoolneurologist. Our view is that - as an individual you can improve your MS. It may be anecdotalevidence’, but if it works for you, who cares?

In our view, you are less likely to need a stick at5 or die after 0 (or 0) years with MS if you dothe things that make a difference.

“I found Dr Coles’ article hard hitting and brutal.A newly diagnosed person would, I believe, feelutterly dejected after reading Dr Coles depressingstatistics – do they really need to be spelled out tous?” – Barbara Lis

“I feel so upset after reading about the Myths andFacts. I haven’t stopped crying.” – Tracy Holmes

“To present these ‘facts’ in such a bald, negative,unbalanced way is, I feel, at best ill-considered and at worst crass and completely insensitive.” – Chris Catchpole (Dr)

“I was really disappointed that such a great magazineprinted the article Myths and Facts. It was one of themost depressing articles I have read, particularly thesection “Some Hard Facts About MS.” – Sandra Essex

“I read your magazine every month and enjoy itbut I was horrified when I read the article on Myths& Facts. My doctor and MS nurse have been verypositive about my prognosis and here I am readinghard facts that do not correspond in any way withthe things I have been told.” - Maria Harding

“I was disappointed and angered by the article inwhich Dr Alastair Coles "shattered some well-wornmyths with some harsh facts about MS. As toreduced life expectancy, Dr Coles contradicts himselfwhere he says that: "Life expectancy is reduced by5-10 years." Given the average age of death for

non-MS sufferers nowadays, even if we subtract this"5-10" years we would not be looking at dying"around 60" it would be nearer 75.” – Garry Todd

“I am writing at last it seems to compliment everyoneconcerned with the ‘New Pathways’ magazine on itsquality of information, factuality, balance and positiveapproach – the format is very good.but your article wasmore than merely ‘sobering’, it was negative, frighteningand fatalistic to all those of us who are trying to livelives as positively as possible and feeling quite proud ofthat mentality and sheer effort.” – Graham Bedford

“ I have been a subscriber to MSRC for about 6years now and have always appreciated that, unlikethe MS Society, you will publish articles in NewPathways and leave readers to make up their ownmind, which is fine when it comes to treatmentsthat may or may not work.

Sadly I must take issue with you for publishingsuch a destructive article from a neurologist. Themagazine went straight in the bin.” – Sue Holloway

“What Dr Coles said may have a high degree oftruth, but it offers nothing new or constructive. NewPathways and the MS Therapy Centres do a greatjob of improving the lot of MS sufferers. The Mythsand Facts article does the opposite.” - John Riley

Advertisement

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he article hat re he yths ndhat re he acts bout on pages and in the last issue of ew

athways resulted in a number of you emailingor writing to us. ere, we publish e tracts fromthese letters, and will also attempt to addressthe various points raised.

ut first, I owe an apology to all those whofound the article upsetting. It is never our intentionto do this.

I also owe an apology to Drlasdair Coles for erroneously

putting his by-line to thearticle. Dr Coles did not writethe article. I wrote it based onhis talk at MS ife.

Some of you complained thatthe article was unnecessarilycurt, bald and harsh. Dr Coles’delivery of the facts wassomewhat less brutal thanappears in the article, which isnecessarily a shortened version

of what he said. However, the facts are the same. fter his talk, I (being 1 and thinking my time was

up after 5 years of MS) approached Dr Coles aboutthe statistics he quoted. His reply was along the linesof These are averages. Statistics reflect facts at apopulation level, but not an individual level.’

Dr Coles has also written an article on this topicfor the MS Society website which gives thestatistics about MS in a more positive light thanhis lecture. hy de did not present these factsinstead of the ones he quoted, I do not know.

Dr Coles writes s om n t sm oss b to r t ho yo m y b t o r

t m As r s t t s s t to t rm n th t n y o som on th s t s or

som on ho o s not h h on y y to t n n r t rms bo t ny

s t o n n t n y s to th rto th r th n orm t on rom tho s n s o o

th th n ss n t n r An rr s s o r o not ss m th t

yo r b h st th r thr n o o th s ry r

o r r s r h s sts th t h o r t n y o o th s

on y s ht y o r th n th t o th n ro t onn th s n r s n t n y oro th h s ro n mor r y th n n

th n r o t on m ro h th r or o th s r

h s b n t n r n r m t r ths o s t t n y o r t s

r t y oss b to h norm s n n o nr t s s ts o snot s th o rAs th s b ty rom n r s s so r s s thr s o h st or b r n t ons n rt o th r s o o th o s hn t ons t s rt n y orth s n mtt nt on yo h ho n rob ms th oo

or r n or yo h r rr nt n t onss r h s sts th t on r

t n y o o th s o r th n th to th n r o t on by ro n y rs

n r o s ht y ss th n ortyy rs t r th r rst sym toms

om r s r h sho s s r h s b n m ro n nr nt y rs rh s to b tt r h th r

o not no s s mo y n r s b tnt r ron n n t n y

ven though Dr Coles toned down the harshnessof his facts in his online article, the bitter truth isthat many facts about MS R negative. So thequestion arises Should we at ew athways flinchfrom publishing unpalatable truths? Should youshoot the messenger or the message?

ew athways does have a well-deservedreputation for being positive and upbeat areputation we intend to preserve but must thatmean that we always skirt round difficult issues oravoid harsh truths?

I don’t think so, but I do agree with those of youwho say that negative facts should becounterbalanced with positive ones and put in awider context, which we should have done in thiscase, what we are doing now and what we wouldstrive to do in future.

‘Myths & Facts’ Article – Apology & DiscussionT

Judy Graham, Editor of New Pathways, writes


r A s r o s

Cryptic Crossword


By Cryptic Charlie Gee

You’ll need issue 49 of New Pathways to get some of the answers.

Across7. Bedtime suit. (7)8. The soldier leaves reportedly to get model

of perfection. (7)10. If here you will find the young cow. (6)11. Goes on for longer. (8)12. Carry the animal. (4)13. One of the throw away society! (6,4)14. Striking, you have to look! (3-8)19. Sounds like you say hello to Mick and Keith

for wintry weather. (9)22. Boast about the bird. (4)23. Company man and revolutionary Red Indian. (8)24. Join in citizen listening society. (6)25. Use in mothers where old things are kept. (7)26. In the last issue he wondered whether there

was a certain personality for people who have MS. (7)

Down1. Sort group sorted by compositor! (7)2. See 5 Down3. In the last issue and Louise went skiing on

a bike. (6)4. Reason for dentists. (3,5)5. and 2. Down In the last issue Tysabri got

him back to normal. (6,8)6. Mug about above leads to Watergate

for example. (7)9. Laurel follows alcoholic beverage

for capital. (4,7)15. Burial place. (8)16. Kiss material for jewellery! (8)17. Sounds like you ban modern music and

get classical music. (7)18. Very warm round and becomes extremely

successful person. (7)20. The foliage goes away. (6)21. You have to look twice for this in

the playground. (6)

Answers, with some explanations, on page 52

1 1 2 2 3 3 4 5 5 4 6 5 7 6 8

7 9 8

9 9

10 11

12

12 13

15 16 16 17

14 15 16

19 17 18

19 20 21 22

22 23

23 24

26

25 26

28 29


The course is fabulous andcontains excellent supportmaterials that have had a hugepositive impact on the clientswith MS that I see.

Many ThanksJoanne Hope (Physiotherapist)

How Do I Deal WithMuscle Spasm?Dear New Pathways,

One of the most distressingsymptoms of my MS is severemuscle spasm. The spasms areexcruciatingly painful andcompletely out of my control.They can happen at any time andnothing I have tried hasalleviated the pain or the severity.

It is hard to describe theintensity but when for instance,my left arm goes into spasm itfeels like it is crushing me and Icannot physically or mentallymake it relax. My legs also spasmand when this happens my kneeslock together to such an extentwhen my husband tries to dressme he cannot get my trousers up.

My own GP is at a loss asalthough he has several patientswith MS, none of them havedescribed having spasms like mine.

Can I also ask if anyoneexperiences sticky hands? For meit’s like I have glue on my fingersand yet other people tell me thatmy hands are not sticky.

I would greatly appreciate tohear from anyone who hasexperienced what I am goingthrough and would be moregrateful to hear from anyonewho can offer any suggestions as

to what I can try to alleviatethese symptoms.

Yours sincerelyMaureen Gunson (Mrs),Worington, Cumbria.Ed says: Have you tried taking

magnesium? It can sometimes helpwith muscle spasm.

If readers have suggestions forMaureen, please send them to themsrc who will forward them toMaureen.

How Do I Deal With Faintness?Dear New Pathways,

I have had MS since 1974 andhave been secondary progressivesince 1999. I do get really badnausea and dizziness, but in thelast three years I have started toget periods of faintness whichlast for days or months at a time(and sometimes get dizziness andfaintness together). Doctors andneurologists have not knownhow to treat this and I have beentold it is probably another MSsymptom that I have to put up with.

I would like to know if anyother New Pathway readers getthis faintness and how to treat it.

Yours faithfullyAnne Edwards,Portree, Isle of Skye

Help Needed WithGuidebook,Dear New Pathways,

I'm currently researching andwriting a new guidebook whichwill be entitled "African Safarisfor People with LimitedMobility".

I am quadriplegic and a full-

time wheelchair user, but thisbook is aimed at everyone withrestricted mobility, including part-time chair users and 'slowwalkers'.

I would like to know moreabout the fears and barriers allthese people face whentravelling, and just as importantly,how they overcome them,

I'd hugely appreciate anythoughts you have. It does NOTmatter if you've not been toAfrica and you can send one tipor write a whole essay; I'll read allreplies and ANY advice could berelevant. I will not mention youby name if you prefer this.

Here are some suggested topics: • bathrooms (understandably, the

biggest worry for many is howthey can use the toilet, showeror bath if they're not asaccessible as at home)

• air travel (the second biggestfear...)

• vehicle transfers (including highvehicles, like 4x4s, buses andcoaches)

• steps • tables in restaurants • poor ground surfaces and

rough paths • narrow doorways • lack of seating • camping (many safaris use

lodges and hotels, but somepeople still prefer traditionalcamping)

• switches and handles • planning and packing • temperature and weather

extremes (heat, cold, wet, dry etc)

• safety and security Thanks and I'm looking forward

to hearing from you! Regards,Gordon [email protected]


Postbag Your LettersDo you have something to say or helpful information to pass on? hether it’s gripes and groans, a pat on theback, or hints and tips, we’d love to hear from you. lease write to udy raham, ditor, ew athways,

, eartree usiness entre, eartree oad, tanway, olchester, sse Tel 0 00 051 or 0120 505 ax 0120 505 e-mail info msrc.co.uk

Enjoyed Food ArticleDear New Pathways

Can I just say how much Ienjoyed the article by JanetOrchard on her struggle withboth MS and to find suitableingredients for the BBD dietwhere she is living in Catalonia.

Is there any chance of hearingmore from this lady? I'd love tosee it as a regular feature in yourexcellent magazine.

Many thanks,Mark Redgewell,Sydney, AustraliaThe article mentioned above

(New Pathways issue 47) can bedownloaded from www.msrc.co.uk

My MSRC Wristband Is No More!Dear New Pathways,

The MSRC wristband is nomore. It’s gone to meet his maker.You couldn’t bring the insigniaback if you put 20,000 voltsthrough it!

My left hand drags on the chairsometimes and I’ve managed tonearly wear it out !!! It’s paperthin and about to snap after

three solid, uninterrupted yearsadorned on my otherwise inactiveleft hand. It has been a usefulbrake and speedily helps me turnthe wheelchair right to left.

It’s multi functional and I don’tknow what I am going to dowhen it goes to the "Greenwristband grave" in the sky.

Yours in mourning,Mark Jennings.

I Still Use My BrainDear New Pathways

I thought it might beencouraging to counteract someof Alasdair Cole’s predictions.Although I might not be able torun marathons and cope with a lotof physical activity, I can still usemy brain and motivation to givean interesting dimension to life.

After 14 years with MS Iembarked on an Open UniversityArts Degree course, having just hadto retire from my nursing career atthe age of 57. The OU is verysupportive of disabled students sono-one should be put off and thechoice of courses is large and

varied: something for everyone.Having gained my BA in 2002 I

started writing a book which hasjust been published. It is a familyhistory, concentrating mainly onmy father who served in the RAFwith Lawrence of Arabia whenthey were both recruits forphotographic training. He wenton to photograph life and eventsin Aden, Somaliland and Abyssiniaduring his service career.

From his diary covering 1940 to1942, notes and photographs Iwas able to record his personalaccount of the siege of Maltawhen the island was awarded theGeorge Cross. In stark contrast, Irecall my memories of what it waslike to be child in wartime Britain.

The title is: FOOTPRINTSTHROUGH A CENTURY 1880S to 1980s

By JEAN BUXTON (my maidenname) and ALAN WILDSMITH-TOWLE

ISBN number 978-1-84306-412-1It retails at £14.99 and can be

ordered through bookshops ordirectly through me bytelephoning 01773 857061.

I hope this will encourage othersto find satisfying outlooks to theirlives even when Alasdair Colesthinks their time is nearly up!

Yours sincerelyJean HeaneyDerbyshire

Thanks To Mercia MSTherapy CentreDear New Pathways,

I am a Physiotherapist workingat Coventry's Mercia MS TherapyCentre and Wolverhampton MSTherapy Centre and I would liketo thank them for helping tofund me to further my educationand become more knowledgablein MS as I have started the LeedsPostgraduate certificate in MS,

Diet

44 New Pathways Issue 47 January/February 08

f youshunbread,

the locals thinkyou’re mad.

sking forgluten-freefood in aCatalonianrestaurantleaves waitersbaffled andoften the chefhas to be

summonsed. fter muchconversation, a gluten-free dishis beamingly brought to ourtable. Then a bread roll isplonked down beside it. hen Iquery it, the waiter says,

veryone must eat bread!It s much the same story at

the butcher s. He cannotunderstand why I want to knowif there’s wheat in his sausages.Sausages are made of meat, hepatiently explains in words ofone syllable.

I make an appointment at thedoctor’s for allergy tests. hen Isee him he is just finishing hismid-morning baguette.Courteously brushing the crumbsoff the seat, he asks how I am.

Somewhat apologetically, I saywhy I am there, telling him

about the D. Then heproclaims hy would anyonewant to eliminate the root ofthe Catalan diet?Maybe it s because she snglish, I hear his assistant

whisper.t the local market, I shop for

things I C eat. Dried dates andfigs. Safe or so I think. hatis this white stuff on them, I ask?Oh, they are just dredged with

flour to stop them sticking.

In utumn, the Catalanbakeries are full of panellets,wonderful mar ipan and pine-nut sweetmeats. Thinking I wason to a winner, I did the roundof all the local patisseries to findwhich of these did not haveflour. The reply? Of course tomake them bind correctly, nobaker worth his salt would leaveout flour.

Mounds of Peas & BeansStarting the est et Diet

coincided with the beginning ofthe pea and bean season. ustgetting into the greengrocerspast mounds of the things, youfeel you will break into a sweat.

eas and beans crop up in justabout everything. asy to avoidin obvious dishes like pea soup,stewed green beans with ham,or cuttlefish and peas, thedifficulty comes with dishes likepaella, rice casserole, etc. wherethe peas aren’t named.

uckily, dairy doesn t featuremuch in the diet here... until youget to dessert, and then

RYTHI G is made of eithermilk, wheat, or both, and topped with whipped cream forgood measure.

Then there’s the matter oftomatoes, the latest no-go areaon the est et Diet. tricky one,this, in a region where they’vebeen eating them for over 500years and there’s scarcely aCatalan dish without them.

t first, I didn’t dare broacheliminating tomatoes with Dave,who does all the cooking now.Mainly cooking Catalan food, atleast half his recipes havetomatoes. ow he’s experimentingand we O T give up.

Janet Orchard finds it tough on the Best Bet Diet in a regionwhere bread is the staff of life.

Wheat-Free In Catalonia(Also barley, oats, rye, soya, dairy, legume,refined sugar and tomato-free)

Janet, 56, who used to work in Human Resources, has lived in Begur,Catalonia, Spain for the last 5 years with her husband Dave. Diagnosedwith MS in 1995, she has become an avid follower of the Best Bet Diet,starting it in earnest last Spring. They both took early retirement and wentin search of a panacea for MS in Catalonia where the lifestyle, climate andMediterranean diet are so good for MS. Now with the BBD it isn't so easy.

Janet Orchard

I

A plate of panellets


News & Snippets

This sets out a ten year vision and reflects whatcarers said they want to see. The main points are:• Carers should have a life of their own • Carers should not be forced into financial hardship • Carers should be treated with dignity and respect

There will also be more money for respite breaks,and more support from the NHS. However, there areno immediate changes to Carer’s Allowance

although the Government has promised a full reviewof carer benefits.

CarersUK says it welcomes much of the strategybut “it offers little comfort to the hundreds ofthousands of families living in poverty as a result oftheir caring responsibilities. Carers UK isdisappointed there is no immediate financial helpfor carers who rely on benefits.”

UK Government’s National Strategy For Carers.

Debbie Purdy, 45, from Bradford, who has MS, haslaunched a legal challenge to try to find outwhether her husband would be prosecuted if hehelped her travel to Switzerland to commit suicide.She says if the law is not clear, she may be forced toend her life sooner than she wants to, to ensure herhusband, musician Omar Puente, is not jailed.

She is a member of Dignitas, which operates

clinics in Switzerland where people can go tocommit suicide.

Legally, anyone who aids the suicide of anotherperson can face 14 years in jail. She fears that if shewaits too long, she will be unable to travel to aclinic alone and does not want her husband to riskjail for helping her.

The court hearing will be in October.

Woman Seeks Clarity On Assisted Suicide

Smoking marijuana can cut pain intensity in patients with nervepain, a new study by University of California Davis has revealed.

In the study involving thirty-eight patients, researchersexamined whether marijuana produces analgesia for patients withneuropathic pain. The subjects were given either high-dose (7 percent), low-dose (3.5 per cent) or placebo cannabis. They foundthat identical levels of analgesia were produced at both high andlow doses of cannabis.

Source: University of California Press Release

Cannabis May Help Ease Nerve Pain In MS

An American neurologist has reported the case ofa young woman who developed

aggressive MS after going onTysabri (natalizumab). J.DBerger, from the Departmentof Neurology at theUniversity of KentuckyCollege of Medicine writes. “I report a 31-year-old

woman with relapsingremitting MS of 12 years duration

who developed aggressive demyelinating diseasefour months after the initiation of natalizumab. The

clinical worsening was accompanied by a significantincrease in new large T2-hyperintense signalabnormalities and in both solid and C-shapedcontrast-enhancing lesions. Neither the clinicalseverity nor the striking MRI abnormalities had beennoted earlier in her disease course. Neutralizingantibodies to natalizumab were not detected. Shesubsequently responded to combination therapy ofpulsed mehtylprednisolone and daily glatirameracetate (Copaxone).

Source: Multiple Sclerosis, Vol. 14, No. 5, 708-710(2008) DOI: 10.1177/1352458507087135 © 2008SAGE Publications (20/06/08)

Case of Aggressive MS After Taking Tysabri (Natalizumab)

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An unusual treatment being tried out for MS in anAmerican hospital is to drink a cocktail of wormeggs, which hatch inside the body. Doctors say thelow-grade infection of worms, harvested from pigs,can help regulate faulty immune systems. .

“The yuck factor is hard to get over,”acknowledged Dr. John Fleming, the neurologistwho plans to launch a study of worm therapy nextmonth. “But the idea has scientific merit.”

Patients with other conditions, such as irritablebowel syndrome, have tried worm therapyelsewhere. It has eased symptoms without causingknown side effects. Many scientists believe theprevalence of such autoimmune conditions —including multiple sclerosis, allergies, asthma and aform of diabetes — is partly explained by a “hygienehypothesis.” Sanitary environments in developedcountries have led to more of the diseases, thetheory goes, because people's immune systemsaren't properly trained by exposure to germs and parasites.

The worm therapy offers a crash course of suchtraining, Fleming said. “It stimulates the immunesystem in a good way.” He said the concept issimilar to eating yogurt, which contains helpfulbacteria that regulate digestion.In the study, five patients with multiple sclerosis willsip a sports drink-like liquid every two weeks forthree months. Each cup will contain 2,500 eggs of

the whipworm, atiny organism thatcommonly lives inhumans andanimals. Though thehuman whipwormrarely causesillness, the studyuses a pig version thatis benign in people, Fleming said.

The eggs hatch into larvae, the size of an eyelash,that stick to the inside of the intestine. In killing thelarvae, the body unleashes an extra dose ofregulatory T cells, which dampen overactive immunecells. But with the worm therapy, “instead ofknocking down the bad parts of the immunesystem, we're pushing up the good parts,” saidFleming, who has written about this in the Annalsof Neurology.

In his study, Dr Fleming found that over the courseof 4 1/2 years, 12 MS patients who had beennaturally infected with intestinal parasites haddramatically fewer relapses, less disability and fewerlesions found on MRI scans than 12 matched MSpatients who had not been infected with parasites.

Ref: “Association between Parasite Infection andImmune Responses in Multiple Sclerosis.” Ann Neurol 2007.61;1.

Can Worm Eggs Treat MS?

Rising care charges are putting olderand disabled people at risk of not

being able to afford to eat, heattheir homes, wash or get

essential support, says a newreport published by theCoalition on Chargingrepresenting disabledpeople, older people,people with long-termhealth conditions and carers.

The report,‘Charging IntoPoverty?’ reveals thatrising charges forpeople to receive care

in their own homes are causing disabled and olderpeople in England to reduce or even stop theirsupport services.

The survey found that: 80% of people surveyedwho no longer use care services say the chargescontributed to their decision to stop their support. Afifth (22%) of people surveyed who are currentlyusing support suggested they would stop if chargesincreased further. 29% of respondents do not feeltheir essential expenditure (related toimpairment/health condition) is taken into accountin financial assessments to pay charges. Nearly threequarters (72%) of people surveyed believe theGovernment should think about the charges peoplepay for support at home in adult care reform plans.

Source: Coalition on Charging Press Release

Rising Care Charges “Leading Disabled People Into Poverty”


Exercise works better atcombatting MS fatiguethan any drugs. "There isno effectivepharmacological

treatment for fatigue,although a few reports point

towards beneficial effects fromphysical activity for MS patientssuffering from fatigue," saysneurologist Y.D.Fragoso of the

University Metropolitana ofSantos in Brazil.

"We devised a physical

activity program for MS patients with fatigue whichconsisted of a 20-week series of gradual stretching,resistance and aerobic exercises, adapted to theindividual clinical condition of each patient. Theresults showed significant improvement in cardio-circulatory parameters, as well as a significantdecrease in scores on the fatigue scale."

The researchers concluded: "The success of thisprogram led patients to ask to continue with it afterthe trial was finished, and more patients areenrolling in the program, motivated by the goodresults reported by fellow patients."

Ref: Neurorehabilitation journal, 2008;23(2):153-7).

Beneficial Effects of Exercise on MS Fatigue

Patients with conditions like multiple sclerosis andmotor neurone disease will have their own NHSbudgets to buy the care they think is best for them.

The personalised NHS budgets will be piloted by5,000 patients from early next year, under the NHSNext Stage Review. It is unlikely the patients will behanded the cash, rather the funds will be managedon their behalf and no patients will be forced totake part. There will also be safeguards so patientsdo not worry that they will be denied care if their'budget' runs out.

Source: Daily Telegraph 01/07/08

Ms Patients In UK ToGet Own NHS Budgets

Simply chewing could release harmful mercuryvapour from dental fillings, says the Food & DrugAdministration (FDA) in the USA. They hadpreviously advised that fillings made with mercurywere safe. The FDA website now states: “ Dentalamalgams contain mercury, which may have

neurotoxic effects on thenervous system…”

It adds that mercuryvapour is releasedwhen amalgamfillings are put in or

taken out, and whenchewing food. Small

amounts of mercury vapour escape and are passed intothe bloodstream and organs.

More than half an amalgam filling is made up ofmercury. It is mixed with silver, copper and tin tomake a durable filling.

The FDA is now carrying out an urgent review ofits rules and may end up banning mercury fillings.These are already banned in Norway and Denmarkand Finland and Japan have severe restrictions.

In the UK, the Department of Health issued astatement to say that it continued to believe thatmercury fillings posed no danger.

Source: Daily Mail, June 30th, 2008.

Neurotoxic Effect From Mercury Fillings, Says FDA

News & Snippets


If you have anything for this section, please write to ews Snippets ew athways, , eartree usiness entre, eartree oad,tanway, olchester, sse

Tel 0120 -505 ax 0120 -505 e-mail info msrc.co.uk

A daily 0.6mg dose of the new oral drugLaquinimod led to a 40% reduction compared toplacebo in lesions in the central nervous system asshown on MRI, reports a study published in TheLancet. The immunomodulatory drug, which is anti-inflammatory, was trialled in 51 centres in ninecountries on patients with relapsing remitting MS. Itis made by Teva Pharmaceutical Industries.

Whether or not Laquinimod is more effective thanexisting disease-modifying drugs will have to be put

to the test. However, there is nodoubt that a treatment which youtake by mouth is more convenientthan one which is injected. The drugstill needs to go through more trialsfor safety and side effects. However,the study authors say Laquinimodshows promise as a new oraltreatment for MS.

The Lancet 2008; 371:2085-2092

40% Reduction in Relapses With New Oral Drug Laquinimod

People who experience the same clinical symptomsof MS may have different forms of the disease thatrequire different kinds of treatment, according tostudies on mice at the University of Michigan.

The team found that different inflammatorychemicals could bring on the same paralysis andother MS symptoms. They also showed that drugswhich block one of the inflammation pathways were

not effective at blockingthe other. This mayexplain why some peoplerespond to beta interferonor Copaxone betterthan others.

Ref: Journal ofExperimental Medicine, July 7, 2009

Distinct Types of Disease In MS Patients With Same Symptoms

A plant compound foundin abundance in celery andgreen peppers can disrupt akey component of theinflammatory response in thebrain, researchers at theUniversity of Illinois havefound. These findings haveimplications for research into MS, aging andAlzheimer’s Disease.

The study looked at luteolin, a plant flavonoid known toimpede the inflammatoryresponse in several types ofcells outside the central nervoussystem. The purpose of the study wasto determine if luteolin could alsoreduce inflammation the brain.

Source: Scientific Blogging21/05/08.

Celery and Green Peppers Are Anti-Inflammatory

An antibody called rHigM22 may become the firsttreatment to promote myelin repair in MS. Studiesare being carried out in a partnership between the

Mayo Clinic and University of Minnesota.Source: Postbulletin.com 19/04/08)

Potential Treatment for Remyelination

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Editorial


EDITOR: Judy Graham PRODUCTION EDITOR: Helen Yates DESIGN AND LAYOUT: www.tickledpinkdesign.co.uk PRINTED BY: Direct Solutions. Tel: 01255 221322 PUBLISHED BY: The Multiple Sclerosis Resource Centre, 7 Peartree Business Centre, Peartree Road, Stanway, Colchester, Essex CO3 0JN. Tel: 01206 505444 Fax: 01206 505449 email: [email protected] Pathways and its publishers do not guarantee the accuracy of statements made by contributors or advertisers or accept responsibilityfor any statement which they express in this publication. Articles are considered on the basis that they are the author’s original work.All rights reserved. No part of New Pathways may be reproduced or restored in a retrieval system or transmitted in any way without priorpermission of the Editor.Charity no 1033731

Normally in New Pathways, weaccentuate the positive and playdown the negative side of MSeven though of course we knowit’s there. So many readers of thelast issue were shocked andsurprised when we ran a report onsome of the more unpleasantfacts about MS. On pages 14 and15 we publish extracts from yourletters about this and discuss thewhole topic. And on pages 49 and50, Ashton Embry PhD argues thatwe need to know the risks we facein order to plan our future.

Most of the time, I am sitting atmy desk working on my computer.But very occasionally, I go out andabout and have a bit of fun. Onesuch occasion was flying a lightaircraft – or at least being at thecontrols for ten minutes while anexperienced pilot from the BritishDisabled Flying Association wassafely at the dual controls. It’s anexperience I would heartilyrecommend, even if, like me, youare one of life’s scaredy cats. Youcan read all about it on pages 30and 31.

One of my heroes is CanonAndrew White, known as theVicar of Baghdad. Each day, this

giant of a man with MS risks lifeand limb trying to bring thewarring factions in Iraq together,braving heat and constant danger.He says the one thing that keepshim going is the drug Prokarin,which he gets thanks to Americandoctors and the US military. Youcan read what he says aboutProkarin on pages 18-20.

Cooling is considered one ofthe most effective treatments forMS. So far during this excuse fora summer I have turned on theair conditioner only twice, but itcould still turn out to be ascorcher. In case it does get hotand humid, Ian Cook gives adviceon pages 24-26 about practicalways to keep cool.

Joanne Akong was luckyenough to be offered two weeksof rehabilitation at theprestigious National Hospital. Onpages 34 and 35 she writes aboutwhat goes on in rehab, and howeffective the training is foreveryday life afterwards.

Many people disabled with MSare scared to travel any distancein case things go wrong andbecause of all the practicaldifficulties. But James Buxton

and his intrepid wife Anna werenot going to be put off a trip of alifetime to South Africa justbecause he’s in a wheelchair. Youcan read about their holiday onpages 36 and 37.

Artist Sarah Longlands thoughtshe would never be able to paintagain when MS struck a fewyears ago. But, thanks to goingon the Combined AntibioticProtocol, she got the use of herarms back and now some of herpaintings hang in the penthousesof the liner The Queen Mary. Youcan see some of her excellentpaintings on pages 40-42.

Plus, we have a bumper lot ofNews, many interesting Snippets,an excellent short story, recipe,and crossword.

With best wishes,Judy Graham, Edtor

Dear New Pathways Readers

y r h m

In issue 49 we published several articles based onpresentations by a number of prominentneurologists/researchers at MS Life. Unfortunately thearticle that summarised the presentation by DrAlasdair Coles was wrongly attributed as being writtenby him when it was, in fact, written by Judy Graham.Dr Coles had no personal input into the piece or its

publication. We apologise to Dr Coles for any distresscaused by this error or by the way his views wereportrayed in the article. Dr Coles recently updated anentry on the MS Society‚s website relating to lifeexpectancy and MS. You can read it here:http://www.mssociety.org.uk/about_ms/first_questions/life_expectancy.html‰

Apology...


1 22

Contents July/August 2008 - Issue 50

6-10. News & Snippets40% reduction in relapses withnew oral drug Laquinimod;Distinct types of disease in MSpatients with same symptoms;celery and green peppers are anti-inflammatory; Potential treatmentfor re-myelination; Neurotoxiceffect from mercury fillings, saysFDA; Beneficial effects of exerciseon MS fatigue; MS patients in UKto get own NHS budgets; Canworm eggs treat MS? Rising carecharges “leading disabled peopleinto poverty”; UK Government’snational strategy for carers;Woman seeks clarity on assistedsuicide; Cannabis may help easenerve pain in MS; Case ofaggressive MS after takingNatalizumab (Tysabri).

11-12. Postbag – Your LettersEnjoyed food article; My msrcwristband is no more! I still usemy brain; Thanks to Mercia MSTherapy Centre; How do I dealwith muscle spasm? How do Ideal with faintness? Help neededwith guide book.

13. Cryptic Crossword CluesBy cryptic Charlie Gee

14-17. Feeback.’Myths &Facts’ Article – Apology,Discussion & Postbag. Should New Pathways shrinkfrom publishing upsetting factsabout MS?

17. Christine Jones Of TheMS Trust Rediscovers Life!18-19. Vicar of BaghdadCanon Andrew White says ‘life

transformed thanks to Prokarin.’

20. Treatments – Prokarin. What is it and how do you get it?

22-23. MSRC PatronAlastair Hignell Alastair writes about retiringfrom his job as a BBC Radio 5Live rugby commentator.

24-26. Cool It!Ian Cook provides practical waysto keep your cool in the heat.

27. Bits & Pieces.28. Tried & Tested – The MobiliserJulie Green’s posture is betterand she feels more lithe andrelaxed after treatment with the Mobiliser.

29. Bits & Pieces.30-31. Life Is For Living – I Am FlyingJudy Graham is surprised to findherself flying a light aircraft –with ace pilot Bernd safely byher side at the dual controls.

32. Life Is For Living –Disabled ModelsLizzie Gilchrist will be modellingfashions from Wheelie-Chix-Chicat ‘Beyond Boundaries Live.’

34-35. How Rehab Helped MeTwo weeks in the neuro-rehabilitation unit at theNational Hospital in Londonhelped Joanne Akong takecharge of her life and MS.

36-37. Travel – OurChallenging Trip to South AfricaJames Buxton’s wheelchair andcommode didn’t arrive with himwhen he landed in Cape Town,but he and wife Anna went onto have an enjoyable stay.

39. Funky Future ForMobility Aids. The latest aids and equipmenton display at Naidex weresurprisingly modern.

40-42. Painting AgainArtist Sarah Longlands thoughtMS had put a stop to herpainting career, but thanks tofollowing the CombinedAntibiotic Protocol, some of herworks now hang in the liner theQueen Mary.

44-45. Short Story – AnotherLazy Sunday AfternoonBy John Lake. It seemed like anordinary Sunday afternoon, butthe knots in John’s stomach toldhim that life was just about totake a turn for the worse.

46. MSRC48. RecipeCrab, avocado and bacon salad.

49. News & Snippets.American medical students backmedicinal use of cannabis; MSpatients at higher risk of restlessleg syndrome; Synthetic peptidedrug (MBP8298) gets positivereview; Adult stem cells in braincan be re-programmed.

50-51. The Ashton Embry ColumnAshton Embry says you need toknow the risks facing us with MSin order to guide your actions inlife and plan the future.

52. Crossword Answers53. MSRC

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Yo u r M S m a g a z i n e o f c h o i c e

The Multiple Sclerosis Resource Centre’s Bi-monthly magazine

Multiple Sclerosis Resource Centre Tel: 01206 505444 or you can contact us by email: [email protected] Website: www.msrc.co.ukThe MS 24 Hour Telephone Counselling Service: 0800 783 0518 & press 1

Issue 50

July/August 2008

Paintings Fit for aQueen

Prokarin MySalvation‚

Says Vicar ofBaghdad

MEDIMOTION The new ‘VIVA 2’

Documents

Transcript of MEDIMOTION The new ‘VIVA 2’