See what you can do

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  2000          Intercommunication for People With MS – New South Wales
VOL. 10 NO. 3

                See what you can do
                Managing Visual Changes in MS.
                Many people diagnosed with multiple               Managing Changes
                sclerosis (MS) will have to deal with some
                                                                  Optic Neuritis
                kind of vision problem. That’s the not so
                good news. The good news is that MS               Both adreno cortico tropic Hormone
                related eye problems tend to get better           (ACTH) and steroids have been used in the
                either by themselves or with treatment. And       treatment of optic neuritis but unfortunately
                even when vision remains a problem, people        medications cannot prevent the condition.
                and their eyes are wonderful at adapting.         At most they hasten improvement, which is
                                                                  likely to occur anyway.
                Common Visual Disorders in MS
                                                                  ACTH prompts the body to produce natural
                Optic Neuritis
                                                                  steroids. It is not used as much as it once was,
                A common visual problem for people with           with most neurologists preferring to prescribe
                MS is optic neuritis – an inflammation and        laboratory made steroids such as oral
                demyelination of the optic nerve. The optic       prednisone or methylprednisolone, a steroid
                nerve carries information from the eye to         that is administered intravenously.
                the brain. Optic neuritis is often a first sign
                of MS. Between 50 – 70% of those
                diagnosed with this disorder will go on to
                                                                         The good news is that
                develop multiple sclerosis over a period of             MS related eye problems
                2 – 15 years.
                                                                           tend to get better
                The initial symptoms of optic neuritis may
                include blurred vision, colour blindness, pain
                                                                          either by themselves
                behind the eye when it moves, blind spots in               or with treatment
                the field of vision, or difficulty in seeing
                objects with poor contrast. Optic neuritis        With the use of steroids comes the risk of
                rarely results in total loss of vision, so even   experiencing serious side effects including
                if sight becomes very poor it is likely to        weight loss, insomnia, personality disorders
                improve over time.                                and decalcified bones. Therefore, two
                                                                  important questions arise when investigating
                                                                  the use of medication to treat optic neuritis.
                Approximately 12 percent of people with           Firstly, is it better to treat the condition or to
                MS will experience diplopia, or double            wait for it to get better on its own? Secondly,
                vision, as an initial symptom of MS.              What type of medication is best? In answering
                Diplopia occurs when the two eyes do              these questions you should talk over your
                not move together in a coordinated                situation with a physician who has knowledge
                fashion due to weakening of the eye               of MS, who knows you, and is familiar with the
                muscles. Symptoms may improve over                treatments for MS.
                time as the nervous system adjusts itself
                                                                  If vision loss is minor, it is commonly suggested
                to improve visual function.
                                                                  to simply wait for eyesight to improve.
                Nystagmus                                         However with serious visual loss the use of
                A third visual disorder in MS is nystagmus,       steroids is suggested to hasten recovery.
                which is characterized by involuntary jerky
                eye movements. As with diplopia, this
                symptom may improve as the body’s                                                     Continued on page 3
                nervous system adjusts itself to improve
                visual function.
    Sex in the Year 2000-                                             resources in this area could be addressed. The team has
                                                                      spent some time reviewing the information available
    Is it on your agenda?                                             about MS and sexuality. A list of written material about
                                                                      the subject is now available, as well as a copy of articles
    “We are all sexual beings. Sexuality is far more
                                                                      or booklets that you might want to read, through the
    than sexual behaviour. It involves relating to and
                                                                      MS Society library and information service. We have
    communicating with others and sharing intimacies.
                                                                      also spent some time improving staff knowledge and
    Sexuality is an integral part of many different areas of
                                                                      skills so that they are more comfortable and able to
    our lives, including: self image, self esteem, self perception,
                                                                      deal with sexuality issues for people with MS.
    eroticism, sensuality, interpersonal relationships and role
    expectations. It contributes to our uniqueness and                In 1992, a survey on the effects of MS on sexual
    individuality and influences how we dress, speak and              function was conducted through MagScene. While this
    relate to each other.”                                            is a very personal and private part of people’s lives,
                                                                      nearly 5O% of readers at that time responded to the
    This seems pretty important to us, yet in our society, we
                                                                      survey. Despite the good response, very few people
    aren’t supposed to talk about sexual issues that affect us,
                                                                      answered the questions on talking about sexual
    especially if we are not young, healthy and beautiful. It
                                                                      difficulties and getting help for those difficulties. From
    also seems inevitable that a diagnosis of MS is going to
                                                                      the survey we found out that many people with MS do,
    have some impact on our sexuality – perhaps physically,
                                                                      in fact, have problems with intimacy and sexuality.
    perhaps psychologically, perhaps socially.
                                                                      However, the survey was not able to tell us what we at
    Staff of the MS Society have recognised for a long time,          the MS Society should be doing to provide information
    that sexuality and MS is an area that has been somewhat           and treatment options for this group of people.
    neglected. As a result, several staff members have been
                                                                      NOW IT IS YOUR TURN!
    meeting together, to investigate how the lack of
                                                                      Whether or not you have any sexual difficulties or
       July/August 2 0 0 0              V o l . 10     No.3           concerns, we would like to know what you need as far
                                                                      as information, education or services in the area of
        1. See what you can do – Managing Visual Changes              sexuality and intimacy. Please help us to develop the
                                                                      most useful service for you and other people with MS
        2. Sex in the Year 2000                                       by telling us what you need in the enclosed survey.
                                                                      The survey should take you about 15 minutes,
        3. See what you can do continued
                                                                      certainly no longer than 30 minutes to complete.
        4. Wentworth Area x Horsing Adventures                                                     Sexuality Contact Team,
        5. Thank You x MS Public Relations                                                               MS Society of NSW
                                                                      Should the Survey be missing from your copy of
        6. Country Services North x Airport Link                      MagScene please advise the Society on 02 9646 0600
        7. Letters to the Editor                                      and a copy will be rushed to you.
                                                                                        This survey is only being sent to PwMS
        8. ID Cards x LIS Update
                                                                                                    registered with the Society.
        9. Lifetime Health Cover                                                                                            Ed

      10. Let’s Talk                                                                 God gave us two ears
      11. Mr Wisdom x Winter Soup x Taxi travel                                      but only one mouth.
      12. MS Busibody x Newly Diagnosed                                      Some people say that’s because
      13. Page 13 News
                                                                        he wanted us to spend twice as much time
                                                                                  listening as talking.
      14. Olympic Services x Garbage x GST
                                                                               Others claim that it’s because
      15. Support Groups
                                                                            he knew listening was twice as hard
      16. Behind the Scene                                                               as talking.

2               M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S
See what you can Do.
Continued from page 1

Diplopia and Nystagmus                                               camouflaging objects lying on them e.g. bed spreads,
                                                                     furniture coverings. Colored stickers can be applied
Several management strategies have been used to try
                                                                     to represent controls on appliances like a video - for
to correct the changes associated with abnormal eye
                                                                     example a red sticker for stop and a green sticker on
movements including lens and prism prescription,
                                                                     the play button. Broad tip markers, nail polish and
patching one eye, and surgical intervention. Patching
                                                                     liquid paper are useful for enhancing existing lines
is considered more effective than prism lenses.
                                                                     and text.
An ophthalmologist would need to be consulted.
                                                                     5      Audio Equipment
Making the most of Low Vision
                                                                     Technology these days is amazing! You can now buy
Many people assume incorrectly that ‘nothing can be
                                                                     many talking items such as computers, watches,
done’ when their vision cannot be improved with
                                                                     clocks, scales, thermometers, calculators, books, and
traditional lenses, surgery, or medications. In fact there
                                                                     magazines. This sort of equipment can take the
are many strategies that will assist you in making the
                                                                     frustration out of the ‘little things’.
most of your residual sight:
                                                                     6      Maximizing Tactile Abilities
1       Glare Protection
                                                                     Learn to use your hands to identify and orientate
Limit the glare interfering with your sight by wearing a
                                                                     objects via touch. For example, identify the three
hat and sunglasses when outside, tinting your ordinary
                                                                     prongs of a power point and its correct orientation
lenses, positioning chairs facing away from windows or
                                                                     by the position of the prongs. Adhesive velcro works
bright light, and using lamps positioned below eye level to
                                                                     well in providing ‘texture’ on buttons and control
light the object or task being completed. This is called
                                                                     keys. Locator dots are suitable for flat key pads often
task lighting.
                                                                     found on dishwashers, microwaves and washing
2       Illumination                                                 machines. Of course if you are really into the
Brighter environments facilitate better vision. Try                  touching thing you could organise yourself so that
incorporating natural light sourced from behind you,                 you can have another person accompany you when
minimizing shadows, strip lighting common work areas                 you go to unfamiliar places or large shopping centres
(e.g. the kitchen bench), and using an illuminated hand              where the lighting changes and there may be many
magnifier. Halogen and florescent lighting provide the               obstacles.
best sources of high illumination with minimum glare and             Where to find help
are recommended over standard incandescent lighting
                                                                     Many people are available to assist you in using these
for both room and reading lighting. Organise yourself so
                                                                     and other techniques and equipment to make the
you do ‘very visual’ tasks such as sewing during the
                                                                     most of your low vision. Assessment and treatment
daylight hours and leave less visual tasks such as making
                                                                     can be provided by a general physician, orthoptist,
sandwiches till later.
                                                                     ophthalmologist, neurologist, and occupational
3       Magnification / Enhancement                                  therapist. For further enquiries contact the MS
Generally, the bigger something is the easier it is to see.          Society Information Line 1800 042 138
Try using enlarged equipment like print books, light                                    Written by Occupational Therapists,
switches, big button telephone keypads and remote                                                   Rehabilitation Services,
control units.You can also get large print calendars,
                                                                                                           MS Society of NSW
watches, clocks and computer programs. Products such
as lenses, telescopes and magnifying glasses will assist too.
4       Contrast
Use contrast to assist in every day activities – a white              If you have your sight, you are blessed.
mug on a dark blue placemat, a black jug to pour milk
from, a white mug to pour juice, a white dinner plate to                        If you have insight,
serve food on. Try using plain rather than patterned                     you are a thousand times blessed.
surfaces, as patterned backgrounds have the effect of

    M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S             3
    To People with Multiple Sclerosis                              HORSE ADVENTURES
    under the Wentworth* Area                                      I have just spent the most fabulous
    Health Service                                                 8 days on the back of a horse.
                                                                   My adventure was at Moonan Flat
          (*Blue Mountains, Hawkesbury and                         which is near Barrington Tops via
           Penrith Local Government Areas).                        Scone in NSW.
                                                                   I told Jillian Sullivan, the proprietor,
    It has come to my attention through my contacts with
                                                                   about my MS before I arrived but
    David Bryce, Disability Advocacy Officer, Australian
                                                                   she was unfazed about it. When I
    Quadriplegic Association and Greg Marshall, Penrith
                                                                   arrived at the base camp, Jillian had
    Disability Resource Centre that residents in the
                                                                   prepared for me by putting my bed closest to the fire
    Wentworth Area Health Service are being unfairly
                                                                   and to the bathroom plus a double thickness mattress.
    disadvantaged by a request for an annual client
                                                                   There are some benefits having MS !
    contribution fee of $150 single adult or child
    (or $200 couple/family) to the Program of Appliances           At the base camp there were comfortable chairs (with
    for Disabled People (PADP).                                    backs) around the camp fire. Jillian has three backpacker
                                                                   assistants to help cooking and running the show.
    According to correspondence by Dr Tim Smythe,
                                                                   The horses are not your ordinary riding school nags.
    former Deputy Director General of NSW
                                                                   They were responsive and not hard of mouth. Horses
    Department of Health, this procedure had not been
                                                                   were allocated based on one’s abilities and personality.
    approved by the Department of Health and the
    Wentworth Area Health Service is acting against their          I was given “Spotty” to ride as he was her most trusted
    direction to discontinue this request for payment.             horse. I found him to be very forgiving ! After a hot
                                                                   shower and breakfast Spotty was brought to me. I then
    The Wentworth Area Health Service is the only                  helped prepare him for the day and I was helped to
    Area Health Service in NSW requesting its residents            mount him onto a comfortable stock saddle.
    to pay this fee. Elizabeth Barrett, Chief Executive
                                                                   My primary joy was twofold. Firstly to be “bushwalking”
    Officer, Wentworth Area Health Service, has advised
                                                                   among the mountains with glorious views and secondly
    all PADP clients to pay this annual contribution fee
                                                                   to find myself in an environment where Jillian’s infectious
    from 1 July 1999.
                                                                   enthusiasm for “Natural Horsemanship” and the
    David Bryce and Greg Marshall are advocating that              countryside were pervasive. She is very keen on the Pirelli
    clients not pay this fee until further consultation            approach to natural horse riding and used no bridle.
    with the NSW Department of Health, consumers and               Jillian was also very knowledgeable about country issues.
    the community. Clients are encouraged to contact               The nightly campfire yarns were fun before we turned in
    David Bryce, Australian Quadriplegic Association on            for our typically 10 hours sleep. The last night was a meal
    9661 8855 for further information or to lodge their            at the local Moonan Flat pub where we met the locals.
    complaint to their local members of parliament either
                                                                   So if you can hang on after you are mounted, are not
    in writing or phone contact.
                                                                   afraid of horses, can walk, trot with minimal balance
                         Sharon Lee, Outreach Worker,              problems then this is for you.
                                         14 June 2000              Talk to Jillian Sullivan at “Mountain Cattle Drives”
                                                                   02 6546 5246 after 4.30 pm.
                                                                                                                        Mason Thomas

                                                                   On 7th to 14th October the MS Society of NSW will hold their third
       It’s tough to climb the ladder to success,                  annual Holiday on Horseback for MS in the foothills of the spectacular
            especially if you’re trying to keep                    Barrington Tops west of Gloucester. With 200 riders expected to
                                                                   participate, we are hoping to raise over $40,000. The Holiday on
               your nose to the grindstone,                        Horseback is an adventure camping holiday providing participants with
               your shoulder to the wheel,                         well marked trails and a welcoming campsite every afternoon including
                your eye on the ball, and                          toilet, shower, general store, brasserie and live entertainment. All meals
                                                                   are provided for riders and their horses as well as yarding, veterinary
                 your ear to the ground.                           and farrier support. To book ph: 02 9413 4166

4              M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S
Thank You
Last week I started to type up my “little                             Linda D at my support group at Kogarah. Every time I
story”, about when I was diagnosed a                                  look at you I think to myself “think positive”. I am sorry,
year ago and what it has been like since.                             but I just can’t help it. I see you and I see such a positive
I realized it was starting to look like a                             person who gives “positive” rays out to everyone
book. Too much information I thought.                                 around you. You sound like a sun don’t you!! Anyway,
Would bore them to death.                                             thank you.
I guess we have all been through the similar processes of test        And last but not least Erin W of Serono. Thank you for
after test. The shock of being diagnosed with MS when nobody          making me feel more comfortable about taking the
told you they were even testing you for it. We have all been          injections.
through it. Having to make some adjustments to our lives, be          So thank you ladies.Take a bow. Thank you for
they large and small. Nevertheless we have all probably made          coming into my life and each of you being so caring,
changes to various degrees. Our families as well.                     understanding, patient and cracking sick jokes. Oh you
Then it hit me. I thought I would instead like to say thank you.      know how I love a good joke.Thank you.
Thank you to all of the lovely people who have come into my                                           Tanya Sutton Moorebank
life since being diagnosed. If you know me, this would probably
come as a bit of a shock, because I have probably spent the last      Public Focus on
year doing nothing but talking about myself and wingeing about        Multiple Sclerosis
my symptoms. So I take a deep breath, forget about my
troubles and here goes…                                               The day-to-day difficulties faced by 15,000 Australians
                                                                      who have Multiple Sclerosis were brought into public
Firstly, thank you to my “new” neuro Dr Suzanne H. Thank you
                                                                      focus during MS Awareness Week from June 4 to June 10.
for believing me and getting me treatment. Sorry I cried when
you confirmed my diagnosis. I was more happy that you                 Highlight of the week was a very successful MS Sailing
listened and believed me more than anything else. Everyone            Regatta was held on Sydney Harbour on June 7.
else thought I was mad.                                               About 70 people with MS sailed in eight yachts
Jennifer J my Immunotherapist; you are an angel from heaven. For      donated by Ausail. They also provided the services
someone as busy as you are (and you are ten people wrapped            of eight qualified skippers and the Royal Sydney Yacht
into one!), you have always been so patient and understanding         Squadron allowed the society to use its mooring
with me. Thank you for finding the time. Thank you.                   facilities both before and after the regatta and for
                                                                      a “post race” celebration barbecue and drink.
Dianne my old (sorry, not so old- we are only 37) friend from
school, it took me a few weeks to contact you when I was              The event received good local media coverage
diagnosed. I turned to you when the pain was unbearable and           as well as mentions on the RSYS web page and
you have always been there for me. I have complained too               in the Australian Yachting Federation newsletter.
much about my symptoms and even though you have your                  The week was mentioned on the high rating
own, you have always been there and offered cheery words of           afternoon television programs Wheel of Fortune
support and encouragement. Even throwing in the old joke.             (Channel 7) and Catch Phrase (Channel 9). MS Week
You have been there when even my own partner wasn’t. Men,             also scored a mention on “Burkes Backyard”.
what is it about them? We get crook and still have to carry on        “The Jim Conway Blues” was screened on SBS on
as if there is nothing wrong with us. Anyway, Dianne, thanks for      June 9 and received very favourable publicity.
being the best ever friend in the whole wide world.                   A number of major media “hits” were achieved with
Christine A, my “foot” lady. I come and see you every Thursday        new CEO Bill Northcote on the Howard Sattler
night for reflexology and you offer me so much more than a            program (2SM and syndicated). Other favourable
massage. Since I have met you, I have really started to take a        press was also generated.
good hard look at myself. Just through our little chats, I have       MS Week also saw the launch of the 2000 public awareness
myself realized (believe it or not) that there are a million other    campaign, which is scheduled to run for three months.
people worse off than me.
                                                                      The campaign devised by the Society’s advertising agency
I try to keep my pain to myself now and to tell you the truth, I      (Medicus Sydney) was tested on the Society’s expanded
get a giggle at listening to other people complaining that they had   public relations and advertising focus group and received
a late night or whatever and can’t stay awake. How their throat       unanimous support. Its theme is:
hurts. Oh if they only knew what we go through! Thank you.            “3 out of 4 people diagnosed with MS are under 35”.

  M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S                      5
    COUNTRY SERVICES NORTH                                           SYDNEY AIRPORT LINK
    Calendar of Events                                               RAIL SYSTEM
    Port Macquarie                                                    Barbara Wright who lives in Miller recently took
    Topic:     MS and Depression                                      advantage of Sydney Rail’s day of free transport
    Date:      Friday, 18 August 2000, 10am–12noon                    (May 31st) and assessed the wheelchair friendliness of the
    Venue:     Westport Bowling Club                                  above new rail link. She has some positive and negative
                                                                      points but all in all the positives outweigh the negatives.
    Topic:     Women’s Health Issues                                  • Touch screen ticket machines don’t give fares
    Date:      Tuesday, 22 August 2000, 10am–12noon                   • Number of carriages never given on notice board
    Venue:     Faulkner House                                           so it was difficult to be at last carriage to have
    Lismore                                                             better chance of getting a seat.
                                                                      • Time table does not identify which stations are
    Topic:     Immunotherapy
    Date:      Wednesday, 13 September, 10am–12noon                     disabled accessable.
    Venue:     Lismore Worker’s Club                                  • Directional signage in Ansett terminal could be
    Coffs Harbour                                                     • Public telephones well supplied but not at
    Topic:     MS and Depression                                        wheelchair height.
    Date:      Thursday, 24 August, 10am–12noon                       Positive
    Venue:     Community Village                                      • Rolling TV screens for information with extra audio
    I will also be holding a Morning Tea for people who have            announcements at times.
    a partner with MS. When MS has joined a relationship a            • Disabled access excellent with lifts at all station
    number of problems can arise and we will discuss how                platforms at terminal stations.
    to find ways to deal with them. So, if you have any               • Toilets for the disabled in terminal stations were
    questions or know any answers about how to cope                     excellent with washbasins, mirror, hand-drying
    better, or even if you would just like to sit in and listen,        machines etc. all placed at a lower level.
    then please come and join us.                                     • There has been some negative press about no space
    Date:      Thursday, 7 September, 10am–12noon                       in carriages for luggage. Forum Express (9890 9665)
    Venue:     Coffs Harbour Regional Office, 31 Bonville Street        provides baggage transfer system to and from Airport
                                                                        seven days a week.This would allow disabled fliers the
    The cost for all sessions will be up to $ 3.00
                                                                        option to come to the Airport by public transport
    depending on the cost of the venue and morning tea.
    For more information and bookings please call me                    without having to manhandle their luggage.
    on (02) 66512505.                                                 The cost of accessing the Airport terminals is $6.40 for a
                                                                      concession excursion ticket. This comprises the usual
                                          Konni Ketteritzsch
                                                                      $1.00 ticket plus $5.40 to allow the ticket holder to go
                                            Outreach Worker
                                                                      through the barriers at the domestic and/or international
                                                                      terminals on four occasions.
                                                                      Generally Barbara found the new system very adequate
                                                                      for the disabled traveller. She also was impressed by the
                                                                      whole décor and colour schemes.
         An Eastener who walked into a Western
        saloon was amazed to see a dog sitting at                     Thank you Barbara for your informative report.
          a table playing poker with three men.                       There is an excellent small brochure available from State
                                                                      Transit called “Access for All”
       “Can that dog really read cards?” he asked.
                                                                      For those that have internet access the website address
             “Yeah, but he ain’t much of a player,
                                                 ”                    is For information from a real
                                                                      person phone 131500.
            said one of the men.“Whenever he gets
                 a good hand he wags his tail.”

6                M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S
Letters to
the Editor                                                      someone contemplating a journey overseas and send
                                                                them on their way. I hope so, as a trip like that provides a
Dear Zanna,                                                     lifetime of memories.
I really liked your latest edition. The articles were great     So “yes” to “MS Life” – a welcome addition to MagScene
and MagScene has become very professional. I also had           with its different content.
very good feed back from my clients on it.                                                                  Helen Bording,
Bye for now.                                                                                                   Cootamundra
                                       Konni Ketteritzsch       Dear Zanna
                          Country North Outreach Worker         I would like to congratulate MagScene on the last issue,
Dear Zanna,                                                     everything pertained to me. Usually I just browse through
                                                                it but this time I read it from front to back. Having had MS
Whilst at our son Peter & his wife Lisa‘s place at Pomona
                                                                for 17 years I personally don’t believe in medicines that
which is 20 minutes inland from Noosa, we picked an
                                                                can cure me.
orange box full of Tangelos; a fruit which is a cross
between a Tangerine, a South American mandarin and a            I find my tenacious perseverance to put up with the pain,
Pomelo, a grapefruit.                                           fatigue, balance, speech slurring, swallowing and choking is
                                                                acceptable as I see a lot of people worse off than me.
 When we got back to Hurstville Grove, Bev decided to
make some marmalade jam. Twenty kilos of fruit were             As I live in the Bangor area the article by Trish Wyatt
cut into quarters then each quarter was sliced with a           inspired me to visit the Gym. I firmly believe that if I
food processor to produce a mixture of juice and                hadn’t swum nearly everyday since my diagnosis I would
Tangelos in a very large aluminium boiler. This was boiled      be in a wheelchair permanently. As it is, I just purchased a
for one hour to soften all the bulk then it was put aside       scooter for long walks. (ha ha)
to cool. When we added the amount of water the recipe           Now we have our own “Jooly’s Joint” with Garry
needed it was too much for one boiler so we got                 Anderson well done MagScene .
another boiler and proceeded to halve the mixture after                                        Graham Edwards, Illawong
firstly removing most of the liquid into another large          Dear Zanna
container. We had just about finished this messy task
when Beverley hit the handle on one boiler as she moved         I have just read your latest edition of MagScene , which I
her arm. The boiler and its 10 kilos of fruit fell to the       always eagerly await. Your new format is excellent and I
floor spewing the contents across the floor where it            feel the setout is easier to read. My husband fights me for
continued onwards throwing itself onto the gas stove.           it to read as soon as it arrives. He usually wins, as he is
Still not satisfied it went even further, onto the cupboard     faster than me.
above the stove, to deposit a mass of fruit and juice on        I was thinking that as a new feature it might be an idea to
the glass doors and the surrounding cupboard. Its anger         add a small section with recipe ideas. As I get a little less
had not abated, so onwards the slimy mess went, reaching        mobile I find keeping the weight under control is very
the range hood, the cupboard above it, then on to the           hard, and I thought with winter some recipes for
exhaust ducting. It then plastered the kitchen wall and         nourishing low fat soups or stews would be great. You do
finally all its energy was spent by a valiant dive upwards      a great job with your magazine for PwMS and our carers.
onto the ceiling. What a mess and all within two seconds.                                                        Kerry Egan
Three quarters of an hour later everything was clean and
shiny all the work being done whilst softly singing “always      Readers: Kerry’s idea of recipes exchange could be interesting.
look on the bright side of life”.                               What do you think?                                       Editor
                                    Bev and Brian Warton
Dear Zanna                                                       We ask for your brief comments on any topic you would like to
For me the article on Dysphagia was timely and most              share with other readers on this page.When sending in your
interesting, as was Supplement 16. We country PwMS               letters, please indicate if you would like your name withheld,
are somewhat isolated and articles such as these are             or would like to use a nom de plume. (e.g. J.F. Sydney)
most helpful,                                                    Our email address is:
Now we have “MS Life” also with informative articles that        or via snail-mail to:
help in our education of MS. The article on alternative                 Editor of MagScene,
medicine provided a good basis for discussion, as it was
                                                                        PO Box 1246 Chatswood 2057,
not pushing any particular view. I particularly enjoyed the
back packing story. Perhaps it will allay the fears of
                                                                 in ample time for the next issue.

  M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S                   7
    Have you ordered your                                                         Library &
    Free ID Card?
                                                                  L.I.S.          Information Services
    Many people with MS have requested that the Society             A number of people have rung the LIS after the “Jim
    provide an ID card. Following consultation with PwMS            Conway Blues” was shown on TV to see if we have a
    and Societies in other States, a card has been                  copy for loan.
    produced which has a photo on the front                         We only hold one copy of this video, which is available
    and on the back says…                                           for loan, but already has a waiting list of four people.
                                                                    If you are happy to wait (each loan is 3 weeks) contact
                                                                    the LIS and leave your name and address.You will be
                                                                    added to the wait list and the video will be mailed to
                                                                    you in due course.
                                                                    The video is a “warm”, amusing and candid story of
                                                                    Jim Conway’s life, incorporating how he, his family and
                                                                    friends coped with his diagnosis of MS.
                                                                    A list of resources held on the subject of sexuality
                                                                    and a list of new additions to the Library are
                                                                    included below.
                                                                    For any information requirements please contact us on
                                                                    9287 2929, 1800 042 138, fax 9287-2987 or email

    For security, the card will be numbered and laminated.          Leech, Christine.
    The address and phone number of the MS Society is               Sexuality and Multiple Sclerosis — Queensland:
    also included on the front.                                     MSS of Queensland, 1998 Bar Code 000962
    There is no cost other than postage and the provision           HQ 12 LEE 1998
    of a black and white or colour photo.
    If you would like to order a card, please forward               BLADDER
    a stamped, self-addressed envelope and a small
                                                                    Millard, Prof (presenter).
    (approx 3x3 cm) or an old Drivers Licence
                                                                    Early bladder and sexual dysfunction
    photograph of yourself to:
                                                                    1996 Bar Code 000422
       MS Society ID CARD
                                                                    WJ 141 MIL 1996 STAFF-TRAINING PACKAGE
       PO Box 1246
       CHATSWOOD NSW 2057                                           McDonald, E (interviewer) Perham, B (interviewer).
                                                                    Swinging from the chandelier : MS and sexuality
                                                                    — Victoria:
                                                                    MSS Victoria, 1997 Bar Code 000626
                                                                    HQ 12 SWI 1997 VIDEOCASSETTE
         Thinking is the hardest work there is, which is
                                                                    Urinary Incontinence
          probably the reason why so few engage in it.
                                                                    Stevens, Caroline (presenter). Impact of incontinence
                                          Henry Ford                on sexuality – Sydney: MSS NSW 1997 Barcode
           The way I see it, if you want the rainbow,
                                                                    WJ 146 STE 1997 STAFF
               you gotta put up with the rain.
                                                                                                             Cate Dawson
                                         Dolly Parton                                Manager, Library & Information Services

8              M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S
The Federal Government’s new Lifetime Health Cover                 capped at a maximum of 70% above the premium paid by
comes into effect on the 1st of July 2000. Lifetime Health         someone 30 or younger.
Cover recognises the length of time that a person has had
                                                                    Some people with MS and carers argue that
private hospital cover and rewards that loyalty by offering
                                                                   circumstances related to MS contribute to a reduced
lower premiums. People who join early in life will be
                                                                   capacity to afford private hospital cover now but they be
charged lower premiums throughout their life compared
                                                                   able to in say the next 12 months. For example a
to people who join later. For example, after 1 July 2000,
                                                                   working person with MS may currently be on sickness
someone joining at 30 years of age will pay lower
                                                                   benefits or a carer may have temporarily given up work
premiums throughout their years of membership than
                                                                   to look after a family member with MS. We have tried to
someone who first joins at 50.
                                                                   find out whether it may be possible for these people to
There has been quite a bit of confusion about what this all        plea under the hardship provision and we have not been
means and we have had a number of questions from both              able to get any clear answers. We suggest that people in
people with MS and family members.                                 these situations try and apply under the hardship
You do not have to take out private health insurance if you        provision by writing to the Department of Health and
do not want to. All Australians are entitled to free public        Aged Care before 1 July 2002.
hospital treatment and care under Medicare.                        For further information contact a private health fund, or
If you do decide to take out private hospital cover, a             ring the Health Information Line on 1800 676 296,
registered health fund is not able to refuse an application        Monday to Friday 8.30am – 7pm, or visit the Lifetime
for membership from you because of age or because you              Health Cover website at
have a chronic illness or disability. Nor can funds charge                                                   Robyn Faine
higher premiums on these grounds. However, funds will be                                       Manager of Outreach Services
required to charge a loading for late entry under the
Lifetime Health Cover scheme. This loading will be
charged if you are aged over 30 and you first take out
private hospital cover after 1 July 2000, unless you were
born on or before 1 July 1934. You can avoid paying the
                                                                                     FOR SALE
loading by taking out private hospital cover before 1 July
2000 or, if you are aged 30 or under on that day, before                     Fisher and Paykel Scooter
your 31st birthday.                                                                  No longer required.
The Government recognises that some previous                                        One year old (7/5/99)
long-term members of health funds may not have hospital
                                                                              Fits in car boot, no tools required
cover on 1 July 2000 because of circumstances outside
                                                                                   to disassemble/assemble.
their control. For example they may temporarily be
unable to afford to pay for private hospital cover. To help             Front and back shopping baskets with covers,
people in this situation, the Government has included a                  lambs wool seat cover, walking stick holder,
hardship provision. This provision says that for the first 2                       and two foot retainers.
years after the introduction of Lifetime Health Cover, the           $4,000 neg.
Minister for Health and Aged Care may decide that a
person is to be treated for the purpose of Lifetime Health           Phone: 9610 8424
Cover as if they had hospital cover on 1 July 2000.                  Fax: 9610 8426
However these people will only be able to claim benefits             Anna Ramsay
from their health fund from the time they took out private
hospital cover and not from 1 July 2000.
If your financial situation is such that you cannot afford to
take out private health insurance now, but may be able to
in the future, you will not be ‘locked out’ by the loading for
late entry under Lifetime Health Cover, because there is a
cap on the loading. The loading, at 2% for each year you
are over 30 when you first take out hospital cover, is

  M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S               9
     Since the last issue of MagScene all of the PwMS who                 Coded Reference          425 Female
     “posted” their details have been put in touch with a                 Age                      27
     webpal from NSW. More are listed below.                              Lives in                 Moree
     Coded Reference            417 Female                                Years with MS            4
     Age                        40                                        I am on Betaferon and am doing OK. I would like to meet/
     Lives in                   Central Coast                             talk to other MS people.
     Years with MS              5                                         Coded Reference               426 Female
     Married, 4 sons 1 Daughter. 2 still living at home. I enjoy          Age                           58
     knitting, making teddy bears, beadwork and most other                Lives in                      Sydney
     handcrafts. Gave up work 3 years ago as accounts clerk.              Years with MS                 5 symptoms much longer
     Now studying Counselling skills in hope of volunteering.             Lots of time at home so computer is one of main interests
     Coded Reference            418 Male                                  together with reading, cryptic crosswords and word games.
     Age                        59                                        Limited ability to walk but can still drive (thank God). Married,
     Lives in                   Narooma                                   no children. Symptoms are weakness, stiffness, hypersensitivity.
     Years with MS              10                                        Am on Betaferon since 1966, it has been a Godsend.
     When diagnosed I was working in senior management with a             Coded Reference              427 Male
     major bank (35 years). Lost job due to MS symptoms, mainly           Age                          49
     fatigue and depression. Have major problems with invisible           Lives in                     Sydney
     symptoms (friends, associates). Now have Haemochromatosis            Years with MS                15
     to complicate matters. Prospect of wheelchair depresses me.          Senior executive in partial retirement from hi-tech company.
     Coded Reference             419 Male                                 Still can get around reasonably well (stick). Hot weather big
     Age                         55                                       problem. Self inject Avonex and think it is working. Music (like
     Lives in                    South Coast                              the Back Sliders), reading, good friends and a loving wife and
     Years with MS               21                                       funny conversations keep me in good form, would like contact
     Married 34 yrs, 2 adult boys. Was plumber then Secondary             with other professional PwMS
     teacher for 20 yrs then I had to retirement. I do voluntary          Coded Reference              429 Male
     work, which takes, up most of my time. Like Computers, horse         Age                          46
     racing, any sport.                                                   Lives in                     Bowral
     Coded Reference              421 Male                                Years with MS                14
     Age                          38                                      Interests: music, education, gardening
     Lives in                     South West Slopes                       In addition to PwMS I have also received requests for
     Years with MS                5                                       NSW webpals from carers of PwMS as well as
     Married with 3 kids. Still work as many hours per week as I          Significant Others (SO) such as parents wanting to
     can. Am on Rebif after switching from Avonex. I am still doing       share experiences with others in like situations.
     OK with this MonSter but still have a rough time now and then        We will discuss this and consider adding these people
                                                                          to our target audience.
     Coded Reference               423 Female
     Age                           58                                     Remember if you wish to email any of the PwMS listed
     Lives in                      Fairfield                              please send an email to quoting the
     Years with MS                 2                                      coded reference number only. I will then send you their
                                                                          email address so that you can contact them directly.
     Grandmother of 10, enjoy life even if it is not as full as it used
     to be. Have leg that will not co-operate. Muscle spasms and          We do not list email addresses in MagScene to prevent
     pain, mostly at night. Interested in all kinds of craftwork and      them falling into the wrong hands e.g. crackpots, email
     word puzzles. Am told have wicked sense of humour, which             marketers etc.
     helps cope with ups and downs.                                                                    Good surfing and emailing,
                                                                                                       remember to let me have
     Coded Reference                424 Female                                                         your correct email address,
     Age                            32                                                                 particularly if you have changed
     Lives in                       Molong                                                             your Internet Service provider.
     Years with MS                  8
     I enjoy outside activities, gardening and livestock. I have been
     on Betaferon since 1996. I enjoy traveling, OR I used to. I                                                        Garry Anderson
     have my days now, and I would enjoy meeting/talking to some
     one in same position.

10                M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S
                                      Congratulations to those who found my Challenge Word DENDROPHAGOGYTOSIS
Mr Wisdom’s                           on the back page of last issue’s MagScene .
Brain Gain &                          Helen Bording, of Cootamundra, submitted a massive 1333 words. Congratulations Helen.
Challenge Word                        Christine Vest of Appin, a newcomer! followed with 1106, Lorraine Mahe, of Towradgi, was
                                      next with 824 words, and Kerrie Egan, of Mittagong, had 554 words.
                                      I trust you will put your head and shoulders to the wheel for this issue’s Challenge Word
                                      of FACIOSCAPULOHUMERAL.
                                      The usual rules apply....
                                      1: Your listed words must be made up of four or more letters.
                                      2: Use only letters from the Challenge Word
                                      3: No letter may be used more often than it appears in the Challenge Word
                                      4: No plurals, place names, or proper nouns will be accepted
                                      5: And remember, it’s a bigger challenge if you don’t use a dictionary.
                                                                                                                    Mr Wisdom

Doctors warn of                                                   Taxi users beware of fraud!
Winter soup menace AAP                                            People who use taxi travel dockets need to be aware of
                                                                  their vulnerability to driver misuse of taxi subsidy scheme
Settling down in front of the television with a hot
                                                                  travel dockets. Whilst the majority of taxi drivers are
bowl of soup might be a nice thought this winter
                                                                  honest and helpful to people with disabilities, unfortunately
but it could prove dangerous – particularly for
                                                                  there are a few that take the opportunity to rip off the
children, health professionals warned today. Flinders
                                                                  system. Below are some useful points to make sure that
Medical Centre clinical director of paediatrics David
                                                                  travel dockets are used in accordance with their
Lines said burns from hot soup and noodles
                                                                  conditions of use:
appeared to be a new element of an old problem –
children suffering scalds and burns during food                   • Don’t hand over a blank travel docket to a taxi driver.
preparation in the home.                                            If you cannot fill out the travel docket yourself, ask the
                                                                    driver to complete it in your presence
“Children are risking significant burns to the
                                                                  • Never hand over a full book of dockets – keep these at
abdomen and groin when they heat instant foods
                                                                    home and only carry with you the number of dockets
in the microwave and eat it on their lap in front
                                                                    required for the return journey/s on that day
of the TV,” Professor Lines said. So far this year,
                                                                  • Always ask the driver what the total metered fare is,
20 children aged from eight months to 16 have
                                                                    to ensure that the correct half payment of the metered
been treated at the centre for significant burns
                                                                    fare is entered on to the travel docket (maximum of
covering up to 15 per cent of their body. Of those,
                                                                    $25 subsidy per trip).
13 involved children being burned during food
preparation, with four young children scalded in the              The NSW Department of Transport has a Taxi Complaints
lap by hot soup or noodles. “While the numbers are                Hotline operating Monday to Friday between 8.30am and
relatively small, the pain a child may suffer when hot            4.30pm. Complaints regarding the use of travel dockets or
food spills on their lap is terrible, and it can so easily        about the quality of the taxi service can be made by phoning
be avoided,” Prof Lines said. He urged parents and                toll free 1800 648 478 in the first instance. Where
children to ensure hot soup and noodles were                      possible provide information about the taxi plate number,
eaten at a table, or to use a suitable tray when                  the taxi driver’s authority number and the taxi co-operative.
eating in front of the television and to avoid filling            If the taxi was hired through a radio booking, the
bowls to the brim.                                                Department of Transport may be able to identify the vehicle
                                                                  involved. Complaints are taken seriously, and a recent
Parents should also avoid allowing children to heat
                                                                  complaint made by an MS Society staff member on behalf of
their own instant food, he said. Paediatric unit
                                                                  a client, resulted in extensive investigations by the Dept. of
clinical nurse consultant Heidi Klau said when
                                                                  Transport revealing long standing fraud involving thousands
parents were asked how their children suffered
                                                                  of dollars by a particular driver. The person involved or
burns on their chest and abdomen, it came as no
                                                                  anyone who has reason to believe that fraud is occurring
surprise that they had spilled hot soup or noodles
                                                                  can make complaints anonymously.
on themselves. “It can so easily happen and it is very
distressing to both children and parents,” she said.                                                         Robyn Faine
                                                                                               Manager of Outreach Services

  M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S                   11
                          From the desk of                         Programs for People Newly
                          MS Busibody                              Diagnosed & Families
                          With only weeks to go,                   These activities are aimed at people diagnosed with MS
                          it’s Olympic countdown time              in the last couple of years or those who have had limited
                          and I’m starting to get                  access in the past to information helpful in adjusting to
                          mildly excited.                          the first few years of diagnosis.
     I can boast that I know a torch relay bearer,                                                                 Alex Hope
     Mitch Booth who is an Olympian from ’92 and ’96.              Newly Diagnosed Information Sessions
     I know his mum Katie is very proud. I’m looking
     further ahead myself with excitement to the                   Monday 30 August (evening) at Chatswood
     Paralympics in October. My good friends managed               Newly Diagnosed Information
     to get me a seat at the opening ceremony on                   Telephone Conference
     October 18th. My poet friend, in the last two verses
                                                                   Tuesday 5 September (7:00 – 8:00pm) for people
     of his poem, describes the no less exciting match
                                                                   in Sydney who are unable to make the face-to-face
     with wheel players.
           The focus of the players is no way less intent
                                                                   Immunotherapy Update Evenings
            Than their able bodied equals of that code
                                                                   Monday 21 August (6:00 – 8:00pm) at Kogarah
            Even when, in melées, one chair over-rode
                                                                   MS & Beyond – Destined For Wellness
         Another – then sidelined to replace an axle-bent
                                                                   Maximising Your Memory
            Passing, handling – as well, propel the chair
                                                                   Wendy Longley will help explain some of the mild
          Cheering! Edge of seat spectators everywhere             changes in memory, concentration and thinking patterns
       With full time siren blaring … a secret now revealed        that may occur as symptoms of MS and practical ways
                                                                   for remembering and organising your daily activities.
        Do we take for granted that with which we’re born?
                                                                   Date:         Tuesday 22 August
     What if fate decrees perhaps that we will face the dawn?      Time:         6:30 – 8:30pm
         Of a day from whence we’ll meet life’s challenges         Where:        The MS Society of NSW
                          two-wheeled                                            Level 11, 447 Kent Street, Sydney
                                                                   RSVP:         Alex Hope on TEL: 9646 0600 by 15 August
         Champions stand tall on attitude, young and old
                                                                   Investing in Your Financial Future
          Reaching for achievement silver, bronze or gold.
                                                                   This session aims to take away some of the mystery of
                                          Extract from
                                                                   financial planning by providing informative discussion on
                      A WHEELIE SPECTACULAR SECRET
                                                                   saving plans, investment considerations and additional
                                    by Francis G Byer
                                                                   Date:         Wednesday 11 October
     Let the games roll on.                                        Time:         6:30 – 8:30pm
                                                                   Where:        Northern Region MS Service

                                 Of all the things you wear, your expression is the most important.
                                        Occasional failure is the price of improvement.
                                           Consider how hard it is to change yourself
                          and you’ll understand what little chance you have of trying to change others.
                                       Do you avoid covering up the mistake?
               The wiser course is simply to inform everyone affected and correct the error promptly

12              M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S
                                                                 is what prompted me to spread the word. I have since
                                                                 inquired about other wheelie good bus trips and I would
                                                                 urge you to come to Sydney and enjoy them, the 888 is
                                                                 a good one.
                                                                 I would strongly advise wheelies to plan your journey
                                                                 using accessible stations. Advise staff prior to travel,
             Central Coast News                                  so that they can have the ramps ready. Make sure your
                                                                 wheelchair brakes are firmly ‘on’ when you are train or
 We wish to convey our deepest sympathies to
                                                                 bus traveling. Explore the Olympic Stadium. Check out
 Mavis Symonds at the sudden loss of her husband
                                                                 the new airport rail link.
 Ken on 1st June 2000. Around two hundred people,
 made up of family, friends, colleagues and                      The information line phone number is 131 500, or
 representatives of PwMS attended Ken’s funeral and              internet on Staff will help you
 people spoke fondly of their love for Ken and his               plan your journey. CityRail are publishing a booklet
 dedication to, and love for, his family. Mavis is, of course,   complete with map for customers with special needs,
 well known to all of us as the President of the Central         indicating stations with lifts, ramps, hearing loops,
 Coast branch of the MS Society and a tireless worker            continuous handrails, etc.
 on behalf of PwMS. Mavis being a person with MS                 Nancye Donaldson, Co-coordinator of the St Ives
 herself was recently re-elected at the AGM in June.             Friendship group has celebrated her 20th year with the
 John Smith was re-elected as Treasurer and Sue Payne,           group. Nancye opened her home for PwMS on the 14th
 a person with MS was elected as secretary. Both Rita            July 1980. She never knew who she had coming but all
 Thwaites and Jean Smith are vice presidents.                    were welcome.

         Thumbs up for CityRail                                  Over the years of her voluntary support she has taught
                                                                 many crafts, made many PwMS explore their world on
           and Sydney Buses                                      outings and opened a new vista to those who were
 Hear ye, hear ye, wheelies far and wide, North to               housebound. Thank you Nancye!
 Newcastle, South to Nowra, Bondi Junction to                    In June a dinner dance was held at Telarah bowling Club,
 the East and Lithgow to the West.                               Maitland to raise money for MS. A three course meal was
 After hearing and reading so much about the new                 served and music for the evening was provided by two
 wheelchair friendly CityRail stations, trains and Sydney        talented men,“Bop &Co”. About two hundred people had a
 buses, I decided to do a test run. My big day was set for       very enjoyable evening. Robyn Adams (Outreach worker,
 June 14th, a visit to the Art Gallery of NSW. With the          Hunter Region) with her husband Brian joined us at our table.
 help of the 131 500 information line, I planned an all          Many thanks to Warren Conroy – Manager of the Bowling
 day excursion with train changing, bus connections and          club and to all those involved in the selling and buying of
 return trip, all for an outlay of $2 concession for a one       tickets. Donated prizes (from local businesses) were raffled
 day train/bus/ferry ticket. Now this is exceptional value       on the night. There certainly was plenty of activity inside the
 for me because my journey starts at Wyong station at            Club despite the chilly weather outside.
 8:30am. Accompanied by a couple of confident friends,           The Maitland MS Support Group has just celebrated its
 we followed the advice of CityRail staff and gave them          8th anniversary, Fri 19/6/92 – Fri 16/6/00
 advance warning of “wheelchair on board.” The                         Ruth Richards Support Group Leader – Maitland
 courteous staff had a wheelchair ramp ready at the
                                                                 Janet King has commenced as an Outreach Region
 alighting station. I started to think, ‘why didn’t I try this
                                                                 Worker in the New England region:
 before’. Then I remembered that all the lifts and ramps
 are new. Finally, arriving at Town Hall Station then               112 Carthage St, Tamworth, 2340.
 browsing through the Queen Victoria Building, we                   Tel 6766 8243.
 exited at York Street.                                          Janet replaces Sue Falkenmire
 The next big test was for the wheelchair accessible             Dubbo Office is now closed
 bus. Not knowing what to expect I was a little                  Readers are invited to email contributions to Page 13 News
 apprehensive. When the ‘441 ART GALLERY’ bus                      to the Editor of MagScene at:
 pulled up on time and the wheelchair ramp slid out,                                  or via snail-mail to:
 I confidently wheeled on board. It was that easy!                              Editor of MagScene,
 The rest of the day was a breeze. An observation I made                    PO Box 1246 Chatswood 2057,
 was there were no other wheelies to be seen and that                          in ample time for the next issue.

M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S                     13
     Society Services during                                           Disabled Garbage Bin
     the Olympics                                                      I now have a garbage bin with a disabled sticker on the
                                                                       lid. The garbage man continually left the bin in the
     The Society has made some contingency plans to cope               middle of the driveway, which meant parking the car
     with the impact of the Olympics. All offices will remain          in the gutter, alighting clumsily from the now slanting
     open and the MS Information Line will operate as                  drivers side hoping the door stayed open until I am out
     normal. Some services such as rehabilitation                      completely, then moving the bin and struggling back into
     assessments and home visits conducted by rehabilitation           the car, thoroughly exhausted. A letter to the local
     and outreach staff may need to be postponed or                    council and a copy to the garbage contractor pointing
     rescheduled, particularly in areas affected by changes to         out the difficulty, which had been created, was followed
     traffic routes and in areas where there is likely to be           by consultations and the disabled bin was born. The
     heavy traffic. Staff will be reviewing client requests for        sticker warns the operator/driver that the bin is to be
     services during late August and early September and may           replaced where it previously stood. So far all is O.K.
     schedule extra appointments in where necessary, before                                                     Brian Warton
     the games commence. We will be using the telephone
     more as a means of providing consultation to clients
     during the Olympics. The MS Clinic and the MS Urology
     clinic will not operate during the Olympic period.
     The hydrotherapy pool will operate on reduced
     hours. Regular users should check out the day and
     times of availability.
                                                                       What products that I use will be
     We have suggested that support groups consider not
     meeting during the Olympic period due to expected                 GST free?
     increase in traffic and lack of availability of disabled taxis.   There are a number of medical supplies that are free of
     MS Society recreation group outings and some other                GST; continence is one of them. These include urine /
     recreation programs will not be conducted during the              faecal drainage / collection devices / waterproof covers
     Olympic period for the same reasons.                              or mattress protectors / absorbent pads for beds and
     If you are coming to the Lidcombe MS Centre between               chairs / disposable / reusable continence pads, pants
     now and the Olympics, you will have to pass through a             and nappies required for continence use (excluding
     security check at the entrance to the media village. You          nappies for babies, sanitary pads or tampons) enuresis
     will need to give your name and destination and will be           alarms / incontinence appliances / hospital / medical /
     issued with a visitors day pass which you will have to            continence deodorising products / waterproof
     hand back to security at the end of the day. Vehicles may         protection for beds and chairs / sterile plastic bags /
     also be subject to inspection for security purposes. It           electric bag emptier / enemas, suppositories and
     may be a good idea to allow some extra time to your               applicators / urinals and bedpans / penile clamps.
     journey to the centre to allow for any delays at the              Another area is mobility of people with physical
     security check point.                                             disabilities. Items free of GST include wheelchairs and
     Please contact MS Society staff at the MS office closest          accessories, motorised wheelchairs, scooters, tricycles,
     to you if you have any concerns or questions about                spinal carriages and other goods for the carriage of
     service arrangements.                                             people with disabilities / accessories associated with
                                                                       wheelchairs, motorised wheelchairs, scooters, tricycles,
                                                 Robyn Faine
                                                                       spinal carriages and other goods for the carriage of
                                   Manager of Outreach Services
                                                                       people with disabilities / battery chargers for
                                                                       wheelchairs, scooters, tricycles, spinal carriage and
                                                                       other goods for the carriage of people with disabilities
                                                                       & stair-aid apparatuses designed for carrying people with
                                                                       disabilities in wheelchairs up or down stairs.
                                                                                                        Information sourced from
        Most of us will never do great things,                                                          Australian Taxation Office
      but we can do small things in a great way.                                                          and Fennell Allen & Co.

14               M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S
There are 35 Support Groups and 43 contacts throughout country NSW.
We provide the contact list for your information. (Updated as at 27 June 2000). The objectives of these groups are as follows:-
•     To support each other through sharing of common experiences, problems and solutions.
•     To reduce alienation and increase members’ sense of personal power.
•     To be a local contact for people with multiple sclerosis and provide a means of entry into the MS Society.
•     To help enhance awareness of multiple sclerosis in the local community.
For further information about meeting places and times, please contact the name and number in your area from the list

    AREA                        CONTACT PHONE                        AREA                                CONTACT PHONE
    Albury                      Dot Buttery 6041 1831                Batemans Bay                        Kevin Reeves 4472 3310
    Bathurst                  Helen Holmes 6332 1753                 Bega                               Dianne Moxey 6493 8231
    Broken Hill ✦         Christopher Perry 08 8087 5005                                                   Judith Reid 6494 1790
    Central Coast Nth          Kevin Bazeley 4390 3132               Central Coast Sth                       Jan Lamb 4368 1617
                                Katie Booth 4389 1320                Coffs Harbour ✦                  Marilyn Nethery 6654 4032
    Dubbo ✦                       Alison Tosh 6885 3710                                                   Sue Keevers 6652 1606
    Goulburn               Rhonda Eggleston 4821 4450                Grafton                             Elaine Selkirk 6643 2378
    Griffith                Diane O’Connell 6954 6749                Illawarra North Subs                  Jill Gouvas 4268 1360
    Illawarra South Subs       Kathy McNair 4261 7980                Kempsey                            Max Wheatley 6562 7019
    Lismore ✦                  Judy Barnier 6621 3350                Lithgow                              Leanne May 6352 3783
                             Marion Sanders 6621 6153                                                   Barbara Dean 6352-3071
    MacLean                      Garry Johns 6645 4286               Maitland                           Ruth Richards 4933 4950
    Mudgee ✦                        Jane Bray 6372 2468              Newcastle/                              Jan Brine 4957 4854
    Orange                     Pam Richards 6365 8317                Lake Macquarie                  Dorothy McLellan 4959 2954
    Parkes                Shirley Domaracki 6862 1043                                                   Robyn Adams
    Port Macquarie ✦          Vicki Whitfield 6582 5767              Port Stephens                     Alice De Carle 4982 7991
    Queanbeyan                Lizanne Emery 6298 9233 S.W. Shoalhaven                                     Peter Bone 4421 2995
    Singleton                   Robyn Stuart 6571 1536                                                   Beth Sanson 4421 2310
                                 Eileen Auld 6573 1691               Tamworth                        Annette Solomon 6762 7551
    Tumut                      Helma Riddell 6946 2055               Tuncurry                              Allan Shaw 6555 8491
    Tweed Heads                 Greg Vickery 07 5523 3484            Wagga Wagga                          Sue Gabriel 6925 4245
                                   Julia Dale 07 6676 6158           Wauchope ✦                        Carol Charlton 6585 3501
                                     ✦ identifies Contact Person only, currently no group meeting.

    Country Services Manager – Edith Morisset - 9287 2929

There are many Support Groups within the suburbs of Sydney. Rather than list all of them, any person interested is
advised to contact the nearest MS Society Regional Manager as indicated hereunder. They will then be able to give
you the nearest Support Group for your area.
Northern Region             (Chatswood)           Shelagh Bott           02 9411 4522
Southern Region             (Kogarah)             Carolyn Ball           02 9588 6100
Western Region              (Lidcombe)            Robyn Faine            02 9646 0600

    M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S                  15
                                Did you find the blue, 8-page Survey on          Congratulations to the North Curl Curl
                                sexuality in this issue? As a person with MS     Primary School. I attended an entertaining couple
                                myself I ask you to complete the Survey to       of hours with the children talking about MS and
                                provide the Society with vital information.      how they could help. They raised $452.70 via a
                                Your answers are very important to the MS        “Mufti” day event –a gold coin day. Thank you.
                                Society, so have your say.
                                                                                 Di O’Connell of Coleambally phoned me
                                Judy McLean, President of the South              regarding her meeting up with Betty Cuthbert
                                Coast Council of PwMS has stood down             A.M., MBE at the recent 2000 Annual Conference of
                                after leading the Council for the past eight     MS Victoria. Australia’s Golden Girl, accompanied
                                years. I congratulate Judy and her executive     by her friend and helper Rhonda Gillam, spoke of
                                for setting a very high standard of speaking     her strong belief in God. It was refreshing to hear
                                out on behalf of PwMS, of closely working        Betty speak of how her Christian life has evolved
                                with the Branch and being a strong               over the years. Di was so excited about getting
                                advocate, locally. The new president is          Betty’s autograph for her daughter Lauren. I’ve
                                Peter Bone with vice president Kathy Taylor      asked Di to write us a more detailed account of
                                and secretary Beth Sanson.                       how she got Betty to give her an autograph.

                                Who attended Kogarah’s “Mix and                  Shoalhaven Branch of the MS Society held
                                Mingle” night in May? Both Maryann Dalton        their AGM on the 20th June and a new Executive
                                and I were there and hopefully we met up         for 2000/2001 was elected. They are:
                                with you. It was a stimulating evening for
                                                                                 President           Mrs Betty Henry
                                me; I caught up with some old PwMS
                                                                                 Vice President      Mr Phil Speer
                                friends and younger fresh faces who all
                                                                                 Secretary           Mrs Beth Sanson
                                offered to write articles on various subjects
                                                                                 Asst. Secretary     Mr Gordon Sanson
                                for MagScene . Some are featured in this
                                                                                 Treasurer           Mrs Marion Bone
                                issue with more to come.
     behind the

                                                                                     Deadline for September/October issue is
                                Garry Anderson was pleasantly surprised
                                                                                            19th SEPTEMBER
                                when he attended his Balgowlah Rotary
                                Club’s Changeover dinner on Saturday             Due to the inclusion of the Survey pages in this issue
                                24th June. He was presented with Rotary’s        we did not prepare a Supplement.
                                highest award, a Paul Harris Fellowship.
                                Garry has been a member of Rotary in
                                various clubs since 1977 and the award was
                                in recognition of his dedication to the
                                ideals of Rotary. CONGRATULATIONS!

                                                                                                              Zanna Barron Editor

                                MS INFORMATION LINE                              Freecall 1800 042 138
                                                        Mon–Fri 9.00am to 4.30pm

                  MagScene           ISSN 1323-4005                         Print Post Approved PP224987/00051

                  Publisher:         MS Society of NSW                     Editor:         Zanna Barron
                                     ACN 000 320 632                       Email:
                  Printed by:        JAMAR                                 Technical / Editorial Consultant:
                                                                                            Garry Anderson
                   People with MS NSW
                   P O Box 1246                                            Design:         Holy Cow! Design & Advertising
                   CHATSWOOD 2057                                          Email:
                   Phone:      (02) 9411 4522                              Proofreader:    Wal Simmonds

16                M A G S C E N E – I N T E R C O M M U N I C AT I O N F O R P E O P L E W I T H M S – N E W S O U T H W A L E S

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