MS Messenger - MS Queensland

The Toowoomba & District MS Support Group
MS Messenger
We wish you all a very Merry Christmas with lots of love & laughs!
November 2015
LAST 2015 SUPPORT GROUP MEETING
Wednesday, November 18, 10.30 sharp start. You are welcome to arrive at 10am
for a cuppa and chat before the meeting. Find us on the 2nd building on the right,
on USQ’s Steele Rudd Dr, opp Steele Rudd College off Baker St,
Please bring festive food to share and stay for lunch!
The next newsletter will be in early February and the next
meeting in the new year will kick off on Wednesday, Feb 17.
PARENTS WITH MS Coffee and chat mornings or become part of the contact list to
meet others in similar situations. For more info  Joanna on 4635 3281.
TOOWOOMBA MS SWIMATHON! NOV 21 6am-6pm Milne Bay Aquatic
Centre Come along, cheer on, show your appreciation to the local community and enjoy this social fundraising event! You can still register to
swim now! For more info  Clancy 3840 0887 or Simon 3840 0812.
MS QUEENSLAND SUPPORT GROUP FORUM, BRISBANE NOVEMBER 26, our support group will be represented by Joanna and Nicole this
year who will report back on return on the support group Facebook site,
in the February newsletter and February meeting.
2015 MS QUEENSLAND CONFERENCE & AGM, BRISBANE
NOVEMBER 27 from 9:30am at the Southbank Institute of Tafe.
Interact with MSQ staff and people with MS while listening to the latest
research and news relating to MS. Open to anyone to attend. To
RSVP please phone MS Queensland on 1800 177 591 or email
mssociety@msqld.org.au.
M
any thanks for all the wonderful entries for our newsletter name competition.
A total of 13 entries were received and I had the difficult task to select three
entries for the committee to vote on. The winner was Krystal Lea with her entry
“MS Messenger”. So, from now on our newsletter will be called “MS Messenger,
Toowoomba and District MS Support Group Newsletter”. Congratulations Krystal!
Upcoming will be a movie night planned for mid to end February 2016, as our
energies in November will focus on the Swimathon. The movie night will be one of
our major fundraisers to continue to support people living with MS in
our community, so keep your eyes open for further news on that. Look
after yourselves in this heat,
Angelika
TRC approves seven month,
subsidised cab trial
source. TRC October 22, 2015
A seven month trial of a subsidised cab service for eligible people this week was approved at Toowoomba Regional Council’s
(TRC) October Ordinary Meeting of Council. TRC Infrastructure Services Committee chair Cr Carol Taylor said the service was scheduled to start officially by
December this year.
Cr Taylor said the trial would see Black & White Cabs provide a Trial Council Cab
Service for eligible people in the Toowoomba, Oakey and Crows Nest service
areas. Black & White Cabs will sub-contract the Pittsworth area service to Pittsworth and District Taxi Services.
“This scheme will provide a pre-booked, door-to-door service from an eligible person’s home to a local shopping centre or to link with a designated
bus stop in regional areas to travel to other centres or facilities in the
Toowoomba region,” Cr Taylor said.
“Single trips will cost $2 per person and are available once a week. Eligible passengers will be picked up from a designated home address in a shared service.
“Each service area of the Council Cab catchment is assigned a designated day
each week with set drop-off locations and times.
“TransLink and Bus Queensland are supportive of the plan and welcome the service feeding in to the urban public transport network by co-ordinating with existing
bus services. This service complements existing public bus services and is
designed specifically to avoid duplicating these routes.
“Two Council advisory committees, the Regional Access and Disability Advisory
Committee and the Regional Active and Public Transport Advisory Committee,
have supported the development of the new scheme.”
Eligibility criteria includes:
People with a disability (with a Disability Support Pension Concession Card),
People aged 60 and over (with a Commonwealth Pensioner Concession Card,
Commonwealth Health Care Card, Commonwealth Seniors Health Card or a
Department of Veterans Affairs Gold, White or Orange Card), or
Carers and/or minors under the care of eligible people (with either a Carers Card
or Companion card).
Note: People who have a Seniors Card only, will not be eligible to use the service.
“Council has worked with the Department of Transport and Main Roads to help
eligible people who have difficulties accessing or affording services maintain a
level of independence and mobility,” Cr Taylor said.
Cr Taylor said the service would be reviewed in February and April next year, with
an option to extend the trial to June 2017.
A full list of service areas and designated stops will be released soon.
ANGLICARE TRANSPORT SERVICE
$4.50 per trip whether it’s a 5km or a 30km drive!
Door to door helpful friendly service Monday-Friday
Phone 4614 7000 for more info
MS Story Holiday Reading/Gift Ideas
for You and Yours!
Why not me? My journey with MS
by Anna Healey with Krista Bell
"It seems strange that being diagnosed with Multiple Sclerosis could be
a good thing, a positive thing, that Multiple Sclerosis could make someone a better person." Back in 1991 Anna Healey was told that MS was
devastating, that it would destroy her body and undermine her self
worth. The overwhelming response from people she met back then was
negative. She recalls "no-one ever discussed how empowering something like this could be ... my disease has taught me to accept my faults,
my strengths, my weaknesses, my talents - my self ... it has also taught
me to enjoy life in all its guises, the small pleasures as
well as the big ones".
Carry a Big Stick by Tim Ferguson
The master of comedy returns to deliver stories from a life on the
comedy warpath. From touring the world as one of the Doug Anthony
All Stars, to his life as a network celebrity, Tim speaks about his adventures with wicked wit and admirable honesty. Tim has battled Multiple
Sclerosis for much of his adult life. Speaking about it publicly for the
first time in 2010, he said, ‘It’s not for wimps.’ and ‘You can laugh, or
you can cry. Laughing takes fewer tissues.’ Tim warns audiences to ‘Be
mildly nervous. Be very mildly nervous.’ Armed with a big walking
stick, this master comedian is fierce, fearless and funny.
Other titles you may enjoy…
29 Gifts: How a Month of Giving Can Change Your Life by Cami Walker
Standing in the Sunshine by Cari Loder
Me and My Shadow, Learning to Live with Multiple Sclerosis by Carole Mackie
Coffee in my Cereal by Lorna Moorhead
Phone in the Fridge –The first 5 years by Lorna Moorhead
Golden Girl by Betty Cuthbert
Many more books are available if you search your library or online. Many of
these books are available in audio format too. Did you know that our support
group has a collection of books, videos and DVD’s that may interest you?
Contact us or ask to see the collection at the next support group meeting.
You can also contact the MS Australia library by phoning the infoline 1800
177 591 or emailing info@msqld.org.au for a list of available info/books.
$1 per bottle to MS Research with The Bench wines 03 5989 2838
or visit Dan Murphys Online https://www.danmurphys.com.au/
Would you find audio books easier to use?
Apply for membership at the Vision Australia Library
Audio devices, books and magazines
are available for free hire posted directly to your home
For more information contact 1300 654 656
Stop hugging the floor!
An excerpt from Devin’s experience and tips to deal
with falls. Read more personal stories at the
MultipleSclerosis.net blog site
While Multiple Sclerosis is often referred to as a snowflake
disease because patients experience such a wide variety of
symptoms and problems, there is one issue that is far too prevalent in many patients, falling. If you talk to many afflicted with this
disease, you will find some terrible stories of the various falls
they’ve had. Caused by a variety of symptoms, falling can be one of the most
dangerous and terrifying issues that we face. We can take steps to prevent it, but
for many of us, the risk of falling is one of the diseases most dangerous problems.
I think back to how strange it felt, how weird it was at the time. I was in my early
20s, I was extremely active, I played hockey, I trained for marathons, I was fit. I
had big strong legs, large thighs molded by years of skating for hockey. So how
could I suddenly have trouble standing?
While my symptoms were leg weakness during that first big relapse, I’ve had other
times where balance issues were the cause of falls. Once, I had a relapse where
my equilibrium was completely out of whack for close to a month. Others suffer
from symptoms that affect their gait, or numbness in their feet such that they can’t
tell where they are planting their foot, or spasticity (another issue of mine). A variety of symptoms, all leading to that common problem of not being able to stay on
our own two feet.
The emotional impact of falling so often can be devastating whether you were formerly a very active person or not. How do you even start to process not being able
to trust your own legs? I still have trouble with it. It’s been 16 years of this and I still
think, to an extent, I’m in denial about it. I still fall often, usually unexpectedly. I can
be standing in the kitchen talking to my wife and a second later be on the floor, not
even sure what happened. The level of frustration when this happens is through
the roof. It leads to such distrust in your own body. Climbing two steps might as
well be trying to climb to the top of the Empire State building because that’s what it
looks like to me. With the leg weakness, numbness, and pain, I sometimes look at
those with prosthetic legs with envy, wishing I could trade mine out for something
more trustworthy. And that’s it, they’d be limited but dependable. Having MS
means losing trust in your own body.
The dangers of falling are not only mental but physical and numerous. Broken
bones, concussions, even death can occur as a result of a bad fall. My penchant
for falling is often one of my doctor’s biggest concerns. He reminds me of it every
month at infusion time when he chides me for wearing flip flops and not shoes that
are more stable (I love flip flops because the numbness of my hands makes
tying shoelaces on regular shoes incredibly difficult). The physical and occupational therapists I’ve seen due to my MS have also expressed extreme ...
concern in falls. They’re all right too, when you think about the possible dangers
and end results of a bad fall, it can be extremely scary. Being more careful with
regards to falling is something I know I need to be more mindful of. All of us with
Multiple Sclerosis need to take falls seriously, myself included.
I know I need to do better, I need to use my cane more, wear better shoes, and
probably get a wheelchair. I need to do less “wall walking”, which is one of the biggest ways I compensate (and one few notice). I’m often
proud of how I can get away without using the appropriate aids, and I know many of you are too. But we can’t be
that way, we need to take the necessary steps to better
prevent falls.
There are a lot of steps we can take to improve our chances of staying on our feet.
Using a cane or other walking aid is a big one. Just being mindful about the layout
of your house is huge (is that coffee table in the middle of the room a danger?).
Wearing sensible shoes. Having the house properly lit. I’ll make an embarrassing
confession to prove the importance of all this and because I think it’s legitimately
helpful to other MSers. I keep a hand-held urinal next to my bed because I’ve had
so many bad falls trying to get to the bathroom in the middle of the night. Seems
embarrassing because I’m in my mid-30s but it’s insanely helpful. It beats the
concussive falls I’d been having while trying to navigate to the bathroom at night.
Another very important thing I’d recommend is to see a physical or occupational
therapist. They can help you work on tips to better prevent falls and also help with
strengthening some parts of your body to help in the task as well. I’ve even
learned the proper way to use my cane from one of these. Physical, occupational,
and speech therapy are all very important but often overlooked ways of treatment
that I urge all MSers to investigate. We can take medication for some symptoms,
but there is no cure for MS itself. It’s a very important strategy to learn how to live
with the issues you have and these therapists give you the tools to do that. I also
can’t stress enough the emotional benefits you gain by actively working with someone to battle your disease and not just passively take a medication.
The dangers of falling, both mental and physical, are numerous and greatly affect
the lives of those with Multiple Sclerosis. Many of us have had many experiences
with falling but we can all take steps to limit those experiences in the future.
Knowledge is power and the more we all discuss strategies for fighting falls, not
only with other MSers but with friends and family, the better we will all be at staying on our feet.
P
repare and Invest in products that reduce your body temperature to reduce heat stress and worsening of MS symptoms. A
cool vest or neck wrap, Keep ice blocks or ice cubes stocked
up in the freezer to lower the body core temperature down quickly.
Call Arctic Heat for more info on cooling vests on 07 55 221 552.
D
o you have a young person helping to care for you who could
benefit from the support and assistance of the Youth Commonwealth Carelink Centre? For more info phone 1800 059 059.
Well here we are at the end of our 2015
year and what a year it has been! New
treatments to slow MS down are rolling
out each year now and a recognised
treatment for more progressive forms of
MS is excitingly close! Changes are
evolving for the way support services
are being provided with the National Disability Insurance scheme being rolled
out in 2016. We welcomed many new
friends to our group this year and thank
everyone who shared their energy in so
many ways to help the MS community live better with MS! Sadly our support
group loses two members next month who have given so much of themselves as
well as their families to the MS cause, you will be missed! We wish you well as
our treasurer and faithful volunteer Paul and his wife
Anne move to Brisbane. Our past avid fundraiser and
Parents with MS Co-ordinator, MS Swimathon stars
Tanya and her family are also moving to Brisbane. Thank
you for the many laughs and friendship you have both
shared with us! Please join us at our last & festive
meeting on Wednesday, November 18
See you at the MS Swimathon for
our final 2015 party on Nov 27!
TOOWOOMBA MS SUPPORT GROUP CONTACTS
President
Glenn
4666 3812
email gmill600@hotmail.com
Vice President
Darryl
4636 0406
email dconnell57@dodo.com.au
Secretary
Trish
4693 7232
email gpschultz23@gmail.com
PwMS Contact
Trish
4693 7232
email gpschultz23@gmail.com
Newsletter
Joanna
4635 3281
email tjleane@bigpond.com
Parents with MS
Joanna
4635 3281
email tjleane@bigpond.com
SMAC Twmba Rep Jon
4635 5481
email carajon2@bigpond.com
Services, Management & Advisory Committee
“A conduit between MSQ management and people with MS, their families and carers.“
www.mssupport.org.au
FACEBOOK Nicole “MS Support Group Toowoomba”
MS QLD Regional Service Co-ordinator/ Immunotherapy RN, South-West QLD
Janice Wheeler Available Mon-Thurs
Email janice.wheeler@msqld.org.au
Phone 07 4638 9327 Mobile 0408 186 690
MS Queensland Infoline 1800 177 591