MS Messenger - MS Queensland

The Toowoomba & District MS Support Group
MS Messenger
April 2016
There will be no April support group meeting Instead,
join us for a social lunch at Club Glenvale
(The Hockey Club)
At 11.30am, Wednesday April 20
564 Boundary Rd, (Between Hursley & Taylor Sts)
Support Group News...
We thank Karen Quaile and our RSC Janice Wheeler from MSQ for
joining our March meeting to discuss the National Disability insurance Scheme (NDIS) in relation to the future of people with MS. More questions
were answered and the timing of Karen’s visit coincided with the signed QLD govt
agreement and dates to be rolled out for Queensland areas over the next 3 years
with Toowoomba to begin in January 2017 with the older end of the age spectrum to
save any of you moving somewhere else if you turn 65 soon! Check the rollout in
your area by phoning1800 800 110 or visiting the website http://www.ndis.gov.au
SADLY we farewelled our treasurer Don’s wife Rita and good friend of many
last month. Don and Rita have been a constant support for the support
group since they first contacted the group some twelve years ago after their
daughter was diagnosed with MS. Your gentle presence will be missed Rita.
SUNDAY, MARCH 13 was the St Pat’s Bingo Support Group raffle
where a fantastic $350 was raised for the Toowoomba community. A huge
thank you to Rose, Aileen, Joanna, Garry and Trish for your donations and
to Rose, her grand daughter Shakira and Aileen for their efforts on the day!
We have one more final opportunity to sell up big while spreading more awareness
at St Pats on May 22nd so any donations to fill hamper baskets would be great!
PARENTS WITH MS Coffee and chat mornings or become part of the
contact list to meet others in similar situations.  Joanna 4635 3281.
EXERCISE Do you want to join others with MS while doing a swimming or
gym exercise program to help your body cope better with and improve MS
symptoms? The support and social network is just a bonus! Phone the
support group for more info!
Enjoy instant MS related news, information and conversations by creating
a facebook account and joining our support group Facebook site piloted by
Nicole and Joanna. We now have 47 members!
Ask Nicole how  4635 0737 or email [email protected]
D
arling Downs Radiology Gives
Toowoomba Community Access to the
latest MRI Scanner Technology
Darling Downs Radiology has welcomed the latest scanner
technology and innovation as part of a multimillion dollar
investment in its new facility at 70 Neil Street, reinforcing the practice’s commitment to provide the highest quality, fully comprehensive diagnostic imaging for
the people of Toowoomba and Darling Downs regions.
Darling Downs Radiology’s newly acquired cutting-edge 1.5T and 3T MRI scanners delivered on the 11th and 14th of this month, are set to cement the practice
as a centre of excellence in medical imaging expertise for the region and complement its already high level and range of quality medical imaging services particularly in the detection of prostate cancer.
Darling Downs Radiology are the only independent Radiology provider to have
both 1.5T & 3T MRI systems installed at a single non hospital location in
Queensland. The new generation Magnetic Resonance Imaging scanners will
be an important improvement to local health services, providing very comprehensive and precise images and offering significant improvement predominantly
in the diagnosis of prostate cancer which is projected to be the most commonly
diagnosed cancer in Australia this year according to the estimations of Cancer
Australia.
Because prostate cancer is generally harder to detect on most medical imaging
methods such as X-rays, Computed Tomography (CT) scans, conventional
Magnetic Resonance Imaging (MRI) scans and Positron Emission Tomography
(PET) scans (APCRC-Q 2015), the new 3T MRI scanner will provide unprecedented levels of precision for the community thanks to their use in conjunction
with a mulitparametric approach. This allows a more targeted and efficient scanning process that also considerably decreases the number of false positives and
false negatives, as multiparametric MRIs have demonstrated to be a superior
method to deliver accurate prostate cancer diagnoses.
In the light of the estimated 17,250 new cases of prostate cancer to be diagnosed in 2015 (AIHW 2015) and projected 3,440 deaths resulting from this
cause (representing 13% of all male deaths from cancer in Australia according
to Cancer Australia 2015), and since an early and accurate diagnosis is a key
element of cancer treatment and survival, Darling Downs Radiology’s new advanced MRI scanners will be a vital asset to the Toowoomba and Darling Downs
regions’ communities who previously had to travel to Brisbane to have access to
these levels of health services. For the community, this new technology will
mean faster, less costly access to cutting-edge diagnosis and
therefore greater chances of survival to cancer.
These ultra-modern MRI scanners will also be accompanied by
the latest low dose CT and SPECT CT systems as part of Darling
Downs Radiology’s efforts to reduce waiting times and provide
world class services to a rising population.
Source. http://www.darlingdownsradiology.com.au/
Meet
NDIS Judy James,
Community Care organisations have been making changes and beginning to plan for the 2016 arrival in QLD. Make sure you underToowoomba
District
Sclerosis
Disability
Advocate
stand how this&will
affectMultiple
you or why
your services
might
be changing already.
Come to our March meeting to find out more or contact MS Queensland for more
Iinformation
am a person
on with MS and a trained counsellor winning and
receiving many nominations and awards for my services having
been a Disability Advocate for twenty years. I am a member of
four disability organisations across Australia and work with all
levels of government for the betterment of people with disabilities. I have access
to governmental files for those newly diagnosed who need both disability aids and
financial help. It is also helpful to liaise with those people over the phone who
wish to speak with a counsellor, especially one who also has MS and been
through the wringer. I also have the information for those who wish to access the
therapy pool at the Baillie Henderson Hospital.
All are welcome to contact me, Judy James, Advocate for Women With Disabilities Australia, People With Disabilities Aus. As well as the Toowoomba & District
MS Support Group. (See contact details on back page.)
After 20 years following Professor George Jelineks (also with MS) health program
Judy would like to share with you what path she has chosen to improve her MS
symptoms. Get a copy of his book Overcoming MS or visit the website
https://overcomingms.org/about-oms/about-prof-jelinek/
The OMS Recovery Program is based on the pillars of diet, exercise, stress
management, sunlight, vitamin D and omega-3 supplementation, and, when
needed, medication. The Overcoming Multiple Sclerosis Recovery Program has
one core mission: to help people with MS live longer, better and have healthier
lives. In Summary...
Diet and supplements
A plant-based wholefood diet, with oily fish, with no saturated fat, as far as is
practical. 20-40mls of flaxseed oil daily plus optional B group vitamins + B12 supplement if needed for nerve ending repair.
Vitamin D
Sunlight 15 minutes daily 3-5 times a week as close to all over as practical
Vitamin D3 supplement of at least 5000IU daily, adjusted to blood level
Aim to keep blood level of vitamin D high, that is between 150225nmol/L (may require up to 10,000IU daily)
Meditation
30 minutes daily
Exercise
20-30 minutes around five times a week preferably outdoors
Medication
In consultation with your doctor, if a wait and see approach is
not appropriate, take one of the disease-modifying drugs (many
may not need a drug, and drug selection should be carefully
weighed against side effects). Steroids for any acute relapse that is distressing.
One of the more potent drugs if the disease is rapidly progressive.
(This is personal advice, it is recommended to seek your own doctors advice and
remember we all respond differently to different courses of treatment.)
MAKE YOUR fundraiser A SUCCESS!
MS Queensland has lots of info, ideas and advice for your plans on
their website www.msqld.org.au or phone 1800 177 591 for a full
printed copy to be sent to you. MSQ Fundraising team Simon and
Clancy will happily answer any questions you have.
Remember May is MS World Month and the month to the Kiss
Goodbye to MS so start making plans to have some fun while
raising funds for people with MS and let us know so we can help
spread the word via our support networks, newsletter, email list
and facebook site etc!
These are just a few ideas…
Auction: clothing, household goods or even favours, such as
washing someone’s car Bowling night: Get friends together for a
bowling night, charge an entry fee to cover costs plus a little extra.
Make the night a theme to make it more fun. Casual Day: Through
your workplace or local school (gold coin donation). Other ideas
include ‘crazy tie day’ or ‘loud shirt day’, fancy dress theme days.
Darts Tournament: Organise a night playing darts. Fine Box: Do you
have work mates who constantly let expletives slip? A fine box is a
great way to raise money…..Have fun!
Mindfullness for MS
A new way to manage living with MS and dealing with stress, pain,
adjustment and emotions. MS Queensland is offering a mindfulness skills program
for people living with MS. Mindfulness is the art of ‘being present’ or in the moment. Learning Mindfulness techniques leads to greater control over what the
mind is doing and freeing yourself from racing thoughts, worry or anxiety, which
will in turn, helps you to focus and enjoy the present moment and task at hand.
Dates
Time
Saturdays May 14th (for 5 consecutive weeks)
10am – 12.30pm
Location
Meeting Room - Level 3
Toowoomba City Library
115 Herries Street, Toowoomba
(support group transport help available)
Facilitator
RSVP
Julian Lim – Clinical Psychologist
Magnolia House
No later than Monday May 2nd
Janice Wheeler PH: 4638 9327
E-mail: [email protected]
This Mindfulness program was developed as a result of a research project by the
University of Queensland which demonstrated great benefits for people with MS.
Making your symptoms visual
For those who last month attended the MS Queensland Taking
Control of MS info session, Clinical Psychologist Aart Simons
recommended we help others to better understand our MS symptoms by “making it visual” so I thought I would share my experiences and internet google search with you!
Nicole has introduced many of a good descriptive term
for these crazy annoying symptoms we have such as cockroaches crawling over her, brain fog are the symptoms often mentioned and is TOTALLY understood! I read somewhere some time ago and
adopted the description of feeling like I have a huge bag of
potatoes tied to each leg and when fatigue is at high levels (when
isn’t it?!), YES, taking one extra step DOES make a difference to
me! When the Ipswich support network came up to Toowoomba
awhile ago, one had a name badge she wore “I’m not drunk, I have
MS!”, I have seen this on shirts too, print your own shirt!
So I googled “Multiple Sclerosis symptoms, funny descriptions” and
my search took me to a chat site on an MS Society page overseas
and found this great one! "I am feeling like my trousers are made of brillo pads"
Yes. Yes, We so understand! And another…When my feet went numb, I described
it to my consultant as: "like having concrete socks on".
Read this post in on the website conversation….
I get spiky feet like walking on Hedgehogs......I have never walked on a hedgehog
(& don't intend to) so how on earth would I know???
I described my weakness in walking / heavy legs like walking up hill in
treacle........How many hills have you seen covered in treacle?
My muscle twitch’s as aliens under my skin! Maybe they have taken
my brain with them.......I feel completely bonkers when trying to describe this to my rather straight down the line neuro! I have also had
burning biting bugs in my socks and trousers. (someone then recommended to wear denim only!)
Oh yes then everything looked "flat" and had no proper
edges.......Neuro did think I was odd then and sent me for
eye test and guess what I had lost all 3D vision and depth
perception...so maybe not quite so mad then? Maybe
reserve judgment on that as I am not so sure myself!
Someone on this site recommended the typical list of MS symptoms needs an update with new descriptive names and another was looking forward to writing and
describing her next work sick day excuse to her boss! Who really understands the
meaning of the word Fatigue anyway, it’s not just a fancy word for tired so find a
better way to describe it so you finally get understood! Laughter is the world’s best
medicine so laugh at yourself sometimes so the world laughs with you and gets
what you mean at the same time!
MS Life Autumn 2016
“In this Autumn edition of MS Life we feature
Glenn, who built his home with his own
hands, a lot of sweat and truck loads of determination. Glenn’s passion was to see his family grow, and to continue calling the place he
built, his home. After living with MS for nearly 20 years and being
actively involved in the MS community, Glenn needed support in
building a ramp to more safely access his home, and MS Queensland was there to offer that support.”
The Rural Weekly, Central QLD News, The Burnett Times
“Steering MS Research” Dianne Priddle of Berwick Stud,
Oakey who has MS has recently reached a wide community audience again sharing her story and spreading awareness of MS as she put up another healthy steer for auction
this month with all funds going to MS Research. Well done
Dianne, what a wonderful ambassador you have become!
LOCAL WIN NEWS Nicole Crismale was discussing her bucket
list with remedial massage therapist Nikita (Nikita’s Remedial
Massage) who we met at the 2014 MS Swimathon when Nikita
donated her time and efforts to our cause and shared her story
about losing her mum to MS when Nikita was only a young child.
Well, to Nicole’s surprise, Nikita made Nicole’s wish to sky dive a
reality with the help of Sky Divers Ramblers, Toogoolawah and
what a media coverage they attracted! See more on our Facebook page “MS Support Group Toowoomba”
TOOWOOMBA MS SUPPORT GROUP CONTACTS
President
Glenn
4666 3812
email [email protected]
Vice President
Darryl
4636 0406
email [email protected]
Secretary
Trish
4693 7232
email [email protected]
PwMS Contact
Trish
4693 7232
email [email protected]
Newsletter
Joanna
4635 3281
email [email protected]
Parents with MS
Joanna
4635 3281
email [email protected]
Support, info & Advocacy Judy 46 343059
email [email protected]
Support, info & Advocacy Aileen 0488 776 160
email [email protected]
SMAC Twmba Carers Rep Jon 4635 5481
email [email protected]
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 [email protected]
Phone 07 4638 9327 Mobile 0408 186 690