MS Messenger

The Toowoomba & District MS Support Group

MS Messenger April 2016

Support Group News... We thank Karen Quaile and our RSC Janice Wheeler from MSQ for joining our March meeting to discuss the National Disability insur-ance 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]

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)

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 commit-ment 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 scan-ners delivered on the 11

th and 14

th of this month, are set to cement the practice

as a centre of excellence in medical imaging expertise for the region and com-plement its already high level and range of quality medical imaging services par-ticularly 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 compre-hensive 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 unprece-dented levels of precision for the community thanks to their use in conjunction with a mulitparametric approach. This allows a more targeted and efficient scan-ning 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 diag-nosed 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 ad-vanced 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/

NDIS Community Care organisations have been making changes and be-ginning to plan for the 2016 arrival in QLD. Make sure you under-

stand how this will affect you or why your services might be changing already. Come to our March meeting to find out more or contact MS Queensland for more information on

Meet Judy James, Toowoomba & District Multiple Sclerosis Disability Advocate

I am a person 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 Disabili-ties 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 sup-plement 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 150-225nmol/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 mo-ment. 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 Saturdays May 14

th (for 5 consecutive weeks)

Time 10am – 12.30pm Location Meeting Room - Level 3 Toowoomba City Library 115 Herries Street, Toowoomba (support group transport help available) Facilitator Julian Lim – Clinical Psychologist Magnolia House RSVP 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 symp-toms by “making it visual” so I thought I would share my experi-ences 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 crawl-ing over her, brain fog are the symptoms often mentioned and is TOTAL-LY 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 de-scribe this to my rather straight down the line neuro! I have also had burning biting bugs in my socks and trousers. (someone then recom-

mended 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 up-date 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!

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

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 deter-mination. Glenn’s passion was to see his fam-ily 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 Queens-land 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 communi-ty audience again sharing her story and spreading aware-ness 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 Face-book page “MS Support Group Toowoomba”

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