October 2011

Newsletter

September 2011

August 2011

July 2011

June 2011

Next Meeting:

October 19^th, Wednesday, 10am.

RSVP Darryl by Oct 9^th4636 0406

AART SIMONS is coming to Toowoomba to talk about MS and Relationships. Aart is a clinical psychologist with extensive experience in counseling people with MS, and also their families. Don’t miss this rare and valuable opportunity!

PLUS Win prizes by buying raffle tickets to support the MS group who supports you!

Receive a free information bag on arrival filled with helpful product and service information, complete with note pad and pen to take down info and swop details when you meet new people!

Stay on afterwards for a cuppa and lunch to meet with others living with MS and speak with Aart Simons. (Please bring a plate to share.)

Get your diary out now and RSVP Darryl asap to help us make it a great day for all!

November 16^th, Wednesday, 10.30 Guest Speaker Peter Coy is speaking on the benefits and setting up of Skype to keep in touch with other people living with MS.

The MS Support Group's 19^th birthday party lunch was held at the Glenvale Hockey Club, which was a resounding success with around forty people present. It was great to see friends from Ipswich and Warwick there, as well as four of our founding members from 1992 ... Greta, Rosalie, Carolyn and Judy. Carolyn was the first Secretary and Judy the first Treasurer and Newsletter Editor. Judy was presented with lovely gifts from the Toowoomba MS Group along with Certificates of Appreciation for herself and Malcolm for their work for the MS Group over the years. There was also a lovely gift from the Lockyer MS Group and a presentation from MS Qld of flowers for Judy, which Judy said would have brought a tear to her eye, except she was talking too much! A good day all round.

Judy wishes to send her big thanks for everything to all the MS committee, MS Qld. and all her good friends for their kind thoughts. There have been many phone calls after her resignation from the MS Committee, and expressions of thanks from so many people for the benefits that the Newsletter and Website have given to people over the years.

We also welcome Ian and Frances from Warwick, Janie, Joanne and Ian from Toowoomba to our support group community. Ian was convinced people had camped out overnight at Club Glenvale to get the disabled car space!

Don’t dwell on how your disability has restricted your lifestyle, focus on your abilities and create new ones!

The Physiotherapy & Exercise Info Evening held on Wednesday Sept 14^th at the USQ Works Gym was very informative thanks to MS QLD and staff from local services who made the time to share with people living with MS what fantastic resources our local community can provide to improve our bodies ability to live better with MS.

If you want to know more contact the MS Support Group committee, Janice Wheeler or look up Toowoomba services on the MS QLD website.

Keep your cool in the kitchen…If you're sensitive to heat, keep a fan in the kitchen to keep cool. If baking or cooking something hot try to do it early in the day. Use the microwave—it makes meal prep faster and will not aggravate your heat sensitivity. Be careful washing dishes with hot water, use the dishwasher or delegate a washer. Avoid hot drinks and meals midday.

Thank you so much to my parents Kevin & Diane Moore

for their kind donation of stamps & stationery for the October newsletter! – Joanna

INDUSTRY AND PATIENTS REPRESENTATIVES DISCUSS TYSABRI & PML (excerpt from MSIF.) –from Judy

Industry and patients representatives discuss PML. The European Medicines Agency, in close cooperation with the United States Food and Drug Administration, held a two-day workshop in London in July on drug-related progressive multifocal leukoencepalopathy (PML). The purpose of the meeting was to bring together experts and stakeholders to identify research questions that will address knowledge gaps in order to reduce the burden of the disease.

PML is a rare and usually fatal disease that occurs almost exclusively in people receiving certain kinds of drug treatment, including natalizumab (Tysabri) for MS.

Some of the medicines associated with PML bring major benefits to large numbers of patients. Therefore effective ways to manage the risk of PML, through identification of patients at risk as well as early diagnosis and treatment of PML, are of major public-health importance. Medicines regulators in Europe and the US are trying to influence the research agenda to broaden the knowledge base for medicines regulation.

Some 170 experts and stakeholders discussed a common way forward for research in drug-related PML. Christoph Thalheim, Secretary General of the European MS Platform was a co-moderator and represented the patients’ view in an opening speech and closing remarks. In a speech prepared in consultation with people with MS and caregivers, Christoph described the importance of patients’ input to ongoing health care discussions and decisions and spoke of the difficulty in striking the right balance of benefits versus risks when deciding for or against a therapy which is highly effective but carries the risk of causing severe disability or even death.

The immediate follow-up to the workshop will include finalising a research agenda on PML and its dissemination to funding bodies and the research community, as well as fostering further partnerships and research collaboration. For more information and presentations of the workshop, please consult: www.ema.europa.eu

Whatsup In Disability Magazine

Whatsup In Disability is a magazine produced by people with disabilities for people with disabilities, carers and professional people in Toowoomba and Southern Queensland, Australia.
Disability Media Association Inc( Australia) is a non profit, volunteer organisation.
Whatsup In Disability contains information on local disability services, local and national news stories, diary dates, conferences, course’s, a reader’s forum, local events, and much more. Also every 6 months we publish as a supplement to the main copy, a Regional Services Directory which contains a complete up to date list of all local organisations offering services to people with a disability, carers and professionals.

Subscription is $27 per year, for which you will receive the latest Whatsup In Disability magazine, posted to you each two months. Phone (07) 46 326678 or Email admin@whatsupindisability.org.au

Youngcare Apartments Gold Coast source.www.youngcare.com.au

The Youngcare Apartments Gold Coast will be the second Youngcare Apartments in Australia, offering another desperately needed option in housing for young people requiring full-time care and assistance.

The Apartments will set new and innovative standards in residential care for young people, applying the learnings from the Youngcare Apartments Brisbane, including feedback from all the residents and staff.
They will provide a positive environment that encourages family and friends to visit regularly, with a guest apartment for family and friends to stay overnight. Facilitating ongoing connections within the community will also be of paramount importance.

Wesley Mission Brisbane has again partnered with Youngcare to deliver care that is person-centred, catering closely to the medical, emotional and social needs of a young person living with disability.
Most importantly, the Apartments will give seven young people the opportunity to live the young lives they deserve, regardless of their care needs.

The Novel Challenge

The Novel Challenge is the MS Readathon for adults! It takes place during the months of July, August, September, and October. More information is at www.thenovelchallenge.org.au

Our biggest challenge at the moment is finding ways to promote the program, and encourage people to sign up. If anyone has any ideas I would love to hear them! Perhaps you are in a book club, or know someone who owns a bookstore? Recently we welcomed a new sponsor Berkelouw Books (http://berkelouw.com.au/) on board as the ‘official bookseller for the MS Australia Novel Challenge’. Berkelouw is offering Novel Challenge participants 10% off all the books on our recommended reading lists (http://thenovelchallenge.org.au/Startchallenge/Selectabook/tabid/2954/Default.aspx) at their online bookstore. Hopefully this will serve as an additional incentive for potential participants to sign up.

Tamara Smith, Special Projects Manager, MS Australia - QLD

T 07 3840 0812 E tamara.smith@msqld.org.au

www.msreadathon.org.au

Hello friends, I have been to the meeting this morning about the use of the Baillie Henderson Therapy pool - while Qld. Health fiddles round with the roof of the main pool. It is heated to 36C which is far too hot for people with MS.
    Thus, owing to input from some of our members, as well as from other people with disabilities in our community, I am preparing drafts of letters regarding the future use of the big Baillie pool, to MS Qld. as they brought pressure on the Health Dept. last time people with disabilities looked like being stopped from using the renovated pool... (Trevor will still be there until end of November to help the new CEO into the business)... the Premier, Qld. Health Minister Hon. Geoff Wilson, Opposition Health Minister McArdle, and luckily I have access to all our Parliamentarian's emails and will CC the lot of them - nothing like a good stoush from the voters to keep them on their toes!!
    My brief is for the future good of all people with disabilities in our community, as well as our MS members. If it costs around $600 a day now to keep one person with disabilities in hospital, it doesn't take much accounting to add up the cost of around 60 of our pool users who are trying to stay out of hospital. Last stoush we had about the pool, the Premier unequivocably stated that Qld. Health "wanted us back in the pool, not in the hospitals" RIGHT! So FIX the roof!

                        There's life in the old girl yet! cheers from Judy

Aquatherapy Classes are available at the Grammar School Pool

Phone 4613 1488 Speak to Janice Wheeler or your GP about the EPC bulk billing scheme.

DRIVING WITH MS IN QUEENSLAND

Are you aware that since 1 March, 2006 drivers are required to report medical conditions, including Multiple Sclerosis, to the Department of Transport and Main Roads. (Drivers who fail to report such a condition as soon as it develops may receive a maximum A$6,000 penalty or be disqualified from driving for a certain period.)

All general enquires should be directed to

austroads@austroads.com.au or phone (02) 9264 7088 begin_of_the_skype_highlighting

ABIG THANK YOU to Officeworks, Toowoomba for offering to cover the costs to print this newsletter for our postal members during the next three months! This is a huge saving to the MS Support Group. Please support Officeworks Toowoomba on Hume Street, Toowoomba Phone 1300 633 423 or visit officeworks.com.au

TOOWOOMBA MS SUPPORT GROUP CONTACTS

President Darryl Ph 4636 0406 email: d.connell57@optusnet.com.au
V-President 1 Paul Ph 4638 0878 email: pamcdon1@bigpond.com

V-President 2 Shelley Ph 4687 7273 email: shelleyann2010@hotmail.com
Secretary Trish Ph 4693 7232 email: trishgarry@harboursat.com.au

Treasurer Steve Ph 4634 3540 email: sdrayward@westnet.com.au
Newsletter Joanna Ph 4630 6861 email: tjleane@bigpond.com

Also a contact for Parents with MS and Youngcare

www.mssupport.org.au

JANICE WHEELER, MS Qld. Service Co-ordinator Phone 4638 9327 janice.wheeler@msqld.org.au