TOOWOOMBA & DISTRICT MS SUPPORT GROUP

Going from strength to strength.

November 2011

 Newsletter

 

October 2011  September 2011  August 2011  July 2011

 

NEXT MS MEETING- November, Wednesday 16th, 10.30am at the MS Meeting Rooms on the right side of Steele Rudd Dr, off Baker St (opp the USQ) Please bring a plate to share and stay for lunch.

VOLUNTEERS NEEDED- Toowoomba Bunning’s Sausage Sizzle, raising funds for your support group to support you. Sunday, February 5th Phone Darryl 4636 0406

GUEST SPEAKER- MS QLD Volunteer Peter Coy talking about Skype. Peter is a volunteer with the MS Society and has been working with most of the clients who are now using Skype to assist them in getting connected. This includes assisting with the installation of Skype, providing guidelines on the use of Skype, providing webcams for those who do not have one, and general computer support.

Skype is a free (sort of) communications package that allows you to have voice or video chats with other people who are also using Skype and who have accepted you as a contact (or you have accepted them).

MS & Relationships with Aart Simons

In October, we welcomed our special guest and MS QLD clinical psychologist, Aart Simons to Toowoomba. Aart shared his wealth of knowledge on the impact living with MS has on our relationships.

Aart describes a relationship in the form of a pizza, there is the slice where you like things about a person, another slice is everything you dislike, another is the MS and so on. With partnerships in life, we have the honeymoon phase where we are getting to know each other. Then comes the control phase, a big learning curve! We have to accept that we are individuals coming from very different backgrounds.

Aart reminded us that we live in different “time zones”, we stress at different times, we want to face problems at different times. We accept or fear for our future at different times, we are human and relationships of all kinds can be very complicated. Together we need to support our family and friends and realise that it is okay to be different and react differently along the journey of life.

Stress, depression and anxiety can impact negatively on relationships by closing the lines of communication. The natural inclination when depressed is to withdraw from others, but this is a time when open and honest discussion is vital. We all need to find a way of dealing with stress in our own way before it escalates and creates arguments which only add more frustration and pressure on our relationships or as Aart calls it, “The Highway to Hell!”

MS has come along and thrown the biggest curve ball at our relationships, new and old and we need to take on the challenge and learn the tools to live with MS and not let it dictate our lives. It is your life and your choice to make that happen.

Thank you to Aart Simons and Janice Wheeler from MS QLD for joining us and being available for discussion. It was wonderful to see such a variety of people take advantage of this rare opportunity. Welcome to our group Mark and Sue who had their hands full upon leaving after winning the large fruit hamper raffle prize donated by Darryl and their collection of new information! Congrats also to Paul for winning the prize kindly donated by Peter and Dawn. We also thank the many companies that sent information and goodies to be included in our “Info Bag”, we will give out the remaining bags at future meetings until they are gone so don’t miss out!

PARLIAMENTARY QUESTION ON NOTICE, asked 11th October... Answer due 10th November.

To the Minister for Health, Mr. Wilson:- :Will the Minister advise if the heated indoor pool at Baillie Henderson Hospital will have the roof repaired and re-opened, not only for hospital patients, but also the 60 people with disabilities who use the facility five days a week and will the Minister provide an approximate date for any re-opening?

Do your family and friends a favour- ask them to take you christmas shopping, they will love the benefits of using a disabled car park at this time of the year!

Shopping Tips this Summer

·             See your GP to organise a parking permit.

·             Contact QLD Transport to apply for a taxi card. Grab a cab, the stress free way avoid parking in the holiday season!

·             See your service co-ordinator, Janice Wheeler about accessing a transport service that can get you to shops, services and appointments.

·             Don’t overheat or be alienated by sitting alone in the car at shopping centres. Plan your shopping trips with wheelchair hire so your energy will last longer and you and your family and friends can enjoy each other’s company in the cool of air-conditioned comfort.

·             Be dropped off by taxi and swap your walker/sticks for a wheelchair and enjoy the freedom and energy to have a good look around. Put items on layby and pick them up later when you are with someone to help or ask someone to collect them for you.

·             Don’t wear yourself out trying to try on clothes in a very tight and uncomfortable space. Buy the items after you are comfortable with their return policy, keep the receipt and try the clothes on later at home. If the store looks uncomfortable with this, maybe they would consider renovating one day to accommodate all shoppers including those with babies in prams?

·             Take a mobile phone with you if you are going out alone.

·             Keep your power bill down and keep cool by shopping at the hottest time of the day in summer.

·             Do a little research, collect shopping centre directories including disabled parking so you can plan where you need to go and how to get there the easiest way before you leave home.

·             Shop Online and have items delivered to your door, including Woolworths and Coles where items are placed on your kitchen bench-now that’s service!

·             Wear a bag with your valuables that goes over your head and across your chest, you won’t drop it and you won’t be easy prey for a bag snatcher.

·             Use as many home delivery services as you can or ask your pharmacy, butcher, local store etc if they will deliver for you.

Contact Darryl of the MS Support Group if you wish to borrow free of charge an electric wheelchair or a manual chair.

Toowoomba Shopping Centre Free Wheelchair Hire

Clifford Gardens Shopping Centre available at the information Centre outside Big W available free of charge with approved identification. Bookings are recommended and can be made by calling Customer Service on (07) 4634 1371.

Grand Central Information Centre, Level 2 outside the Australian Geographic Shop Free hire of motorised scooters and wheelchairs Phone Customer Service on 1800 638 855

Gardentown Shopping Centre has a number of wheel chairs available to customers for loan whilst shopping inside the Centre. These can be collected from DISCOUNT DRUG STORE on the ground level, 7 days a week. Phone: (07) 4639 2300

Toowoomba Plaza (K-Mart) Wheelchair Hire from Centre Management near rear entrance and toilets. One wheelchair only so would pay to book or keep this number handy! Phone (07) 4636 1896

JUDY JAMES NOMINATED FOR AUSTRALIAN FOR THE YEAR

Judy, member of MS Qld., Toowoomba MS Support Group, People with Disabilities Aus. and Women with Disabilities Aus. has been nominated for Australian of the Year by our long time MS Group member, Miles Blake. Judy thanks Miles and all her friends in all disability communities for their continued support for her efforts of the last 19 years.

Fampyra(fampridine)

Source.Medical News Today Article 16 May 2011

http://www.medicalnewstoday.com/releases/225428.php

The Australian Therapeutic Goods Administration (TGA) has granted approval for FAMPYRA™, (fampridine) 10 mg Modified Release (MR) tablet, for the symptomatic improvement of walking ability in adult patients with multiple sclerosis (MS) who have shown improvement after eight weeks of treatment. FAMPYRA demonstrated efficacy in people with all four major types of MS (relapsing remitting, secondary progressive, progressive relapsing and primary progressive). FAMPYRA can be used alone or with existing MS therapies, including immunomodulator drugs.

Biogen Idec (Nasdaq: BIIB) is presently taking steps to obtain Pharmaceutical Benefit Scheme (PBS) reimbursement approval for FAMPYRA, an outcome which will benefit the MS community in Australia. While Biogen Idec follows this reimbursement procedure, FAMPYRA is available to patients with a private prescription beginning October 2011 at a cost of $550/month.

FAMPYRA is an oral potassium channel blocker which is thought to work by stopping potassium leaving the nerve cells which have been damaged by MS. This enables signals to pass down the nerve more regularly, which may allow patients to walk better.

Consult your doctor about treatments or for more information call MS Connect on 1800 042 138.

RACQ SERVICES AVAILABLE

This free service is offered to wheelchair and mobility scooter users for members and non-members when they experience difficulty either at home or away. Service includes:

Battery testing Reinflating Tyres Replacement of tyre tubes PHONE 13 19 05

A warm thank you to Don & Rita for their kind donation of postage stamps to post the November postal newsletters, these donations are always most appreciated.

EMERGENCY ALERT

There is a new alert product available, the distinctive design of which is intended as an alert to health care professionals in emergency situations. In the form of a 2 gigabytes USB stick that attaches to your key chain, it has been developed to contain all of your medical history.

All personal details can be stored, who to call in an emergency, Medicare numbers, doctors details, medications being taken, medical history, the list is endless. You can even add your photo and scan medical letters and test results; what you would like to add is up to you – for more info phone 1300 369 142

November will be the last meeting and newsletter until February 2012. The MS Support Group Committee wishes you all a safe and wonderful Christmas and we hope it brings all you wish for and more-

Merry Christmas & A Happy New Year!

A BIG THANK YOU to Officeworks, Toowoomba for offering to cover the costs to print this newsletter for our postal members this month! 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.auTOOWOOMBA 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

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