Guest Speaker- Natalie Walsh, Disability Advocate, MS Society.  Natalie will be speaking at our first meeting for 2012 about the National Disability Insurance Scheme (NDIS).  We featured the insurance scheme in our August 2011 newsletter (also on our website). Please bring your questions and be punctual for an arrival no later than 10.15am.

CLUB GLENVALE- Saturday, February 4^th, 11.30am

Support Group member Nancy from Amby would like to catch up with fellow members for lunch at Club Glenvale (The Hockey Club), Toowoomba.   Air-conditioning, limited wheelchair parking, ramp and disabled toilet facilities available.  For more info, phone Club Glenvale on 07 4633 1229

RSVP Darryl by Feb 2nd

BUNNING’S SAUSAGE SIZZLE- Sunday, February 5^th Don’t forget to tell your family & friends to support the Toowoomba & District MS Support Group at the Bunning’s Sausage Sizzle!  The funds support members in your area.  A big thank you to Warwick, Barbara and their son for organising this fundraiser and the volunteers for helping on the day.

BUNNING’S TOOWOOMBA has a manual wheelchair for loan while shopping in their store.  The chair is located inside the front entrance close to disabled parking, ask the staff at the entry- Thank you Bunning’s!

CLIFFORD GARDEN’S SHOPPING CENTRE, TOOWOOMBA has two new mobility scooters located at the information desk for use while shopping in the centre. 

Phone Centre Management on (07) 4634 1371

BOOK LAUNCH- Heyward Robertson

“Riding the Rough Road” visit http://www.heywardrobertson.com

At the age of 21, Heyward was diagnosed with MS. Against all odds, Heyward has survived more than 40 years burdened by this debilitating disease.  Advised by medical authorities to commence limiting his life, he instead chose to live expansively.

Now at the age of 62 and a full quadriplegic, Heyward has taken a ‘never say never’ approach to life and entered fields which he had no knowledge, experience or expertise. Heyward worked in property development; horse breeding; cattle breeding; and went on to design, build and manage the famous Overlander Motel in Roma.  Heyward now resides in Toowoomba.

Ed.-In December we were all invited to join Heyward’s many family members and friends to celebrate in the launch of Heyward’s book, “Riding the Rough Road” at the Toowoomba Cobb & Co Museum.   We were also joined by Peter Coy (Skype volunteer) and Jennifer Saunders (MS Ambassador) from Brisbane.  The Hon. Mayor, Peter Taylor was also present.  There was an overwhelming warmth spread across the room as Heyward’s family welcomed those present as though we had joined them at the table for a celebratory family lunch.

We also met and listened to friend of the Robertson family, author, motivational speaker and quadriplegic Sam Bailey who with his wife Jenny (ex ABC radio presenter) had travelled from their family property in North Western NSW.  All that was missing was Heyward’s favourite drop, a nice cold Bundy Rum but I am sure he didn’t have too long to wait as the celebration was only just beginning!  The family shared stories that filled the room with laughter and some tears as we heard some of the family journey living with three siblings with MS.

I am eagerly awaiting the audio version (not yet avail.) of “Riding the Rough Road” and have enjoyed hearing others rave reviews of the book.  I have since listened to the audio version of Sam and Jenny’s book, “Head Over Heels” and highly recommend it, a remarkable story that forces you to re-evaluate what life has handed you and run with it no matter what.  It sounds so logical but we all need a good kick sometimes to realise we can help ourselves to live a better life!

If you missed the launch, but you’d love to read Heyward’s short, witty and funny stories, books are available from: Melissa on 07 4630 9242 or  orders@heywardrobertson.com, Dymock’s Bookstore, The Cobb and Co Museum and Mike Williams Country Clothing all in Toowoomba.

From the Presidents Chair…

Hello to everyone and welcome to the first newsletter as we start off a new year with the group. I hope you all had a good break over Christmas and are looking forward with high hopes for a good 2012.   As we are getting under way for the year I invite you all to have a say in the running of your group by getting in touch and letting me know just what you would like to happen with the group. Things like what we should focus on such as activities, or provide support in a particular way or anything you think might enhance the role the group has in providing support to you, the members. 

I would also encourage you to get involved in some way with the group, even if it is just by suggesting something that needs doing, because we can only function properly if we know what you, the members, expect from the group.  By contributing your input I can guarantee you will get far more out of it than the little bit of effort you have to put in. So I wish you all a safe and happy 2012 and I hope you stay well and happy all year, hoping to hear from lots of you in the near future. 

Darryl

LSVT LOUD written by Ian and Frances, Warwick 

There are a number of ways Speech Pathology can help people with MS.  Most people are probably familiar with the role speech pathologists play in helping people with swallowing concerns.  Most people may not be aware of a therapy called “LSVT Loud”. 

LSVT Loud was originally developed to help people with Parkinson’s Disease improve their communication skills.  The purpose of the therapy is to encourage people to speak louder automatically in their daily communication.  LSVT Loud has subsequently been found to be useful in helping improve both the voice and speech for people with a range of neurological conditions, including MS.

LSVT Loud benefits include increased loudness, improved vocal quality (less strain-strangled quality, less hoarseness or huskiness), and improved respiratory support for voicing. Benefits also include other aspects of speech production, including more precise diction, fluent or less interrupted speech leading to less frustration, fewer requests to repeat what has been said, improved self confidence and overall better quality of life for the person. An improved swallow has also been noted by some participants.

Here is a quote from Mike who has Parkinson’s and lives in Arizona USA.  He has participated in LSVT Loud therapy- Take it from me... nothing is more frustrating and stressful than having to repeat yourself time and time again. It can cause someone to withdraw and stop communicating altogether. But I have a lot to say. No one can speak for me. I want to be understood. I want to learn how to speak LOUD and clear. After LSVT LOUD, I had an appointment with my neurologist and she commented, "You sound better, did you do something?" My wife even commented, after my recent talk at a Parkinson's conference, that she was impressed by how loud, clear, and effortlessly I spoke during my presentation.”

LSVT Loud can only be conducted by a Speech Pathologist who has undertaken specific training and certification in the therapy. The Speech Pathology Department at your local public hospital is a good place to start if you would like to participate in LSVT Loud.  And I do mean participate, because as you will read below, a significant commitment is required by the person in the therapy (and probably their carer) in terms of effort, time, travel to appointments and homework.

The therapy involves an initial appointment to access the person’s suitability for the therapy and if accepted four (4) one hour appointments on consecutive days for four (4) weeks are required, ie. a total of sixteen one hour appointments over a month.  During the appointments the speech pathologist will lead the person through a series of voice exercises including phrase repetition, reading aloud and conversation.  Homework involves repeating most of these voice exercises and practicing the skills learnt in real life situations. 

The person’s progress is monitored with the help of computer software.  Some improvement is usually evident after the first week, with significant gains in communication skills appearing around the third week.

The benefits gained during the first month can be maintained for at least one or two years if the voice exercises are carried out at least daily on an ongoing basis.  This is definitely one of those situations where the gains are proportional to effort.

Our experience with LSVT Loud

Frances (who has MS) was being treated and monitored for swallowing concerns by Wendy Callcott, one of the speech pathologists at our local hospital in Warwick.  Wendy noticed Frances was having increasing difficulty in finding the “right word” during conversations and that gaps in Frances’ speech were becoming more frequent and longer as she searched for the word(s) she wanted.  As Frances’ partner and carer, I found that I was increasingly jumping in to help her find the word or to keep the conversation going.

The therapy began in early November 2010 and was completed in December.  We quickly adjusted to having to set aside over two to two and half hours a day into our daily routine, although there were some things that we had to let slide for that month.  Frances found the therapy to be challenging at first, but soon was in the swing of it. She didn’t miss any of her homework (although the neighbour’s dog joined in at the start) and is continuing to do her voice exercises each day.

It has been a bit over a month since the therapy was completed and the results have been better than we expected.  Frances was thrilled with her new restored ability to be understood in conversations – especially at the last MS Support group we attended.  There are no “It’s not important” or “What was that?” or “I can’t hear you” or similar around our home anymore.  I don’t feel I have to jump in to support Frances’ conversations and to top it off Frances is far more confident speaking on the phone.

So, if LSVT Loud sounds like it could benefit you or someone you care for, check it out, find a speech pathologist who can provide the therapy and start speaking LOUD.  I don’t know what your results will be, but if your results are anything like ours, you will not be disappointed.

Acknowledgements:

1.         Thanks to Wendy Callcott, Speech Pathologist, Warwick Hospital, Queensland who conducted the LSVT Loud therapy for Frances and for proof reading this article.

2.         Thanks to the whole Speech Pathology Section of the Allied Health Department, Warwick Hospital, Queensland for providing an environment that allows intensive therapies such as LSVT Loud to be provided for their patients.

The opinions expressed in the article above are that of the author.

Please consult your health professional for advice regarding treatment options for your own circumstances.

A special thank you to Mark & Sue for their kind donation of postage stamps to post our Toowoomba & District Support Group newsletter. Donations are always welcome.

Guide Dogs QUEENSLAND

TOOWOOMBA LOW VISION

MOBILITY EXPO 2012

An expo for people who are blind or vision impaired, their families and members of the community wanting help with low vision.

10am – 1pm Thursday, March 15^th 2012

Guide Dogs Queensland

270 Margaret Street, Toowoomba

• Guide Dog Experiential Walks • Vision Impairment Agencies • Orientation & Mobility

• Adaptive Technology • White Cane training • Support Group

• Electronic Travel Aids • Daily Living Equipment • Counselling • Resource Services

Talk to our instructors about applying for a Guide Dog.

Call our local office for details: 07 4632 6944 or

m.winterford@guidedogsqld.com.au

A BIG THANK YOU toOfficeworks, Toowoomba

for continuing 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

TOOWOOMBA MS SUPPORT GROUP CONTACTS  www.mssupport.org.au

 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

JANICE WHEELER, MS Qld. Service Co-ordinator Phone 07 4638 9327 janice.wheeler@msqld.org.au