NEWS FROM THE STATE MANAGER’S DESK

MND Awareness Week (4-10 May) was launched on Monday May 5 at the Niche to a large crowd with the theme of “Living Better for Longer.” Thanks to everyone who attended and gave their support for our ongoing mission to better cater for the needs of people living with MND (PLWMND). The support of the wider health and allied health communities and the public is growing and PLWMND are now able to access extra services through new initiatives like the Neurodegenerative Conditions Coordinated Care Program (NCCCP) and a larger equipment pool thanks to the Disability Services Commission and the NCCCP.

The media campaign across Australia has focussed on highlighting to governments and the community the types of care and support people living with MND and their families need - at, during and after diagnosis, to help them live as well as possible. Thank you to those members who have agreed to support this campaign in the first week of May by writing to local members of Parliament, their newspapers and agreeing to tell their stories to the media.

The best messages are always from a personal perspective so we are grateful to those who found the time to assist to raise awareness of MND in W.A. Thank you also to the many people conducting MND related events around this time. Please send us your photos and stories so we can publish some of them.

Thank you also to those who assisted in the MND DNA Data Bank research by donating blood to the bank on Tuesday. The ongoing research into likely causes for MND is vital if a cure is to be found.

A reminder to those wishing to attend the National MND Conference at the Moonee Valley Race Club in Melbourne on June 24 that registrations are filling quickly. The theme of this year’s conference is “Living Better for Longer – Pathways for the Future.” For more information contact MND Victoria by email: info@mnd.asn.au or phone (03) 9830 2122 or via the web at: www.mnd.asn.au.

The keynote speakers are Dr. David Oliver – Consultant physician in palliative medicine, Wisdom Hospice, Rochester, UK and Lisa Morgan – wife of Richard Morgan, Vic. The registration fee is $110 and an optional tour of Calvary Health Care Bethlehem for conference participants will take place the next day at a cost of $66.

A special thank you to the staff and students of Whitford’s Catholic Primary School in Craigie for inviting me and Lois to their terrific Cornflower Blue Day conducted on April 11. The entire school community wore blue for the day and raised awareness and some valuable funds for PLWMND in memory of a past teacher who succumbed to MND. I was very impressed with the assembly items on MND and wish everyone at the school a successful 2008.

Welcome to our new staff members at MNDAWA following Maree’s resignation to move to Melbourne to be near her daughter. Soraya Kumail and Tegan Gilchrist have joined us and later this week Rachel Dixon will also commence as part of our admin team. Soraya and Rachel will job share the full time position and Tegan will work two days per week. Please make them welcome next time you call or drop in to the office.

Look after yourselves and those nearest to you.

APRIL GET TOGETHER

On Saturday April 19th we had our Get to-gether at the Niche; it was a nice afternoon with 12-14 people with us.
They all chatted around the table very happily, with Berend telling some really funny jokes; it amazes me the people with MND are so positive and keep us laughing and also very positive as to what they are going to do next, like trips & outings etc.,

If you would like to join us at one of these functions, just check your Newsletter on the back page where For Your Diary is, you are most welcome.

Most times it is a cuppa and cakes; now and then we will have wine and pickies.

Lois.

Carers’ Break April 2008

I recently accompanied a group of our family carers (eight full time participants plus one “part timer”) on a two day break at the Novotel Vines Resort in the Swan Valley. This break was jointly funded by Carers’ WA and the MNDAWA. The carers had a terrific time – and from my point of view, after much time spent applying for funding and organising the whole project – it was most worthwhile. I’d also like to thank my fellow Care Adviser Diana for accompanying me on the first afternoon of this break and assisting carers to settle in.

So, you may ask, just what is a “carers’ break” and just how does it benefit family carers and consequently, the person they care for? Although they are designed primarily to give the main carer in the family much needed time out, rest and recreation, they are actually much more than this. There is an extremely valuable amount of information exchange which occurs between carers on these breaks plus mutual support and validation. Carers return home not only refreshed but more informed about their caring role and possible future challenges and support services.  Naturally this is also of great assistance to the person with MND – their “care recipient”.

Tho illustrate just how valuable these breaks can be, I am going to quote the words of a carer who wrote a beautiful letter of thanks after our April break.

Debra wrote – “(when invited) I thought the last thing I needed was to sit around with people I didn’t know in the same situation to talk about it. I actually thought it would be depressing. The other thing was I didn’t feel worthy of such special treatment”. She goes on to add – “well, I could not have been more wrong about everything I thought. Within hours of meeting the group of 7 ladies and 1 gentleman, I not only felt at ease but learnt so many valuable things I could take away and put straight into practise” Further on Deb writes “there was nothing at all depressing about the couple of days. In fact, it was inspiring to meet such strong, caring individuals. They gave me new strength and determination to stay on top of things”.

So as you can hopefully see, our carers’ breaks are very valuable indeed. If you are invited to join one in the future, do really think about coming along.
(Photos from the break are shown).

Finally I’d like to thank the management of the Vines Resort for giving us such a generous discount once again – and also to thank the massage ladies from Bees Knees Aromatherapy, Ace Mini buses and Edgecombe Brothers café for their kind discounts as well.

Margaret Roeterdink

An extraordinarily personal account of living with MND, Legless InThe Garden, by Zana Abdul Rahman offers an insight into the experiences of someone negotiating illness and progressing disabilities. A candid and insightful text that has much to offer its readership, it’s firstly a valuable tool for Health Care Professionals,  MND sufferers,  and the bureaucrats who enforce legislation without ever conceiving their impacts. Legless InThe Garden is also a moving and often times humorous re-telling of an individual surviving a terminal illness against a barrage of medical negativity and at the same time fighting for her independence amidst a chorus of opposition. The author’s experiences set a good example for anyone who is navigating a serious illness and offers them that rare glimmer of hope. In her text Abdul Rahman also talks about her garden as the place that provides her with hope. Nesting birds, vibrant colours in flowers and foliage and things that grow all echo the hope intrinsic to the heart of this text. Legless In The Garden reassures those who might be drowned by pessimism and its readership in general: there is hope! Never give up!

Order your copies now for MND Awareness Week at http://www.lulu.com/content/1646698.

For further information email Zana at zana123@tpg.com.au

The staff and students at Whitfords Catholic Primary School.
The entire school dressed in blue, raised awareness on
Cornflower Blue Day on April the 11th.

Patients Rights

The international Alliance of ALS/MND Associations supports the following as fundamental rights for its members.

1. Equitable access to reasonable and acceptable standards of healthcare.
2. Access to information which will enable the individual ALS/MND patient to play an active role in personal healthcare.
3. Choice with respect to: 1) health workers who are providing treatment or advice, 2) the place where care takes place and, 3) the type of treatment that is provided. This includes the right to accept, refuse, or discontinue treatment or intervention within the legal framework of one’s own country.
4. The individual ability to participate in the healthcare system, through consumer Representation, in planning and evaluating the system of health services, the types and quality of services, and the conditions under which they are delivered.
5. Preservation of personal dignity and access to human care, meaning that every patient, wether well or ill, has the right to be treated with care, consideration, and respect, without discrimination.

Assurance of confidentiality, wherein privacy is secured until the patient authorizes its release or unless there are compelling medical or legal reasons to divulge the information.

»» Top of Page ««

CARE ADVISERS’ REPORT

Hello to all of you once again. I have lots of things to talk to you about this month! Firstly a reminder that the Fluvax is definitely recommended for people with MND and that, as it’s now May, this should not be delayed. Secondly we have one vacancy left in our free manual handling training course at the Independent Living Centre (May 22nd and 28th from 10.00 – 12.00). Please let us know as soon as possible if you’d like to take up this offer. Also if you’ve previously indicated that you’d like to participate in this training but can no longer attend, please do remember to let us know so that we can then offer that place to another carer.

Many of you by will have received letters and/ or phone calls about the new Neurodegenerative Conditions Co-ordinated Care Program (NCCCP) which is funded by the Disability Services Commission (DSC). This program aims to provide a service to assist people remain in their own homes, and consists of a mixture of personal care help (showering/ dressing etc), social support, in home respite (so carers can get a break) and home help (eg housework). Each person is assessed individually and a flexible care plan is tailored to their needs. I would recommend that families contacted say “yes” to this offer as a program this flexible, and with the potential to increase the hours of support as needed,  is rare indeed.

And now for a very nice invitation! This is extended to 35 of our couples living with MND to attend a lunch funded through our wonderful Eleanor Mounsher fund for MND Global Day on Saturday 21st June from 12.oo – 3.30pm at the Carilley Winery, Hyem Rd Herne Hill. This will consist of a two course meal, coffee and wine. This venue has good accessibility and disabled facilities. Wheelchair taxi transport costs can also be reimbursed from this fund (hopefully you will be using your taxi discount voucher to reduce the cost to us). Please contact us on 9346 7355 if you’d like to attend. It’ll be a case of “first in best dressed” with this invitation!

Our next two carers’ support meeting will be here at the Niche at 11.30am as usual. On May 26th we are hoping to have a representative from the ILC Commonwealth Care Respite Centre speak about the support the Centre can offer to family carers. The next one being on June 23rd, and in July, we hope to have a subsidized café lunch for our carers. All carers are very much encouraged to attend these most helpful meetings which include a free light lunch.

Our equipment library is well stocked at the moment, especially with lift chairs, so don’t forget to avail yourself of it.

Finally our recent carers’ break at the Vines Resort was most successful. Please see the separate report on this event. In mid May our second ever (funded) couples break for four of our MND couples will be taking place at the Mandurah Seashells Resort. It should be as wonderful as our one last year but more about it next issue!

Best regards,

Margaret Roeterdink (on behalf of the Care Advisory team).

CARPET BAGGERS GOLF DAY

WHAT A DAY !!

The West Australian Floor Covering Association organized a Charity Day at The Vines Golf Course, in memory of one of their colleagues who was an avid golfer. He passed away with MND six months ago.

It was Monday 31st March, the wettest day on record for a very long time.

A special thanks must go to the Carpet Company, in particular Robyn, Nancy and Fred who organized the event, and of course all the golfers who got absolutely drenched. Thanks also to  Reggie (our elf) who helped everyone, including Graham & myself, as we were sitting at the 10th hole, with minimum cover and with the wind blowing it around, collecting donations from the golfers, whose aim was the longest drive, for which a prize was awarded during lunch from The Company.

We collected $ 464.30 which disappointed the organizers as they were expecting more, but to me it was better than nothing considering all the negatives of the day.

We all came in at the end of the day, looking a bit worse for wear and had a good laugh about the events that had happened including the greens being absolutely flooded.

Thanks once again to you all.

Lois Peck.

PAST CARERS GET-TOGETHER

The Past Carers Group will meet on:

Thursday 29th May - 2pm
Margaret Donald
313 Belmont Avenue, Belmont
Phone:  9277 8271

Thursday 26th June - 2pm
Rosa Lenzo
14 Blencowe Street, W. Leederville
Phone:  9381 7028

Thursday 24th July - 2pm
Maureen Smith
7 Leybourne Street, Thornlie
Phone:  9459 5907

Saturday 23rd August
Heather Joppek
11 masefield Avenue, North Lake
Phone:  9314 3863

Wednesday 24th September
**  Greyhounds  **

Thursday 23rd October
Evelyn Buswell
16a Wickling Drive, Beckenham
Phone: 9358 2779

Thursday 27th November
Derek Clayton
162 Williamson Street, Cloverdale
Phone:  9277 3397

Our Donation Section will be shown in next months newsletter.

»» Top of Page ««

2008 Diary of Events

Disclaimer: All care has been taken in the preparation of this newsletter. The MND Association of WA disclaims any liability for its content. The information contained within is of a general nature and to be used as a guide only.

»» Top of Page ««