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From the address by VICTORIA ERSKINE-BEHR, Certificate of Massage Therapy, to the Meeting of The IN Group, held Wednesday February 10th at the Balwyn Library Meeting Room, 336 Whitehorse Road, Balwyn.
Victoria began by stressing
that aromatherapy did not provide a cure to disorders but could be a help in the recovery process.
She also stated she had not so far been able to examine its role in GBS or CIDP recovery but had
looked into its possibility for MS recovery.
She explained how the aromas came mainly from plants. Many of these plants would be familiar to gardeners. These aromas were conveyed to the emotional centre of the brain through their molecules attaching to the fine hairs of the nose. There are many different molecules making up different types of essential oils, the molecules attach to specific receptors that trigger a response in the brain to send out hormones to various areas.
With massage, the essential oils are able to penetrate our waterproof skin, and into the blood stream, muscles and nerves, providing more of a local effect. For example if you wanted to use an oil for muscular cramps, or "pins and needles", it would probably be better to leave the oil on the skin overnight. They do last for a long time.
Instead of a massage, the essential oils can be added to the bath - a favorite relaxing way for Victoria.
For any of these procedures you need only six drops of the essential oils. You decide which oils will help you most and then put them together. If you using a massage these six drops would be added to 10 millilitres of the massaging oil, say olive oil. For inhalation the oils will be dropped into steaming water with a towel over your head. For a bath, mix the drops in with a spoonful of shampoo or milk. You can also use a vaporiser for breathing it in, adding the drops on top.
Victoria then showed listings of the various essential oils. They work better together. There are three types; "Top note" - oils with small particles that evaporate and act quickly, "Middle note" - oils that take longer to have effect, and "Base Note" - oils that are made from gums and resins that have bigger, stronger particles that slow down the whole process.
It was a good idea to have a mixture of the types so that you can keep the quick acting ones lasting longer in the mix and so a broad spectrum can be covered. There are some you can rub in singly.
Victoria advised to only buy essential oils labelled "Cold pressed" as this process produced the most effective oil.
At the end of the talk, Victoria was so kind as to make up some half a dozen phials containing a mixture of essential oils to suit conditions requested by some members present. Betty Gerrand had one prepared to suit growing pains experienced at times by a five-year-old grandson and I received one to suit Inflammation - as incurred with GBS and CIDP. We will report on its trials.
James Gerrand
See a good film ""Shakespeare in Love" and then have a basket luncheon (fresh cut sandwiches, cream cake, tea or coffee) with fellow members and friends, all for $10 (out of which The IN Group makes $1.50) at the Balwyn Cinema 231 Whitehorse Road.
RSVP Betty Gerrand 9853 6443 by Wed 10th March.
Following the outstanding success of last year's Cake Stall - $500 of cakes sold in 2 1/2 hours - MARGARET LAWRENCE is arranging another fund raiser to be held at Theatre Place, Maling Road on Saturday 1st May commencing 10am.
Members and friends are asked to donate their favourite home-made cakes (jars of marmalade, jams and chutneys also welcome). Please contact BETTY GERRAND 9853 6443 or MARGARET LAWRENCE 9802 5319 to advise details of your donation.
A speaker from the "Independent Living Centre" will discuss how people with disability can be helped in their everyday living. The meeting will be held at the Balwyn Library Meeting Room, 336 Whitehorse Road on Wed 12th May at 8pm.
Repeating last year's very happy social event, Margaret and Doug Lawrence have again made available their home, 26 Belmont Road, Glen Waverley, as the venue for our Winter Luncheon, to be held on Sunday 6th June at noon.
For $10 you and your friends will both enjoy a delicious light luncheon - homemade soup, chunky bread, dessert, tea or coffee - meet up with members and friends and support The IN Group.
RSVP Betty Gerrand 9853 6443 by Wed 2nd June.
LOGOsThe IN Group is trying out two of the Logos kindly submitted by members.
You will notice one on the cover of this newsletter. Congratulations and thank you LOYIS VOIGT.
The one submitted by GEOFF MACQUALTER (congratulations and thanks) was used on the front page of "INvoice" the first issue of the newsletter of the Council of Australian GBS/CIDP Support Groups.
Please let us know how you like them.
For the past three months there has developed a desperate shortage of Intragam (the trade name of gammaglobulin produced by CSL Ltd) The In Group is asking Australian members to take two actions.
The first, and most important, is for each member to obtain urgently as many signatures from family and friends as possible to a Petition to be presented to the Federal Minister of Health, Dr Michael Wooldridge, requesting immediate government funding to the Australian Red Cross Blood Service so that sufficient Intragam is produced to meet medical needs.
A copy of this Petition is enclosed in this newsletter. Please send the Petitions by Monday 15th March to The IN Group, 138 Princess Street Kew 3101 so that the Petition can be presented at the Minister's office at 523 Station St Box Hill on Monday 22nd March at 11am. We will be inviting the media to attend the presentation so please advise - tel 9853 6443 - if you can take part in The IN Group's presentation.
The second (and associated) action is for each member to send a letter to both his/her local Federal MP and State MP, requesting support for more government funding. For this purpose two copies of a suggested letter are also enclosed in this newsletter. Please obtain the names and addresses of your local MPs to add, with your signature, to your letters. You need to post them by 15th March to influence the Federal and State government funding for extra Intragam.
The demand for its use has dramatically increased in recent years, rising by the order of 20 percent a year. Due to this situation the ARC Blood Service in 1997 issued a policy listing three levels of prior-
ity for use of Intragam. CIDP in children too small for plasmapheresis was in the top A priority; GBS and CIDP patients qualifi-ed for B priority where other therapy had
failed or is contraindicated or plasmapheresis was difficult.
In November 1998 the Australian Health
Ministers' Advisory Council (AHMAC), in recognition of the increasing demand and limited supply, set up a Working Party for the "National Review of the Use and Supply of Intravenous Immunoglobulins". The IN Group made a submission to this review (p3 of Dec'98 "INformation) as have the Council of Australian GBS/CIDP Support Groups, the GBS Association of NSW and a number of our members.
The present desperate shortage of Intragam has arisen from a combination of the increasing medical demand plus two recent "hiccups" in its supply - a batch from NSW was delayed when test kits needed to be changed and a batch at CSL showed an abnormality that is still undergoing review. (The Longford gas shutdown may have contributed to this).
Many of our members rely on Intragam for treatment of their GBS or CIDP and its present unavailability is causing serious setbacks to their condition.
We must thank one member particularly so affected, Mr Geoff Walker of Glenhuntly, for his initiative in making the media aware of this serious medical failure.
Geoff was featured in the "Herald-Sun" 8/2/99 (see p.3) and inspired Jon Faine of ABC 3LO to interview Dr Neil Boyce, ARC Blood Service, about the problem on his radio program Friday morning 12/2/99.
Geoff drafted the Petition which was endorsed by The IN Group Committee. He has already secured over 100 signatures to his copies of the Petition.
The present unacceptable lack of Intragam has made the ARC Blood Service, CSL Ltd and we dependents on Intragam, realise that a reserve quantity of Intragam needs to be held to cover unforeseen circumstances such as the recent "hiccups".
This means the governments must also include in their funding the cost of creat-ing this reserve stock of Intragam. It is normal business practice.
We are seeking interviews with Dr Wooldridge, Federal Minister of Health, And Mr Rob Knowles, Victorian Minister of Health, to put the case personally. We are seeking similar interviews with Ms Jenny Macklin, Shadow Federal Minister of Health, and Mr John Thwaites, Shadow Victorian Minister of Health.
Our Day is to make the public aware of the needs of GBS and CIDP sufferers.
It is hoped that by 1st May the Intragam shortage will be over and need no further awareness. Our main concern is back to secure more funding for research into these auto-immune disorders. Dr ANDREW KORNBERG of the Royal Children's Hospital is pursuing a very promising line in trying to identify which antibodies may be associated with the disorders. The IN Group has given $12,050 to help this research through fundraising efforts and generosity of members.
MARGARET LAWRENCE, as mentioned on page 2, is organising a CAKE STALL at Maling Road on this date 1st May. She has also arranged for Melbourne Community Television Station 31 to give The IN Group a spot at this time.
Let us know (tel 9853 6443) if you have any bright ideas for this Awareness Day.
Our membership is now at 287. It includes 27 interstate (Qld 9, NSW 9, Tas 3, SA
4, WA 2) and 59 overseas (Austria 1, Canada 3, Italy 2, Japan 1, New Zealand 5, Philippines 1, Slovakia 1, United Kingdom 3, United States 42).
A number of new members now join by "pulling down" our application form from The IN Group Home Page. Cheers to the Internet!
83 members have now returned The IN Group Questionnaire which is a great help in matching like to like in personal support to GBS or CIDP patients. Again a number have obtained the Questionnaire from our Home Page.
This organisation held an interesting Forum/Workshop on Monday afternoon 8th Feb. Stephen Woodward ran the discussion on "Planning and Running a Campaign". This topic was appropriately helpful as a precursor to our campaign to overcome the Intragam shortage.
Stephen has experience from running campaigns for ASH, the Anti Smoking Lobby. His main advice was in planning to list all the ways, all the organisations and all the people who could be helpful. In running the campaign he stressed the importance of trying to form a personal contact with one's local Member of Parliament, such as being helpful to him/her in their political campaign.
Highlights of The IN Group support activities are postponed to the next issue of "INformation", due to this issue's main concern - the Intragam shortage.
However there is space for one pleasing item - 23 year old ANGELA BRAMLEY reports, in sending in her questionnaire that she is slowly recovering from her GBS. She is recovering at her Ballarat home whilst visiting the Ballarat Rehab Centre for continuing treatment. She expresses her gratitude to The IN Group for its help, particularly from visits by JUNE CATHCART from Stawell.
Again reports of the helpful Internet communications are held over. And again with one exception; BARBARA HYATT of Geelong reported on the Internet how GEOFF WALTERS had been actively campaigning for more Intragam. John Lorentz from the USA asked Barbara to forward to the Chairman of AHMAC a 7 page message endorsing Geooff's demand for more Intragam.