The Care of the Feet

• To maintain awareness of the condition of the feet and legs and pay attention to them.
• To prevent trauma and the development of complications.
• To be educated in self-care (and ask questions).
• To maintain independence and mobility.

• Assess vascular and neurological status and detect changes.
• Diagnose and treat abnormalities of the feet.
• Assess foot function and correct, improve or accommodate abnormalities where necessary.
• Manage wound care.
• Educate re footcare and footwear.

• KEEP FEET CLEAN - wash and dry well each day, paying particular attention to between the toes. If toes are close together, use a soft flannel or piece of gauze. POWDER IS NOT RECOMMENDED - if needed use a moisturising cream such as Sorbolene.
• INSPECT YOUR FEET - after bath. Look for blisters, abrasions, bleeding, swel- ling, peeling skin, split nails or other abnormality. Use a mirror if necessary.
• COMPARE FEET - temperature, colour, swelling.
• AVOID EXTREMES OF TEMPERATURE. Switch off electric blankets when in bed, Avoid hot water bottles and direct heat from radiators. Keep warm with woollen blankets and woollen socks. Check bath/shower water temperature. Avoid sunburn - use sunscreen on your feet too! Always have feet covered indoors and outdoors and wear footwear appropriate to the weather.
• TOENAIL CARE - you need good cut- ters, good vision, good mobility and normal nails. Maybe you should just file! IF IN DOUBT - DON'T do it your self.
• CONSULT A PODIATRIST if your nails are difficult to manage.
• CORNS/CALLUSES - DO NOT USE corn pads/ cures or bathroom butchery - see a podiatrist.

Always treat broken skin seriously. Early detection and treatment is very important. Clean well with plain water and pat dry, applying a mild antiseptic if required. Keep covered with a dressing that won't stick to the wound and secure with light sticky tape.We tend not to recommend Bandaids except for healthy people with normal skins. Change the dressing each day unless it is a special type of dressing that you are advised can stay on longer. You need to consult a podiatrist or doctor if the wound is not healing or getting worse. Ulcers require specialised management. There may be the need to adjust or change one's footwear. In the case of a person with neuropathy the wound may be painless - special attention to the wound is then needed.

If you have sensitive skin such that you can't use regular soap we recommend washing with a gentle soap such as Q.V. Wash/Bath Oil.

Compounds TEGADERM and OPSITE for which the limb is wrapped up (as with Gladwrap) have been found helpful for neuropathic pain, particularly diabetic.

If you are spending a long period in bed compromising the peripheral circulation then heels, ankles and other bony prominences need attention. Appropriate bedding of a soft mattress and possibly an underlay will provide pressure relief. Heel protectors and/or skincare pads may be needed.

Compression stockings are available to control chronic swelling and prevent blood clots in the deep veins. Elevation to keep the feet up quite high at every opportunity can be important. Exercise can help reduce swelling and one's footwear should be accommodating, not squeezing.

Tinea is a fairly common foot infection. It may affect the toenails, between the toes or the skin around the feet. It can be picked up when you are susceptible to infection. The nails can become discoloured and crumbly or brittle. Tinea grows rapidly in moist, warm conditions such as inside shoes, between toes, walking barefoot on wet floors. It needs to

be diagnosed and may appear as red or white, itchy or not, peeling skin or intact blisters. Antifungal preparations are available from pharmacies.Continue the treatment for a fortnight after the symptoms have disappeared to avoid a recurrence. Wash socks in hot water and air one's shoes.

• Pay attention to your feet and ask for help with footcare tasks.
• Protect your feet from injury.
• Seek early intervention if abnormality detected.
• Seek professional advice and treat- ment when required.

The Australian Health Minister's Advisory Council (AHMAC) has accepted a number of the recommendations of its Working Party National Review of the Use and Supply of IVIG (intravenous immunoglobulins, produced in Australia by CSL Limited under trade name Intragam). Its two main acceptances are:

* Chronic inflammatory demyelinating polyneuropathy (CIDP) and Guillain-Barré Syndrome (GBS) are in Category 1 - there is now convincing evidence of benefit. We must thank particularly the Australian Association of Neurologists for their strong support for this top categorisation.

* AHMAC endorses as a target figure a 20% increase in the first year to 900kg in the supply of IVIG (5.03 kg/100,000 population). Attaining this figure will overcome the current shortfall of treatment of many of our members, eg getting 24gm instead of the prescribed 30gm.

Other agreements of note are that the distribution of IVIG is to be on a national basis and the monitoring of the use of IVIG will be by the Australian Red Cross Blood Service.

AHMAC did not accept The Working Party's recommendation for funding of some $13 million to provide the extra 20% (239kg) of IVIG in the first year. If provided by imported IVIG the cost would be some $23 million.

What The IN Group, together with the Council of GBS/CIDP Support Groups of Australia and other state support groups, has to do now is agitate vigorously to demand that our Federal and State Governments provide the extra $13 million to ensure our medical needs are met.

The IN Group, together with the Council of GBS/CIDP Support Groups of Australia, made presentations to this Review Committee set up by the Federal Minister for Health, Dr Wooldridge, at a sitting in Melbourne on 4 May.

MELVA BEHR, Secretary of the Council, and JAMES GERRAND, Director, and members ROSEMARY MACQUALTER, GINA MERNONE and MICHELLE HUGHES, of The IN Group, made strong representations to the three members of the Review Committee, The Rt Hon Sir NINIAN STEPHENS (Chair), Dame MARGARET GUILFOYLE and Professor ROBERT BEAL.

We congratulated AHMAC on agreeing to a number of important policies (see opposite column under Good News).

However we expressed our bitter disappointment that AHMAC had not agreed to find the $13 million to provide the full amount of needed IVIG. We asked the Review Committee to recommend to the Federal and State Government that they urgently provide this sum so that CIDP and GBS patients get their needed medical prescribed treatment. The present shortfall means that many such patients suffer additional trauma and hospitals incur additional expense in longer hospital stays and less successful outcomes.

Finally we asked the Review Committee to request the Federal and State Governments to grant additional funds for research into GBS and CIDP. As a minimum governments should match private donations to this research such as the $27,500 donated to date to the research being carried out by Dr Kornberg at the Royal Children's Hospital, Melbourne.

The IN Group on 12/4/00 was pleased to donate a further $5,000 to assist the research being carried out by Dr ANDREW KORNBERG into GBS and CIDP disorders at the Royal Children's Hospital. This brings the total of our donations over the past four years to $27,500.

This further donation was greeted with a spontaneous round of applause when announced at our May quarterly meeting. The IN Group thanks the many members, families and friends for their continuing generous monetary contributions and personal activities that have made this support a reality.

This now annual event was again very successful, raising $915 from the sale of many cakes, jams and some produce - pumpkins and a strange fruit Cavono -donated by many of our members and friends.

Many thanks to main organiser MARGARET LAWRENCE and many other helpers including BETTY GERRAND, MELVA BEHR, BARBARA RIVETT, ROSEMARY MACQUALTER, PETER MALCOLM.

Sixteen members and friends enjoyed seeing "Angela's Ashes" on Tuesday 23rd May at the Balwyn Cinema and later socialising over a nice lunch (all for $10, 50c going to The IN Group)

The IN Group received an unexpected but most welcome and generous donation of $350 from the Geelong Coastal Group of the Country Women's Association of Victoria Inc. The donation is for furthering research into GBS and CIDP.

This splendid donation resulted from the initiative of member LOYIS VOIGT. Thanks very much Loyis. Other members may care to think about whether they could encourage their favourite organisation to donate to our research fund.

Thirteen of these books have already been sold - eight by BRONWYN CLARKE and STEPHEN WALSH to their friends. A book, valid now until 1/6/2001 will cut $25 or so from your bill at selected restaurants, less formal dining, theatres, sporting events, hotels.

CSL Limited, makers of the blood product Intragam, has donated $1,100 for the year 2000/2001. This financial support covers the cost of The IN Group connection to the Internet.

The IN Group warmly thanks CSL for their continuing support.

Repeating what has become an annual very happy social event, MARGARET and DOUG LAWRENCE invite you, family and friends to their home, 26 Belmont Road, Glen Waverley for our Winter Luncheon, to be held on Sunday 18th June at noon.

For $10 you will enjoy a delicious light luncheon - home-made soup, chunky bread, dessert, tea or coffee - meet up with members and friends and support The IN Group.

Ansett's PAMELA JOHNSON will discuss "Travelling with CIDP" at our regular quarterly meeting to be held at the Balwyn Library Meeting Room, 336 Whitehorse Road on Wed 9th August. Our Annual General Meeting will begin the meeting at 7.30pm.

GBS Foundation International

The following are some findings reported in a number of articles.

Gareth J. Parry in "Residual Effects Following Guillain-Barré" states that a Holland study established that about 80% of 83 patients who had suffered GBS an average of five years previously experienced fatigue severe enough to interfere with their life despite having normal strength or only minor weakness. The fatigue did not seem to improve over time. Parry says this study confirms his own observations of his patients. A sec-ond under-appreciated symptom that Parry has noticed is a tingling or aching in the feet. The basis of both these symptoms is probably axonal degeneration.

Kleopas A Kleopa and Mark J Brown in "Disability after 'recovery' from GBS" give statistics from a survey of 140 GBS patients; 70% made a complete neurological recovery within a year, 22% could walk but not run, 8% were unable to walk unaided and 2% remained bedridden or ventilator-dependent after a year.

The IN Group being on the Internet continues to receive requests world-wide for information on GBS or CIDP from patients, family or friends. Many recipients are so pleased to be at last informed about these rare disorders that they join and often give generous donations. In the last few months we have had calls from Spain, Ireland and the USA (Alaska, California, Missouri, Oklahoma, Ohio) as well as interstate (Cooma (2), Kogarah, NSW; Ashgrove, Qld).

ROBIN gives much good advice through email messages on the US based GBS/CIDP chat club. Here are some examples.

Steroids are generally NOT effective for GBS, but are for CIDP - in fact that's one of the diagnostic differences.

Plasmapheresis and IVIG are thought to be effective during an active demyelinating attack. Therefore in GBS they are considered to be most effective early on, in the first few weeks. For CIDP, since these attacks recur for most patients, they are effective any time there is a new attack.

In both cases, the treatment is believed to halt or decrease the severity of the active attack. It can still take some time for the nerves to remyelinate and systemic recovery.

Some patients respond to plasmapheresis, some to IVIG, some to both, some to neither.

There have been some CIDP patients for whom IVIG slowly loses effectiveness over time. In some of these cases, switching from IVIG to plasmapheresis and then back restores the effectiveness of the IVIG.

Plasmapheresis and IVIG are believed to be about equally effective if both work for the patient, and which one is used is dependent on a lot of factors.

If neither plasmapheresis or IVIG work for a CIDP patient, the next step is usually an immune suppressant drug. This is not taken during the active attack, but is usually taken continually.

Came across this 1999 article from "Neuropathy" which lists a study indicating that fatigue was a symptom in about 80% of those who had GBS, even years after other symptoms had gone.

"CONCLUSION. Fatigue is a major system in patients with immune-mediated polyneuropathies and may persist for years after apparent recovery. The Fatigue Severity Scale seems appropriate for assessing fatigue in those patients because good internal consistency, reliability and validity were demonstrated".

IN Group Fridge Magnet

This is the design of the 500 fridge magnets we are ordering at a cost of $500 for distribution to hospitals and neurologists. The tortoise and main wording will be in green.

Our thanks to Treasurer BRONWYN CLARKE for this fine publicity initiative.

Some actual answers given by UK secondary pupils.

1.  Ancient Egypt was inhabited by mummies and they all wrote in hydraulics. They lived in the Sarah Desert and travelled by Camelot. The climate of the Sarah is such that the inhabitants have to live elsewhere.
2.  In the Olympic games, Greeks ran races, jumped, hurled the biscuits and threw the java.