Reducing the Disabilities in PolyneuropathyHome | About | Newsletters | INvoice
Reducing the Disabilities in PolyneuropathyFrom the address by Dr GRACE WARREN, Orthopaedic Surgeon, Westmead Hospital, Sydney, to The IN Group meeting, held Wednesday 28th August 2002 at the Balwyn Library Meeting Room, 336 Whitehorse Road, Balwyn. Dr Warren used many slides to illustrate her information.
Surgery will help stabilise unstable limbs and allow patients who have no muscles below the knees to walk quite normally. We can balance out their muscles.
Most of you will not have been offered surgery except as a last resort. It does not matter what the cause is, once there is nerve damage then there are things we can do which are going to help. The important factor is how does a particular nerve function. If it is not there all you can do is to compensate for it. If the nerve is sick, can we treat it? This is what we certainly do with Intragam for GBS. There are many GBS patients who have made almost complete recoveries, even with long-term demyelination. For a sick nerve we may be able to teach another muscle group or another set of nerves to do the job.
We have three different types of nerves in our body – motor, sensory and autonomic. The sensory nerve is the most important because if you don’t have properly functioning sensory nerves you can destroy yourself because you don’t feel when you are traumatising yourself, when you are getting bruises, cuts, burns. If a person has no feeling in the bones of the foot and has a motor neuropathy causing going over on the ankle, then the person will not worry and continue walking. I had a seven-year old patient with neuropathy who had smashed all the bones of one ankle. It did not worry him, he continued playing football.
Sensory nerve damage needs the education of patients in the informed care of themselves. Sensory nerve damage is rarely total anaesthesia. Many diabetic patients will say "I know when my foot hits the ground, of course I can feel, doctor". But I can stick a row of drawing pins on the ground and they will walk on them quite happily.
Today at The Royal Melbourne Hospital we had a man who came in who had one of his nerves cut and been repaired. But he said "I can’t use my hand because whenever I try to grip anything it is hypersensitive. Things felt very painful even with a light touch." On examination it was found his thumb was twisting in the wrong direction. When I swung his thumb round so it pinched the right way, it was a totally different sensation. He could tolerate that and he is scheduled for surgery to twist his thumb round. Autonomic dysfunction is one everyone forgets. Skin hydration – dry, cracking skin. The skin looks dry, there is often no hairs growing but it doesn’t hurt, it doesn’t itch. Because there is not the normal water in the skin, it is easily traumatised. If you find when you bump your shin on the leg of a table, the skin comes off then the skin has this skin hydration. It will come with ageing but with autonomic dysfunction it will happen very much earlier.
Q. A neurologist will prescribe predisolone (tablets) which is alleged to aggravate skin fragility.
A. It depends on what the predisolone is prescribed for. It may be prescribed for restoring nerve function. Steroids prevent the development a lot of fibrous and scar tissue. In all medicine you have to weigh the balance. The predisolone has been prescribed to try and get more nerves growing back to where they will go good. It may cause thin skin but if you soak the skin and apply lanoline that will help.
The brain sends its messages by nerves down to the feet and the sensory nerves send messages, eg what we are walking on, the amount of weight on it, up to the brain. With GBS and CIDP you have a loss of the sheath around the nerves. With CMT (Charcot-Marie-Tooth) and other congenital neuropathies you have a loss of the nerve fibres. They may grow back but not often. In diabetes you also have a loss of nerve fibres. In many diseases you have a combination of both, loss of sheath and of fibre, at the same time.
At the bottom of the foot we have muscles at the front, a big one (Achilles tendon), on the heel, and there are other muscles along the foot. Walking occurs by balancing the muscles, acting one after the other. The terminology used when we describe the function of the motor nerves are: dorsaflexion is when we pull the foot right up, plantaflexion when we push the foot down, inversion when we turn the sole in and eversion when we turn the sole out. The normal range for up and down movement of the foot is some 30 degrees. We try to leave people with severe neuropathies with only about 10 degrees of motion which is enough for getting up and down steps and walking on reasonable sloped paths.
In the neuropathies any muscles may be damaged but there are usual patterns. If the one that lifts the foot is damaged you have "drop-foot". A patient’s foot was shown which had such paralysis of the muscles that the still active muscles twisted his foot and caused him to walk on the side of his foot, producing a large ulcer because he didn’t feel pain. When he was put in a plaster cast the ulcer healed.
Q. I find with my CIDP "drop-foot", if something strikes my foot, it is quite painful.
A. You still have some sensory nerves and they are probably trying to overcompensate for those that aren’t there. When you have a sensory nerve problem all don’t go out.
Q. In CIDP it seems it is the motor nerves that are degraded rather than sensory.
A. EMG testing will not tell what proportion of the sensory fibres are still functioning. With any group of nerve fibres we have perhaps a dozen different modalities – touch, pressure, weight, stroking, pin-prick – and you have to lose a least 12% of the fibres that supply any one modality before there is any clinical evidence of a deficit of that modality. People may have patchy sensory loss, eg absent on part of the sole, absent on the big toe, normal just above the ankle, absent on the heel. In a big nerve that has got motor, sensory and autonomic fibres in it, you may only have a few affected from each group. I tell my patients to remember that "I must look after my feet, I must make sure my shoes are right, that I protect them, that I dry and oil them properly because I don’t know what they are feeling".
In the foot there are little muscles that prevent the toes from flexing and come straight. When they don’t they curl under and unfortunately in a lot of patients they will bend their nails under and walk on their toe-nails or they will push their knuckles up and they get corns all across the top from rubbing on the shoes.
In all neuropathies the rule is: if you don’t use it, you lose it. As regards physiotherapy for the patient there is a lot we don’t know but from my experience, if a patient has a muscle that is weak, then if he/she persistently exercises it, we can often get it back at much more strength. This is particularly so in CIDPs that have levelled out and in the GBSs that are over their crisis. Muscle strength is charted on a scale 0 to 5: 4 and 5 are good, 3 some may get away with, but 2 and below you have a definite deficit and the body will automatically try to substitute something else. That substitution may produce more deformities.
Sensory neuropathy in the absence of symptoms does not exclude risk of ulcers. You should learn to look at your hands and feet every day and act at once to clean and dress any new cut, burn or blister. If you leave it until infected you have a problem.
When a patient complains of pain, I ask "What is the quality of the pain?" Many will complain of burning sensations or pins and needles but such is not pain. It is uncomfortable but is not the pain when you have a tooth abscess. Some complain of overtight skin from a swelling inside or a dry skin. The limb may feel either warm or cold which is often due to damage to the autonomic nerves. If cold, wearing a glove or sock is appropriate.
A heightened sensation of pain is common but ordinary analgesics are not the answer. It is nature trying to protect you. Without pain you will destroy yourself. Some patients complain of "walking on marbles", or that normal touch feels like pain, both a result of some overactive nerves.
Pain is a natural therapeutic that makes us rest after trauma or surgery so that the tissues are able to heal. For a patient with neuropathy we may not be able to make the nerves recover but the next best is to remind the patient to look after him/herself. An ulcer that will not heal is a compromise; either the doctor has not told the patient how to look after it or the patient hasn’t done it. Any ulcer that is rested and protected from further trauma will heal. The only ulcers I have seen that won’t heal are either malignant which must be removed or ulcers where there has been so much scar tissue that there is not enough blood supply.
I hope you all take vitamins. Myadec is the best money-for-value supply of B1. One capsule gives a full ration of the B Complex in one day as well a whole lot of the other vitamins. A sick nerve must have B1 to recover. It must have calcium; do you all drink your litre of milk a day?
Today’s callus is tomorrow’s ulcer. When you walk on a callus you are pushing it further into the tissues that don’t yell "pain" so it is traumatised.
When autonomic nerves first get sick the limb is warm but two to three months later it becomes cool. You are told you have a poor blood supply but this is not so. The autonomic nerves don’t dilate the blood vessels when the weather is cold. But if you get an abscess on that foot, you will get it hot and swollen – the blood is certainly there.
A dry skin results when the autonomic nerves don’t work – there is no sweat, no oil, it splits and cracks. You knock it and you get an area that is hard to heal. Dry skin needs water, and oil such as lanoline to keep the moisture in. You can remove a callus with a scalpel or an abrasive such as ScotchBrite, after soaking the area, if taught properly.
An insole to protect the sole needs resilience such that you cannot squeeze it to less than half its thickness and then rebound completely. I recommend Sholl’s Shoe Comfort. Shoe insoles are not shock absorbing; when we are walking the amount of impact depends on our weight and the speed.
The orthotists may make special insoles with elected cushioning, sometimes varying to suit where the pressure is. But in a lot of the neuropathies the insoles are aimed at modifying the shape of the foot to spread the weight over the foot. Some people do need orthotics. If so they should not be totally rigid but have an insole. Often when a heel tends to turn in, a shoe insert can be put in with a big heel cup that will help to straighten up the foot.
If you have trodden on something, your foot may get inflamed – signs of redness, swelling, heat and pain. If you have no pain you must learn to act on the other three.
People with neuropathy should never walk without shoes. They must have an adequate sole to protect from thorns and stones plus a resilient insole, the resilience substituting for the muscles no longer providing the padding on the sole.
Patients with ulcers can be treated at home rather than in hospital. A plaster cast is made to cover the leg, say, and then split in half. The patient has a dressing over the ulcer, a stocking covers the leg and the plaster cast halves are replaced round the leg. The patient rests in bed whilst the ulcer heals.
Deformities of the feet and the hands are due to over-action of any good muscles when they are unopposed. Surgery may be the means of correcting the deformity.
Q. Is there an exercise to lessen "footdrop?"
A. If you have got some muscle there you need to strengthen it. Dr Warren then demonstrated a suitable exercise by sitting on a table and suspending from a foot a plastic bag containing a weight (a half kilo of butter) and then moving the front of the foot up and down. If you can exercise muscle so you can lift 3 or 4 kilograms you have an improvement.
For any of these disorders don’t exercise for half an hour. On the first day you may do only five pulls and each day gradually increase, five minutes, ten minutes, 15 minutes.
All neuropathies are not static, they are all likely to fluctuate, up and down. Surgical tendon transfer is relatively easy to do. The way I do it is so that if all the muscles are paralysed you are left with a foot that is still stabilised in a functional position even if you can’t actively move it. Two instances of such successful surgery quoted were a business man with no strength beneath his knees now getting about normally and a policeman, after surgery, also now walking normally and who last year did the 800 km bike ride, raising funds for disabled kids. A woman with severely distorted feet can now, after surgery, wear normal shoes.
Hands have much the same problems. They lose their padding and become flat and the fingers get clawed up, making it difficult to hold things. Here again the loss of feeling is a big problem so anyone with neuropathy in the hands needs to be careful in the kitchen! Normally holding a glass has the hand spread around it but this is difficult with a claw hand. Exercise can help: we ask a patient to put their hand flat and try and open their fingers and practise doing it. If they need to, they put the other hand on top to provide resistance to help stretch out.
It is possible to surgically replace some muscles in the hand, so restoring function. But the hand is so intricate it is not possible to restore all functions. For anybody that is going to have this surgery, they really have to be determined that they are going to work hard. VILMA CLARKE showed how this surgery by Dr Warren just 8 weeks ago had overcome her claw hand which was previously unable to grip.
People with neuropathy, keep your feet moving to prevent ischaemia when the blood doesn’t get through, don’t walk when you can ride, don’t stand when you can sit, if you must stand, shuffle, wear resilient soled shoes and never go bare foot. The patient’s future is in his/her hands; he/she can keep his/her hands and feet useful for life, we need to show him how but we can’t do it for him.
The shortage of Intragam has continued with many patients receiving only 80% of prescribed amount. The IN Group, following a special commit-tee meeting in March, faxed a letter, Grievous shortage of Intragam, to both the Commonwealth and Victorian Ministers of Health, with copies to the Heads of the Australian Red Cross Blood Ser-vice (ARCBS), CSL Bioplasma and the Australian Association of Neurologists.
Following a meeting of ARCBS, CSL and government authorities in April, the National Health and Medical Research Council (NHMRC) is to assess the current unmet demand for Intragam so as to determine target levels for its production. There are hopes that within 12 months patients should be receiving their prescribed Intragam amounts.
The IN Group has continued its main purpose of providing personal support to GBS and CIDP sufferers and their families and friends. Visits were made by KEITH COLWILL, JAMES GERRAND, JULIE LONCAR and son, and JAN LANE, to patients and contacts made to their families at the Austin & Repatriation Medical Centre, Box Hill Hospital, Brighton Rehab Centre, Hampton Rehabilitation Hospital, Monash Medical Centre.
VILMA CLARKE continued to arrange helpful meetings of our members in the North East Victoria area, with some members having been rediagnosed from GBS to CIDP. ROBERT WILSON expressed his appreciation with a generous donation..
Such help has been backed up by the continuing support of our Patrons, Consultants, Committee, members, family and friends.
The IN Group continues to provide support worldwide through being on the Internet. We received about 100 email messages during the year from sufferers from GBS and CIDP seeking information about the rare disorder. We usually airmail back the appropriate GBS or CIDP booklet and latest news-letter "INformation". This response is greatly appreciated and many subsequently join The IN Group.
The IN Group is most grateful for the continuing financial support of CSL (makers of the gamma-globulin product Intragam). This support has cover-ed the cost of being on the Internet since 1955, by their initial donation of $3,500 for a computer/-printer, a further donation of $6,000 in 2000 for a photocopier and annual donations now $1,100.
CSL is also sponsoring a Neuromuscular Fellowship at the St Vincent’s and Royal Children’s Hospitals to undertake research, under the direction of Dr ANDREW KORNBERG, into neurological disorders, particularly GBS and CIDP.
The ANZ has continued its helpful support of The In Group by not charging their fee ($15) for changing foreign currency, usually overseas subscriptions and donations.
Membership is 287 which includes some 250 past and present IN sufferers. Thanks mostly to being on the Internet, 25 are from interstate and 42 from overseas - mainly from the USA but also from Canada, New Zealand, Slovakia and the UK.
I particularly thank the many members who donated generously to our cause. The $10 annual subscription covers our running costs such as the newsletter "INformation". The donations, a wonderful $5475 from members, allow us to expand our efforts, particularly in helping the research into GBS and CIDP being carried out by Dr ANDREW KORNBERG at the Royal Children's and St Vincent's Hospitals. We donated another $5,000 to this research, making a total of $36,000 to date.
OAM for Member
Associate Professor and IN Group member DAVID ASHTON was awarded the Medal of the Order of Australia in the May Australian Federation Awards for his leading the postwar development of plant ecology in Victoria. Congratulations, David.
The IN Group has joined the PDCA. It is active throughout Australia and is planning A National Day of Action in September 2002 in regard to physical disability.
These meetings have continued to be popular. Quality speakers for the evening meetings – Dr RICHARD STARK, Neurologist (and IN Group Patron) on "Treating GBS" August'01; Dr ERICA WOOD, Australian Red Cross Blood Service on "Intragam – Supply and Safety" February’02; MEGAN KNEEBONE, Orthotist, on "New AFOs (Ankle Foot Orthoses" May'02 - were informative and led to interesting questions and discussion. Each was published in our newsletter "INformation".
As well, our very helpful computer mentor GREG KEOGH kindly adds each newsletter issue on to The IN Group webpage
http://home.vicnet.net.au/~ingroup/
The November Sunday Luncheon Party was again a happy social get-together for 32 members and friends as well as a great fund-raiser. A total of $965 was raised, including $288 from the delicious luncheon, $377 from a Dutch auction, conducted with great fun by BARBARA BURZAK-STEFANOWSKI and $150 was kindly donated from members apologising for non-attendance.
Twenty members and friends enjoyed the Winter Luncheon Social Party held on 16/6/02 at the Glen Waverley home of MARGARET and DOUG LAWRENCE. Adding to the pleasure of lunching in the delightful surroundings was how presenter LOUISE KLINE got the group talking about how to make information more accessible to families and supporters. The icing on the cake was the $300 made from the occasion.
This now annual event, held at Maling Road Canterbury, thanks to the initiative of Deputy Director MARGARET LAWRENCE, plus her helpers, was again very successful on Saturday morning 11/5/02. $999 (including direct donations of $72) was raised from the sale of many cakes, jam and some produce.
A number of our members and friends enjoyed from time to time a film and a social get-to-gether over a modest luncheon, held at the Balwyn Cinema. Amongst the films seen were "Gosford Park" and "The Importance of Being Ernest".
The IN Group were awarded a grant of $850 by the Victorian Department of Human services as a Health Self Help group. We made a submission following attendance by Secretary ROSE-MARY MACQUALTER and Director JAMES GERRAND to a meeting of COSHG (Collective of Self Help Groups) to hear the Department’s Bernice Murphy present the government’s funding for Health Self Help and Disability Services.
The IN Group has also applied for a similar grant from the National Bank of Australia, following advice of this funding by VILMA CLARKE.
The In Group was most pleased to receive a donation of $340from the Highett Bowling Club Ladies Section to help research into GBS and CIDP. The Club, knowing of their (and our) member HUGH CAFARELLA suffering from CIDP, decided to allot their monthly donation to our cause. Thanks to Hugh’s wife for initiating it.
This quarterly publication is a vital means of communication to and between members. The Newsletter is yours so make the most of it. Thank you, MELVA BEHR, DOROTHY BRENNAN, BETTY GERRAND, FRED HOOTON, MARGARET LAWRENCE and ROSEMARY MACQUALTER for help with the mailing.
Four meetings of the Council of GBS/CIDP Support Groups of Australia were held during the year by telephone Conferlink. The GBS Support Groups of North Queensland and of South East Queensland have joined the Council, which includes the GBS Association of NSW, The IN Group of Victoria, and the GBS Support Group of Tasmania.
Office bearers elected at rhe May meeting were President - VILMA CLARKE (Vic); Vice-President – GRANT BUCHAN (Tas); and Secretary/Treasurer – MELVE BEHR (Vic).
The Council again set 1st June as our national GBS/CIDP Awareness Day. The IN Group issued a Media Release with the theme "A Big Thank You to Blood & Plasma Donors". The Red Cross Blood Service and CSL warmly appreciated this expression of gratitude.
CSL LIMITED was a most generous sponsor with a donation to the Council of $1,000.
We sold the packets of our quality IN Group Christmas Cards at a bargain price - 12 in a packet for $5 – for a return of $188, being all profit.
Fourteen Entertainment Books at $55 ($60 posted) were purchased by members to give The IN Group a quick return of $140.
Both the Christmas Cards and the Entertainment Books will be available at our August and November meetings.
We have a steady demand for the GBS booklet published by the US GBS Foundation International and the CIDP booklet published by the GBS Support Group of the UK.
Similarly there is a steady sale for JUNE CATHCART's booklet Road to Recovery A-Z and JOHN POLLARD's Boy, is this Guy sick.
Particular thanks to our Deputy Director MARGARET LAWRENCE for her great support; Secretary ROSEMARY MACQUAL-TER for her enthusiastic efforts; to Treasurer BRONWYN CLARKE and partner STEPHEN WALSH for their rewarding initiatives; and to Committee members VILMA CLARKE, MOLLY GUNTARIK-CAMPBELL, PETER MALCOLM and BARBARA RIVETT for their varied talents and sterling efforts in making The In Group such a continuing success.
JAMES GERRAND,
Director.
The AGM was held at the Balwyn Library Meeting Room on 28/08/02 in the half-hour before the public meeting. Director JAMES GERRAND welcomed some 25 members. Following the confirmation of the minutes for the year 2001 AGM, the Director presented his Report for the past financial year 2000/2001 (pp 4,5 of this issue), particularly thanking the Committee and the many members for their help and generosity that had made for another outstandingly successful year for The IN Group. Following the acceptance of the the Director’s Report, Treasurer BRONWYN CLARKE’s Report was presented (pp 6,7), setting out The IN Group’s Profit & Loss as well as Assets & Liabilities. The financial statement is based on the Accrual rather than the Cash method of accounting. Generous donations and fine fundraising allowed the The IN Group to donate a further $5,000 to Dr Kornberg’s medical research into GBS/CIDP. The IN Group was particularly grateful to CSL Limited for their generous annual sponsorship ($1,100). The Treasurer’s Report was endorsed.
A motion to increase the annual subscription from $10 to $15 was lost.
The following were elected unopposed:
Director: JAMES GERRAND
Deputy Director: MARGARET LAWRENCE
Secretary: ROSEMARY MACQUALTER
Treasurer: BRONWYN CLARKE
Committee: VILMA CLARKE, MOLLY GUNTARIK-CAMPBELL, PETER MALCOLM, BARBARA RIVETT.
A further $7,500 was donated in July to the medical research into GBS/CIDP being carried out by Dr Andrew Kornberg, bringing the total donated by The In Group to $43,500. Dr Kornberg, Director of Neurology, Royal Children’s Hospital and the Royal Children’s Hospital Foundation gratefully acknowledged this donation to the Neuromuscular Fellowship Fund.
It has been a busy time responding to requests, usually via the Internet but also by phone, for supportive information: 7 about MMN (Multifocal Motor Neuropathy, see story on back of wrapper) including AUDREY TAPLIN of Kingston (Tas) who has quickly joined, 6 about CIDP and 2 about GBS. Nine inquiries were from Victoria, two from the ACT, one from NSW and one from WA. GLADYS
DEMPSTER, now of Kiama NSW asked for a GBS and a CIDP booklet to be sent to her local doctor.
PAM TYLER spent 10 months in hospital in 1980 recovering from GBS and would be pleased to be in communication with any present GBS sufferer to help from her experience. Her address is PO Box 1126 REDCLIFFS 3496 email rodred@primus.com.au
MARGARET LAWRENCE kindly collected 21 audio tapes regarding various aspects of GBS produced by the GBS Support Group (of the UK) from BRIAN WYNN of The Basin. These are available for loan at our meetings.
Ten of us enjoyed seeing "About a Boy" at the Balwyn Cinema and socialising over a basket lunch.
Member VICKI BROUS, Residential Aged Care Placement and Life Coach, BA, BSW, MAASW, has set up a consulting practice. To contact, her address is PO Box 3017 PRAHRAN EAST 3181, tel 0407547184 email vickib2@ozemail.com.au
A great offer, Anne, by you and your school mates. By your efforts the Red Cross will be providing better facilities in the future.
It seems the bus offer is not presently feasible because of pending VCE exams.
Great Publicity Kylie!
KYLIE MILLER is a member of The IN Group (and Deputy-Editor of "The Age" Green Guide).
Since this article appeared (26/08/02)
The IN Group has received some dozen inquiries, either from those diagnosed with the MMN or those who think they may have the disorder. We have endeavoured to lend support by providing information about MMN or recommending the inquirer gets a neurologist’s advice to determine what disorder they may have.
The IN Group (Inc.)
138b Princess Street
Kew
Victoria 3101
Profit & Loss Statement
1/04/2002 To 30/06/2002
9/07/2002
9:32:02 PM
Income
Subscriptions $820.00
Donations $2,105.56
Grants $850.00
Bank Interest $6.41
Miscellaneous Income $151.32
Sale of products
Books $33.00
Fundraising
Entertainment Books $725.00
Cake Stall $987.00
Winter Luncheon $310.00
Total Fundraising $2,022.00
Total Income $5,988.29
Cost of Sales
Cost of fundraising
Cost of Entertainment Books $660.00
Total Cost of Sales $660.00
Gross Profit
Expenses
Equipment maintenance $187.00
Printing $351.27
Government charges $2.50
Postage $15.90
Internet costs $122.20
Miscellaneous expenses $12.00
Depreciation Fixed Assets $880.20
Total Expenses $1,571.07
Operating Profit
Other Income
Other Expenses
Net Profit / (Loss) $3,757.22
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This Year Prevous Year
@ 30/6/2002 @ 30/6/2001
Assets:
Cash on Hand
Cheque Acc $10,881.65
Petty Cash $200.50
Total Cash $11,082.15 $7,503.22
Property & Equipment
Equipment at Cost $9,020.69
Equipment Accum Dep'nc -$4,416.89
Total Equipment $4,603.80 $5,484.00
Total assets $15,685.95 $12,987.22
Liabilities:
Tax Liabilities
GST $104.37
Total liabilities Nil $104.37
Net Assets: $15,685.95 $12,882.85
Prepared By Bronwyn Clarke
IN Group Treasurer.
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