Transverse Myelitis Society

Minutes of 6^th Meeting of London Support Group

3^rd September 2005

At Old Board Room, National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, London WC1

Next meeting: Saturday 19^th November 1 pm same venue (earlier start)

Note: Email addresses below are for members only, to contact each other – email addresses are not included in the Minutes posted on the website. Sally R, Lew, Yvonne Kolesar and Jean Anthony phone numbers are in previous Minutes.

Attendees (26): Jean Anthony, Farshideh Bondarenko (Lew’s physio guest), Teresa Bryant , Jane Batho and husband Mike , Margaret Duggan and husband Doug, Louise Higgs and brother Nigel, Barbara Houston and husband Barrie, Lew Gray (Secr) L.gray@kpos.co.uk Sally Rodohan (Chair) sally@apinfo.co.uk and husband Sean, Dominic Simpson and wife Sally, Val Southorn (speaker), Roy Smith

Apologies received: Johanna Atkins, Clare Blake, Peter Butler, Vera Butler, Mel Corley (Treasurer), Angela Dunbar, Lorraine Exley, Jenny Fletcher and Esme, Angela Hawkins, Kate Hobbs, Ray Joy, Yvonne Kolesar, Carol Lodge, Leigh Niland, Therese and Carmel Rodohan, Martin and Linda Stanley, Betty Storey

Explanation re TM Society and London Support Group

1. The TM Society is a UK-registered charity. The TMSociety handles Newsletter distribution for the TMAssoc, and the Committee is trying to make sure we have accurate addresses, phone numbers and emails for all UK members.

2. Since we have no specific UK Newsletter, these Minutes (and the website www.myelitis.org.uk) are the only UK-wide communication. We will send these Minutes to any member who requests them, preferably by email but also by post if you don’t have email. Remember you can also view Minutes of all Support Groups – London, Scotland, Telford - on the website.

3. Part of the TMS mission is to encourage local Support Groups. Many members are keen to get to know other TM sufferers, carers and families locally, and of course many of us, even in the Southeast, find travelling to London difficult. Bournemouth Support Group first meeting 29^th October. Other meetings (one off): Norwich 29^th Sept, Manchester 17^th October.

TM Society - General Charity Business

4. Mel Corley (Treasurer) sent apologies and his report: Our bank balance is £647.29 plus we are expecting Gift Aid of £351.98 soon (now received). Our bank details for anyone who wants to donate by standing order are: Transverse Myelitis Society, National Westminster Bank, 10 St Peter’s Street, St Albans, sort code 60-18-11, account 17095492. Or cheques can be posted to TM Society, 35 Avenue Road Brentford TW8 9NS. Many thanks to everyone who has made dondations (who have all been thanked individually).
5. We still have over 50 members on database (out of 400) who have not responded to phone calls and letters.
6. A copy of our new TMS leaflet is attached with these Minutes – any comment from members? (A special version has been done for Scotland.) Any members requiring colour printed copies – to inform friends/family/GP/church about TM or introduce our charity to employer for donation – please contact Lew L.gray@kpos.co.uk  Copies will be sent to Contact A Family, BBC Helpline.

7. New members are needed for Committee. Mel (Treasurer) will carry on to end of this year but then wishes to stand down. We are still reaching only one third of TM sufferers in UK. If anyone is interested in helping, please contact Lew Gray or Sally Rodohan. Must be able and willing to travel, to attend occasional committee meetings in London area.

News and Feedback for All Members

8. Sally reported on the new NHS Expert Patients Programme. This is a 6 week FOC course (2.5 hours per week) aimed at helping long-term sufferers manage their symptoms and medications, communicate better with spouses, families and doctors, improve diet and exercise. Sally found the course and workbook very worthwhile (even after 50 years with TM!), and there was a big bonus in learning useful local contacts to get help, meeting others in the area coping with arthritis, diabetes, MS etc. The main problem seems to be finding out about the EPP – the hospitals often claim ignorance of EPP or say “not enough demand” – we should be pushy (expert!) to ask when the next course is scheduled, find the EPP contact etc. Sally is happy to answer any questions – her phone nos are in Minute 7 above.
9. News from TMAssoc in US: 2006 Symposium now scheduled for 19-23^rd July  at Johns Hopkins Baltimore (diary!). TMA blue wristbands (packaged with tiny leaflet to raise awareness) are going well, raising funds and awareness.UK TMS article will appear in next TMA Newsletter (November?).
10. News from other UK Support Groups:-

·         Scottish Group has already sold 200 TMA wristbands to Support Group members and Margaret’s church.

·         Telford Group had sister from local Pain Clinic to last meeting to speak about new treatments for TM pain.

·         A meeting was held in Birmingham for NMO/Devics sufferers (24 attended) in July. A website is in development and sufferers are being recruited for a US drug trial.

·         TM Norwich meeting is 29^th Sept.

·         Manchester meeting is 17^th October – contact Geoff Treglown 015394 34677.

·         New Bournemouth Group first meeting Sat 29^th October – contact Barbara Houston or Teresa Bryant at email addresses above.

11.  Independent Living London exhibition is at Alexandra Palace London on 21-22^nd Sept. LivAbility UK exhibition will be at Gateway Centre, Derbyshire County Cricket Ground, Derby on 20^th October.

12. Any feedback from members re accessible holidays?
13. Have any members ever attended the Johns Hopkins TM Center in Baltimore USA? We would very much like to hear about your experience and impressions of them – contact Lew Gray l.gray@kpos.co.uk
14. The Brain & Spine Foundation has new website www.brainandspine.org.uk
15. Lew apologised for delay in completing TM Kids List, which would be sent (by email) soon along with Contact A Family e-Newsletter.

For the first time we were delighted to welcome a speaker to the meeting, who gave a very interesting and well received talk entitled…

‘A Gentle Introduction to Complementary Therapies’ – Val Southorn, Speaker

16. Val is a qualified homeopath and reflexologist (and married to Lew who got TM 21 years ago). Val is also regular user of acupuncture, herbalism and nutritional therapies but not professionally qualified in these. The following is a brief summary of her main points – for full text (3pp) please email valsouthorn@blueyonder.co.uk
17. What distinguishes complementary therapies from orthodox approach?

·         support the body to heal itself / energy-based not material-based

·         address the cause of the problem not just the symptoms

·         look at person as a whole, including personality, life experiences, likes and dislikes, temperament, body temperature, weak spots in physical and mental constitution (where the same disease can result in different symptoms)

·         non-toxic, unlike drugs which usually increase load on the body’s system

·         no side effects as chemicals are not used

18. Homeopathy uses minute quantities of remedies, to stimulate the body to heal itself, after lengthy analysis of the person’s history and constitution. Reflex-ology is based on the knowledge that all the body’s organs are mapped out on the feet and hands. It uses gentle stimulation to target specific areas and release energy blockages, and is particularly useful for pain. Special types of reflexology include Vertical Reflex Therapy and Nerve Reflexology.
19. Val’s own interest has moved toward addressing the foundations of health, on the basis that good energy, good sleep and good water are essential to max-imise the body’s healing capacity and provide the basis for long-term good health. Nikken is a Japanese-founded worldwide company which provides a range of wellness products including magnetic insoles, sleep systems and water systems.

Suggestions and Feedback from Members

20. TMA and TMS do not endorse any of the medications, treatments or products reported. We strongly advise that you check any drugs or treatments mentioned with your medical adviser. Members are reporting their own personal experiences with TM.
21. Following the success using herbs to treat TM pain, members interested in locating a local medical herbalist should use www.nimh.org.uk the professional association. (A trial search by county found 35 registered in Kent and 19 in Hertfordshire.) Jane Batho emphasised the need for patience as herbal remedies worked very gradually, in her case over 3 months.
22. Searching for a neuro specialist physio can be done using two websites: www.csp.org.uk then click on ‘physio2u’, enter postcode etc and remember to select Neurology/Neurosurgery as specialist area. (Trial search found 19 in London with neuro specialism.) Or you can use www.physiofirst.org.uk to ‘Find a Physio’ – this search is similar except it offers Adult Neuro as well as Pediatric Neuro as options. (Trial search in West London found 11 Adult and 9 Pediatric Neuro; a second search found 22 in Middlesex.) www.acpin.net has not responded to our request for their ‘private register.’
23. Martin Stanley of Portsmouth suggested plasma exchange is used for Devics Disease and sometimes TM. The Johns Hopkins TM Centre website says, “Plasma exchange (PLEX) is a more invasive treatment in which serum containing inflammatory factors is removed from the patient. Several studies have suggested that PLEX is effective. Typically, we offer PLEX to patients who have significant disability and appear not to be responding rapidly to steroids.” We do not know how widely plasma exchange happens in UK.
24. Pain Clinic sister (Jeanette), speaking at Telford Support Group meeting in July, said that new Lyrica drug had been great success treating TM pain, but depended on getting dose correct. Peter Butler emailed from Folkestone to say he tried Lyrica, reflexology, acupuncture and yoga but none worked for his pain. Now Peter uses a cocktail of gabapentin 3x900mg, oxycontin 10mg twice and oxynorm which works well finally after 4 years, but with side effect of constipation. Several other members report gabapentin gradually stopped working for them though – like all pain drugs dosage needs regular review and rebalancing. Margaret Duggan said she was allergic to pills and patches, and Chelmsford Pain Clinic consultant was now recommending a surgical implant for her to drip-feed drugs, in order hopefully to bypass the allergies.

London Support Group - New Members’ Experiences with TM

25. Sally welcomed new members to the Group and invited them to talk about their experience with TM. As at previous meetings, most new members have never previously met anyone else with TM, and everyone was delighted to be able to discuss their experiences with fellow sufferers.
26. Dominic Simpson got TM in May 2000, got back to work by December but the pain in his left leg worsened instead of getting better. He took coproximol for a couple of years, tried yoga-like stretching, insoles to cushion his leg from impact. Gabapentin worked great initially but wore off after 3-6 months. Finally Dominic had SCS (spinal cord stimulation) surgical implant in December 2004 and he is now 60-70% drug free. All financed by BUPA. (Another member Cornel Cheslaw Cambridge says his sister in Northants is going for SCS in UK too (under NHS!), following unsuccessful visit to Johns Hopkins TM Center in US.)
27. Louise Higgs got first attack in 1998, was admitted to St Thomas Westminster but after 10 days with no treatment she discharged herself with her left leg still paralysed. She stopped all medication, did 3 months homeopathy and paralysis went away. But Louise has had 3 further episodes. TM was diagnosed in April 2005 by Dr Ellis in Poole, but now in September he is still not sure.
28. Teresa Bryant had slow onset in 2002 with gradually rising numbness. Doctors found demyelination in her neck. Dr Ellis sent her home from her job as nurse, she was left 6 months on her own and then given some physio. She still suffers from strange sensation, has returned to work part time as Info Officer in Poole hospital, liaising with PALS. Teresa and Barbara Houston are working together to set up Bournemouth Support Group since there is a large cluster of TM members in the Bournemouth/Poole area.
29. Jane Batho was visiting from Perth Scotland (husband works in London). Jane got TM in 1999. Her GP was excellent and made a quick diagnosis. Jane suffered relapse after 4 weeks and has had 5 recurring episodes since (3 years since the last one though!) – each time she has intravenous steroids for 3 days. Jane feels herbal treatment has really helped her especially with leg sensations (see Minute 18 above).
30. 30.  £67.50 was collected to defray the meeting room cost and refreshments and pay for 7 wristbands.

Next Meeting

31. The next meeting of the London Support Group will be on Saturday 19^th November (NB not 26^th) at 1pm (NB earlier start) at same venue (NHNN).