Transverse Myelitis Support Group Meeting ATTENDED: Teresa Bryant (Chair), Yvonne
Trapp, Amy White, Mary Bergin, Angela & Lance Harris, Frank & Jane
Devine, Janet & Patrick Biss, Christine
Clamp, Malcolm & Mary Plested, Roy & Jean
Wright, Sue Hyatt, Lew Gray, Farshideh Boudarenko, Robert Stevens. APOLOGIES: Barbara & Barrie Houston, June & Graham
Ward, Welcome: Lew Gray Secretary of TMS and his Physiotherapist Farshideh who
came down from Decided to wear name badges again to familiarise ourselves
with names to faces! Subs are now £1.00 which includes tea and refreshments,
Val Young’s cards are on sale for £1.30 each and £1.00 goes to TMS, she will also make cards for special occasions as required. Recent committee meeting with two
new committee members, Val Young (Robin’s wife) and Mary Bergin. Val is interested in helping with the practical
side of dealing with changes to lifestyle due to disability. Aids and adaptations and where to go for help
for this. She is also willing to organise social outings if there
is an interest. Suggestion
of pre- Christmas get together – a trip to Val is also calling people who we have previously been
in touch but now do not attend meetings or reply to emails. This maybe
because are better, but feel is worth us checking. Mary Bergin, now has attended
the group for a year and is keen to have a more active part in the
group. After discussion at the committee meeting she
volunteered to take over leading the TM Support group as Chair after
the July meeting, as Teresa is stepping down after three years as now
back to full time work poses difficulties with chair commitments and
in developing the group further. It was discussed regarding the notice board on display. Information was available regarding summer
activities. Teresa asked anyone
to bring more information such as activities, equipment, holidays (Barbara
and Barrie have been to Guest Speaker Linda White – Physiotherapist from BWT in Parkstone Linda talked about her role as a Physio,
aims of physio and problem solving to specific
conditions or injuries. She
talked in great depth about maximising your potential for what you
can do to help yourself as a patient. She talked about how TM affects the nervous system,
there is a period when the nerves are less active, therefore for nerves
to repair physio’s can maximise power from
muscle strength. If you do nothing, you will probably get worse. You have to keep moving for things to hopefully
improve. Linda talked about the importance of stamina and fitness
as key things to aiding recovery with TM. Exercise three times a week for 15 mins doing
something to increase your heart rate and make you sweat. Weight bearing (Resistance) exercise is key to muscle strength and sending signals to the damaged
nerves, allowing good blood supply through the body. Equipment that can be used to help with resistance exercise
is DMI Muscle Stimulator, Vibration Platform. The vibration helps power, improves circulation and
can raise or lower tone. Linda
said that walking may not be sufficient to increase muscle strength
alone, for specific muscles. Bone density – was also discussed. Men and women are both at risk with lack of
movement and exercise, but post menopausal women are a high risk group. Some patients can feel abandoned by the NHS once they have had their allocation of Physio treatment. It
is important that everyone can get access to Physio if
needed or for a regime to be compiled for the individual. Exercise prescription from your GP based at a gym, even
5 mins daily of a specific exercise is helpful
when working on strengthening muscles groups and problem areas. Demonstration with Therabands –
Linda said that if anyone wanted one they buy the rubber in on a large
roll and can supply, but are generally £3.00 for a metre. (Ask Teresa
for more details) Pilates is excellent for core stability and back and
abdominal strength. Particularly
in the case of such manoeuvres we do daily as getting up from a lying
position. Osteoporosis Common Fracture is Colles (wrist) Arthritic Wrists. Weight bearing exercise for wrists such as leaning weight
through straight arms on a table can strengthen. Today we are not scrubbing floors and doing
the domestic chores that were once a daily occurrence hence evolution
of the housewife and an increase of fractured wrists, hips and osteoporosis. Black coffee and fizzy drinks reduce bone density and
it stops the absorption of calcium into the bones. Intake of dairy products if tolerated is an important
source of calcium in the diet to help bone density. Sitting to standing and stairs are good for strengthening
bone density. Balance Two main mechanisms eyes and ears: Nerve signals start from lower down so if you have sensory
loss it may affect balance due to sensory perception. If you close your eyes and legs together it
challenges your balance perception in a different way. Patients often only get challenged on mobility and strength
and not balance. Try challenging your balance in a safe way in front
of the sink or something in front of you, stand on one leg and hold
for 1 minute, repeat with other leg (if able) then try this with your
eyes closed! It brings a whole new element to it! This was something
I was given by my Neuro Physio to try everyday and
it was very challenging, it is only now a year on I realise why I was
made to do this! Now I have my core stability back! (Added
to minutes by Mary Bergin). Linda showed us her special shoes to aid balance M.B.T. shoes (Masai Bare Foot Technology) They work by altering your balance, so you have to focus
on the centre of your gravity! They can work well for some patients as can Orthotics fitted into shoes. Shoes are available from Matchams Ski
Centre £125 a pair! Thanks to Linda White for a very informative talk. Raffle. Teresa informed the group that we have been given a
donation of £175 from Mary McRobie (So and
Sews), friend of Roy and Jean Wright, who has also previously donated
over £100. Mary was unable to attend the meeting today. Sue
has written to thank her. MS Centre at West Parley, we had negotiated for us to
use their facilities, gym etc and since then no-one has attended. Roy and Jean expressed an interest and asked
if there was transport available. The
Centre do have their own bus; Teresa said
she would enquire. Lew Gray spoke – MS Society
has a magazine ‘MS Matters’ which is very informative and has research
and articles that are often relevant to TM. The
membership for the MS Society is £5.00 a year and well worth joining
just for the magazine. Lew said to email him if anyone is interested in Botox for the use of bladder incontinence or spinal cord
implants for pain relief as two members at the London Group are using
both treatments. Also the use of low dose Netroxone. Recent AGM in London TM Group Jane Stevens joined who
is a Senior Physio. £2000 was donated to Johns Hopkins Research Project
Restore. Dr Anu Jacob has written some
research on the diagnosis of Acute Transverse Myelitis. He is based at the Walton Centre in He hopes to set up a similar clinic in Lew said he has read an excellent book ‘The Autoimmune
Epidemic’. Forward is written by Dr Doug Kerr. Also
talks about Diabetes Lupus and Crohns. It is available on Amazon. Conference in Amy White one of the Recent articles have appeared about Lisa Mann, a Lew is hoping to arrange a half day conference in London
with Dr Jacob and a neurologist from the South and one from London
in October, they can provide space for free for 100 people next to
Kings Cross Station, ECHQ Building. Meeting closed Next meeting |