Present: Mary, Andrew & Drew Bergin, Andrew, Amanda & Alysha Berry, Patrick & Janet Biss, Teresa Bryant, Frank & Jane Devine, Marionette, Julian & Henry Fryern, Wendy Greenhaulgh, Lance & Angela Harris, Keith & Lin Hooper, Barbara & Barrie Houston, Sue Hyatt, Enid & Ted Jones, Connie & Phil King, Mary McRobie, Malcolm & Mary Plested, Peter Poll, Peter & Rita Reynolds, Gill & Alan Rowe, Barbara Sadler, Judy Stanford, Yvonne Trapp, Kath Vincent, Graham & June Ward, Jean & Roy Wright, and Robin & Val Young

Apologies: Georgina Bailey, Elaine Knowles, Alison Ridout, Amy White

The meeting opened with a talk by Dr Caroline Hutchings, Rehab Consultant at Southampton.
She deals with the phase following diagnosis, to minimise the impact of the injury on people’s lives. There are 14 beds in Southampton, dealing with patients following strokes, head injuries, MS and occasionally TM (about one per year over the last 10 years). There is a community rehab team – they may visit patients in their homes, bring them to the gym, or even go to work places.
Rehab means many different things, as an injury/illness affects everyone differently. The World Health Organisation has come up with a structure to help:
Function – which bit of the body isn’t working, what is the best it can do
Ability – what that part of the body isn’t able to do, what can be brought in to do
Participation – what you would expect somebody of that age, culture, sex, to be able to do

Some examples:

• 2 people suffer from a similar stroke. The function is the same for both, as is the ability. However, participation for a 98 year old is very different to that of a 35 year old.
• Someone with a broken arm – some ability is lost, such as writing, driving, dressing. However, participation will be different according to the person’s role, e.g. that of a netball teacher will have different participation requirements to a cyclists.

Rehab is not just concentrating on making someone’s gait perfect, but tackling a big step.

It can take up to 4-5 years to work out the ups and downs – why it happened to me, etc.

As TM affects the spinal cord, what happens to the body depends upon the level of injury, where the inflammation occurs

Various elements of the body will be impacted upon – e.g. muscles, skin, sensory changes, and fatigue, pain, possibly continence issues will come into play.

PAIN – this comes from the fact that the cord takes sensations from the skin back up to the head. With an injury such as a burn, one can see the damage to the skin. However, with nerve damage, there is nothing to see, nothing to show, the skin looks normal to other people, who won’t be able to understand the icy/prickly/painful sensations you are experiencing. The skin sends messages – for example, I am wearing socks, but from previous experience, my brain recognises the feeling and can put it in the background and ignore it. Post TM, though, the signal does not get through as before, so the brain cannot confidently say it is only socks, and it translates as pain.
Hopefully a painful sensation will get better, but id doesn’t always, so you may need to learn to live with it – rehab helps.
By the time a patient is discharged from rehab, they are controlling their symptoms rather than their symptoms controlling them. The patients are in charge!
Some physical things that may help with pain are touch, a hot water bottle or a TENS machine (which might help the brain readjust). Medication for neuropathic pain includes Gabapentin, Carbamazepine, Amitryptiline and Pregabalin.

FATIGUE – a big event has occurred, but it is not visible. If one has had surgery following a burst ulcer, there will be a scar to show, it is a visible reminder. But with TM there is no such sign, so you don’t remember how big the event was. You need time to recover from the illness itself. You might get more tired than you did before, but it can also relate to the fact that you are now not as fit as you were before. This may be long term, so you need to work with it and establish parameters. Try to be as fit as you can in your situation. The fitter you are, the easier it is to cope with fatigue. Over time, it gets easier as you do it. Build up to things e.g. if you were sitting to peel the vegetables, try standing for longer and longer. At Southampton, there are seated activities so that fitness can be moved forward.
Think about the pattern of your week. On an ‘able’ day if you are not careful, you do as much as you can, but collapse the next day or at the end of the week through exhaustion. Try to do even amounts on good and bad days. Listen to your body and rest if you have to have a busy day. Work out how your own fatigue fits in with your own lifestyle. Also, if you are on medication, check that this is not making your fatigue worse.

MUSCLE WEAKNESS – the nerves supply the signals going up and down. Post TM, the signals can’t get through. As the muscles need the nerves to move, the muscles become weak - which muscles will depend upon the level of injury.
Muscles can also get stiff. Reflexes keep limbs stiff without thinking about it. If you want to move, the brain damps down the reflex to allow movement. After TM, the reflex stiffens.  At rehab, they will investigate how much spasm/stiffness a patient is dealing with, and how they are dealing with it. The patient will work towards the situation when they are in control of their spasms.
There are 3 levels of intervention:

• What is setting the spasm off – new shoes, something irritating you. How are you dealing with it – are you stretching muscles – more stretch, less spasm; exercise. Standing is a very good exercise for stretch. Are you using your spasm – if you are stiff, it may be keeping you upright.
• Drugs make stiff muscles less stiff. These include Baclofen and Tizanidine (need blood tests at the beginning)
• Botox to weaken a particular muscle

What else can influence spasms? Changing position can have an effect. Environmental temperature causes change – can influence what muscles feel like. Post TM, governing body temperature above the injury still works, but below injury it does not manage it as well because the nerves to the skin (which govern body temperature) have been affected. Therefore it becomes cooler.
A cold muscle is a stiff muscle, which becomes looser when warm, and floppy when hot.
Sometimes a light touch can feel painful, whereas a firm touch doesn’t. The reason for this is that there are several different nerves for feeling. A light touch is mediated by one particular fibre, a needle prick is mediated by another, space awareness by another, and a deep firm touch is mediated by a combination. It is related to the way the brain has learnt to interpret the message.

Dr Hutchings was then thanked by Mary for her very informative talk, and she was presented with a bunch of flowers.

After the break, Mary thanked the committee and others involved for lunch and teas. Everyone agreed that lunch had been a great success.
She attended the meeting in London 17th January, when Professor John Scadding talked about Neuropathic Pain. Following is the information she came away with:

• 1.34-4.6 per million of the population has a TM diagnosis.
• He talked about normal pain (Nociceptive pain); if it is bad it can exacerbate the neuropathic pain.
• Allodynia is the unpleasant sensitivity to the skin, banding , painful when touched or clothing, this is worse when the central part of the spinal cord is effected (the lesion). The banding sensation is neuropathic

Factors that effect pain in TM

• Physical, depression, anxiety, sleep pattern, fatigue, effects on work social withdrawal, at worst if not able to control pain this can have an effect on how the response the patient can get from medical services.

Treatments

• Muscular skeletal, postural physio, it is never too late to get input
• Spasm/spasticity, bladder/urinary tract infections, constipation treatment

            If they are all there, then neuropathic pain is worse.

• Stimulation machine - Functional Electrical Stimulation (FES) – Yvonne and Malcolm both have this
• Acupuncture (Andy Berry)
• Physio can help pain
• Drug treatments - Anti-depressant drugs, (not because they are depressed), anti-epileptic, Gabapentin is the least likely to cause problems and the side effects are different for each patient. Opioids, cannabis, named patient basis, but in Canada it is licensed for patients with MS with bladder problems.
• Surgical treatment - Cutting nerves around the spinal cord, the damage from the surgery can cause more damage.

Psychological measures

• CBT can be useful in general as opposed to pain relief management

Access to Treatment

Pain clinics
Neuro rehab services
Local variation around the UK
www.britishpainsiciety.org

Your local neurologist should advise.

Mary informed the group that the financial audit would take place in April.

Connie was thanked for all her work designing our web page. There have been many positive responses from a range of sources. She suggested we looked at the links, in particular Facebook, Amazon and Giving Machine.

Mary told the group about the TM wrist bands, which are available at a cost of £2 each.

The display boards had been set up, with a lot of information available. The book
Auto-Immune Epidemic is available to borrow – see Sue for this. There is a book called In My Dreams I’m Dancing, written by TM patient Ruth Wood, which can now be ordered.

Frank’s employer SERCO has donated £300 to the group – many thanks.
Patrick & Janet Biss’s sons are going to do a Sky Dive 26th April (weather permitting) to raise funds (half for Young Farmers, half for TM – check web page for information re sponsoring. The Young Farmers have already held events which will lead to donations to TM. Mary informed the group that she is considering a suitable fundraising event – perhaps ‘wing walking’ or abseiling off Tower Park water tower – watch this space!
The money raised from today’s lunch will go towards a group social activity later in the year. We will need ideas and suggestions from the group by next meeting to plan for something later in the year. Please let Mary, Teresa or Barbara know your ideas by phone or email.

There is an MS Pathway on the Department of Health Website under National Service Frameworks which is worth a look at, and on the MS Trust Site for diagnosis and treatment, which acknowledges clinically isolated syndromes covering TM, ON, NMO. These patients have an entitlement to MS nurses. However, the nurses are already overworked so there is difficulty getting referrals. Disability Action at Christchurch may be of help to some people – Robin has an MS nurse via this route. Disability Action have just received extra funding to increase the number of nurses. However, you need to be in their geographical area, and will need a referral through your GP

The Neurological Alliance website Neural Hub has a new forum with chat on Neurological issues.

Gill Rowe pointed out that the Hampshire Neurological Alliance, of which she is the TM member, is to have its launch 16th March at Alton. The Alliance is to improve the equality of services for all neurological conditions. This information will go on our website.

Val Young was thanked for her card making.

The next meeting is to be held 25th April, when Gill Miles, Continence Nurse Specialist, will be talking about neurogenic continence issues, intermittent self catheterisation, catheter care, etc.

Mary hopes to have Val Mitchell, Care Services Manager in Poole coming to the October meeting, to talk about the role of the carer. It is hoped to have both rooms booked, so that she can talk to the carers away from those being cared for.

If anyone is interested there is still a vacancy on the committee for Social Events Organiser.