Minutes from Poole & Bournemouth Transverse Myelitis Support Group Meeting

26th July 2008 at 2pm, St George’s Hall, Oakdale, Poole

 

 

Present: Mary Bergin, Andrew Berry, Patrick & Janet Biss, Teresa Bryant, Angela & Lance Harris, Clive & Laura Harris, Barbara & Barrie Houston, Phil & Connie King, Mary McRobie, Jacqui Medway & her mum Lorraine Perham, Malcolm & Mary Plested, Barbara & Peter Poll, Gill & Alan Rowe, Yvonne Trapp, Kath Vincent, Jean & Roy Wright, and Robin & Val Young

 

Apologies: Judy Stanford, Frank and Jane Devine, Graham & June Ward

 

Fatigue Management – Alison Nock, Occupational Therapist

Ali told the group that 85% of MS sufferers report fatigue as their major symptom. This information has been well researched. Unfortunately TM has not been so well researched, and therefore Ali was going to deliver her presentation from a MS perspective.

Fatigue research is now being further researched through a 6 week programme, with patients meeting once per week. A comparative study is being carried out with a group meeting versus individuals.

 

Various words were offered as to what fatigue meant, including exhaustion, feeling washed out, battery gone, wiped out, lethargic. The definition offered by the MS society is ‘A subjective lack of physical and/or mental energy that is believed by the individual or caregiver to interfere with usual or desired activities’.

 

Causes include weakness (more effort/energy needed), disturbed sleep (could be caused by caffeine, blackcurrant, drinking after 7.00, spasms), medication (the side effects), depression (depression/low mood effects energy levels) and nerve fibre fatigue (repeated activity, such as walking some distance, can cause nerve fibres to become fatigued [foot drop, leg limp for example]) can be a problem. The best thing to do here is rest/recharge before you are tired. Other causes of fatigue include infections such as colds, flu, urinary tract infections, exertion, deconditioning (the body slowly gets used to lower levels of activity, so it is important to get the balance right between pushing yourself and doing nothing. There is a MS exercise programme DVD which you can purchase for £1) and your environment (where you live, who you live with, how you are going to spend your energy [use your energy for the things you have/want to do and not for the things you don’t]).

 

It is really important to conserve your energy. One useful tool is a fatigue diary, to fill out during each hour what you are doing, and give a score out of 10 for fatigue. You can then look to see if there is a pattern, and you may be able to see where the fatigue has come from. Is it physical, cognitive, social? Get it to work for you.

 

Take frequent re4sts, particularly if you have nerve fibre fatigue.

 

It is recommended that you take 4 set rests a day, of 10-15 minutes. However, we all have different ways of resting. It is recommended that you do nothing – doing anything at all involves part of the body moving. The body needs rest in order to recover.

 

Prioritise activities – think about what you do - what you enjoy and can keep hold of, think about what you can delegate, and what you can get rid of altogether. Have your life in balance. When you have limited energy, only do the things you have to. During the day you have different energy levels, so plan ahead. A weekly timetable may help.

 

Organise tools, materials and work ahead. Examples are sitting down on a perching stool rather than standing, which then allows you to stand for the activities you want to stand for. You need to learn to pace yourself.

 

Adopt good practice. Certain postures take more energy – standing requires the use of more muscles, sitting gives support, but lying down minimal energy is needed.

Lead a healthy lifestyle and exercise. A big, heavy, hot meal can be fatiguing due to the energy required for digestion. Ensure you have at least 5 portions of fruit/vegetables per day, and drink plenty – hydration is really important.

 

You might get frustrated at not being able to do what you used to do, so you might push yourself to get through tasks. You need to ask yourself:

What do I want to achieve today?

How do I want to use my energy?

Set yourself small goals. A fatigue diary can show you what you are doing/achieving.

Stress can cause relapses.

It is worth linking with the MS Society.

 

Many thanks to Ali for a most useful and informative presentation.

 

AOB

  • Teresa is standing down as Chair, to become Vice Chair. Mary Bergin will be the new Chair. Teresa felt that with now working full-time, she could not dedicate sufficient time to TM.
  • A display board has now been purchased from our funds. Many thanks to Mary McRobie who raised money for us through her craft group. More resources for members are also being purchased.
  • It is worth looking at the latest TMA journal, in which an overview of TM was given (Patient Care). This article would be useful to hand on to health professionals such as GPs.
  • Connie is a Webpage Designer, and is in the process of creating an effective webpage for us, with relevant links. Many thanks Connie.
  • At the next Liverpool meeting to be held in September, the new TM consultant for the UK (Anu Jacobs) will be attending. Our new Chair is also hoping to attend.
  • The group was asked for their thoughts regarding a social trip, perhaps before Christmas to Street. Would December be a good time? Val Young will be contacting members to gauge interest.
  • Mary Bergin has visited the MS Centre at West Parley – she attended their Quiet Room Open Day 11th July. They have agreed that we can use their services, including physiotherapy. Roy Wright has already been along for a physio assessment, and Lance also attends. The Centre is open on Mondays, Tuesdays and Thursdays, where there is always a neuro physio in attendance. Please join the Bournemouth group – it only costs £5 per year. On becoming a member, then a senior physiotherapist will assess you, and then you can access their services. Application forms were available at the meeting. The MS Society also only costs £5 per year to join.

MateS, which Tim Worner runs, is a social branch of Bournemouth MS group, which meet monthly. More information can be found on the Bournemouth MS website.

·         The next meeting is set for Saturday 25th October