The relief of diagnosis

Source Multiple Sclerosis Net: Being diagnosed with an incurable, chronic illness such as Multiple Sclerosis is never a pleasant experience. However, for many people, getting that final confirmation creates an extreme sense of relief.

That sounds pretty peculiar to many people, as getting a diagnosis of Multiple Sclerosis is not an easy process. With no single test to determine the presence of the disease, symptoms that can mimic other illnesses, and doctors that may not be well qualified enough, the road to an MS diagnosis can be a long and uncertain one. After a long journey like that, finally understanding what is wrong with you can bring about a sense of calm and peace, despite what the future may hold.  Read on.

The MS kids are alright

Source MS Trust: How your children will cope with your MS, is an ongoing concern for the majority of parents following diagnosis. Here Martin Baum, who was diagnosed with MS over 20 years ago and his son Josh, discuss how they coped and the impact it has had on them over the years.

Many years ago, when our son was about four or five, my wife and I were given a booklet.  It was called, I think, My dad has MS, or something like it.  It was a guide to help a child understand the complexities of having a parent living with Multiple Sclerosis.

As far as it went, it did exactly what it said on the front cover by explaining about the effects of MS in a child-friendly way.  This was something we appreciated greatly.  After that life, as they say, carried on while we tried our best not to make a big deal about my relapses no matter how much my MS was impacting upon our family life, 

The last thing we wanted to do was to add to his growing pains.  Life’s hard enough for a child as it is but, nevertheless, we never hid anything.  We tried to be as honest as we felt we could about why dad didn’t go bike riding or have a kick around in the garden.  This was his normality.  This was our reality.  Read on.

More sad news

Sue Alexander from Cholsey passed away last Thursday (husband Chris).  Sue had not been at the centre for quite a few years but used to be a regular on a Thursday having oxygen.   I do not have any details about funeral arrangements yet.  

Great holiday venue for disabled people and carers

One of our disabled members (in a wheelchair) has recently come back (and went last year) to a Revitalise Holiday.    They cater for every type of impairment including MS, Stroke, Dementia, Parkinsons and many more.  They have specially designed accessible excursions, live entertainment and daily activities supported by CQC-regulated care support.  They have three locations in Southampton, Chigwell and Southport. If finding money is difficult funding could be available.  2019 brochures are available at the centre.  If you book a holiday 30 days from the date of the letter I have (14th March) and you quote code BR19 you will receive £150 discount (new guests only).  For more information about Revitalise visit www.revitalise.org.uk

AGE UK – disability exercise class

AGE UK – disability exercise class:

White Horse Leisure Centre, Abingdon

1-2 on a Monday

Wheelchair users welcome, bars available for stability and chairs

£3.30

Cafe and parking onsite.

Pilates Class for people with MS

There is an open morning for Stott Pilates next Tuesday 19th ( no charge for the open morning).  The class is from 12.30 to 1.30 pm. For individuals with MS, the class is subsidised by West Oxfordshire MS society. For anyone else who is attends, it is £10 per session. 


The instructor is very experienced, and has done a course on working with people who have MS. Address: Oxfordshire  Pilates Ltd, Balance studio, Bridge Street Mill, Witney, OX28 1YH.

NEEDED: Recycled Inkjet Cartridges

Each wanted cartridge that is recycled will raise £1 for the charity.

Over 188 Inkjet Cartridges

Makes you can recycle include HP, Dell, Lexmark, Canon, Samsung, Neopost.  

Inkjet cartridges must be in suitable condition to be recycled. 

Recycling Criteria

Only virgin cartridges on our wanted items list raise money for charity when recycled. All inkjet cartridges must pass a visual inspection & electrical test. “Virgin Cartridges” mean cartridges which have not been refilled before and carry only the original equipment manufacturers branding.

We do not accept laser & toner cartridges through this recycling service. 

Cartridges don’t have donation value if:

  • Damaged
  • They have been previously refilled
  • They have been labelled for another brand like Tesco, PC World or Office Depo
  • They have labels removed or extra holes. (Signs that refilling has been attempted)

Innovative clinical research using robotic technology to improve balance & mobility for people living with MS

A ground-breaking clinical research trial is inviting people living with Multiple Sclerosis (MS) to take part in the evaluation of a balance exercise program using a robotic walking device. This trial is the only research trial in this field taking place in the UK for people diagnosed and living with MS. The trial is pioneering the use of a robotic walking device to enable and support a balance rehabilitation program for people diagnosed with MS, who have balance issues.

The research team is led by Dr Mohamed Sakel (FRCP, UK), who is Consultant Physician in Neuro-rehabilitation and Director of the Neuro-rehabilitation Service for East Kent Hospitals University NHS Foundation Trust (EKHUFT).  Dr Sakel regularly sees patients living with MS, who present with balance issues in his out-patient clinics throughout East Kent.  Dr Sakel is passionate about enabling and empowering patients, their families and carers and building further understanding of effective neuro-rehabilitation interventions for balance and quality of life.

Dr Sakel’s research team are passionate about gaining more understanding of how people living with a long-term condition, such as MS, can be supported to optimise their balance, wellbeing, health and quality of life. 

This unique trial is open to people diagnosed with MS, who are aged between 18 and 80, and are able to walk a minimum of 8 metres using a walking aid.  Interested volunteers are kindly invited to contact Karen Saunders (Consultant Clinical & Research Neuro-physiotherapist) either by email karen.saunders10@nhs.net or telephone 07920785768. 

For this trial, potential participants are invited to undertake a 2 – stage screening process (first stage by telephone, and second stage via face to face appointment in Canterbury).  Then, if eligible, the potential participant would be invited to take part in the trial.  The trial itself is based at Kent & Canterbury Hospital and comprises 7 appointment sessions over a period of 7 weekends.

The study is focused on the evaluation of a balance rehabilitation program enabled by the use of a Rex exoskeleton device. The balance exercise program is specifically designed to focus on increasing core body muscle strength, improving balance related skills and walking ability.  

There are 3 key objectives-

1. To evaluate the feasibility and safety of the Rex robotic walking device when used for rehabilitation with people, who have mobility restrictions due to MS.

2.To assess and evaluate the effectiveness of a 5-week robotic assisted exercise program focused on balance, mobility and quality of life using a range of patient related outcome measures, selected clinical scales and physiological measurements.

3.To gain an insight into the experiences of participants and their spouses/partners/close carer of using the robotic walking device for rehabilitation and how this has impacted on their lives.

20 participants (aged between 18 and 80) with a primary diagnosis of MS will be invited to take part in this trial. All potential candidates will have balance issues related to MS and be able to walk a minimum of 8 metres using a walking aid.  There are 2 screening stages and if successful at both stages, then eligible participants will be invited to take part in a five-week balance rehabilitation intervention program. The intervention comprises a once weekly Rex robot assisted balance exercise program under the supervision of the trial neuro-physiotherapist (Karen Saunders).  The aim of the program is to specifically increase core muscle strength, improve balance related skills and walking ability.  Within the trial, the device is used as an enabler to give the individual the ability to stand and walk easily supported by the device without the need of a walking aid.  The person is able to relax their arms and stand in an upright posture which enables balance rehabilitation exercises to be done safely and securely. The device is battery powered and controlled by the use of a joystick.

The response to the balance intervention program will be monitored closely and continuously by Karen and the Principal Investigator, Dr Mohamed Sakel.  Participants will be progressed throughout the treatment program as appropriate and a range of standardised assessments, questionnaires and clinical scales will be used to measure change related to this trial.  The trial is further enhanced by a qualitative research study, in which individual participants will be invited to take part in 1 to 1 interviews and spouses and partners will be invited to take part in focus groups.  This will enhance the understanding and insights gained of how participants have experienced this new rehabilitation intervention and how this has may have impacted on their lives and those of their spouse/partner.  

Research shows hot chocolate could help reduce fatigue

Source MS Society: We know around 90% of people with MS experience fatigue, which can severely impact their quality of life.

Researchers at Oxford Brookes University looked at whether flavonoid-rich hot chocolate was able to provide a benefit to people with MS fatigue. 40 people took part in the trial – half drank a flavonoid-rich hot chocolate drink once a day for six weeks and the other half a low-flavonoid alternative.

They found that a daily drink of flavonoid-rich hot chocolate could have a positive long-term effect on fatigue. It is thought that the drink could also influence mood, cognitive performance, and the ability to perform certain movements. Flavonoids (a compound found in various plant-based foods, including raw cacao) are known for their high antioxidant properties, and researchers believe their positive influence on MS is because they reduce inflammation in the body.

The results from this feasibility trial – the first of its kind – mean researchers are one step closer to giving people with MS another way to manage their fatigue. Read on.