April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
MS-UK’s Wellness Centre, Josephs Court works closely with the University of Essex to support occupational therapy students (OTS) by providing role-emerging placements while they train.
Each year the Josephs Court team is invited to speak at a symposium with the new OT recruits about role-emerging placements at its Wellness Centre in Colchester, Essex and increase their knowledge of multiple sclerosis (MS).
Diana Crowe, Head of Services, said: ‘We took the opportunity to promote all of our services, but focused on what we deliver at Josephs Court, such as the exercise equipment and the benefits this brings to clients.’
‘There was good interaction and we were asked about the social activities we provide, so we discussed the MS-UK Social Group in Colchester, which has regular coffee mornings and other events such as bingo!’
‘Due to recent headline news regarding HSTC there was an interest in how this treatment could impact on us as a charity and our clients. Just like everyone else we will have to wait and see how the treatment develops, but we will continue to support people with MS for as long as they need us.’
‘We split into groups, which gave us a chance to speak in more detail with some of the students,’ explains Dean Jeffreys, Centre Manager. ‘The students were interested to know about APS Therapy, how we link up with other services and how politics impacts on our strategy.’
Speakers from St Helena’s Hospice spoke about its gardening project for those at the end of life and Craig, from Pots the Soldier, spoke about his post-traumatic stress diagnosis after leaving the army and how he found a love of pottery thanks to the support of OTs – very inspirational!
‘It was great to see the students so interested in the work MS-UK does and we hope to continue to work with Essex University over the coming years. Who knows one day we may have our own MS-UK Occupational Therapist,’ adds Diana.
We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
With most of the country feeling the big freeze, here’s our top tips for travelling safe and keeping warm…
Find out more about our services to support people affected by multiple sclerosis (MS) on our website.
In February 2018, there will be a 2 day Switch2Move workshop in London. Open to any Movement Practitioner and Care facilitator, such as gym teachers, dancers, art-therapists, managers in Healthcare, etc. this workshop will offer tools and guidance to encourage novice learners to discover new realms through creative movement. The workshop will be led by Andrew Greenwood, who cofounded the organisation Dance for Health and created education programs specialised for people with conditions such as multiple sclerosis and Parkinson’s.
There will be a free open demo class on the Sunday morning and Andrew would love if any people with multiple sclerosis or other mobility challenges could attend!
If you'd like to take part in this you need to arrive by 10am, and wear comfortable clothes and shoes. This open demo class is free of charge, and you can take someone along with you. It will last up to an hour and half, which includes some time for feedback. Andrew's main aim is to communicate to wider society and especially to the medical world that dance can be a source of health and wellbeing. You can find out more on the Switch2Move website now.
In October last year, we launched MS-UK Counselling, a brand new service for people living with multiple sclerosis (MS). We were delighted to welcome Nileema to the team as our Counselling Coordinator, and in December Jonathan and Wendy joined the team. We are all BACP registered or accredited, have many years of counselling experience and are trained in working with people with MS. So we think it’s time you get to know the latest additions to our team!
Hi, I’m Nileema. My interest in counselling started when I first had counselling myself over twenty years ago. I saw the massive difference that counselling made to my life and felt inspired to train as a counsellor many years later. I have found that no matter what the problem, there is a space for it in counselling. I have worked with individual and couple clients. I also provide training and clinical supervision to counsellors. I was really excited to join MS-UK in September 2017 to lead this exciting new service. My role is to run the service, carry out assessments with clients, ensure that we are legally compliant and work to high ethical standards, as well as provide counselling.
Hi, my name is Jonathan. I decided to train as a counsellor after appreciating the importance subjectivity plays in our lives, and the uniqueness this holds when attempting to understand our circumstances. I am an integrative counsellor and have particular interest in the role that attachments play in our lives. One of the principles I strive to offer is autonomy, which is the respect for the client’s right to be self-governing. My intention is to offer choice to the best of my abilities, and aim to reflect this through a discussion of your expectations during our work together.
Hi, my name is Wendy. I used to work as a learning support teacher and I became aware at the time of how children and their families needed additional support through counselling. I am a qualified person-centred counsellor here at MS-UK. I am really keen to support clients by helping them understand themselves in light of their MS. I have experienced the value that counselling can offer each individual through my own personal circumstances. As a team, we are proud to be offering the only counselling service of its kind across the UK. We believe that by listening to people affected by MS, we can shape a great service and offer something that people need and want.
In her latest blog Jo explores the effect of the cold on multiple sclerosis (MS), a very topical subject with temperatures dropping and the 'threat' of a white Christmas...
Sometimes I feel a bit like Goldilocks when it comes to finding the right temperature. I easily get too hot and I easily get too cold, in fact it can be rather tricky getting it just right!
It is well documented that heat can make MS symptoms worse. Usually only temporarily, but worse all the same. In fact in times gone by, before MRI scans and the like, the test for MS was to put the patient in a hot bath and see if the symptoms got worse. If they did you had MS and if not you didn’t. A bit like how they ‘identified’ witches! Except without the risk of drowning as hopefully they pulled people out if it made their symptoms too bad!
But a lesser known fact is the effect of the cold on MS symptoms. For some MSers that can be a real problem too. As the autumn starts to change into full on winter this is becoming rather difficult. I live in fear of snow and ice. It’s hard enough to walk with MS and a stick on level, dry ground, but to negotiate icy pavements or walk in the snow is a whole new level of challenge! And just generally trying to keep warm in winter is tricky. It’s ok if I’m at home with access to jumpers, thick socks and the central heating thermostat, but dressing to keep warm outside…especially watching football (either my son’s team or the mighty York City) is something I haven’t quite mastered yet. I’ve experimented with different types of thermals, socks, layers, gloves and hats, but to no avail. I’m seriously contemplating some heated gloves and I’ve seen a fabulous jacket with a rechargeable battery pack that powers heat in different sections…it’s a bit pricey though!
When I get cold it’s not just the usual unpleasant feeling of being cold, it actually makes my symptoms worse. My legs stiffen up, the tremors start, the pain gets worse and the fatigue hits me and because my internal thermostat is faulty due to the MS it takes a long time to get warm again. I usually dive under the duvet, fully clothed with a hot water bottle and wait for the thaw to set in…
I have recently found some hand and feet warmers (called Hothands) that are activated by the air once opened and last up to 10 hours. I tried them last weekend at a very cold football match and they helped a lot. I’ve just found that M&S do two different thicknesses of thermals too so I’ve ordered a thicker top to try. I’ve also bought some new thermal socks that have a Tog rating! Like duvets! Now surely they will do the trick!
So, I will continue to hunt for things to keep me warm, pray for another mild winter and look forward to warmer, but not too warm, summer days.
In this guest blog, Jamie Macpherson gives a personal account of how the ‘Overcoming Multiple Sclerosis’ program has helped with his multiple sclerosis (MS) and his life...
My story is an interesting one as both I and my Mother have MS, six years and twenty nine years respectively. My mother is now considered secondary progressive and confined to a wheelchair currently. I, despite been diagnosed with the label MS, consider myself the healthiest I've ever been and intend to be for the rest of my life.
Before the introduction of internet and more recently the findings and practice of George Jelinek there wouldn’t have been much help for my mother as there wasn’t even many options for disease modifying drugs. So this will have led my mother to only be able to try methods such as the oxygen chamber therapy or the will of God.
So as my Mother, Jeanette, slowly declined in health, I for a period of time became her run-around whilst my father Peter worked to keep a roof over our heads. All this time I’m doing this I am smoking, eating poor food, no exercise and unknowingly to me becoming ill with each day of this poor lifestyle whilst thinking ‘I’m wonderful because I’m helping my Mum!’
When I had my first episode of MS the pain was very hard to describe and something I would not like to go through again. Obviously I had all the tests MRI etc. and the confirmation by the neurologist was MS and his words were ‘go away and see how it progresses’ (lovely thank you very much)!
The state of my body at that time, other than having MS, included weighing 22 stone, a BMI of 38, waist size 42 and more importantly really low self-esteem and depressive thoughts daily.
What did I do? Well despite having a loving caring family of partner and two young children 13 and 9, I lost the plot and left home and sat for a time feeling very sorry for myself and my position in life.
Then one day I visited my Mum and she had a magazine delivered called New Pathways, which had a reference to a guy called George Jelinek, who had written a book called ‘Overcoming Multiple Sclerosis’, so I ordered the book and couldn’t believe the similarities that both he and I had had, Mothers with MS, and then sadly for George his mother passed away. Well this book gave me hope, a chance and an opportunity to maybe, just maybe, get out of this position and make something of my life.
I attended the seminar that George and his team held in Brighton in 2013 and was completely amazed at all the people that had been following the seven step program and how well they were doing.
Six years later my life is the best it has been ever. I now weigh 15 stone, my waist size 34, BMI around 18 my thoughts are of ‘what can I do today to help people like me?’How have I got here? Obviously the OMS program is a must and I follow as best I can daily. Other things I have implemented include, acupuncture once every two weeks with a fantastic lady, Gisela Conclaves, in Heywood Rainbow clinic, I only eat foods to my blood group, I take high doses of Vitamin D3 and daily flaxseed oil with Herbalife breakfast nutritional shake. More recently I have been trying the virtually no side-effects drug Low Dose Naltrexone which has been a real help in fighting the dreaded fatigue which I no longer suffer from.
Above all these I tell myself ‘Every day in every way I get fitter and stronger.’
Find out about the Overcoming Multiple Sclerosis program on their website.
Let’s play the MSer’s favorite game of cuts, scrapes and bruises. It’s time for….”How’d I Get That?”
Hmm, a bruise on your arm.
Ouch, that scrape on your knuckles seems painful.
What did you do to your leg?
My point is, living with multiple sclerosis, we tend to acquire many unexplained nicks, marks, cuts, bumps and bangs. Often we can’t explain how they happened.
Having no feeling from the armpits down, I collect skin abrasions like a donation bucket attracts pocket change.
I find marks on my body and have no idea where they came from. I don’t even feel the blood running down my leg.
Are we superhuman?
Do we have high pain tolerance?
Nah, we just have MS.
Are you one with multiple sclerosis who finds unexplained “ouchies?”
Tell us your side – but please don’t get any blood on the keyboard.
Be safe my MS friends.
Is your experience similar to Doug’s? Share your comments below!
On Saturday 28 October our clients at Josephs Court got together for our swinging 60s cyclothon – and it was a great day!
Thank you to everyone that got involved…you managed to clock up over 300 kilometres! Check out the Facebook photo album now.
The cyclothon event is part of our FES Appeal. We are aiming to raise £22.5k for a brand new FES bike for Josephs Court. This is our Essex based wellness centre for anyone affected by multiple sclerosis in our local area.
Thank you again for a groovy day everyone!
Diana Crowe, Head of Services