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Guest blog: ‘Someone who is independent, who doesn’t know me but just wants to support and help …’

Posted on: October 10 2019

Adam.jpgAs part of our series of blogs today for World Mental Health day, Adam tells us about his first counselling session with MS-UK and how he felt supported to open up to someone who was completely removed from his experiences of living with multiple sclerosis…

‘I was first diagnosed with multiple sclerosis (MS) in March 2018 after one episode of symptoms. After I was told the news I was initially in a state of shock and just remember my wife bursting onto tears. I didn’t want to see or speak to anybody and I just couldn’t believe what was happening.

‘I have four children and all I could think of was them. I had a million questions in my head. How would I look after them? Would they end up looking after me?

‘The biggest feelings were ones of guilt and helplessness. I felt like the diagnosis meant my life was pretty much over and I would be a burden to those I am closest to. The feelings of helplessness were due to the lack of information and the unpredictability of the disease. Everything is a ‘maybe’ as each person is different so it’s a difficult diagnosis to understand and explain to others.

‘I found the information booklets produced by MS-UK and the MS Trust a great way of not only explaining the condition to friends and family but also for me to understand the condition and that the things I was feeling were normal.

Counselling

‘I saw a tweet from MS-UK which mentioned the counselling service and I thought to myself that it couldn’t hurt to try. The idea of counselling did have an appeal.

‘I feel lucky as I have a great support network but it’s hard sometimes when you do want to talk about MS but don’t want the guilt of burdening someone close to you. I did have reservations, mainly because it was a new experience and that unnatural feeling that comes from sharing things with a stranger. Fear of being judged came into it as well, although I quickly realised this was not something to worry about.

‘The first session left me feeling so positive. It was just so nice to have someone really listening. Someone who is independent, who doesn’t know me but just wants to support and help.

‘When we went through the initial checklist of things I may be struggling with, I did have a realisation that some of them were affecting me more than I thought. You do wonder how talking through things will actually help and this is perhaps the biggest reservation, but after just one session I absolutely understood how I could benefit from the service.

‘Counselling has helped me really think about my needs and gave me the opportunity to be reflective in my thoughts about how I interact with people, what I enjoy doing and how to feel positive about the future.

‘This service also helped me feel empowered to talk through some of the anxieties I was feeling living with MS. It really did feel like a journey and I do think about decisions and choices in a different and more positive manner.

‘I have definitely got better at recognising the things I’m proud of now, no matter how small. Using the MS-UK counselling service has made me realise that sometimes the simplest achievements can be proud moments to celebrate.’

About MS-UK Counselling 

MS-UK Counselling is confidential and open to anyone living with multiple sclerosis. MS-UK counsellors are registered or accredited with the British Association for Counselling and Psychotherapy (BACP) with knowledge of MS and its impact on mental wellbeing. MS-UK is a BACP organisational member and our number is 275169.

Register online today or call us on 01206 226500 to find out more.

MS and supported exercise options

Posted on: October 07 2019

When it comes to exercise and multiple sclerosis (MS) we know exercise has been shown to improve the overall health outcomes for people with MS. However for people living with MS there are often many barriers to adopting a well-planned bespoke exercise programme with an emphasis on health and wellness.

One area that the MS-UK Helpline often offer support is mapping out where people can go to find supported or assisted exercise in their community that will understand MS or have experience of supporting people with long term conditions.

There are around 60 MS Therapy Centres in the UK. All are independent charities and offer a variety of different types of exercise and physiotherapy. The common theme across all of the centres is ‘self-help is our way of action’. Many of the larger centres may have support groups, MS nurse clinics, counselling and benefits advice. Some of the smaller centres will likely be volunteer led, only be open a couple of days a week and only offer limited services.

From looking at what kind of exercise support is available we have seen examples ranging from gym work to hydrotherapy, from yoga to Pilates, from chair aerobics to specialised power assisted exercise equipment. The centres also offer various other therapies, some of which include oxygen therapy, massage and reflexology. If you have a therapy centre near you, it is worth seeing what services they provide.

The therapy centres are a great resource but there are many areas that do not have a centre and where options are few and far between.

What if there is no centre nearby, or you don’t really know what you are looking for, and maybe feel that a general gym isn’t quite enough? To find a gym instructor with a good understanding of MS or knowledge of exercises suitable for people with a long term condition can be tricky.

Having an assisted exercise and bespoke tailored program to suit your needs can make the whole experience much easier. Having something designed specifically for you can help to ensure that exercise will be maintained and you can stick to it over time. This can, therefore, help maintain ability, develop stamina and instil more confidence.

If there is no MS therapy centre near you there may be other options. There are some MS specific organisations that are not therapy centres that offer physio and exercise support. The MS Research and Relief Fund are based in the North East of England and offer a wide range of physiotherapy and fitness support from one to one sessions, seated exercise, exercise bikes, Pilates, classes and a vibrogym.  They offer outreach across the region to enable as much accessibility as is possible.

MS-UK has a wellness centre Josephs Court in Colchester. The centre is open six days a week with some evening availability too. There is a range of specialist neurological rehabilitation equipment and power assisted exercise options, as well as items that you would expect to see in a more traditional exercise and physiotherapy environment. The centre also offers pain management services (APS therapy) complementary therapies, physiotherapy and social activities. 

The MS Society and the majority of its local branches will offer some kind of activity and exercise options. They also have an ‘MS Physical Activity Specialist’ service who can be contacted via their helpline service. The MS Physical Activity Specialist can help find accessible activities in the area, complete an assessment of your needs, create an action plan and offer ongoing support over a 12 month period.

If you were wanting to exercise at home or at your local gym and were wanting to follow a programme developed by someone with a good understanding of MS, it may well be worth looking into connecting with Dom Thorpe. Dom is a specialist coach working with people with a disability. He has specialist programmes for people with MS called the MS warrior training programme and the MS custom fit programme. His services are chargeable. He does also have a Facebook group called ‘Multiple Sclerosis (MS) Fitness & Exercise Motivation with Dom Thorpe’. In this group, Dom and the members of the group share tips and give peer support to each other to help with exercise goals. Dom also has a series of YouTube videos which may be useful for you. He has worked in partnership with the MS Society to develop a programme that may well support you with work outs at home.

Mbodies Training Academy is an education provider specialising in Continued Professional Development (CPD) education for Physiotherapists, fitness focused medical professionals, Pilates Instructors and advanced fitness professionals. Mbodies have training and qualifications titled ‘Understanding Multiple Sclerosis for Exercise Professionals’, ‘Exercise for MS Specialist’, ‘Pilates for Multiple Sclerosis Specialist’, ‘Pilates for Neurological Conditions’, and ‘Exercises for Neurological Conditions’. The Mbodies website has a search for an instructor function to help you find a qualified professional near you.

More information

We have now published part two of this blog. If there are any options that we have missed, please do drop us a line or call 0800 783 0518. We always listen to people affected by MS and it will inform the work of Helpline in future.

Read part two

'How a Lottery Bonus Ball draw helps me to fundraise at work'

Posted on: October 04 2019

Our Community Fundraiser Ian Robertson tells us about his experience with setting up a Lottery Bonus Ball at work to raise money for MS-UK.

Having run multiple marathons for charity in the past, I wanted to find a new way to raise funds with friends and family, so this year I have set up a Lottery Bonus Ball draw. It’s simple, easy to set up, run and gives people a chance to win some cash while raising funds to help people living with multiple sclerosis. It’s a win-win!

The basics are that people select a number between 1 and 59, and if that is drawn as the UK National Lottery Bonus Ball, the person who has chosen that number wins the prize pot (excluding a 20% charity donation). Simple!

If you don’t have 59 players, then no problem. If no one has selected the Bonus Ball number for that draw, the prize fund rolls over to the next draw.

To set up a Bonus Ball draw, just follow the below steps.

  • Decide which draws you will use for the Bonus Ball draws. I started with just the Saturday draw, but upped this to be both the Saturday and Wednesday draws (as it means two chances to win a week)
  • Decide on how much to charge. I chose £1.00 per week (effectively £0.50 per draw) so as not to be too much as to put people off entering
  • Decide on what proportion of the entry fee will go to MS-UK. I selected 20% and this is a great balance between the fundraising and having a nice prize fund to keep people interested

I asked the players to pay for five weeks (10 draws) at a time. This reduces the hassle of collecting money every week and made the charity share calculation nice and easy (as with a 20% charity share, £1.00 goes to charity from each person’s £5.00 entry).

All you need to do is either let the players choose their number (on a first come first serve basis) or get them to draw an available number from a hat. Then they keep that number going forward.

Each Monday and Thursday, I check the bonus ball drawn in the main lottery draw and if someone has chosen that number they win the prize pot. If no one has chosen the number, the prize pot rolls over into the next draw.

The other rule we have is that new people can only join the syndicate immediately after someone has won, but before the next draw.

I’ve been running my syndicate at work for three months and so far we’ve shared out over £180.00 between three winners. We have raised £75.00 for MS-UK! With just 21 players, by the end of the year, this will have added more than £200.00 to my fundraising total.

If you need help setting up your big money balls at work, you can email Lucy via lucy@ms-uk.org or call 01206 226500.

MS-UK attends medicinal cannabis event

Posted on: October 02 2019

MS-UK was invited to attend a medicinal cannabis event in London on Monday 16 September. The event was set up and facilitated by Medical Choices UK a non-profit medicinal cannabis and education organisation. Its mission is ‘to help bring medicinal cannabis to those who need it by educating those who can prescribe it and lobbying those who can improve access’. MS-UK’s Helpline and Information Officer, Ryan Jones and Head of Services Diana Crowe went along to find out more.

The event gave information on:

  • The history of cannabis use as a medicine
  • The human Endocannabinoid System (ECS)
  • How Phytocannabinoids (naturally occurring cannabinoids) from cannabis plants interact with the ECS
  • The scientific and clinical evidence for prescribing in various conditions and symptoms
  • Current research
  • Dosage forms and pharmaceutical presentations
  • The UK prescribing pathway and regulatory system
  • A patient perspective - a description of efficacy

Amongst the very knowledgeable and experienced presenters was Dr Julie Moltke who qualified as a Doctor at Copenhagen University of Medicine and studied in both Stockholm and Paris. She has a strong holistic approach, a passion for mental health and is a certified yoga and mindfulness teacher. She has set up an online magazine-style website called ‘dosage’. As part of her work Julie is currently travelling the world and exploring the cannabis industry.

After the event, Ryan said, “One of the things that I took away from Julie’s presentation was to dispel the common myth that Cannabidiol (CBD) is not psychoactive. Julie said that CBD still has an effect on the brain, so is therefore psychoactive, but is best described as ‘non-intoxicating’. That makes a lot of sense and has cleared up a misconception that I held”. 

We also heard from a Director of Medical Choices UK Michael Platt who is an anaesthetics and pain medicine specialist based in London. He has been a consultant and honorary senior lecturer in pain medicine and anaesthetics since 1991. He recently became the medical director at Sapphire Medical Clinics, a new clinic for medicinal cannabis. He gave a good round-up of the current evidence and data available relating to medicinal cannabis and spoke passionately about being pleased that he now has another ‘tool’ to treat pain.

Most interestingly, we also heard from Jason Jordan from Perth, Western Australia, who lives with primary progressive MS and is a medicinal cannabis advocate. Jason was the first person in Australia to have been prescribed medicinal cannabis and he described its effect on his quality of life as a ‘game-changer’. He was quite explicit about the fact that he was not a recreational cannabis user and that he had been able to manage his symptoms so much better since receiving his prescription. 

Both Diana and Ryan both came away from the event feeling more informed and a little clearer about how medicinal cannabis can be accessed here in the UK.

For more information about cannabis and MS download our Choices leaflet here

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