As part of Carers Week Mark gives his account of caring for his wife, Portia with multiple sclerosis...
Portia and I met at university, where we were studying architecture and landscape architecture. We were married in 1998 – around the same time Portia was diagnosed with MS.
You can’t anticipate what a progressive condition such as MS will be like. It’s different for everyone. We have had long periods of managing fairly well – including having our three children who are now aged 15, 12 and 10 years old.
There have also been periods of relapse. Day to day you don’t really notice the changes, but you look back over the years and can see how the condition has developed. 2014 was a particularly bad year, Portia spent a lot of time in hospital and we had the shock of finding out she had also developed epilepsy. It was a steep learning curve.
I’m an architect, and while my workplace has been very good at supporting me there have been difficult, uncertain times – especially when I’ve had to have unplanned time off while Portia has been in hospital. You know you’re not the first person to go through this, but it can feel that way.
Last year I set up a Carers’ Network at work which now has 150 members – including people who are caring now or have in the past, as well as people preparing for what could happen in the future. The best thing has been the opportunity to share our experiences and pool our knowledge. There’s always someone you can ask ‘How did you find this?’, ‘What can I do in this situation?’.
Portia and I are a great team, and we’ve always found a way round any challenge we’ve been faced with. Portia loves learning and is currently part way through an Open University course in Psychology and is training as an Art Therapist. MS may make the practicalities more difficult, but it doesn’t stop you living your life.
Celebrate Carers Week
This week is Carers Week. The annual awareness campaign celebrates and recognise the vital contribution made by the UK’s 6.5 million unpaid carers. The aim is to build carer friendly communities, places where carers are supported to look after their loved ones well, while being recognised as individuals with needs of their own.
Carers Week is a time of intensive local activity with thousands of events planned for carers across the UK. If you’re looking after someone, make sure you find out about the help and support available at www.carersuk.org.
For more information on providing care and getting the right support, read our 2-page feature in issue 103 of New Pathways magazine.
In this guest blog, Gemma tells us why she is running the British 10K 2017 for MS-UK...
Hi my name is Gemma, and I’m going to be taking part in the British 10K 2017 for MS-UK.
In April 2005 I met James. From the moment we met we just clicked as if we had known each other for years. There and then I knew I had met my best friend and the one I wanted to spend the rest of my life with and we have been together ever since.
In December 2006 I finished work as usual and walked home to get dinner on, ready for when James arrived home from work. When he stepped in the door I noticed that half of his face had dropped. At first I thought he had had a mini stroke!
While we waited for the taxi to beep that it was here, to take us up to A&E we discussed what it could be. ‘MS’ James said. His mum passed away when he was 9 years old. She had MS and was bed ridden. She had pneumonia and was not strong enough to fight it when she sadly passed away.
At the hospital he was told that he had to stay in over night to be monitored to then have an MRI test in the morning. I had to say goodbye and that night I stayed with my in-laws.
In the morning my phone rang. It was James. I answered it and he was just sobbing. At first I couldn’t make out what he was saying. ‘Demyelination’ he said. ‘What does that mean?’ I replied. ‘MS’.
That was the day our life changed for ever. At first we thought it was a death sentence. But it isn’t, it just means that you have to grab hold of life now!
In November 2007 we had our first child, a beautiful baby girl. But James was struggling at work. He is a fully qualified chef and has a passion for food. But little did we know that the heat/stress of the kitchen was flaring up his MS. So he went into butchery the following year but this also became difficult too. This was hard for me to watch.
In September 2009 we had our second child, a handsome baby boy. Our family was complete but James was now having 3-5 relapses a year. He was told to give up work. Every time he got over one e.g. loss of legs, sight. Another would hit him. I was now not working, to care for him too. He was also now on beta interferons injections. These were very painful and didn’t seem to be slowing the disease down, this scared me.
In August 2010 we moved from Norfolk to Hertfordshire. New doctors, new neurologist, new MS Nurse, it wasn’t easy. The relapses were still happening violently, especially on his left side.
In June 2011 James started Natalizumab (Tysabri) infusions every 28 days, these have been working, thankfully he hasn’t had a relapse since starting them.
It’s now 2017 and for the first time I feel like we have got this. Don’t get me wrong it’s still a massive hurdle in our life and there are good days and bad but you just have to try your best to adapt, to find a way to try and be a so-called ‘normal’ family.
I am doing this run now as I feel the time is right. James is my hero, he never moans, he just takes it one day at a time. I’m so proud of him and the way he handles it. Now it’s my turn to make him proud and be his hero.
I also want to show our children if you put your mind to something you can achieve anything.
In this guest blog Kristy-Jane Martin gives details of a new study looking into the effects of caring for someone with MS.
Research and clinical experience has shown that some carers of people with MS experience low mood and stress. Together, this is referred to as ‘carer strain’. Currently, there is no specific support available for carers in clinical practice. For any specific support to be made available through NHS services, research must show that the support that is provided is beneficial for carers of people with MS, and it should not cost too much. Carer strain and support has also been a topic identified by the MS Society as an important subject to focus on.
Acceptance and Commitment Therapy (ACT) is a talking therapy that has been found to be useful for people in distress. ACT teaches people to respond more effectively to difficult thoughts and feelings, so that they no longer are a barrier to living a full and enjoyable life. In the context of carer strain, ACT offers a range of strategies – including mindfulness techniques – that could help carers to better cope with their caring responsibilities and associated emotional demands. Our team has tested associated self-help versions of ACT on people with MS but not with carers of those with MS.
The study we are proposing will randomly allocate carers who are distressed to one of three groups: one group of carers will receive an ACT self-help book, one group will receive the ACT self-help book alongside telephone support from a trainee clinical psychologist, and a third group will continue with their usual treatment. The aim will be to compare the three groups 3 and 6 months after joining the study to see if there has been any reduction in carer strain.
The outcomes we feel might be of interest to carers are: carer strain, mood, and quality of life. We will also be looking at the cost-effectiveness of the ACT self-help to assess its applicability to the NHS.
The project will be carried out by Kristy-Jane Martin (Trainee Clinical Psychologist) as part of their doctoral training in Clinical Psychology. The project will be supervised by Prof. Roshan das Nair (Clinical Psychologist), Dr Nima Moghaddam (Clinical Psychologist and ACT specialist), and Dr Nikos Evangelou (MS Neurologist).
For more information please contact Kristy-Jane Martin at firstname.lastname@example.org
have been celebrating Volunteers’ Week since 01 June, and it has been great fun.
We know that our volunteers make a difference all year around, but we just wanted to take this opportunity to say a massive thank you!
Complete our online contact form if you would like to find out more about future volunteering opportunities.
Between 01 - 07 June, we are celebrating Volunteers' Week. In this guest blog, Berenice shares her experiences of volunteering with MS-UK...
I chose to become a volunteer at MS-UK as a Google Analytics Project Assistant not just to further my career prospects but also because it is such a great cause! They do vital and amazing work to support people affected by multiple sclerosis and I wanted to be a part of it. I found volunteering for MS-UK a very rewarding experience.
I felt not only welcome and supported but an important contribution to the team.
After this volunteer project was over, I was able to gain temporary work with MS-UK and I am now working for St Helena Hospice full time.
I have always wanted to work for a charity so the voluntary work has helped me to achieve my dream!
I would like to thank MS-UK for such a great opportunity :)
Complete our online contact form if you would like to find out more about future volunteering opportunities.
Meet the expert Alan Pearson is a Wellness Coach for MS-UK’s wellness centre, Josephs Court. Having spent over 15 years in the health and fitness industry, he has spent the last five years coaching, educating and helping people affected by multiple sclerosis and other neurological conditions.
In a seated position place your foot on a roller or tube to isolate the toes. Pull your toes up towards the knee. This will help the ankle joint.
Heel or toe rocking
This can be done in a seated or standing position (hold on if you have stability issues). Rock your foot from toe to heel. There are some exercise aids out there that can help from stability discs to heel toe rockers. Ankle rotations In a seated position try and circle your ankle in clockwise and anti-clockwise movements, if you can lift your leg across your opposite leg you can mobilise the ankle with your hand.
Flexibility and stretching of the lower leg muscles
These stretches can be done to help the calf muscles
Towel stretches for the calf muscles
Use a towel or resistance band over the toes and ball of foot. Hold the end of towel in both hands and pull towards the body, hold for 20 secs, release and then repeat.
Wall stretches for lower leg
Take a split stance position facing the wall, place hands on the wall and stretch out the back of the leg. You should be able to feel the stretch down the back of your calf. Now move your body weight forward and place weight over the front bent leg, you should feel the stretch in the lower portion of the leg.
To release soft tissue tension
This can be achieved with massage or the use of a foam roller, both will release muscle tension and promote blood flow.
Static cycling on upright or re-cumbent cycle
The cycling action encourages repetitive movement of the ankle, which helps mobilise the joints and builds strength in the legs.
Ankle weight resistance band
Place the band around the feet and pull it up towards the body. This is a good exercise to strengthen the muscles. If movement is limited then the use of an active or passive cycle like Medicotech’s Thera-bike is very useful in getting the legs and feet moving. In addition, the use of a Functional Electrical Stimulation (FES) cycle, such as the Cyclone technologies RT300 for the lower body can be an effective machine.
A TENS machine can help stimulate the relevant muscles, but please get advice from your doctor before using. I would suggest getting assessed or reviewed by a physical therapist or corrective exercise coach. By assessing range of motion, muscle imbalances, muscle weakness or neural impairment you can establish an effective exercise or activity plan that will maximise your outcome and provide a more positive outlook. Then you will feel confident that the exercises you are doing are relevant because it will also help set realistic goals and expectations. The continuity of exercise is a big thing with any neurological conditions, good movement patterns need to be established daily and re-affirmed. Exercise can help in many ways. Whether you get involved in a local exercise group or activity centre, or look online for exercises there is a lot of information out there. It may just inspire you to make the changes needed, or at least start thinking about it.
Subscribe to New Pathways magazine today to read issue 103 and discover more information about managing the symptoms of foot drop through exercise. I
mportant notice: Always seek the advice of your doctor or medical professional before attempting any exercises.
Guests included people who support our work at Josephs Court, fundraising volunteers as well as some of our Trustees! It was a great afternoon, with plenty of cake - all supplied by the Colchester branch of Marks & Spencer, who have nominated us as charity of the year - thank you!
It always amazes us how many people contribute to our work...we simply couldn't be the charity we are today without the hard work and dedication of our volunteers. You can view our afternoon tea party photos on Facebook now.
Best wishes, Jill and Sarah Fundraising Manager and General Manager
Well, today makes the beginning of Volunteers’ Week, and we are excited to be celebrating!
We have created a short video sharing some of our volunteers’ stories…check it out today on our You Tube channel!
We are here to support people affected by multiple sclerosis (MS) to make the most of today and live life to the full. But we couldn’t do it without our dedicated volunteers.
Every year, they take time out to help us make a difference. By volunteering with MS-UK, we can cheer on hundreds of MS-UK runners and cyclists, keep our office running smoothly and ensure the people who we support have a say in our services.
A huge thank you to everyone who volunteers with MS-UK, for making such a huge difference to our work, and for continuing to support us.
The MS-UK team