As part of MS-UK's Online services, we have developed the Peer Support Service. Within this, there's several Peer Pods and each of them are hosted by someone living with multiple sclerosis. There's ones for specific interests and hobbies, and a general one where you can meet people in a similar situation who understand MS and the challenges it can bring. This blog is from one of our Peer Pod members. If you fancy taking part in one, click here.
I stumbled across the MS-UK website and the Peer Pods almost by accident and I thought why not give them a try? I am so glad I did, it has opened a whole new world to me, there are other people out there with MS who just get it.
The Peer Pods and the virtual friends I have made attending have been a great support to me as I was only diagnosed with RRMS in March 2021, after previously being diagnosed with CIS in 2014. The Peer Pods are a great space to talk not only about symptoms and treatments but mostly about other areas of interest such as TV, podcasts, craft and nature.
One of the members of the Peer Pod has also offered to buddy up with me so I can contact him anytime about the weird and wonderful symptoms and get support and advice. This has been a great comfort blanket.
The Pods include a great mix of people of all ages, with different types of MS including those that have been living with MS for several years. Everyone is made to feel welcome.
Some of Peer Pods also have WhatsApp groups which are great way to keep in touch and offer help and support to each other. After being widowed in January the group are always there to offer a word of comfort and support which I have found invaluable.
This has all resulted in volunteering to be an MS-UK VIP as I want to give something back to the charity that has helped me so much. In short giving the Peer Pods a try has given me such much and whole new group of friends that I hope will be around for a very long time.
Ella Shaul explains how multiple sclerosis counselling helped her in so many ways
I decided to start counselling with MS-UK as I had a recent relapse, and have struggled for most of my life with depression, anxiety and mood swings. I have been experiencing multiple sclerosis (MS) symptoms for about 10 years with no diagnosis until two years ago.
I wanted to talk through how I was feeling with someone who would understand, and start to feel that I was making a step forward to feeling better and facing my condition and my depression. I wanted to find an acceptance of my illness.
It was fantastic having Jaz to talk to each week, especially through the difficult times – what with the pandemic and the uncertainty of MS and the world around us.
I had a really good sense of wellbeing after my counselling sessions. I also realised I was enough just being myself, and not focusing on what I can or can't do anymore. I learnt to put my health and wellbeing before other things so I was then able to manage life better. I stopped putting as much pressure on myself to be doing everything.
I found it was easier to ask for help, and be more upfront when I was struggling, instead of just carrying on and making myself feel more unwell. I have been able to stop criticising myself, or if I do, I am able to change the way I’m thinking before it spirals.
Family and friends have noticed a difference in me lately. My son has even said how calm I am and much happier I've been.
I have started to connect with others with MS and it’s been really positive. It's been great knowing people who have the same struggles and discuss the similar tools that we all seem to have to help ourselves.
I would recommend counselling to anyone. At first I was unsure about it all, especially being in lockdown and having to home school – I thought I wouldn't be able to manage it all. I found taking the time out to speak with Jaz so beneficial. It's definitely a non-judgmental, safe place to offload and navigate ways to help yourself. Also I like that you can speak again with your counsellor again after six months to check how everything is going.
This week, 10-16 May is National Vegetarian Week. Diet can have an impact on multiple sclerosis, and some people use it as a way to contribute to the management of the condition. Click here to read more about diet and supplements with our Choices booklet. Here, this recipe for stuffed aubergines is a great swap packed with protein and tasty vegetables for a meat-free meal. Why not give it a go this week?
1. Preheat the oven to 220°C fan. Cut the aubergines in half and place on to a baking tray. Score the flesh with a knife (being careful not to cut all the way through), drizzle with olive oil and salt, and roast for 35-40 minutes until soft. Once soft, remove from the oven and leave to cool.
2. Turn the oven down to 180°C fan. While the aubergines are in the oven, cook the quinoa. Place a medium saucepan over a medium heat and add the quinoa and boiling water. Bring to a simmer and cook for 12–15 minutes until the water has been absorbed. Once cooked, remove from the heat and leave to one side until cool.
3. Using a large spoon, scrape the flesh out of the aubergines and on to a board. Roughly chop into pieces then put into a large bowl. Add the tomatoes, balsamic vinegar, pine nuts, harissa and quinoa. Season with a large pinch of salt and pepper.
4. Using a tablespoon, scoop equal amounts of the mixture back into each aubergine skin. Place them back on the baking tray and bake in the oven for 20 minutes. Sprinkle the parsley on top before serving.
From Deliciously Ella Quick & Easy: Plant-based Deliciousness by Ella Mills (Yellow Kite, £19.99).
MS-UK Counsellor Kerry Trevethick shares her words of advice on how to manage the easing of lockdowns across the UK, as the end of restrictions is in sight and how to be kind to yourself during this time.
Across the UK, lockdown is easing and whilst many people can’t wait for restrictions to be eased and be able to socialise with friends and family again, many others may feel anxious or apprehensive about returning to things we haven’t done for a while and our old routines. Lockdown may have been difficult for many reasons but it provided a level of certainty and clarity on the rules and what we were to expect. However the easing of restrictions is less clear cut, and this can be stressful and anxiety provoking.
There are a range of different emotions that you may be experiencing such as:
It’s important to acknowledge that these feelings are valid and reasonable, and just like it may have taken time to adjust to going into the first lockdown, it may take time for us to adjust to life post-lockdown. It is okay if it takes time to adjust to life changing again.
Some people may find it very difficult in making decisions about how to keep safe now, who they should see or avoid, where should they go or not go - this is normal. For a long time, these decisions were made for us. We may feel that the responsibility of this decision making is too much, but you can take things at your own pace and remember there is no rush to get back to your old routines – you can be in control of how fast things move for you but be wary of avoidance as this can help maintain anxiety.
For some people, life post-lockdown will look very different. Maybe you have been bereaved, lost a job or had a relationship breakdown, and it is okay to feel this grief and there are organisations that can help you.
There are things that we can do to help ourselves manage our feelings as lockdown is eased and these are outlined below:
It is a pleasure to be able to put together a series of masterclasses around exercise and education in MS. I spend a lot of time working and educating people around their symptoms and seeing the effects that MS has on their bodies, whether walking, sitting or tasks of daily living. By helping people have better knowledge and understanding about their MS symptoms, it allows people to have more independence and improve their quality of life.
As a Level 4 Exercise Coach for Long term Neurological Conditions, I have been working with people with MS and other neurological conditions for the past nine years and if you have been following our online classes or joined in one of the many information sessions from our fellow professionals, you will be building a wealth of understanding that will help you on a day to day level, reduce symptoms and help maintain a more stable condition.
People with MS experience different symptoms with their condition from muscle weakness, fatigue, spasms, numbness/ tingling, difficulty walking, coordination, balance issues, are just a few symptoms associated with MS. One of the many symptoms I am asked about is foot drop, the inability to lift the toes and flex the foot at the ankle. Many of you may have found yourself walking normally and then after some time your foot starting to drag or catch on the floor, maybe having more trips and falls, a high stepping gait or throwing the leg out to the side when trying to walk.
During the next masterclass, I will address some of these areas and demonstrate some exercises that can be beneficial for foot drop. I will talk about types of equipment that can be used like foot drop stimulators and foot orthosis that assist for the foot drop condition.
The exercises will help to support a better functional capacity and help maintain a more neutral foot position. We will also look at the global effects that it has on the rest of the body when sitting, standing and walking itself.
If you like the sound of this masterclass, please come and join us! To register for the session, please click here. There is a suggested donation of £5, but you can donate any amount from £1 to attend.
This week, it’s National Gardening Week and we’ve been sharing ways that you can adapt your garden to become accessible with symptoms that include decreased mobility. Louise hasn’t let her multiple sclerosis dampen her love for gardening. Instead, she’s made adjustments to continue growing a selection of fruit and vegetables. Here, Louise shares her tips on how she manages her garden with mobility challenges with some methods you can adopt too.
‘Don’t stop me now’. That is me speaking to my multiple sclerosis (MS), in relation to my passion for gardening, nature and the outdoors. When I was diagnosed with MS about five years ago, I was determined to spend as much time as I could outdoors, despite my diminishing walking ability and muscle strength. I have a third of an acre, which I manage with labour-saving layouts and structures, timing strategies, and help with heavy tasks. The front garden consists of flower and shrub beds with gravel and moss paths in between to eliminate having to lug or pull a lawn mower round to it. There is lawn in the rear garden which is mown from March to early summer then allowed flower, with what are usually regarded as weeds, for pollinators and to encourage wildlife. The trend to let part of your garden ‘re-wild’ is beneficial to nature and less effort.
The vegetable and herb garden is structured in raised beds which I cultivate using the ‘no-dig method.’ I work on it early in the morning when my leg strength is at its best and before the sun makes me feel dizzy or saps my energy. If this happens, I go into the shade or indoors, leaving everything where it is, and I usually recover by late afternoon when I return to do light jobs or water if needed. It’s rather like a Mediterranean lifestyle, rising early to work outside, taking a long midday siesta and returning later in the day. I fill plastic milk containers with water or liquid fertilizer and leave them dotted around at various points in the garden so water is at hand. This eliminates having to carry heavy watering cans and buckets or walking back and forth to turn hose pipes on and off.
Beyond the lawn and vegetable garden I have an orchard of cherry trees where I have an apiary and chickens. I have a newly erected polytunnel with staging along one side so I can potter along in there with something to hold onto, plus a couple of chairs I can use for rest when needed. I am growing plenty of tomatoes, peppers and aubergines for the ‘eat a rainbow’ diet advised for a healthy immune system.
By the back door I grow herbs and salad leaves, all the year round, in pots and troughs so I can just snip off a few leaves, as needed, without having to walk far. It is where I also have a flip top compost bin for the easy disposal of vegetable food waste, coffee grounds and paper. Quantities of organic matter are essential for no-dig cultivation.
Besides produce and flowers, a garden yields many benefits for health and mental wellbeing. Our immune systems require plenty of Vitamin D from sunlight and our circulation and breathing improves with fresh air and being amidst plants. Functional exercise, taught in MS exercise and Pilates classes, can be applied to the movements required for gardening tasks and, as such, help to strengthen muscles and improve neurological pathways.
My MS does mean that, at times, I do not have the strength or energy to work in the garden, but this gives me the opportunity to just stop and stare at the wonders of nature reminding me of the poem titled Leisure by William Henry Davis which begins like this...
‘What is this life if, full of care,
We have no time to stand and stare.
No time to stand beneath the boughs
And stare as long as sheep or cows’…
Louise is the host of our Nature Peer Pod. You can join Louise and the rest of this pod’s participants each week in their meet, via Zoom. You can find out more about our Peer Pods by clicking here.
Living with a long-term health condition can overshadow your hobbies at times, but gardening is one that you can truly make your own. By knowing your capabilities, using adapted tools and different methods of gardening, you don’t have to miss out on the Great Outdoors. Not only does growing your own flowers, fruit and veg wield a bountiful crop and the satisfaction from growing it yourself, but it also has a wealth of benefits. The physical activity involved is great for your overall health, and your mental health can reap the benefits of what you sow, too. From helping to reduce stress, anxiety, and depression, it can also do wonders for your confidence and self-esteem.
Here, we round up the top products and tips to improve your gardening experience, just in time for this year’s growing season and for National Gardening Week!
Developed by UK company, Peta, the Easi-Grip Trowel is helpful for people with weak grip and poor hand control. The angle of the handle means that the wrist and hand stay at their natural angle and doesn’t require as much grip. There’s also the option to add an extra arm cuff for additional support. £14.95, peta-uk.com
If you struggle to bend down or kneel and would prefer to garden from a standing or seated position, try adding raised beds to your garden or allotment. You could ask someone to help you make some so they’re perfect for your height (either seated or standing), or shop around for a suitable product. Be sure to check the size before you buy!
Large pots full of compost can be very heavy, so why not invest in a wheeled garden trolley? This enables you to move pots around the garden with ease and helps to avoid any injuries that heavy lifting may cause.
Picking plants that require less attention can be the perfect solution. If you’re unsure how much time you can commit to your garden or struggle to maintain it, opt for plants that are slow-growing or don’t need pruning regularly.
When it comes to pruning your plants, there’s a whole range of options to assist you. This handy guide from Carry on Gardening will help you to determine the best set of secateurs, whether it’s a battery operated set, or the cut and hold design. Think about your mobility and having to pick the clippings up and what is the safest option for you in terms of grip and the type of blades.
Cushion your knees and take a seated break with this 2-in-1 design from VonHaus. Place it on the foam pad side down, and use the bars to assist you with getting up from ground level, or flip over to sit down. A trowel, fork, hand rake and storage bag are included too. £21.99, vonhaus.com
Sprinkler or watering systems
Watering cans can be really heavy and depending on the size of your garden, it can take a long time to get all the plants watered in the summer. Consider options such as sprinkler systems that can be set on a timer, ortimer or moved around the garden to make sure that your plants continue to bloom and grow! Alternatively, this wheeled sprayer is a more portable option to use.
Knowing your abilities and identifying the areas that you require assistance with is important, and key to finding the right tools to help you. It’s always best to get someone to help you with any tasks that require climbing ladders, and other more dangerous tasks for example. Map out your garden and figure out the areas that you want to adapt or refresh, whether that be bit by bit, or a complete overhaul.
To find likeminded people who enjoy gardening, the great outdoors, and all things nature-related and have MS, why not join our Nature Peer Pod? Each week, this group meets via Zoom for a catch up and have a chat. It’s a great way to meet people who can relate to your situation and forge new friendships. Find out more about Peer Pods and the different groups by clicking here.
Tessa hasn't let MS deter her from acheiving amazing things, having authored several books and forge her path within the local community through her writing. Here, she shares her story from diagnosis to present day.
I wanted to tell my story to show others who may be just at the start of their multiple sclerosis (MS) journey that there are ways, even without disease modifying drugs (DMDs), to manage your symptoms, achieve your goals and lead a full and enjoyable life.
I’m seventy now and have lived with MS for almost 35 years. I was diagnosed with progressive MS shortly after the birth of my first child, at a time when there weren't any MS drugs available. As a new mother, I was determined that my daughter was not going to grow up to be a young carer, and that meant researching ways to help myself. I decided to see if there was any evidence that changing my diet might help, and I soon discovered there had been quite a few trials involving MS and food. I then consulted a doctor who also believed nutritional medicine could help MS, and I started to feel better.
In fact, I felt so much better that my husband accepted a temporary teaching post in Australia, and we moved to Tasmania for a year, where I had another child. It was whilst we were in Australia that I heard of a radical new theory about treating MS, which involved intensive exercise – specifically, weight training. Back in Britain, I added regular weight-training to my low fat, gluten-free and dairy-free diet, and my symptoms stabilised. Although I had some residual disability, I no longer worried that my symptoms might suddenly get worse.
I remained stable for thirteen years, during which I started writing regularly, and began an Open University degree. My book about nutritional therapy for MS, The Multiple Sclerosis Diet Book, was published in 2007, and I’ve since published three children’s detective novels, The Eye Spy Series. I’m now working on a Young Adult (YA) novel.
I’m not the only person with MS who has found that it has brought pluses as well as minuses into my life. Being unable to carry on working full-time gave me the opportunity to try writing, which had always been an ambition of mine. Being a stay-at-home mum with MS was sometimes isolating and lonely, but writing has helped me to get involved with the local community and make new friends. And although my MS symptoms have progressed a bit during the last ten years (mostly sight and bladder problems), I’m still able to walk around the house, and only use a wheelchair outdoors.
I was extremely lucky in finding the right advice just when I needed it, but I think it also helps that I’m a glass-half-full person. I’ve always seen MS as a challenge to be overcome, and not an insurmountable obstacle. I just wish that medical training included more about the benefits of a healthy diet and the right sort of exercise, so that medical professionals could start handing out advice on these at the same time that they hand out DMDs. Knowing that you are doing something to help yourself is hugely empowering.
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For MS Awareness Week this year, we wanted to hear from people who live with the long-term health condition. This is Sally-Ann's story.
Nine years ago, I was diagnosed with multiple sclerosis (MS). A year before, I had woken up one morning and was blind in one eye. After seeing an eye specialist, I was diagnosed with optic neuritis and was told it would take a year to recover. Over the period of year, I lost eyesight in both eyes about three to four times and this led to my diagnosis of MS. MS wasn’t new to me. It was a condition I had watched my mother live with for many years, and my mother was wheelchair-bound and my father her full-time carer. From being diagnosed with MS and been fortunate enough to have treatment and medication straightaway it has thankfully kept my symptoms at bay and they are very mild. I’m still able to work full time, and every year I raise money and awareness for various MS charities. MS for every one of us is completely different, we all react differently to all the different medication and all of our symptoms can be so different. We call it a snowflake disease because none of us are the same. I’m very lucky that my eyesight has fully recovered and I am currently relapse-free for four years due to the medication I am on.
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This week is MS Awareness Week, and we'll be sharing stories from people living with multiple sclerosis (MS). Every experience with MS differs for everyone, and each story shows how indivudal the journey can be. Declan shares his story and how he didn't let his sympoms stop him from following his dream to study law.
My name is Declan Groeger and I live in Cork, Ireland. I was diagnosed with RRMS in 1988, but I can trace the initial signs and symptoms to 1983. I had often yearned to study Law and in 1999 I decided to do something about it. I applied for, and was accepted, onto an evening course studying law at my local university – University College Cork. It seemed to be a daunting challenge which would involve three hours, three evenings a week for the initial two years and progress to three hours, four evening a week for the next two years. All this, plus tutorials and study whilst holding down a full-time position as a real-estate agent.
I did 16 subjects over the initial four years which was the same number of subjects that full-time students studied over three years. Lectures and tutorials were at pre-ordained times – all after a day’s work, but study times were a different matter entirely. My boss allowed me a certain amount of freedom and I was able to manage some study time while in the office. My non-college evenings became study time, as did Saturday mornings but that was it. I still needed family time with my wife and two daughters.
My handwriting had deteriorated over the years to where it was barely legible as tiredness eclipsed my drive to be as good as I could be, and I knew that note-taking in lectures could be illegible without context. I bought a laptop, and my wife bought a voice recognition program. I would read my notes into the laptop, within 24 hours, while everything was fresh in my mind.
After I had completed my four-year stint and achieved my Bachelor of Common Law (BCL) with a 2:1, I discovered that I was addicted and enrolled for a further two years for a post-grad and achieved Bachelor of Laws (LLB) and by that time in 2005 I had got the further education bug out of my system.
I retired in 2010, 22 years after my diagnosis due to fatigue. It was a good decision for me as my quality of life has improved. I have undertaken a number of online courses over the years to keep my brain as active as possible and I like to think that I doing alright, particularly in these strange Covid-19 times.