Meet Mary Harvey and her 16-year-old dog Fowler, our fundraisers of the month!
As I write, we’re several weeks into the third lockdown. Many are making tentative holiday plans for later in the year. Not me. I’m planning 31 walks to enjoy in my local area as I take on The Big Purple Dog Walk with Fowler, my 16-year-old Jack Russell. I’m hoping Dotty, my twelve-year old greyhound will join us for part of the way, but she gets very tired these days.
When I saw The Big Purple Dog Walk advertised on social media, I knew straight away I wanted to get involved. Being diagnosed with multiple sclerosis (MS) five years ago, having suffered a range of symptoms for 13 years, charities like MS-UK have become an important means of support for people like me.
My MS is relatively mild, but having a severe relapse last autumn has left me feeling anything but match fit for this challenge, as I’ve yet to regain my pre-relapse strength. But I’m confident that with Fowler by my side, a gentle two-mile walk each day will not only help me regain my fitness, but also help raise funds to support the invaluable work of MS-UK.
Old dog, new tricks
Fowler is a little old man, who at 16 is virtually blind. However, his powerful sense of smell enables him to enjoy the world around him, and he loves getting out and about! I know that our two miles each day will be a leisurely stroll as we will not only stop at each and every lamppost, but will also take the time to investigate the range of fascinating smells which only Fowler can enjoy. On days where fatigue strikes hard, I’m planning two shorter walks, punctuated with rest.
Although Dotty is four years younger than Fowler, as an ex-racing greyhound she prefers shorter walks and lots of snoozes. I hope that she will be joining us, along with my husband Stuart, for part of our route each day. I’m sure that the promise of a treat at the end of her stroll will be welcomed.
We’re lucky as we live in a beautiful part of Kent, with lots of great walks on our doorstep including along the Thanet coastline much loved by Turner and Dickens. I’m hoping that restrictions will be lifted enough in time for my friend Sue and her dog Lara to join us for a walk in the woods or to the historic towers at Reculver – something I’ve really missed during the pandemic.
I’ve been overwhelmed by the generosity of friends who have sponsored me, and I’m still days away from starting the challenge. Looking at my JustGiving page (https://www.justgiving.com/fundraising/mary-harvey2) I’ve been rather surprised to find that I’ve been sponsored by both Jean Claude Van Damme and Father Ted’s nemesis Father Dick Byrne! Whoever they are, I am very grateful… I’m just waiting for Spiderman and Alan Partridge to join them!
Good luck to everyone taking part in The Big Purple Dog Walk, I hope the weather is perfect for us all.
Want to take part in The Big Purple Dog Walk? Find out about joining #TeamPaws today by clicking the button below, or email Lucy@ms-uk.org – we’d love to welcome you!
MS-UK Trustee Phil Startin is inviting you to come and discover the benefits of mindfulness with us
My name’s Phil Startin and I’m one of MS-UK’s trustees. I’m excited to tell you about the Mindfulness Based Stress Reduction (MBSR) course I’m leading for the charity.
For me, it draws on three important and consuming parts of my life – my own meditation practice, teaching the MBSR course to the general population and to people with multiple sclerosis (MS), and living myself with primary progressive MS (PPMS) for over 14 years.
I’ve been practicing mindfulness meditation for over a decade now, and have gone from being really quite sceptical of it (“hippy tree-hugging” was my view of meditation before I started), to it being an important part of my life and a really positive contribution to my health and wellbeing. This is why I started teaching mindfulness.
So, what’s helped change my view of mindfulness? Well, there is now considerable medical evidence of the benefits of mindfulness in alleviating stress and anxiety, and that stress and worry can contribute to exacerbation of MS symptoms, relapses, progression of the condition, and perhaps even to the on-set of the condition itself. I know that mediating makes me feel better and has helped me deal with some of the huge changes in my life since diagnosis, and if it can help improve the trajectory of this degenerative condition I have, then fantastic!
Help with symptoms
Mindfulness has also helped me deal with some of the symptoms of MS. I think regardless of when you were diagnosed and where you are on your MS journey, typically those of us with MS need to deal with the unpredictability of the course of the condition in terms of disease activity and relapses, as well as progression. But we also have to deal with the wide-ranging uncertainty around future physical and cognitive levels, with the associated impact that these will have on many aspects of our life – dealing with loss of function and the impact this has on our hobbies and careers, and how it affects our relationships – with our partners and family, and our friends. This includes too our relationship with ourselves and who we are, our personal values and goals, and our relationship with the condition itself. Pain and spasticity can also arise and have a significant impact on day-to-day life.
Coping with change
Symptoms vary widely from person to person and all these changes can be frequent and dramatic at one extreme, or almost imperceptible at the other, but living with changing ‘norms’ is often part of the MS lived experience. I’ve personally found mindfulness helps me deal with the consequences of living with this condition, and recent research indicates mindfulness can improve the ‘quality of life’ of those with MS, enabling us to live better with many of the symptoms.
I started my MBSR teacher training at Bangor University over six years ago now, and am still supervised by a member of the staff there. For this MS-UK MBSR course we have made some modifications to the standard course to make it even more relevant and helpful to those of us with MS, including a whole new session on lifestyle changes.
The feedback from the first two pilot course was very positive, and I’d be delighted if you could join me on Monday 01 March 2021 at 11am for an introductory talk about mindfulness and more details about this course and another mindfulness course that MS-UK is offering.
To register, please visit the MS-UK’s webpage www.ms-uk.org/mindfulness-introductory-workshop.
On Wednesday 17 February 2021 we celebrated Random Acts of Kindness Day. To commemorate the day, we asked the multiple sclerosis (MS) community to share your stories. Here's what you said...
'This random act of kindness took place long before the pandemic - 40 years ago - but due to my MS and memory loss - I now experience this random act of kindness of the event through old photos I found while cleaning for lack of anything else to do during this pandemic. It sounds like a sad story but had a happy ending due to a wonderful doctor who cared.
'My wedding was all planned but my mother was was very ill and the doctor cared - he told us how much it meant to her and us for her to be there and helped us move up the wedding to the hospital chapel and all was arranged - even had music!
'Mom was there, all dressed up, guests too - doctor came too - dressed up - Mom died 10 days later. I am still married 40 years later to my hero...and trying to pass kindness forward.'
'After a long day in London, I used the Underground to catch my connection north. I had to change lines at some point, and the distance between stations was much greater than I’d anticipated. The further I walked, the more bent my posture became, until I was literally using the surface of walls to help me keep upright.
'I was passed by hundreds of racing commuters, possibly thinking I was drunk. I staggered on for a few more yards, following signs for the lift. When it appeared out of order however, I simply gave up, and slumped to the floor, wearing my best suit. Again, I was passed by many people, and at this stage I was feeling like a well-dressed busker and tearful!
'Amazingly, a man returned carrying drinks and a cupcake from Costa. To give me the refreshments, he must have passed me, exited the underground station, entered a Costa store to buy the items, and then retraced his steps, going against the walking traffic. I thanked him profusely after initially refusing his offer, and asked for his details in order that I could thank him properly. He refused, left me with the refreshments, and quickly disappeared again. I was speechless.'
'As two of my family members lived and died with MS prior to my diagnosis, I was well aware of their management techniques. Following my diagnosis, I declared instantly to doctors and nurses in the hospital that I was going on a diet avoiding saturated fats and milk.
'One day, all the patients were given their breakfasts of cheese sandwiches on the morning of my kindness day - so I left mine untouched and went back to sleep. Upon waking up, I saw a thick salami sandwich on my bed stand - although the kitchen did not have any dietary replacements that day.
'Other patients told me that a night nurse left me with her meal before going home. She did not wake me up, but left me her meal after a night 12 hour shift looking after patients. At the time, I was the only one at the ward being able to slowly wash myself and go to toilet. All other patients needed non stop care through the night and day. She must have been exhausted, hungry and not in a mood to "cure" MS by avoidance of cheese! Still, she decided that morning to be kind, supportive and selfless - saying nothing in the process.
'I will never forget such kindness in my time of sudden schock...please join me in wishing every blessing to "my" nurse.'
Thank you to everyone who shared your positive stories with us for the day and tuned in to our Facebook Live event.
You can find out more about why we celebrate kindness by visiting our Loneliness and Isolation Report webpage.
We look at the connection between MS and Raynaud’s syndrome for Raynaud’s Awareness Month
Raynaud’s syndrome, also known as Raynaud’s disease, causes parts of the body to turn white and become very cold and numb in response to stress of cold temperature. It usually affects the fingers and toes, although it can also affect other areas.
There are two main types of Raynaud’s, primary and secondary. Primary tends to be quite mild, and doesn’t appear to occur as part of another medical condition.
Secondary Raynaud’s, also known as Raynaud’s phenomenon, occurs due to an underlying health condition. It’s less common but it can be more serious.
Multiple sclerosis (MS) is associated with secondary Raynaud’s. Medics think that MS can make blood vessels in your extremities to overreact to the cold, and you may experience Raynaud’s phenomenon.
For some people, emotional stress rather than the cold can trigger an attack.
How to treat Raynaud’s
Dress to keep the cold out. Wrap up really well before you go outside, and make sure your hands and feet are well insulated before you step out to prevent the cold air from reaching them.
Prepare your car before you set off on a drive by running the heater for a few minutes to warm up the air.
Hot food and drinks will keep you insulated from the inside.
For some people, taking food from the freezer or fridge can trigger an attack. Keep gloves nearby to use for this.
Keep your extremities warm at night by wearing socks and mittens in bed when it’s cold.
Exercising regularly is important to keep a healthy circulation.
To commemorate Random Acts of Kindness Day 2021, we have designed a pack of postcards to help spread kindness far and wide.
In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past.
Our findings from this research also told us that the MS community believes in the power of kindness and friendship, and we should be sharing this message widely. So, whenever we have a chance to do this, we will!
There are many organisations in the world promoting kindness. Here are some we have found - do let us know if you think of any more we can add, just contact us with your suggestions...
Hello, my name’s Tracy Harris, and I’m from Summerhouse Yoga and Wellbeing. I am going to be holding an introductory session for chair yoga for people with multiple sclerosis (MS) over Zoom on Wednesday 24 February 2021 at 11:15am. This session aims to introduce MS-UK’s new chair yoga classes that will be commencing in March 2021 for those who are new to yoga, as well as those who have practised yoga before.
Chair yoga is a practice of simple exercises that you can do daily to help move, strengthen and stretch your body, while expanding your breath and calming your mind, free from the everyday ‘chitter chatter’.
Yoga is not just for bendy, flexible people as is sometimes wrongly portrayed in the media. It is an all-round approach that adapts well for seated practice to help with strength and flexibility in body and mind.
It helps us to focus and concentrate, find peace, contentment, and balance our emotions. Yoga is a hugely beneficial practice for everyone, but particularly for those who face serious life challenges every day.
Chair yoga is a fantastic modern form of yoga, accessible to all, and has all the benefits of a traditional yoga practice. It is a gentle form of yoga and you will be encouraged to work within your own ability and at your own pace.
The word ‘yoga’ means ‘to yoke’ or connect body, mind and soul and bring about a feeling of contentment.
Some of the benefits of yoga include
If you sign up for the course you will learn a variety of breath practices to improve breathing patterns, enhance lung capacity, balance emotions, and relieve stress. You will learn movement practices for the upper body and the lower body.
We will also take some standing practices for those that can, holding onto the support of a chair, table or wall. These will focus on strengthening practices and simple supported balances to help with confidence and ability when standing or walking. For those that cannot stand, Tracy will offer seated alternatives throughout. You will also learn some concentration and meditation techniques that help to find peace and contentment.
Knowing these techniques of chair yoga and applying them for just a few minutes a day can quickly restore a sense of balance, focus, and allow you to regain your sense of wellbeing.
You can join the course at any time. Although there will be progression from week to week, each class will stand alone so you can join in anytime.
If you think that yoga is not for you because you physically cannot get up and down off the floor, then think again. Feedback from our information session in August included
“It was really good. I found it very relaxing and the stretches were really well targeted for problem areas.”
“Tracy was great, explaining and demonstrating the different stretches, movements and mind focusing so well. I really felt that I was beginning to visualise getting my ‘brain messages’ through to the muscles on my MS weakened side… I loved it and I'd definitely be up for more!”
“I really enjoyed this morning’s yoga with Tracey. I felt relaxed after the session and my back felt a little easier. I do hope that this is something that can be carried forward with our MS group.”
“I liked the whole session. She was both professional and friendly”.
“That was an amazing session! Definitely look forward to more.”
For the taster session, you will need
You’re in good hands
Tracy is a fully qualified and experienced British Wheel of Yoga Teacher. She has been teaching yoga for 13 years to many students of varying abilities. Tracy has worked with people and families facing challenges, including people with MS, people living with or recovering from cancer, heart conditions, motor neurone disease, Crohn’s disease, Parkinson’s disease, bi-polar disorder, anxiety, asthma, and recovering from stroke. One of Tracy’s passions in teaching yoga is to adapt practices so that everyone can learn techniques to add to their own ‘wellbeing toolkit’ to use anytime they would like.
MS-UK Counsellor Mark Howe shares some tips for getting through the long winter lockdown
We’ve all been in lockdown for a large chunk of the past 12 months. It hasn’t been easy for any of us. When the lockdown was first announced, a number of people may have thought, this will be OK… I can cope. It soon became apparent, however, that a lot of people were starting to struggle.
This post is to talk about the little things that can be done to enable us to keep going. A lot of people are by no means OK… whatever that even means anymore. But it’s OK not to be OK during these challenging times. So what can we do? I hope by sharing my thoughts of lockdown with you it might give you some ideas, or some hope. We all need a little bit of that.
Maintaining your wellbeing is important. Sleeping, eating, exercising, routine… it’s all good. It’s the ultimate goal if you’re able to do that. But some individuals were on very unstable ground before lockdown. Some people have lost or have experienced a reduced support network. Some of us have taken a harder hit to our mental health than others. Some of us are just surviving and I want to assure people that that’s OK. That’s more than OK. If you are surviving, that’s fantastic.
You have to do whatever it takes to just survive this and come out the other side.
Do what your body and your mind needs. If you can’t go out for a walk, just open the curtains at least. If you can’t get dressed or wash, simply praise yourself for getting up at all and facing another day.
If you previously went to a multiple sclerosis (MS) support group but can’t do so now due to the restrictions, continue doing a journal as if you are still attending. Every day write things that you’re grateful for, the things you’ve struggled with most, what you’ve learnt from it, and the things you’ve achieved. Try and maintain that feeling that the group still exists, even if it’s only you in it!
Speak to people on the phone, or connect to Skype or ZOOM. Many people are self-isolating. Speaking to people who are on their own offers support to others – it also helps us to feel better… like we’re doing a good deed.
Helping other people can often help you too.
If you have family around you then board games can keep you sharp mentally. But if not then online games are good too.
Walking is good if you’re able to. Our anxiety of encountering people who have no regard for social distancing can put you off, but still set yourself walking goals each week, weather permitting.
Listening to music, learning to play a musical instrument and singing can all be useful. It’s good to make noise and get pent up feelings out into the world through sound.
The biggest thing that’s helped me during lockdown has been using my creativity.
Creating music, art, any kind of craft, writing poetry, writing in general… it’s all useful for getting through times like this. Pour all your feelings into something productive, so you can have something at the end of it, something that you can be proud of.
There are many things you can do to keep well. But just getting by is enough. Whatever it takes. You’re doing the best you can.
And one day I hope this will all be a shared memory, and we’ll be together again with loved ones, living life again, and recovering again. For now surviving is the goal. Be kind to yourself, stay safe, keep well and do whatever you need to in order to get through.
Optic neuritis is a common symptom of MS that affects the eyes
Multiple sclerosis (MS) can present a huge range of symptoms and no two people’s experiences are the same. But one very common symptom is optic neuritis. This is when inflammation damages the optic nerve that transmits visual information from your eye to your brain. It can cause a temporary loss of vision in one eye, pain when you move your eyes, loss of colour vision, or seeing flashing lights when you move your eyes.
Around seven in ten people with MS will have optic neuritis at some point in their lives. Women are much more likely to experience it than men, and white people are affected more than any other ethnicity. The most common age to be affected is between 20 and 40 years old.
Some people experience optic neuritis as the first symptom of MS, while others may experience it in a later stage of the condition.
Although it is quite strongly associated with MS, not everyone who has optic neuritis will go on to get MS. For someone who experiences one episode of optic neuritis, the risk for getting MS is around 50 per cent.
An ophthalmologist or neurologist will diagnose optic neuritis. You may have blood tests and a test that measures how well your optic nerve is working called visual evoked potentials. It looks at how long your brain takes to react to a visual signal. They may also run an MRI scan on the optic nerve to check for inflammation.
In general, vision loss can get progressively worse over seven to 10 days. It will then begin improving between one and three months later. Thankfully, most people fully recover their vision.
Although optic neuritis is caused by MS, some other conditions can cause the optic nerve to inflame. These include infections or immune diseases such as lupus. A condition called neuromyelitis optica can also cause it, although this is rare.
Sometimes complications can arise from optic neuritis. There can be permanent optic nerve damage, although this damage might not necessarily cause symptoms. There can be a partial loss of vision or colour loss that becomes permanent, although most people regain normal or almost normal vision within a few months.
If you think you may have optic neuritis, make an appointment with your doctor.
Dr Gretchen Hawley is a multiple sclerosis exercise specialist who will be hosting information sessions for MS-UK Online – be sure to book your place
I’m often asked what the most important thing is when it comes to exercises with multiple sclerosis (MS). My answer is always ‘functional exercise’. Functional exercises are activity-based whereas regular exercises are weakness-based.
The difference is that exercises that are weakness-based will likely increase the strength of that muscle, but the renewed strength often does not result in improved function with daily activities and movements, such as walking.
Functional exercises break down a specific activity that is challenging and strengthens the body in a specific way that will make that activity easier. For example, if someone has hip weakness which is making it difficult to walk, a regular exercise may be a straight leg raise, or perhaps the clamshell or side-lying leg raise.
Breaking down movement
However, a functional exercise would require the breakdown of that movement. Continuing with this example, walking requires knee bending, toe lifting, knee lifting, balance, and weight shifting. Therefore, these five movements should be the exercises that are performed to achieve improved walking.
It’s best to choose a position for the client where the movements can be done successfully. Ideally, this is the same position as the activity (for example for walking, the position is standing), however it can be performed in other positions, like sitting. Replacing regular exercise with functional exercise can make a world of a difference for those with MS. It’s often the difference between remaining at your current ability level and improving your mobility and energy.
In our upcoming information sessions I’m hosting on behalf of MS-UK, we’ll be revealing all of the best tips and strategies to help you get the most out of your MS-specific exercises that promote neuroplasticity, discussing the difference between regular exercise and functional exercise, and our final session will be on spasticity.
Hope to see you there,
Dr Gretchen Hawley
Photographer Hannah Laycock on the opportunities MS has opened up
When I was diagnosed with multiple sclerosis (MS) I was living in London. I’d been under quite a bit of stress in the lead up. I’d started playing squash again after not playing since I was a teenager, and the next day after a game, I felt a pain under my right shoulder blade, which progressed to numbness across my chest and right side.
My friend who is a massage therapist thought maybe I’d trapped a nerve. But the numbness moved around my body. My GP did some blood tests which came back normal. But I was worried because my dad had been diagnosed with motor neuron disease in 2008. As soon as I told my doctor this, they referred me to King’s College for an MRI scan.
By the time I’d got my results, my symptoms had really died down. I had concluded that I probably didn’t have motor neuron disease, because symptoms don’t come and go like that. So on the day of my results, I cycled from my workplace in Chadwell to King’s College. It was a big shock when the neurologist showed me the scans and pointed out areas on my spinal cord and brain.
I went straight to a friend’s house and fell to pieces. I was so confused and really went downhill and had another relapse. I then had a bad experience with a neurologist and ended up putting in a complaint, which drove my stress levels up further.
I found it really hard to accept, especially because of my dad having motor neuron disease. How could both of us have huge health conditions? For a while I’d been considering moving back to the north east of Scotland due to my dad being ill and, while I loved living in London, and had a lot of friends there, I had no family nearby and it was time to think about the future. My gut instinct was to move back home.
My parents live in Forres but I chose to move to Glasgow as it is the most similar to London in terms of the art scene and city life. But it wasn’t really for me. While I was there I had an interview for the Glasgow School of Art, but at their Highland campus, in the town that I grew up in. They created a role for me in photography and I ended up moving back with my parents for a bit.
Frustrations and opportunities
The uncertainty of my condition does trouble me. But, while I get frustrated with my symptoms on a daily basis, having MS had meant I’ve met lots of people I wouldn’t have normally. There have been amazing commissions and opportunities that wouldn’t have arisen if I didn’t have MS. In 2019 I was invited to commission a set of portraits of others with MS for the drug company Novartis. This was a dream job! I met lots of people at all different stages of their condition. The lived experiences you share connects you on a greater level. You share a level of understanding. I’d love to do more work like that.
I think having a condition like MS can lead to a lot of self-growth and adaptation skills. I was heavily influenced by witnessing what my dad went through. He was inspiring and positive throughout some really testing times, and that’s helped my own mindset and how I look at challenges.
My dad passed away in December 2019. He stopped taking in food and water himself. It’s been a challenging time because we felt that he was finally at piece and a new chapter was about to start, then lockdown happened.
My self-care has slipped a bit during this latest lockdown. I was good at the beginning, doing yoga at home and stuff. But I’m still processing my dad’s death.
My creative work is so important to me. I’d say to anyone newly diagnosed, doing something creative is a really good way to process something like a diagnosis. Don’t worry about the final outcome, it’s the process that’s the important part. It could be painting, dancing, pottery – anything. It just gets rid of some of the mental load. It can really help reduce stress, which of course is important for MS. Don’t worry about the results, just channel that energy!
This interview appeared originally in New Pathways magazine. To subscribe for just £1.66 a month, sunscribe here or give us a call on 01206 226500.