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Alternatively, to get regular updates about our activities, send your e-mail address to info@youraims.org
Members are welcome to attend our 2025 Annual General Meeting
Tuesday 8 April 2025 at 2pm Zoom Access Code: 723 172 2121. [We will send out a meeting link by email nearer event]
by Cathy Chester
The other day, I was thinking about healing emotional wounds from living with MS. The ups and downs of anxiety and stress can, at times, be overwhelming. Was it a coincidence I stumbled on a quote by Lancali which describes healing emotional wounds while living with MS? ‘A chronic illness is not difficult to live with because it is endless. It is difficult to live with because it is unpredictable but like grief, every flare ends and though the looming threat is constant, you learn to live beside it. A shadow of mixed blessings. It does not heal as wounds do but it teaches you of your own strength till you can wear it like a battle scar.’
Life is inherently unpredictable, and we can never be sure about the future. Coping with an unpredictable illness like multiple sclerosis requires us to be emotionally prepared to face the challenges coming our way. It teaches us to be resilient and develop coping mechanisms to help us navigate through the difficulties of life. It's easier said than done but I believe it's worth it if we can do this. I share these thoughts to create awareness about how it feels to live with MS and the emotional toll of fighting everyday struggles.
My smile hides the invisibility of my illness. It hides the 13,629 days I've lived with this disease and all the symptoms and comorbidities that followed. It hides every piece of poor advice I've been told to overcome MS and (the sometimes) lack of support and research for patients over 60. Despite this, I smile because I choose to be intentional about how to live my life. By
spinning gold out of straw. Joy after tears. Sunshine after grief and gratitude after waking up each day.
I'm not a Pollyanna or a character out of Tom Sawyer who's trying to whitewash the truth of living with MS. This way of living works for me; it has so far. I'm 65 and I've lived with MS since I was 28 so I know a thing or two. I want to tell you this:
For all of you having a hard time with whatever adversity you're facing, take it one day at a time: one baby step at a time. There's no right or wrong way to be and no time clock. Step through whatever you're facing; there's no going around it. That doesn't work. And when you're ready, I mean really, really ready, I'll be here waiting to listen to whatever you have to say and I'll send you a smile no matter where you are on your journey. I hope you'll send me a smile back.
Remember: Be grounded in today, let go of yesterday and be patient for tomorrow. All we have is here right now.
charge of my MS by April M
Life gives us choices. We can choose to live each day with a negative attitude or with a positive attitude. The day I was diagnosed with multiple sclerosis, I made the choice to live a positive life. I understand this is easier said than done but I found by choosing to live a positive life, I appreciated the small things more. Some days can be a struggle but my positivity is something I will not let MS take away from me. Why would I let this diagnosis take over my life when I could be brave and face it head-on? Never one to back away from a challenge, I decided to take charge of my health with the attitude knowledge is empowering.
No one knows my body better than I do. Using that knowledge, as well as working with a wonderful neurologist, I have been successful in taking charge of my MS. Because this incurable disease does not follow a standard mode of care, I’ve learned to follow a few philosophies to help me through the challenges. Each person living with MS has a different experience. I hope my experiences help others cope with their individual situations.
By making the choice to be positive, I feel like I am able to control my day better. MS is a life-changing disease that not only affects me but my family and friends. Granted, some days are better than others. I attribute my good days to choosing to be positive. At times, it might be easier to be negative, especially when my body is not cooperating but being negative doesn’t change my exhaustion or pain so I choose to be positive.
Talk to your doctor about treatment plans
When my doctor returned to the consulting room, he had plenty of information leaflets for me to read. He told me to go home, read the material and let him know what questions I had. While this may have felt overwhelming at first, I found it comforting. I knew my doctor and I had options to discuss. I am happy I had a doctor who provided as much information as he did. Leveraging potential side effects and benefits, my doctor and I worked together to develop the best treatment plan for my specific case. Having that small level of control over my health helps me cope with the diagnosis.
It is important to communicate with your doctor, as well as others in your support network. Remember no one knows your body better than you so
other people can’t always know how you’re feeling. The more you tell your doctor about how you feel, how the medicine is affecting you, possible triggers or anything else you want to share, the better he or she can help you with managing your symptoms. Through open communication, you engage your doctor to be a partner in your care. While your doctor may help medically, it’s important to have a support system of friends and family who will be there when you need them. Try to keep them in the loop. Let them know how you’re feeling. You may need help sometimes and it’s great to know you have people you can count on. If you don’t have that support system established yet, there are several support groups and advocacy groups to get involved in. Sometimes, the best support comes from other people who know what you’re going through. Stay educated I believe in lifelong learning. I was challenged by a friend to learn more about what I can do to help myself. My first step was to research ways other people are coping with MS. Just reading articles about how others are coping helps me know I do not have to let the diagnosis take over my life. I met the challenge of taking charge of my MS by becoming a certified health coach. The health coach training enlightened me to other ways I can help myself. I now feel better equipped to overcome the challenges MS presents. Deciding to take on a more active role in understanding my MS was one of the best decisions I’ve ever made. By actively asking my doctor questions and reading about other people’s experiences, I feel more aware of my triggers and what to avoid. I’ve developed methods to handle stress while managing my symptoms. I’ve acquired many helpful tools to live happily and confidently with MS which I look forward to sharing with others who have the condition. Who said, ‘Education is the kindling of a flame, not the filling of a vessel.’ Socrates, Yeats or Plutarch? This is another one of those quotes whose origin is not entirely agreed on but for the sake of this article, it doesn’t matter because all I want you to focus on is the message.
by Jennie Q. Lou
Cognition means knowing or perceiving. No matter what you are doing, your nervous system tries to provide you with the most accurate picture of reality. Your cognitive processes refine this picture and make it possible for you to use it in every area of your life because they are what enables you to understand what is going on around you. These adjustments come up with plans for dealing with changes and putting your plans into effect. Judging whether or not your approaches worked, remembering them if they did and then modifying them if they didn't are all cognitive processes. Every aspect of dealing with MS is based on the use of your cognitive abilities therefore it benefits you to be aware of them.
These cognitive symptoms tend to be sensitive to changes in your level of stress so they serve as warning signals. Changes in the ways your cognitive abilities are working may provide some useful clues you are approaching your limit. Armed with these warning signals, you may be able to slow down and re-adjust before your symptoms intensify.
The most common cognitive difficulty in people with MS is mild to moderate impairment of short-term and working memory. People who usually have good memories may find themselves forgetting things. Sometimes they find it hard to keep track of what they were doing before they were interruptedthey may have difficulty getting back on track if the phone rings while they were sorting mail. These problems may be subtle but they can be frustrating and upsetting.
Some people with MS experience more serious cognitive problems. They have difficulty with planning and problem-solving and tend to become overwhelmed when a task is too complex. They may lack the flexibility to
generate alternative solutions. Comprehension of the effect of their behaviour on others may be overlooked.
Difficulties with the self-regulation of behaviour can create problems in different ways. Difficulties with getting started may appear to others as lack of motivation. Others may have the opposite problem of being unable to stop themselves. They may be very talkative and uninhibited, blurting out comments they would have kept to themselves in the past. They may have a short fuse and experience unpredictable outbursts. Cognition involves the coordinated activity of your entire brain. Your cognitive symptoms can result from problems in any part of it. The pattern of cognitive decline is not uniform.
Cognitive Difficulties Observed in People with MS: Problems with memory; low levels of initiative or motivation; fuzzy thinking; problems with balance and coordination; indecisiveness; problems with planning or organisation; problems understanding what you read or hear; poor concentration; you can't control or restrain your impulses; disorientation (you get lost on the way to a familiar place).
Many of these changes in your cognitive functioning may be evidence of depression. As in most cases of the onset of an illness, depression is a frequent reaction to MS. MS-related lethargy and fatigue may be confused with depression. You should talk to your doctor if you feel your cognitive problems may be indicative of depression as medical treatment options are available to help cope with difficult feelings. It is important to remember when your cognitive abilities are not working well, flare-ups in any of your other symptoms may be more likely. Stress can
increase the intensity and frequency of your established cognitive symptoms. The goal of stress management is not to eliminate stress but to find and maintain the right level of stress which allows you to function at your best. The ultimate goal is to prevent them from appearing in the first place. The majority of people with MS experience intermittent cognitive symptoms. With proper approaches to symptom management, you may still be able to control the intensity and reduce the disruptive effects.
Cognitive symptoms are complex and hard to understand and they sometimes seem to threaten your grasp of reality but they're not fundamentally different from any of your other symptoms. Many of these symptoms can be treated effectively once they are identified.
When you look closely at the cognitive demands of any of the tasks you perform regularly, you may notice things are more complicated than they appear to be - there may be a lot of separate steps or smaller tasks involved in performing a particular task. Each one of these steps may place demands upon several different aspects of your cognitive functioning.
Efficient cognitive functioning depends on the coordinated activity of your entire brain, and many, if not most, tasks place demands upon several cognitive abilities at the same time. Everyday tasks such as cooking can present complex cognitive demands. This suggests one of the most important general strategies for dealing with your cognitive deficits; recognise the cognitive demands of the tasks you are trying to perform. It's not simple. One of the basic principles of managing your symptoms is you can't take things for granted. You can't look at the things you do in the old unconscious way you used to. Having cognitive symptoms does not mean you are stupid but you may feel as if you are. This is especially true if you underestimate the demands of the tasks you want to perform.
If you are going to perform a task successfully, you have to be aware of your capacity to meet these demands. Their effectiveness can change quickly. Noticing the beginnings of decline in your functioning should emphasise the importance of observing warning signals. In order to adapt activities, you have to develop effective ways of assessing your cognitive abilities. If you wait until your cognitive abilities are weak, it may be too late to do anything about it. When the abilities allowing you to recognise you're reaching your limits aren't working well and you have difficulty making decisions about
how you should perform tasks or even if you should perform them at all, it's easy to keep going past your limits. It's possible to develop techniques for enhancing your cognitive abilities, and these techniques may allow you to keep on functioning during periods when your cognitive symptoms are affecting you.
It's important to make the most of your good periods. It takes some thought to come up with these things and it's an effort to put them into effect but in doing so, your approaches in dealing with your cognitive symptoms will be there for you when you need them - and they're going to be more effective if you've worked on them in advance. Analysing your experiences and developing your strategies has to take place during your periods of peak functioning. When you're in the middle of a demanding situation and your cognitive symptoms are intensifying in response to it, it's hard to keep up with everything happening to you.
If your symptoms catch you off guard, the demands of your efforts to figure out what to do about them can make them more intense. This can be a vicious circle. Take advantage of your good periods so you can respond to your symptoms in ways that really can help.
In my native country, Belgium, that tiny speck in the middle of the European Union, I spent the majority of my life with my nose tucked in books and working in a library. Then, I realised that aside from my family, I had absolutely zero in common with Belgium’s history, culture and values and knew in order to be happy, I would need to emigrate to the country I had fallen in love with somewhere around age 14 or 15. In short, I yearned
for Ireland. I waxed lyrical about its people, its sense of community, its literature from Joyce, Wilde and Yeats, its history and its open arms.
Four days after my arrival, I started a new job in what was called ‘a paperless company’. Going from a professional bookworm surrounded by hundreds of thousands of sheets of pages to an incident coordinator in an IT company without books tells you all there is to know about my penchant for challenges. My nana said, ‘If you do something, do it well or else don’t start at all.’ Her perfectionism borne from having lived and survived two world wars and having to rebuild towns and communities from scratch, she had a point - one I still apply to this day.
Challenges come in different forms and sizes, as well as reasons. On the first day of my MS diagnosis, in a hospital waiting room of my neurologist, I wished I could undo being so in need to control the narrative. That MS diagnosis had sunk a few items on my bucket list before the ink was dry. There was a need to reset the clock.
Eighteen years ago, in those new surroundings, I didn’t want to adapt to what I was being told. ‘From now on you will have to change your lifestyle and you will have to educate those around you because there are plenty of misconceptions about multiple sclerosis out there.’ I still hear and feel the impact of those words, like glass falling to the floor, breaking in thousands of pieces, cutting deep in what I saw as an intrusion in what I had accomplished the past few years.
Fiercely independent as always, my first thought was, ‘No, I am not adapting to anything. Not happening. With all due respect, professor… I moved to Ireland 2 years, 6 months, 12 days and 23 hours ago. That change you ask of me isn’t happening.’
Educating people? Seriously? They can sort out their own need for information. After trying to ‘educate’ people post-diagnosis, I found most won’t bother. After years of having to justify my life, illness, personal decisions and whatnot I am finally at a place in life where I am able to say to myself… whatever! I think they can sort out their own need for information, just don’t expect me to have to explain away my patient experience as well as my medical knowledge to suit their ignorance. After 18 years with all that hoopla, you do think you’ve made enough leeway to suit those who refuse to see my worth. While some do live through the lives
of other people – imaginary neurology experts graduated from the Google Search Academy – their actions do have an impact. I know I’ve got my gang sorted out. They’re with me. They learn as I learn. We go through exacerbations, sleepless nights and bad days together. I have MS. Big deal. I know what I need to do, and that is not changing my lifestyle. I am walking. I am talking. I can move my arms and legs up and down and I bet I can climb a ladder also. I am going back to work tomorrow and I am going to have a great time. Later that day, a forced dinner with a friend was on the menu because ‘you just heard absolutely awful news and you are so, so in denial.’ Whatever. I am not in denial. I am fine and I am still going to work tomorrow. In a relatively empty, quiet restaurant, however, all I could hear was noise. Buzzing sounds as if bees lived in my ears.
Why did my friends make more hoopla about it than I did? How and when did they suddenly change into fake neurologists when I never asked them to be? Why did the dynamics of our friendships change so suddenly? Oddly, when I went to bed later, I felt cheerful in a curious kind of way. Rather happy, knowing I was not joking about not being able to get up the staircase of fatigue after coming home from work. Rather happy, knowing that I ‘was not a Monday morning case, refusing to go to work,’ something my consultant in my local hospital admitted to when we met. Rather happy, knowing there’s a name attached to the sensation of floors moving up and down, to that awful, wretched facial pain, to that level of tiredness.
Knowing which illness now lived inside my brain and spinal cord, was half the battle won already. Eighteen years later, I tell myself ‘Do not deny your diagnosis but try to defy your verdict.’
What my neurologist asked me to do, did eventually happen. She had all the technical data of what MS was but 18 years later, I now know what MS’s force is capable of. Her strength in knowing what lies ahead has been my backbone for at least 17 years.
I am now a bit slower when I walk and talk and I need more time processing things inside my brain. I also gained a few pounds around the waist because of all kinds of treatments. In the end, denial was short-lived, and I now have a new life. It wasn’t what I had dreamed of, but it’s here to stay. Making the most of life is what counts.
Poem: Television by
Charlie McDonald
Speaking of tv shows of long ago
Many of which kids now will never know
On the Buses with Olive and Reg Varney
The Flintstones and Fred, Betty and Barney
Every night before the news
A different cartoon they would choose
That pesky cat and mouse, Tom and Jerry
Felix or Top Cat were equally as merry
The Magic Roundabout starring Zebedee
Also Dougal the dog and Brian sat under a tree
That annoying Clangers playing on the moon
Bill and Ben who disappeared too soon
Contestant shows were another hit
Usually creating plenty of wit
Open the box or take the money
Michael Miles was quite funny
Bernie the Bolt on the Golden Shot
With Bob Monkhouse, folk liked it a lot
Talent shows like Opportunity Knocks
Hughie Green with his clapometer clocks
Quiz shows that were on before nine
Like one of the best, What's my Line?
Another being Call my Bluff, University Challenge now that's enough.
Entertainment shows like Daktari and Skippy
A cross-eyed lion, a chimp and a kangaroo that was lippy
Cowboy shows were also all the rage Bonanza, High Chapparal on the wild west stage.
Comedy shows there were many
Mr Hill, not Harry his name was Benny
Sid James in Bless this House
To the Liver Birds and Man about the House
Some that would not ever be repeated
For fear of those PC folk getting over heated
Love thy Neighbour and It Ain’t Half Hot Mum
Till Death us do part, are just some.
Then of course the ones of the boys in blue
Z Cars, Dixon of Dock Green, it's how we grew
The Test Card used to come on at the close of day
To the sound of the National Anthem for us to say!
Digital exercise, art/crafts and social sessions
Digital exercise, art/crafts and social sessions
MONDAY [10:30 – 11:30] CHAIR BASED EXERCISE 849 9861 7350
MONDAY [13:00 – 15:00] CRAFTS and ART 874 2837 4955
TUESDAY [10:30 – 11:30] CHAIR BASED EXERCISE 879 1483 8365
WEDNESDAY [11:00 – 12:00] SEATED YOGA 881 0351 4498
WEDNESDAY [14:30 – 15:30] SOCIAL GROUP 523 586 175
THURSDAY [10:15 – 13:00] FACE TO FACE CHAIR BASED EXERCISE
THURSDAY [10:30 – 11:30] CHAIR BASED EXERCISE 874 2952 4677
FRIDAY [10:30 – 11:30] MINDFULNESS 867 002 729
Receipts and Payments for the period 1 January – 31 December 2024
by Laura Walker
Did you know that testosterone is just as important for women as it is for men? Though we produce it in smaller amounts, this powerhouse hormone plays a critical role in:
Building and maintaining muscle strength
Boosting energy and motivation
Supporting a healthy libido
Improving focus and mental clarity
As we age, testosterone levels naturally decline, leading to fatigue, decreased muscle tone and low motivation but with the right nutrition you can support healthy testosterone levels.
Foods to support testosterone production and nourish your body with these testosterone-boosting nutrients:
Zinc-rich foods (lean beef, shellfish, pumpkin seeds)
Protein sources (eggs, chicken, beans)
Healthy fats (avocados, olive oil, nuts, and seeds)
Omega-3 fatty acids (salmon, mackerel, walnuts)
Foods to eat when testosterone is low, combat low levels and maintain balance:
Cruciferous veggies (broccoli, kale, Brussels sprouts) to reduce hormone blockers
Antioxidant-rich fruits (pomegranates, blueberries) for hormone health
Complex carbs (quinoa, sweet potatoes) to keep energy stable
Dark chocolate (in moderation!) for magnesium, which supports hormone production.
Pro Tip: Pair good nutrition with regular exercise for maximum hormone support and strength-building benefits.
by Mona Sen
When I wake up in the morning, why don’t my limbs function? The spasticity in my left leg makes bending it impossible. When I try to get off the bed, my entire body acts like a massive log. Naturally, my mission is to figure out how to stay on the bed, bend my left leg, sit up and get both legs off the edge of the bed without falling off. This requires thinking and intuition - pretty hard at six in the morning. There is a bedrail on my right-hand side which I try not to grab before I get both legs safely down, otherwise my whole body is pulled down with unintended momentum.
I am describing how I think in the morning because as my day progresses and I drink more water, my movements and fatigue seem more manageable. It makes sense, because as I see it, the water bathes the cells, making them more flexible and supple. I have reduced my coffee to only one cup so I can start hydrating after that cup.
One of the things I do every day is use the toilet which requires pulling myself up with bars so I can position myself on the toilet. It is wonderful to have bars but one needs energy to use them! At this point everything I do, especially in the morning, requires energy.
Because of a condition known as aspirin exacerbated respiratory disorder, caused by a dysregulated immune system, I cannot drink alcohol. The reason I bring this up is because by not drinking alcohol, I reduce the amount
of dehydration caused by drinking alcohol. This affected me negatively in the past: I can tell because now I feel better.
There are three areas where hydration makes a huge difference: transferring in and out of my wheelchair, using the bathroom and taking a shower. The first area is transferring from one surface to another. I call being able to do this one of the most essential parts of my life. How would I sleep if I couldn’t transfer to or from my bed? When I am ready to go to bed after brushing my teeth, I set up my wheelchair close to my bed. All my arm strength and whatever leg strength I might possess depend on my hydration level. When I drink water any medication in my system is flushed out properly. I have noticed when I get ready to transfer, I know if I have the strength to complete the action. If I am not hydrated, it doesn’t work.
Using the toilet requires arm strength. When I go to the bathroom, there are three bars surrounding the toilet. It is all very convenient but only if there is strength in my arms to be able to pull. Hydration makes my overall strength better.
There are three bars in the shower two to help me stand up momentarily and one to guide me back out. It is very tempting to take a shower whenever I feel like it but that is not the way this works. The days of jumping in the shower are gone. Now, preparation work beforehand must take place, such as setting out my underwear since I have bladder issues. What I wouldn't do to shed my clothes and get in the shower momentarily.
There are two things I wanted to bring up in this context: spreading out one’s daily medication and bladder issues affecting hydration. I just began taking my medication after a meal, with time allotted between medications. I allow an hour between each medication instead of taking them together. I also allow time between the blood pressure medication and the rest.
Other people with MS have told me hydration scares them because of the constant need to go to the bathroom. This is a real fear. This is what I do:
whenever I have to leave the house and easy access to a bathroom, I refrain from drinking (especially coffee). When I return, I sip water and suck on ice cubes to make up for lost time. The way I hydrate generally is to sip water throughout the day. This way I don’t overdo nor underdo hydration. The ancient Chinese philosopher Lao Tzu was known to say that nothing is safer or more flexible than water and as a result, very irresistible. Others call water the very foundation of life. This thinking goes back thousands of years and is one of life’s best kept secrets.
by Karen Asp
The popularity of yoga continues to surge. The benefits of a regular practice can be wide-ranging, including relief from pain, increased strength and flexibility, stress relief, better breathing, weight management, cardiovascular conditioning, better circulation and a calmer mood. While nearly every version of this ancient practice incorporates some degree of strength, flexibility and breath work to improve mental and physical well-being, not all practices are alike. Within yoga, you can find variations from gentle restorative practices to sweaty, challenging workouts. If you want to get into yoga, there are lots of options and if any of the following myths about yoga have been keeping you from trying it, don’t let them.
I’m Not Flexible
Social media is rife with yogis who can move their bodies in unimaginable ways so it’s easy to see why you might think yoga is only for flexible folks. It’s time for a reality check. You don’t do yoga because you’re flexible; you do it to increase your flexibility and mobility. We all have to start somewhere and each pose can be modified to fit where you are on your own personal flexibility journey.
Yoga (and the stretching you’ll do as part of it) is good for all levels of exercisers. While you may never be able to stretch like the Instagram yogis, your flexibility will improve over time. Most people start noticing a difference after three to four weeks of practice.
Good news: back pain shouldn’t disqualify you. Yoga can be modified for almost any medical condition. For instance, if you have glaucoma (a disease damaging the optic nerves) you need to avoid dropping your head below your heart. While medical issues shouldn’t hold you back from doing yoga, if you do have a health condition and you’re not sure if yoga is suitable for you, check with your doctor and ask if there’s any movement you should avoid. The yoga instructor should be able to show you pose modifications to make that happen.
Though often associated culturally with Hinduism and Buddhism, yoga does not necessitate a set of religious beliefs and can be practiced in a completely secular way. Yoga promotes the idea of peace and purpose which some people equate with spirituality. If you’re not into that, many instructors focus solely on the physical aspects of yoga.
Women do make up a majority of yoga participants - about 7 in 10 of practitioners – but the benefits of yoga extend to anyone who is interested in fitness. Yoga helps everyone improve joint mobility, range of motion and overall core stability. These benefits can help both men and women with performance goals across a wide range of sports, from weight-lifting to running and much more. Additionally, yoga promotes good posture and muscular control and involves many of the smaller stabilising muscles and tendons not getting the same attention and stimulation with other workouts.
Yoga
Yoga does involve a lot of stretching but you’re gaining more than just flexibility and mobility: you’re building strength. Many of the movements involve holding your own body weight as resistance and this can improve muscular strength and endurance.
You have time, you’re just choosing to spend it doing other things. There’s no minimum or maximum amount of time you need to do yoga. Longer sessions can offer more benefits (depending on why you’re practicing and what results you’re looking for) but short ones can boost mood, relieve stress and increase physical fitness. You can do simple yoga flows at your desk to
alleviate pain, increase cognitive function and lower stress. Do five minutes of Sun Salutations in the morning or at night to achieve those same effects. Yoga will get in the Way
Because of the restorative, strengthening and meditative aspects of yoga, experts say the right type of yoga complements nearly any other type of physical activity. If your muscles are tight, your muscles are also weak and if you lack flexibility, you’re unable to access the muscle’s entire power potential. By doing yoga, you may find you can perform better in other activities like strength training and aerobic exercise. Yoga gives those muscles much-needed relief from other activities as most yoga is designed to heal and aid in active recovery.
The key is finding the right practice to balance out the other types of activity you’re doing. If strength training is your primary focus, look for a yoga practice focusing on flexibility and mobility. If you’re spending most of your time doing cardio, look for a yoga practice helping you build strength. If you’re following an intense training plan for an upcoming race or event, check out a restorative yoga practice.
Editor’s Note: We offer seated yoga on a Wednesday morning at 11am. Why not come along and try Nicola’s session. See page 18 for Zoom access details.
by Shira Isenberg
Finding reliable information about multiple sclerosis and diet can be frustrating. To date, no study has been published showing diets influence disease progression in MS. One study concluded, There is insufficient evidence to recommend the routine use of any specific diet by people with MS and some diets touted for MS may have potential negative health consequences. To date, no one has written about symptoms reversing because of a diet.
Research from 2022 indicates certain dietary changes, including reduced meat intake, may influence disability progression in MS. Among more than 1,300 people with MS, consuming a high-quality, meatless diet was found to be associated with reduced disability progression. Early evidence shows people with new-onset MS may benefit from the MediterraneanIntervention for Neurodegenerative Delay (MIND) diet which emphasizes consumption of whole grains, berries, vegetables, fish, poultry and olive oil. A study published in 2021, which included 180 people diagnosed with MS less than five years prior, found adhering to the MIND diet was associated with greater tissue volume in certain parts of the brain and smaller lesion size but more long-term research is needed to confirm these potential benefits.
In MS, the immune system mistakenly attacks the myelin sheath (the protective coating on nerve fibres in the brain, spinal cord and optic nerve), potentially disrupting nerve activity throughout the body. The damage to the myelin sheath can have a range of physical and mental effects, including fatigue, difficulty walking or seeing, problems with swallowing, bladder control issues, constipation and other bowel changes amongst others. Each person with MS deals with a unique set of symptoms
which are likely to change over time. The unpredictable nature of the illness makes it challenging to generalise nutrition recommendations and advice. Many people with MS struggle with the same types of diet challenges as the rest of the population, including obesity and a sedentary lifestyle. Like everyone else, people who have MS can benefit from a healthy diet - with modifications to fit their symptoms and lifestyles.
Boost your Energy by Following a Healthy
The majority of people with MS experience fatigue which can interfere with daily activities. Some find following a balanced diet helps increase their energy level. Generally speaking, this means eating sufficient calories from a mix of lean proteins, wholegrain carbohydrate sources and healthy fats (from fish, nuts, seeds and oil).
The challenges posed by MS can make it tough to maintain a healthy weight. Some people with MS have trouble moving due to the condition or are depressed because of it. Mobility challenges or mood disorders make exercise difficult and reduce energy expenditure often leads to weight gain. Difficulty shopping and preparing meals may also lead a person with MS to rely more on processed, ready-to-eat foods or takeaway which are often high in calories, sodium and fat and low in nutritional value. So much so, research has suggested malnutrition is not uncommon among those with MS. People with MS can maintain a healthy weight and lose weight by controlling portion sizes and cutting down on junk food and eating out. Avoid sugary sweets, white flour and fried foods to help control weight.
Going Plant-Based may Help you Lose Weight
Moving toward a plant-based diet - not necessarily vegan but one incorporating more plant foods and fewer animal products - may promote a healthy weight. In a study in which 22 people with MS followed a very-lowfat, plant-based diet for 12 months, participants lost just over a pound a month on average. Plant proteins like beans, tofu, seitan, nuts and nut butters and seeds are rich in nutrients yet lower in calories and saturated fat than animal proteins - traits assisting with weight control and promote wellness. Plant foods - particularly grains, beans, fruits, and vegetables - are also good sources of dietary fibre which promotes fullness and bowel regularity and helps reduce calorie intake. For those not used to vegetarian meals, it may be
helpful to start with one meatless dinner each week. A dietitian can also help you learn about healthy food options that are easy to prepare.
Many people with MS have learned through trial and error that some foods worsen - or ease - specific symptoms. Because getting overheated can worsen symptoms of MS, food temperature may be an issue. Hot soups may temporarily sap energy, while a cold treat can help stay cool.
A rarer MS symptom, trigeminal neuralgia, which causes sudden severe facial pain, can make eating difficult. Softer, plainer foods such as breads, potatoes and cottage cheese were easier to eat if you struggle with this pain. For constipation, choosing higher-fibre fruits, vegetables and grain products is key, along with getting adequate fluids.
Eating fish appears to benefit MS symptoms like fatigue. Regular fish consumption appears to be strongly associated with lower clinical fatigue levels. In a study published in 2021 researchers found eating a healthy diet was associated with improved mental and physical quality of life, especially in women with MS.
Certain nutrients, including omega-3 fatty acids and vitamin D, have been studied for their potential benefits for people with MS. Omega-3 fatty acids are considered essential fatty acids, meaning your body needs them but cannot make them on its own, at least not in the quantities needed for good health. A diet high in omega-3 fatty acids has been shown to reduce inflammation and may help lower the risk of such chronic diseases as heart disease, cancer and arthritis. Many studies of omega-3 fatty acid intake in people living with MS or at risk of developing MS have hinted at potential benefits but the results have not been statistically significant. Omega-3 and fish oil supplementation do offer several benefits for people with MS. Supplementation lowered relapse rate, reduced inflammatory markers and improved quality of life. Discuss omega-3 supplementation with your doctor before trying it.
Omega-3 supplements can interact with anticoagulant medications (blood thinners) as well as with insulin and oral drugs for diabetes and high blood pressure. Little is known about the safety of combining omega-3 supplements with MS medications. Instead of taking supplements, a more moderate
approach to increasing your intake of omega-3s is incorporating fatty fish, canola oil, flaxseed, and walnuts into your diet on a regular basis.
This fat-soluble vitamin which the body can produce in the skin with sun exposure, plays a role in regulating immune activity. Because MS seems to be more common in areas with less sunlight, researchers have suggested vitamin D may protect against MS. Studies have shown vitamin D supplementation may have beneficial effects on inflammation in people with MS but more research is needed before people with MS can be advised to take more vitamin D than needed to correct a vitamin D deficiency. If an individual with MS is deficient in vitamin D, correcting low levels can be beneficial to health even if it doesn’t have a direct effect on symptoms. Have your vitamin D levels checked before supplementing and discuss whether and how much to supplement with your healthcare provider.
Since medicine and nutrition are constantly evolving fields, it’s important to keep an open mind about what might help and what will never work. At the same time be wary of diets that sound too good to be true. Because MS is so individualised, a diet that helped someone else may not work for you. While there are general rules aiding good nutrition, there is no one-size-fits-all diet. It’s best to consult your GP or a registered dietitian when making a plan. They will base a programme on your symptoms and your type of MS.
by Caroline Craven
The MS got a hold of me, worse than it’s been in months. There were reasons. Pushed beyond comfort by demands of life, it caught up with me and caught up bad. Often, we talk about the physical pain of MS, the tremors, the spasticity. The pain coming from every nerve ending or the fatigue covering us in a lead blanket. Then the pain wanes and we feel better for a bit but the emotional sludge remaining behind is detrimental to our health and happiness.
Did I feel it this morning when the day started. Frustrated, irritated and angry at life, my legs crumbled their way out of bed. There was no jumping for joy today. Why is MS suffocating me and keeping me jailed in my body? I aim for happiness. Positive thinking is my focus but today I’m not going to fight it. My emotions are way over the top upset and there’s no denying I despise my MS right now. Unfortunately, the angrier I get the more worked up my MS becomes. This isn’t productive or healthy.
Time to force a change! I’m using the word force. Enter something beautiful in life: a sit in the garden; a chat with a friend; a stroll through the neighbourhood. Find the beauty, grace and appreciation that is the bases of life. It’s there but when I’m this worked up it’s hard to see beyond the tears. Forcing this is easier than it may seem. Sitting in the garden for a few minutes is helping.
Breathe Deep Exercise [Meditation / mindfulness]
1. Breathe in deep to the chest.
2. Take the breath deeper, into the belly and gut and let it distend out as far as possible
3. Keep taking in more air, aware of the beauty around you.
4. When full of air, sit a second then exhale deep.
5. Exhale through the mouth, letting out everything dirty, angry and evil. Repeat! Ahhhhh ... feeling so much better already. Now to remember this trick during the busyness of the day - I am calming down and taking time to record my issues. Even after 20 years of this illness, I am still learning about it. Today was a lesson learned. After three days of physical hell the emotional hangover was even worse. Next time my body faces exacerbations from mismanagement I must remember this tailing wind of emotions that have entwined me.
by Regina Boyle Wheeler
Some people with multiple sclerosis develop foot drop, a weakness in the ankle and foot muscles making it hard to flex the ankle and walk with a normal heel-toe pattern. With foot drop, your toes touch the ground before your heel which can cause you to trip or lose your balance but a variety of treatment options can improve your ability to walk and help you stay active. MS-induced tightness in the calf muscle can contribute to the toes' pointing downward making it more difficult for the muscles to lift the foot. When you walk with foot drop, you may catch your toes on the ground and trip because you can’t lift the toes out of the way when swinging the foot during a step. Foot drop results from poor nerve conduction to the muscles used to flex the ankle. To avoid tripping, people may lift their hip up higher than normal, leading to a walking appearance called a steppage gait - they might appear to be going up a step. Walking differently to compensate for foot drop takes a lot of energy and may tire you more quickly. Foot drop can sometimes be caused by something other than MS, like a pinched nerve. When foot drop is due to MS, it can occur as a new or recurring symptom during a relapse. When a MS relapse causes foot drop, it's likely to get better over time, often after a course of steroids but when foot drop occurs in someone with progressive MS, the weakness may get worse. Treatment for foot drop can greatly improve mobility and make walking less tiring.
Treatment options include:
Physiotherapy can help improve strength and stiffness for people who have foot drop. Your physiotherapist will identify whether weakness, spasticity or both are causing the foot drop and will then prescribe specific exercises for you. The therapist will determine how foot drop is impacting your functioning and will investigate whether an assistive device might help you get around better. A brace called an ankle foot orthosis (AFO) is commonly recommended to help manage foot drop. The brace is worn around the lower leg and foot. Most AFO braces hold the ankle and foot in a fixed position but some have a hinge allowing the ankle to move. Some AFO braces fit inside regular shoes; for others, you'll need to wear an extra-deep shoe.
Functional electrical stimulation (FES) involves the application of a mild electrical stimulus to a muscle in order to help it move better. In some cases, when MS causes nerve damage, the muscle no longer receives the correct message from the central nervous system. FES typically involves a wearable device delivering an electrical current to stimulate the peroneal nerve just below the knee and the muscle needed to lift the front of the foot. The stimulation is timed to lift the foot during the swing phase of walking to prevent it from dropping or dragging. On the plus side, many people find FES devices easier to wear and more convenient than an AFO but they are more expensive. While FES devices have been shown to help improve walking speed, they won’t help everyone with foot drop. A rehabilitation specialist with experience in MS can help you choose the right assistive device for you. Surgery is not an option for foot drop that's caused by MS because the nerve injury originates in the spinal cord and causes a disruption to the pathway lifting the foot. Other conditions, such as a herniated disk or compressed nerve might be fixed by surgery as there is something pressing on the pathway - then the disc or other mass can be removed. An MS lesion is a different problem and cannot be fixed with surgery. David Altman was diagnosed with MS in the 1970s as a college student. In 2005, he developed foot drop on his right side. He was fitted with an AFO but couldn’t bring himself to put it on because it made him feel self-conscious. He spent four years limping until he got a functional electrical stimulation device which he says changed his life. In addition to the functional electrical stimulation device, Altman says strength training and other exercises enable him to live successfully with MS.
Should you wish to get in touch please e-mail us at info@youraims.org. Ian Gourlay is our chairman and newsletter editor. You can telephone Ian on 01224 820453, write to 43 Gordon Place, Bridge of Don, Aberdeen AB23 8RB or e-mail ian.gourlay@youraims.org
Anyone living in the NHS Grampian catchment area has access to the M S nurses. The Aberdeen team is based in the Department of Neurosciences, Ward 205 [Pink zone], Aberdeen Royal Infirmary. Contacts at ARI are: Mairi Maguire, Pauline Wilson and Julie Robertson. They are available Monday to Friday 08:30 – 16:30. An answering machine may take a message and a nurse will call you back as quickly as possible. Telephone: 01224 551263 e-mail address: gram.msnurses@nhs.scot
The MS Society offers free advice on any matter relating to multiple sclerosis to anyone affected by the condition. Telephone: 0808 800 8000 open 9am – 7pm Monday – Friday for an immediate response. There is an answering machine to leave messages over a weekend and someone will get back to you as quickly as possible. e-mail: helpline@mssociety.org.uk
The MS Trust believes nobody should have to manage multiple sclerosis alone. Its enquiry service is available 9am - 5pm Monday - Friday. Telephone: 0800 032 3839. Email: ask@mstrust.org.uk or visit the website https://mstrust.org.uk/what-we-do/aboutus/information-team
The content of this publication is for information purposes only and does not constitute advice or a recommendation. Where we provide information about external organisations or service providers, we are not able to offer any guarantee on the quality or safety of their services or products or whether they are suitable for an individual’s needs. We take no responsibility for any errors or omissions in this information.
Aberdeen Independent Multiple Sclerosis is a SCIO regulated by OSCR Scottish charity number SC051225
Registered Office: 43 Gordon Place, Bridge of Don, Aberdeen AB23 8RB