Aberdeen Independent MS
Autumn 2024 Newsletter
By the Light of the Moon by Syd Fraser
This is my MS Mental Health
by Jenny Clarkson
I thought an update about my mind symptoms might be interesting. Namely, cog fog and my mental health. Covert difficulties can change over time - some for the better and others, not so much. It’s easy to notice the changes you go through physically, purely because you live with them daily. Changes in attitude, mental health and cognitive function are more difficult to recognise. Reading back journal entries I made and remembering chats I had with family and friends help me to see the changes objectively.
The Positives
Life - I wrote about my mental health in 2017. Much has gone on since then in my private life and with my health. My husband and I went through a period of separation largely due to the stress my chronic illness brought us. Without going too much into it, unless you live with someone or you are someone with a long-term chronic illness, it can be difficult to understand how much it affects those around you. Sometimes it may take a break from the situation or a person to recognise how much the chronic illness has
overshadowed a fundamental, loving relationship. After a difficult few years I’m pleased to say my husband and I are together again and that’s impacting positively on my mental health.
HSCT - I’ve been through Haemopoietic Stem Cell Treatment for my MS which resulted in me losing my hair, having time away from my family for an isolated stay in hospital and having to be very careful not to pick up any kind of bug. I’m pleased I had the treatment before COVID-19 raised its ugly head. Going through that kind of treatment, feeling so poorly for such a long time, really took a lot out of me. I was scared and I wondered whether the upheaval and uncertainty around whether it would help my MS. You know what? I got through it. I’m proud of myself and in hindsight, I was determined to do anything to positively impact my MS and its progression. Only this week I read an article that said people with active SPMS who have HSCT are shown they could progress more slowly than those who were on diseasemodifying drugs.
Work – These last six years saw me having to take early ill-health retirement from my job of being a NHS speech and language therapist. Since then, I have built up a successful independent speech and language therapy business working around my health needs from home. I work with some lovely parents and children and although I can only see a few children a week instead of the six a day I did when I was in NHS work but it means I’m doing something I love whilst I still feel like I can. I might not always feel it but as someone who has lived with MS for over 29 years, I am a mentally stronger person than I feel I would’ve been if I never had MS.
The Negatives
All the things I detailed above – the separation, the retirement, the treatment – came with a hefty dose of negative feelings. I guess it’s only in hindsight I can say everything I went through has made me a stronger and more positive person. I realise though, I struggle in some respects in terms of my mental health and I suspect these feelings are going to stay but the motivation to keep going and keep doing everything I can to be as well as I can with MS is getting mentally more difficult. As my MS progresses, my positivity begins to falter. The reality is multiple sclerosis is a progressive disease and I, as
someone with secondary progressive MS, have to accept not everything which may help others with MS is going to help me in the same way.
FES - A good example of this is my recent use of a functional electrical system. I had convinced myself it was going to be a game changer. I’d seen videos of people using a FES and suddenly being able to walk without crutches or a stick. That’s not the case for me, it just makes me feel slightly steadier when I’m using my crutches. I know this in itself is positive but I still wanted that miracle of being able to walk without mobility aids. I persist with it though because I know it helps me to walk more steadily and safely.
OMS - I was steadfast in my belief the Overcoming Multiple Sclerosis programme would have a positive impact on my worsening MS. OMS encourages plant-based eating, meditation, exercise, vitamin D and the use of disease-modifying drugs in order to help you keep you as well as possible. I started following it when I noticed my walking worsening. I thought it was going to be like a magic pill and if not fix my problems, at least stop them in their tracks. Although I’m not as perfect with the program as I was in the past, I still avoid dairy and limit saturated fats, as well as the other recommendations.
I take an anti-depressant – duloxetine – to support my mental health. I’m lucky this medicine also helps with chronic pain which is another feature of my MS that worsens the longer that I am living with MS.
Cog fog, also called brain fog is common in many chronic illnesses. Healthline estimates more than half of people living with MS will develop cognitive issues - difficulty understanding conversations, thinking critically or recalling memories. For me, cog fog typically manifests as struggling with lots of noise, some short-term memory difficulties and problems with word finding. It is something I’ve noticed more over the past few years, though I’m lucky it does not seem to happen when I’m working with the children in my speech therapy work. One of the main reasons why I gave up my NHS work was because I found it difficult to think on my feet in team meetings and feel like I was as on the ball. I have started playing games on my phone – namely, boggle and sudoku – to help and I find using my skills to support word-finding really helps. I should probably use an app that would help me with my memory too.
I find cognitive health is not something that is discussed a great deal, including by the neurologists who oversee our care. Mental health is something which is being talked more about now which can only be a good thing and makes it easier for those of us who may be struggling to reach out for help.
[Editor’s Note: Jen is a 40-something Mum to teens, living with Secondary Progressive Multiple Sclerosis who writes a blog named Tripping Through Treacle which you can follow on her website]
Poem: Mart Cart
by Robert Gillett
We've all seen them, they're always in the way, I never would have thought, that would be me one day. Embarrassing at first, now I must admit, I think they are AMAZING! They are a smart bit of kit. That massive scooter, the one with the basket sticking out, If you haven't yet, try it, you'll love it, no doubt. All those people, they cannot help but look, I think they're jealous, they have to do their shopping on foot. Who would have known, it would be this much fun? I couldn't think of a better way to get the shopping done. Get the bread, the milk, the pasta and the cheese. I am so fast in the shop, you wouldn't believe. My legs barely work, it does break my heart, But I do love shopping, in the chunky Mart Kart.
Why I’m Thankful for my Multiple Sclerosis Diagnosis
by Cathy Chester
John Lennon famously wrote, ‘Life is what happens when you’re busy making other plans’ . The life we imagine for ourselves isn’t always the one we get. Our paths can take sudden turns down unexpected byways, leaving us to battle unchartered territory. I am living with an unpredictable and incurable disease called multiple sclerosis. Strength, resilience, hope and courage are important words to remember while thinking about the MS community. And of course, a cure.
I’ve always tried to look for a silver lining in any situation, despite any challenges. That’s part of a sound mental wellness plan. Then it hit me! As an obsessed fan of classic films such as It’s a Wonderful Life, I thought about Clarence…you know, Clarence the Angel. Like Clarence granting George Bailey the ability to see what life would have been like if he’d never been born, I wanted to write how different my life would have been without my diagnosis.
• I would never have known the joy and unconditional love of dating someone who proposed marriage to me despite my recent diagnosis. (This year is our 35th wedding anniversary)
• I would never have felt the unconditional compassion and understanding of family and friends who love me at my best and worst.
• I would have missed out on knowing extraordinary nurses who went above and beyond anything they learned in nursing school.
• I wouldn’t know many extraordinary people in the MS community, and other health-related communities, who continue to inspire and educate me through their examples.
• I would not have had a reason to use my love of writing to inspire, educate and empower others to live, as best as possible, a positive life after a difficult diagnosis.
• I would not have had an opportunity to write for health-related websites and online publications that allow me to write about something I feel passionate about.
• I would not have had a chance to be a speaker and a consultant for many organisations where I’m free to speak about MS from a patient’s perspective.
• I wouldn’t have been able to teach my son, by example, disability doesn’t mean inability, and tolerance, compassion and understanding always matter most.
I look forward to the day when I can finally say I used to have MS. That will be the greatest day of all. MS is something I’d never wish for but as a friend once said to me, ‘You’re part of a club you never wanted to be in but since you are, you may as well be one of the cool kids.’ I’ll be mindful that despite my diagnosis I’m surrounded by many blessings and like George Bailey, I cannot be a failure because I have many wonderful, caring friends – both near and far.
I’m thankful for my diagnosis because it taught me self-compassion, survival, the importance of careful research and always keeping hope in my heart.
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Managing Weight for MS by
Mary Ellen Ellis
MS causes fatigue, making you feel too exhausted for physical activity. The pain and dizziness can affect your energy levels when it comes to exercising. Symptoms of depression are common for people with MS - depression may cause overeating or undereating, both of which can impact health. MS treatment can cause weight fluctuations. Steroid therapy is often prescribed to decrease inflammation and it can cause weight gain. Exercise is beneficial for people with MS, whether they want to lose or gain weight. Though gaining weight is more common with MS, weight loss and muscle wasting can occur in advanced and serious cases.
People who experience muscle loss usually have symptoms severe enough to limit mobility. Exercising and eating a balanced diet can help you avoid losing muscle mass. Fatigue and MS symptoms can make exercising regularly more difficult but there are activities which may be more beneficial when you’re experiencing symptoms. For example, swimming doesn’t put pressure on your joints. Water activities may help with your symptoms if your body temperature rises while exercising. You can also wear a cooling vest or scarf when doing outdoor activities. Exercises don’t have to be physically draining. A short walk each day can make a difference. You can also practice low-impact exercises like stationary bicycling, tai chi and yoga. Yoga may help relieve certain symptoms, improve muscle strength, reduce stress levels and reduce your
fatigue which may motivate you to do more exercise. Consider using personal trainers who’ve worked with people who have MS. They can help develop a strength-training program that suits your overall health condition.
Health benefits of exercising include reducing weight, strengthen muscles, improve mobility, increase energy levels, reduce the severity of your MS symptoms, improve your mood and boost immune function. Exercise can also help reduce stress and improve your mood. It stimulates your brain to create natural painkillers or endorphins.
Eating nutrient-rich meals goes hand in hand with exercise for weight loss but it’s important not to think of your eating habits as dieting, especially when there’s no specific eating plan for people with MS. Most specialists recommend people with MS follow a lower fat, high fibre diet. In general, weight loss happens when you burn more calories than you consume.
Sticking to a well-balanced meal plan and learning portion control can help you achieve your weight loss goals. The quality of food also counts - stick to whole, unprocessed choices such as fresh fruits and vegetables, whole grains, lean proteins olive and fish oils. There’s evidence omega-3 and fatty acids have benefits for reducing relapse rates, inflammatory markers and quality of life for those with MS.
Exercise is important, especially if you’re trying to gain weight. In addition to strengthening your muscles, exercise can stimulate your appetite. Being underweight may also be a sign of nutritional deficiencies. A dietitian can help you create a diet to help you to put on weight.
Planning your meals and cooking more than you need so that you can have food that’s easily reheated may help, especially when you don’t feel like cooking. It can help you avoid skipping meals.
Maintaining your physical health, mental health and keeping your stress levels low can help keep your weight in a range that benefits you.
For most people with MS, it’s possible to manage weight loss or gain. Exercise can help with both, as well as symptoms of MS. Some physical activities such as swimming and yoga may also be more beneficial than others if you frequently experience symptoms. Reach out to your GP if you’re having difficulty managing your weight or want advice about eating or staying active.
Understanding my Relationship with Stress and MS
by Matt Allen G
Stress is bad. It’s bad for everyone but it’s really bad for people living with MS. Sometimes stress can cause a temporary flare-up of symptoms; sometimes it can trigger a full-blown exacerbation (relapse). For this reason, it’s vital anyone living with MS learns how to navigate the stress in life. That can be much easier said than done.
From day one of my MS journey, stress has been my top MS trigger. A little stress can go a long way and I was terrible at handling it. My legs would become so tight I could hardly bend them, making it feel like I was walking with two wooden peg legs. Sometimes this would also result in other symptoms flaring up like clonus, visual problems or extreme fatigue. Eventually, I realized there were two main types of stress in my life: stress from things I could control and stress from things I couldn’t. It took me a long time to accept that. Once I was able to come to terms with the idea I couldn’t control everything, it became easier for me to handle my stress. This was a must because it was literally about my health. When it came to treating my MS, I saw the role of stress management to be as important as diet, exercise and medication.
As I do with most things in life, I started with a list. This list was divided into things I could control and things I couldn’t. I wrote down everything causing me stress so I could address them. Moving the chaos of stressful thoughts in my head to a piece of paper also gave me a small sense of control and calmed me down a bit which is why I still write these lists today. Let’s look at an example of a source of stress I can control: going to the supermarket. What was once a simple trip to pick a few things up is now an almost guaranteed experience of sensory overload. As my vision starts to blur
and my sensitivity to sound increases, my world turns into a chaotic mess of colours, shapes, movements and noise. Sometimes this feeling goes away by the time I get home but other times it takes me a while to recover, meaning my day is essentially over. How could I manage this particular problem? Simple: by shopping online. I can get everything I need at my own pace without the stress of going to the supermarket. Much of the stress in life isn’t the result of something we can control. When looking for stress management advice, people often advise you to focus on what you can control in these situations - your reaction. I try to be self-aware of how I respond to things but it’s not always easy, especially when you’re feeling terrible due to MS. Sometimes I don’t have it in me to slow down, take a deep breath and think so I end up letting myself take the easy route and find a way to ignore the problem. Out of sight, out of mind, right - not really, because the problem is still there, eating away at my subconscious. I can’t pretend I know how to best handle stress. I’m better at it than I once was but I’m still not good at it. It can have terrible effects on my ability to manage my MS. All I can say for sure is everyone living with MS would benefit from being taught healthy stress management practices. I imagine this alone would have a massive impact on people’s quality of life and overall health. The best bit of advice I can leave you with is to always try to slow things down and think before you react because how you react can make things better or worse.
Date for your Diary
Christmas Lunch – Saturday 7 December at 12 noon
Venue: Craighaar Hotel, Waterton Road, Bucksburn, Aberdeen AB21 9HS
Are Mushrooms Magic for MS Patients? by
Gary Chester
Anyone who is health-conscious is typically aware of whether certain foods are heart-healthy. Are they nutritious, low in fat, low in salt?
Those with MS or caregivers who often shop and cook for MS patients, should ask an additional question: Does this food have anti-inflammatory properties? The answer is important because foods that inflame the immune system can trigger destructive T-cell activity. It is thought sugar, salt and fried foods may weaken the immune system because they promote inflammation and destroy healthy bacteria in the gut. MS patients should consume foods with anti-inflammatory properties.
My wife and I love to sauté fresh mushrooms as a side dish or add them to soup. We figured mushrooms had little or no nutritional value; after all, they are considered fungi and not plants because they lack chlorophyll. Mushrooms are a great topping for pizza and they add some woodsy flavour to your meal but that’s about it. It turns out we were wrong. Mushrooms are classified as vegetables and they are packed with vitamin B, antioxidants, minerals, fibre and protein.
Mushrooms may fall behind spinach, sweet potatoes and other vegetables as nutrition powerhouses but they are tastier and more versatile than many vegetables. They are terrific in soups, salads, omelettes or sautéed with olive oil and garlic. But back to the nutrients. Mushrooms are rich in leucine and lysine amino acids, which are commonly lacking in staple foods. Some mushroom proteins have antibacterial and anticancer properties. Many types of mushrooms have high levels of vitamin D which may play a role in the functioning of T-cells.
Only about twenty varieties of mushroom are tasty enough to eat. As for antiinflammatory properties - that can vary. Here are a few of the leaders: [a] Shiitake mushrooms are high in amino acids which have antiinflammatory properties [b] Oyster mushrooms contain amino acids, though not as many as shiitakes. [c] Reishi mushrooms contain beta glucans, a carbohydrate which protects the immune system and promotes better sleep. They are difficult to find and are often used in powder form in coffee or soup. [d] The more common white button mushrooms provide a good amount of vitamin D [e] The Pioppino mushroom grows in the holes of a poplar tree. This mushroom has a strong, meaty taste, stands on its own or adds flavour to soups. Of particular benefit to MS patients, Pioppino mushrooms contain a high concentration of iron which is necessary to maintain energy and focus, digestion, the immune system and other vital functions in the body. Mushrooms provide flavour and healthful nutrition. Plus, if you buy them at a farmer’s market, you are supporting small, local businesses. Bon appetit!
How MS Has Changed My Workout
by Devin Garlit
A lot has changed for me over the many years since I was diagnosed with multiple sclerosis. While I often lament the loss of my career, cognitive abilities and relationships because of MS, there is another very important part of my life I feel was stolen: my ability to work out. Well, ok, not completely stolen but over the years, MS has changed the way I exercise and what it means to me.
When I was diagnosed and for a long time afterwards, I was an exercise nut. I played hockey in college and I also spent lots of time in the gym. Physical activity was a passion for me. Even after I was diagnosed, while I wasn’t quite the athlete I had been, I was still active. I lost a lot of my coordination which impacted hockey but I ran and lifted weights. During the first 15 years with MS, I ran a lot of road races and hit the gym pretty hard. It’s possible I over-compensated for MS by using exercise, feeling I needed to be in tip-top shape to combat the condition. Eventually, things took a turn and the damage done in all the relapses began to add up. My fatigue was worse than ever. Pain became an ever-present issue. Forget running, simply standing on two feet for longer than a few minutes became nearly impossible. I started to fall and drop things. Over time, running and lifting weights started to seem like a far-off fantasy for me. Being unable to work out like I once did is something that bugs me. It’s one more source of grief and depression getting added to an ever-growing list of everything this disease has taken from me. I’ll sometimes see someone running on the side of the road and start to tear up thinking about how that used to be me. Like my career, being active was a huge part of my life and one I desperately miss.
While I am unable to be as active or do the same types of workouts I once thrived on, that doesn’t mean I don’t get any exercise. I think exercise is important so I do some; just not as much as I’d like. I’ve made changes, like swapping weights for resistance bands I can use at home (and from a seated position, if my legs are having a rough day). I keep trying to walk. I’ve had less success there. I do it on a treadmill. It has safety rails to hold on to. There is a lot you can do, even when you are limited. My biggest issue has been consistency because there are days when my body won’t work or the fatigue will be too great. When I can get any kind of workout in, it’s incredibly helpful for my mental well-being. I miss what I could do in the old days but I’m learning to appreciate what I can do now and focus less on the past. I encourage everyone with MS to do some sort of exercise as much for your mental as for your physical health.
Digital exercise, art/crafts and social sessions
MONDAY
CHAIR BASED EXERCISE – 10:30 – 11:30: Zoom code 533 545 520
ART / CRAFTS – 13:00 – 15:00: Zoom code 850 4291 5996
TUESDAY
CHAIR BASED EXERCISE – 10:30 – 11:30: Zoom code 137 934 965
WEDNESDAY
SEATED YOGA – 11:00 – 12:00: Zoom code 881 0351 4498
SOCIAL GROUP – 14:30 – 15:30: Zoom code 523 586 175
THURSDAY
CHAIR BASED EXERCISE – 10:15 – 12:45: Trinity church, Westhill
CHAIR BASED EXERCISE – 10:30 – 11:30: Zoom code 874 2952 4677
FRIDAY
MINDFULNESS – 10:30 – 11:30: Zoom code 867 002 729
Financial Update
Receipts and Payments for the period 1 January – 30 June 2024
Donations, fundraising, including Gift Aid
Fundraising: collecting cans
Class
Cheque presentation from Music at the Stocket, July 2024
Photo Gallery
Coffee and chat at J G Ross, Inverurie, May 2024
Coffee and Chat at Kings Community Café, June 2024
Benefits of Seated Yoga by LeonardoBorchi
As we age, finding gentle yet effective ways to stay active becomes increasingly important. Seated yoga offers a wonderful solution, providing numerous health benefits and is gaining popularity and here is how it can positively impact your life:
1. Enhanced flexibility and mobility: seated yoga makes stretching and strengthening exercises more accessible, helping to improve flexibility and joint health which is vital for maintaining mobility as we age.
2. Improved strength and balance: regular participation in seated yoga can help build muscle strength and improve balance, significantly reducing the risk of falls, a common concern for older people.
3. Stress reduction and mental clarity: seated yoga includes breathing exercises and meditation which can reduce stress and anxiety levels, promoting mental clarity and a sense of calm.
4. Better pain management: engaging in gentle yoga poses can alleviate pain and discomfort associated with conditions such as arthritis, back pain, multiple sclerosis and other chronic ailments common in older adults.
5. Community and socialisation: participating in seated yoga classes provides a sense of community and an opportunity for social interaction, contributing to overall well-being.
Seated yoga offers a gentle approach to wellness, addressing physical, mental and social aspects of health. It's a safe, effective and enjoyable way for people to enhance their quality of life. Join us on a Wednesday morning – see page 17 for Zoom access code.
Twelve Ways to Fight MS Fatigue by Chris Iliades
Many people living with MS say fatigue is their most prominent symptom. Research published in 2021 confirmed in a Norwegian study of 1,600 people with MS, researchers found 81 percent of respondents experienced fatigue. Other symptoms may come and go but fatigue seems to be a constant, no matter what stage of MS they’re in. For many people living with MS the word ‘fatigue’ doesn’t quite capture the feeling of being completely depleted. The kind of fatigue coming with MS isn’t the kind coming from exertion. One respondent explains. ‘I can wake up from a night of sleep and feel fatigued. After my shower and shaving, sometimes I literally need to go lie down for a little bit to recover.’
There are many reasons someone experiences fatigue. Some are directly related to MS and some are not. Some of the types of fatigue are trouble sleeping due to muscle spasms, side effects from medication and depression that may go along with a chronic illness.
Neurologic Fatigue such as muscle weakness and spasms use up a lot of energy and can lead to fatigue. Damage sustained over time along nerve pathways can be aggravated by stress, activity, fever and heat exposure. Persistent tiredness is common in many autoimmune diseases and is probably the most common type of fatigue but all these factors contribute to MS fatigue. Is there anything you can do to reduce your fatigue? Experts say yes. Here are some tips for preserving your energy so you can get the most out of each day.
1. Work closely with your healthcare providers. Keep regular appointments with your doctor to assess whether your disease is under the best control possible and you’re receiving optimal treatment.
2. Get plenty of sleep. Practice good sleep hygiene which includes going to bed and getting up at around the same time every day. If you sleep a lot but you still feel fatigued, you should be screened for a potential sleeping disorder. Sleep disorders are common among people with MS but often go untreated. Getting treated for a sleep disorder like insomnia or restless legs syndrome can help alleviate the daytime fatigue people experience.
3. Avoid heat exposure. Getting overheated is a sure-fire way to increase fatigue. Staying cool is a must. Do plenty of advance planning ahead of sunny days. If you know you’re going to do an activity, make sure you take on plenty water and seek out shade.
4. Take care of your overall health. Maintain a healthy weight; optimal blood pressure and cholesterol levels and avoiding type 2 diabetes can help with MS fatigue. If you are out of shape and overweight, everything you do requires more energy.
5. Fuel your body with high quality foods. There’s no specific diet for MS but following a healthy diet that’s low in fat and high in fibre is best. Consuming carbohydrates such as sugary foods and highly refined foods such as white bread, white rice or pasta can cause blood sugar levels to spike and crash. The crash can exacerbate pre-existing fatigue. Good options include:
• Protein-packed options like beans, nuts and lean animal proteins
• Fibre-rich foods, like oatmeal, brown rice and high-fibre cereals
• Fresh fruit and leafy green vegetables
• Fat-free or low-fat yogurt
• Omega-3-containing foods such as salmon and walnuts
6. Practice mindful movement, yoga or tai chi. Forms of exercise that include some form of meditation and mind-body connection may be helpful for MS fatigue, according to research. Yoga can be beneficial as it incorporates mindfulness, stretching and low-impact exercise.
7. Take breaks and pace yourself during the day can help you stay healthy. When you’re drained and continue to push, you are putting myself at risk of getting ill -take a break because you don’t want to bring on a relapse.
8. Discuss energy-boosting medication with your GP. Modafinil (Provigil) is a wakefulness-promoting medication which works for some people. The antiviral medication amantadine can be helpful. Ampyra improves nerve conduction and improves fatigue.
9. Get help for depression. If you are feeling down or things that used to be enjoyable don’t interest you anymore, you may be depressed. Depression is one of the most common symptoms of MS and left untreated, it can make your fatigue worse. Depression is treatable, so if you think you might be depressed, tell your healthcare provider.
10. Engage in regular physical activity. Exercise can actually improve fatigue. If you’re not sure how to get started with exercise or need some help identifying exercises that will improve your fitness without wearing you out, try working with a physiotherapist or personal trainer who is knowledgeable about MS – or join in our exercise classes mentioned on page 17 of this newsletter. We offer something each morning.
11. Simplify your life. Resist being overcommitted as it can cause health issues. Simplifying and choosing commitments helps preserve energy.
12. Manage your stress. Stress can make MS symptoms feel worse and longterm stress going unresolved can lead to depression, anxiety and sleep problems. It is crucial to identify the sources of stress in your life and find ways to manage it. Some useful stress management techniques include getting enough restorative sleep, physical exercise, meditation and yoga. Learning to be mindful has also been shown to reduce stress and possibly pain and fatigue.
Answers on page 32
Humour Corner
Is it Safe for Older People with MS to Stop Taking a DMT?
by Kelly Crumrin and Lauren Jansen
Kelly Crumrin
Lauren Jansen
With age comes wisdom, and if you’re lucky, it may also come with fewer multiple sclerosis relapses. If you’re an older person who’s gone years without an MS flare, it’s common to question whether you still need to be taking a disease-modifying therapy (DMT). This type of treatment aims to slow down the course of a disease instead of just addressing its symptoms. Every individual with MS is different. The decision to stop a DMT can be complex and it’s one you should make with your MS specialist. Here’s an overview of current guidelines, potential pros and cons and factors to discuss with your doctor if you’re thinking of discontinuing your DMT for MS. There’s a lack of consensus among MS clinicians about when it’s safe to discontinue DMTs. Individuals with relapsing MS and clinically isolated syndrome [CIS] who are older than 60 and have a prolonged inactive period of the disease, with no relapses and no evidence of new lesions on MRI, may consider discontinuing DMTs.
For people over age 60 with secondary progressive MS (SPMS), doctors could consider stopping a DMT if it’s not proven effective in slowing progression, if side effects from a DMT outweigh the benefits or if there’s significant disability associated with advanced neurodegeneration (damage and loss of nerve cells in the brain or other parts of the nervous system). The decision is
individualised based on each person’s condition as for people with MS, discontinuing DMTs is associated with a higher relapse rate. Research is underway to determine more details about who will benefit from remaining on treatment and who can safely stop. Potential reasons to consider stopping a DMT:
• DMTs may become less effective for older people. It’s difficult to be certain as clinical trials don’t usually include those over 55.
• You may develop more side effects from DMTs as you age.
• Older people with MS are likely to be taking multiple medications for various health conditions which can lead to worse outcomes, more drug interactions and not sticking with therapy.
On the other hand, as you age, you lose your ability to recover from relapses. Researchers think older people tend to have fewer MS relapses because the efficiency of the immune system declines over time. However, even one relapse at an older age is believed to significantly increase the risk for worsened disability and progressive disease. This is often called relapse recovery and the ability to perform this well declines with age. From this perspective, it becomes important to lower the risk of relapses in older adults. It’s important to work together with your neurologist to decide whether to stop taking a DMT because there are no firm rules about who should continue taking a DMT and who should stop. It’s up to people with MS and their doctors to determine what’s best. Here are five factors you and your doctor might consider when deciding whether you should discontinue your DMT.
1. Your Age. How old you are should play a role in your decision. Some research from the journal Multiple Sclerosis has found people who are older when they stop their DMT might be less likely to have disease relapses or disease activity.
2. The Stability of Your MS. Your doctor might describe your MS as stable or inactive if you aren’t having MRI changes, relapses or worsening disability. One study suggested people older than 45 whose MS has been stable for four or more years before stopping DMTs might have a lower risk of disease relapse.
3. The Type of MS You Have. People with secondary progressive MS (SPMS) might have better outcomes when stopping a DMT than people with relapsing-remitting MS (RRMS). A study in the International Journal of MS
Care found people aged 70 or older with stable secondary progressive MS for at least two years had an 88 percent chance of experiencing no recurrences in the next one to two years after discontinuing their DMT. The same study found people with RRMS had only a 41 percent chance of not having a recurrence.
4. How Your MS Has Progressed. Many people start with RRMS and later develop SPMS. For people with SPMS whose disease has been stable and who have not been able to walk for two or more years, the benefits of continuing a DMT may be limited.
5. The Medication Side Effects You Experience. A study from the journal Multiple Sclerosis and Related Disorders cited 33 percent of people who decided to stop their DMT did so because of medication side effects. Your doctor might recommend you try another DMT, take a drug holiday or stop completely.
If you’re considering stopping your DMT, ask your neurologist about your disease activity. Review past MRI results. Talk about your symptoms, your Expanded Disability Status Scale (EDSS) score and medication side effects. After considering these factors, you and your doctor might decide together to stop your DMT. If your doctor doesn’t think it’s the right time to stop, make a follow-up plan. Ask what signs you should look for in the future that might mean it’s time to stop your DMT.
Remember - the final decision is yours. If you and your neurologist decide it’s time to stop your DMT, it’s important to continue getting regular followups and MRIs to make sure your MS remains inactive.
If you decide to stop taking a DMT, it doesn’t have to be a permanent decision. If you stop the medication and start experiencing more disease activity or relapses, you can take the medication again or explore other treatment options.
Your MS specialist is a valuable source of information and support. They can assess your situation, evaluate how well the previous medication worked for you, and help you find the best treatment plan for your needs. Talking regularly with your MS specialist is vital to help manage your MS effectively.
Thought
A car ahead was moving like a turtle and not giving me way inspire of my continuous honking. I was on brink of losing my cool when I noticed the small sticker on the car’ s rear window. It read ‘Physically challenged; Please be patient.’ That changed everything. I immediately calmed and slowed down. In fact, I got a little protective of the car and the driver. I reached work a few minutes late but it was ok. Then it struck me. Would I have been patient if there was no sticker?
Why do we need stickers to be patient with people? Will we be more patient and kind with others if people had labels pasted on their foreheads?
Labels like: lost my job; fighting cancer; going through a bad divorce; lost a loved one; financially messed up. Everyone is fighting a battle we know nothing about. The least we can do is be patient and kind. We don't have to put people through the pressures of explaining over times before we understand their pains and offer our little best. As you go through each day, remember there's an invisible label on everyone. A simple virtue of patience may be the respect you're according that invisible label.
Who Holds the Carers Hand?
By Martin Baum
Cognitive problems associated with MS translate to poor focus, slowed thinking and vague memory, which means Lizzy - as my wife and carer - is my shadow; she hears what I hear, she sees what I see, she absorbs any of the all-important attention to detail I fail to grasp. This is an admission I am no longer too proud to admit to, because as an MSer I accept this is who I am. My day-to-day life is a shared experience with Lizzy, my constant companion, who must be in the room when it happens. This year, so far, I have sat in the dentist’s chair as the dentist polished, drilled and filled my teeth to make them clean and healthy. I have also had a plethora of blood tests, two prostate examinations to check the gland was still fit for purpose and I have been subjected to the sound and fury of an MRI scanner. Yet, on reflection, it really was not all about me. While I laid back in the dental chair with mouth opened wide, Lizzy was sat at the back in the corner, gritting her own teeth, listening to the ominous sound of the dentist’s drill as if she were being forced to watch that infamous scene in Marathon Man. A UTI wrought havoc on an MS-owned bladder for a month. At a time where having a face-to-face consultation with a GP was as rare as hens’ teeth – my apologies for another dental reference – it was Lizzy who pushed for that appointment which led to the first prostate examination. Such was the state of my anxiety, she was again in the room when it happened, as she was throughout the battery of blood tests that followed (neither of us can stand the sight of blood, especially mine).
Hot on its heels came the MRI; after a working lifetime of paying into a private health scheme - without which I would still be waiting for an appointment now – not only was I offered earplugs to muffle the clattering noise but also headphones to listen to a radio station of my choice. As the MRI equipment went to work, I meditated and was oblivious to the sound of the machine. That is what I like about meditation. It brings calmness even in the most extreme of situations. Not so for Lizzy, who was not meditating. Her high anxiety would not allow for it. This time she was outside the room where it happened, instead listening to the grinding, banging, vibrating noise of a machine sounding as if it were striving to break the MRI sound barrier.
After 30 years together, I do wonder, even after all this time, if Lizzy really knew what it was she was signing up for when we got together. As far as I can see, after all she has put herself through sharing my MS with me, she sure didn’t do it for the carer’s allowance.
Answers to Chart Toppers of 1964 Quiz
Top left to bottom right by row
Part One
Manfred Mann [Do Wah Diddy Diddy] The Bachelors [Diane]
The Dave Clark Five [Glad All Over] The Animals [House of the Rising Sun]
The Beatles [Can’t Buy Me Love, A Hard Day’s Night, I Feel Fine]
Peter and Gordon [World Without Love]
The Rolling Stones [It’s All Over Now, Little Red Rooster]
The Searchers [Needles and Pins, Don’t Throw Your Love Away]
Part Two
The Honeycombs [Have I the Right] Sandie Shaw [Always Something There to Remind Me]
Roy Orbison [It’s Over, Oh Pretty Woman]
Herman’s Hermits [I’m Into Something Good]
The Supremes [Baby Love] The Kinks [You Really Got Me]
Cilla Black [Anyone Who Had a Heart, You’re My World]
The Four Pennies [Juliet] Billy J Kramer and the Dakotas [Little Children]
The truth about using a Blue Badge for MS by Jessie Ace
Things are great right? You have a whole host of new symptoms you’ve never experienced before. You’re wondering to yourself if this is a new symptom of your new illness or just a reaction to new medication or are you just tired and stressed? Will the feeling in your hand ever come back? Will you ever have a time in your life where you don’t feel tingly? Imagine thinking these things at 22 years old - that’s how old I was when I was diagnosed. If you're applying for a blue badge, you're not alone. Many people suffering with MS are in the same situation as you. Most days I’m lucky enough to say I’m fine and I can get through the day. However, sometimes I need a little help - as we all do from time to time. My friend had been convincing me to apply for a blue badge for months and I refused. When she first said it to me, I remember exclaiming, ‘What, I can’t get one of those, I’m not disabled enough! Don’t you need to be in a wheelchair to get one of those?’
‘No,’ she said, ‘don’t be silly, you’re struggling to walk some days and you really need one. I use mine when I’m struggling and it helps tremendously. Stop being so stubborn and apply.’ After fighting her on that point for some time, I decided I was being stubborn and put in my application. When I first received my badge, I felt too scared to use it. What will other people think of me when they see I can walk? What if they say things to me? I was really worried. I’m sure we’ve all thought that when we first got our badges. I think it’s a perfectly normal reaction, at the end of the day to everyone else we may not look sick, they don’t know what’s happening on the inside. I put the badge in my car’s glove compartment and didn’t use it for the first few weeks.
One day I woke up severely fatigued, had pain in my legs and struggled to walk to the end of my drive. I had client orders which had to be posted that day and there was no one else available to take them for me so I parked up in town to go to the post office. There was no way I could have parked in a normal space and walked down so I used my badge for the first time. It felt like heaven having such a short way to stumble. I pulled my bag of orders over my shoulder and dragged myself inside. The relief I felt getting back into my car was incredible. I was so glad I had posted the orders and a weight was now off my mind. I felt so relieved I could park right outside and I was excited to get home so I could lie down. That’s when it happened… I had just collapsed back into my car and was taking a few minutes' breather before I set off. I literally couldn’t get my breath. I had pulled my badge off the dashboard and put it in my bag. The keys were in the ignition but before I could start the engine a man came and stood in front of my car. He looked an older, scruffy kind of man with a bad attitude. He scowled at me. I looked back at him, confused. He then came round and tapped on my window. He shouted at me, ‘Where’s your badge? You can’t park there!’ I had never felt so angry. This person had just judged me for no reason. However, I understood from another person’s perspective I was a 20something-year-old with no sign of a wheelchair, sat in a disabled parking bay with what appears to be no badge. I pulled my badge out of my bag and waved it at him. As soon as he saw it, he looked angry, tutted, shook his head at me and walked away.
I remember thinking to myself, ‘You know, I didn’t ask to be disabled, do you honestly think I would park here if I didn’t need to?’ I felt angry. I didn’t want to use my badge again. This situation had scared me. I don’t do confrontation and the fact he had the confidence to come up to me and call me out shocked me. I guess he thought he was just doing his civil duty but he wasn’t thinking about the effect calling me out like that had. I’d never used my badge before. That was the first time and it took a lot of courage for me to use it in the first place. As I was driving home, I started to think about the general public's perception of disability. If a wheelchair is displayed on everything associated with disability, how could we expect anyone to think any differently? People are
not educated enough about invisible illness. They don’t understand, they choose to see what’s in front of them. If you have a wheelchair, they’d class you as disabled, but if not then, what? If they know no different you can see why they’d make that assumption.
Nowadays, using my badge is very different to me. I have grown to love my blue badge and I appreciate it for the freedom it gives me. Every time anyone says anything I respond by teaching them about invisible illness and how they need to be mindful of how people may feel on the inside. I tell them about the first time I used my badge. I use that experience as a way to educate and people have been surprisingly understanding as soon as they knew. How can we stop this happening? How can we change public perception of disability? Do we campaign to change the wheelchair disability symbol? Do we start doing talks in schools about invisible illness and what it is? Do we even need to do anything? ………
Poem: Dare to Be by Steve Maraboli
When a new day begins, dare to smile gratefully.
When there is darkness, dare to be the first to shine a light. When there is injustice, dare to be the first to condemn it.
When something seems difficult, dare to do it anyway.
When life seems to beat you down, dare to fight back. When there seems to be no hope, dare to find some.
When you’re feeling tired, dare to keep going. When times are tough, dare to be tougher. When love hurts you, dare to love again.
When someone is hurting, dare to help them heal.
When another is lost, dare to help them find the way. When a friend falls, dare to be the first to extend a hand.
When you cross paths with another, dare to make them smile. When you feel great, dare to help someone else feel great too. When the day has ended, dare to feel as you’ve done your best. Dare to be the best you can –
At all times, Dare to be!
Our charity contact details
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 him at 43 Gordon Place, Bridge of Don, Aberdeen AB23 8RB or e-mail ian.gourlay@youraims.org
M S Nurses
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
M S Helplines
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
Disclaimer
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 charity regulated by OSCR
Scottish charity number SC051225
