Aberdeen Independent Multiple Sclerosis Newsletter Spring 2022

Aberdeen Independent MS

Spring 2022 Newsletter

Footdee [painting by Martin from our art group]

‘

Editorial

Yes, there were times I'm sure you knew, when I bit off more than I could chew. But through it all, when there was doubt, I ate it up and spit it out. I faced it all and I stood tall and did it my way’ .

Most of you will recognise these words from a verse in the song ‘My Way’. Substitute we for I and in these lyrics and you’ll know how the management team felt when we took on the challenge you set us of breaking away from the MS Society and setting up a new charity. You will see from the accounts statement on page 18 which covers the first six months of the new organisation, how successful financially we have been. Once the bank account was set up in mid November the pledges you made ahead of us becoming independent arrived quickly. For those of you yet to contribute, you’ll find our bank account details on page 18.

We are grateful to those of you who contributed financially as that gave us a platform to reach out to grant funders and apply for cash to enable us to continue to subsidise the cost of providing the classes offered. These grants are essential as donations received from those attending sessions merely cover around 50% of our costs. Grant funding has started to flow into our account and we shall provide an update in the next newsletter.

Thank you for joining us on this exciting new journey.

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You can keep up to date with our activities by following us at: https://www.facebook.com/aberdeenMSsupport

Alternatively, to get regular updates about our activities, send your e mail address to info@youraims.org

The Benefits of Exercise by Matt Alderton

Exercise is the golden rule of health and wellness and has been for millennia. Nearly 3,000 years ago the Indian physician Sushruta became the first doctor to recommend moderate daily exercise which he believed could provide resistance to disease and physical decay. A few centuries later, the Greek physician Hippocrates became the first to give a written exercise prescription to a patient suffering from consumption. If there’s one person who hasn’t always been on the exercise bandwagon, it might be your neurologist. For a long time, doctors advised against exercise for people with multiple sclerosis. MS specialist Barbara Giesser, a neurologist in California says, ‘This may have stemmed from the observation when somebody with MS exercises and gets overheated, they can have a temporary worsening of symptoms. The problem with MS is the nerves are scarred and don’t conduct electricity properly. If you heat a damaged nerve you get a temporary conduction block. The heat impedes the nerve’s ability to function but it doesn’t cause more damage.’ Not only does exercise fail to make MS worse, it actually might make it better.

In 2019, the National Multiple Sclerosis Society of the USA convened a group of MS experts, researchers and clinicians to create a new set of exercise and physical activity guidelines for people with MS. Its work makes physical fitness accessible for everyone with MS. Exercise is especially stimulating to the hippocampus and thalamus areas of the brain with critical roles in memory, speech processing and motor function. Exercise has other benefits such as reducing fatigue. Regular exercise can

help people with MS manage fatigue, improving cognition, improving walking and improving quality of life by enabling people to be employed and engage in social activities. When someone who has a chronic neurological disease isn’t active enough, they can develop conditions such as diabetes and obesity which can impact on the progression of MS. Exercise has mental and emotional benefits. ‘We know mood is significantly impacted in people with MS and staying active helps mood,’ says clinical psychologist Rosalind Kalb. ‘People who exercise feel better, and people who feel better manage their symptoms more effectively.’

Exercise is healthy but many people with MS don’t know how to fit it into their lives. The challenge occurs when movement becomes more difficult or feels unfamiliar because of MS, to the extent that participation in exercise and physical activity declines. Previous forms of exercise and physical activity become challenging, unsafe or unenjoyable so people reduce or stop participating. The guidelines recommend completing at least 150 minutes of exercise each week. Exercise for people with mild impairment might include running, walking, weight training and yoga. Exercise for wheelchair users might consist of strengthening the lungs or strengthening the arms by way of arm cycling. Lifestyle activity might include gardening, cleaning, folding clothes, seated dancing or manual propulsion for wheelchair users. Although exercise is more effective than lifestyle physical activity at building aerobic capacity, muscle strength and balance, each yield similar benefits for people with MS with regards to symptom management and disease progression. Individuals don’t have to do 150 minutes of exercise and lifestyle physical activity in one session they can do a mix of exercise and lifestyle physical activity in small increments. If you’re not used to

being active, don’t try to do 30 minutes of walking five days a week at a moderate intensity. That’s going to do more harm than good. Start with five minutes two or three days a week.

Giesser says, ‘A neurologist can’t prescribe a comprehensive exercise programme but they can start the conversation. I would love to see health professionals make a point of asking their MS patients how active they’ve been and do they incorporate functional exercise into their daily lives. If people are not active, what are the barriers they’re facing.’ Barriers can be physical; social; medical or financial. Some of the most common barriers are emotional, according to Kalb who says people with MS often experience fear, anxiety and apathy about exercise. ‘We call all the negative messages people with MS send themselves brain chatter.’

Editor’s note: Early in the new year, Maria Jones started a gentle exercise class on a Thursday evening with the financial support of a grant for £1,200 from the Scottish Government’s Mental Health and Wellbeing Fund. This has allowed us to run a six month trial gentle yoga class on a Thursday evening. It is suitable for people who can get down to and up from the floor. We hope the sessions will be a success which will allow us to run them beyond the end of June and introduce new participants who are working when we hold our regular exercise activities in the morning.

Accessing Neurology Services

We hear some of you talking about the lack of access to NHS services with several saying the only person they speak to is their GP. Your MS care should be made up of a multidisciplinary team of healthcare professionals a neurologist, MS nurses, GP, possibly a physiotherapist and occupational therapist. You are the most important person in that team.

Healthcare professionals play a role in decisions about managing treatments for your condition and while the team members may liaise with your GP, your MS nurse should be your main point of contact for any concerns you have. [The contact details for the MS nurses at Aberdeen Royal Infirmary are shown on the back cover of this newsletter]

Guidelines for healthcare recommend everyone with MS has a review of all aspects of their care at least once a year. Many of you have indicated you have not had a review for several years and if that is your position, please get in touch with the MS nurses without delay.

The review should be carried out by a healthcare professional with expertise in MS rather than a GP, who by definition is a generalist rather than a specialist. GPs have guidelines to follow depending on the symptoms a patient presents with. Whatever these symptoms, your GP should give you information in a manner which is clear to you; should talk about the options available and listen to your views or concerns as you need to know what will happen next.

It is imperative you contact your healthcare team if you are having a relapse as you may get new symptoms or your existing symptoms may worsen. Remember, it is your MS and its management is in your hands. The professional healthcare team is there to support you.

Attaining the Unattainable by Calie Watt

My oldest son turned five in August and ten days later, our triplets turned one. On 17 October I turned 30. 2020 was a year full of big things; I cannot believe how quickly the year flew by. I feel full of gratitude for this life I’ve been given, MS and all.

To this day, I question why I was given an MS diagnosis at such a young age and why with MS, I was given four beautiful children. It’s not that I question my love for them because they are my world. I have questioned my ability to handle mothering four children with MS. I watched ThisIs Usthe other day and one of the characters said something that stuck with me. He explained he didn’t know what it felt like to live with a disease but he did know what it looked like to look at everything you want for your future and it to all seem unattainable. It hit me because since becoming a mum of four, that is how I have felt.

Having MS causes my future to be unpredictable and uncertain. I never know when my disease will progress and that is a tremendous fear. There are many moments when the day to day process of caring for four little humans seems unattainable. Finding the finances and resources needed to support them seemed impossible. Growing three humans in a body already struggling with pain and fatigue seemed like a joke. I seriously questioned if God was laughing at me. Why, of all people, would I be capable of such a huge life change? I don’t have a lot of help or family close by, so the thought of staying home and raising four kids by myself while my husband worked felt daunting. Could I do it and manage my MS without breaking? The past fourteen months have repeatedly shown me all of those fears and time spent worrying was a waste. Everything I once feared is now everything I fear living without. It wasn’t God laughing at me after all. I like to think that maybe He was showing me what I was capable of on my own. I’ve been shown that often since my diagnosis at fourteen, but this past year was the highlight. You never know what you’re capable of until you’re faced with challenging situations.

The babies are now a little over a year old and somehow, we have made it. I have survived many long days of motherhood. It was days of trying to keep a clean house, making meals, doing endless piles of laundry and washing dishes. These days it’s chasing toddlers, cleaning up messes which get destroyed again in seconds and taking my son to and from school with a car full of little ones. Some days, I feel defeated while others, I feel I can conquer the world. It is constant exhaustion paired with an overly full heart. It’s feelings of never getting a moment alone to breathe paired with sweet cuddles filling my heart to the brim. I am more physically worn down by the end of each day than I have ever been, yet I’ve never felt so full of life.

My world has never felt so chaotic but so full of worth. What MS and motherhood have taught me most is that life is tough but I am tougher. It has taught me I have a lot of fight left in me and when put to the test (daily), I can and will get through whatever the day brings. It has given me patience and resilience as I’ve never had before. It has shown me I will struggle and worry about my health. I will fear the things I want most may become unattainable. The future of my health is a big unknown but so was my journey over the past year. Every day was full of wondering how it would all get done. It was full of sitting down at the end of the day and saying, ‘I did it’. I try to be full of optimism for my kids. I want them to see that even on the days mum felt her worst; she didn’t quit. On the most challenging days, I have learned if I don’t look for the one good thing, I will not make it.

I don’t live every day looking through rose coloured spectacles but with a glass half full mentality. It is what keeps me balanced. This disease may make everything I see for mine and my family’s future seem unattainable but for now, I want to take it a day at a time. I was given this imperfectly perfect life and I am the one in charge of making the most of it. For now, in what may seem like never ending, mundane days, I can confidently smile and say, ‘It’s all worth it’. Thanks to MS, I see life in a different light, and it inspires me to persist and hope I can attain the unattainable.

Thirty Second Sermon Lesson on happiness

A professor gave a balloon to every student, who had to inflate it, write their name on it and throw it in a room. The professors mixed up the balloons. The students were given five minutes to find their own balloon. Despite a hectic search, no one found their balloon. At that point the professors told the students to take the first balloon they found and hand it to the person whose name was written on it. Within five minutes everyone had their own balloon.

The professors said to the students, ‘These balloons are like happiness. We will never find it if everyone is looking for their own but if we care about other people's happiness, we'll find ours too.

MS and the Benefits of Coffee by Kim Dolce

Coffee has long been thought to provide more than just a morning eye opener. For starters, coffee is the western world number one anti oxidant. Its superstar ingredient, caffeine, has been shown to increase fat burning by as much as 29% in people of normal weight and 10% in obese people, as well as raise the metabolic rate in humans by 3 11%. It’s no wonder caffeine is in virtually every fat burning and weight loss product.

One cup of coffee contains a small percentage of vitamin B6, B12, niacin, potassium, magnesium and manganese. A heavy coffee drinker will get a significant vitamin and mineral boost. It makes us smarter, faster and improves our exercise performance. It fights depression and improves our sense of well being because caffeine increases the amount of dopamine and norepinephrine, raising our energy levels, improving memory, mood, concentration, cognitive function, and response times. If you think the benefits of coffee sound as though they could extend to the deficits MS can cause, you are right on track.

A report published in March 2016[*] claimed heavy coffee drinking might lower the risk of developing MS. In a 6,700 person study, heavy coffee intake six cups per day appeared to reduce the risk of developing MS by as much as one third compared to the control group. This doesn’t mean becoming a heavy coffee drinker will protect you from MS or have an effect on your disease progress if you already have MS, researchers pointed out. Some researchers agree although there is evidence of connection between coffee and MS, other properties in coffee are likely providing some of those health benefits but caffeine is still a superstar. Some studies have found caffeine protected laboratory mice by hindering the inflammatory process in their brains and spinal cords. Other studies have connected higher coffee intake with lowering the risk of other neurological diseases such as

Parkinson’s and Alzheimer’s, as well as heart disease, liver cancer, and Type 2 diabetes. Risk lowering evidence is much more clear cut in these medical conditions than in multiple sclerosis, however.

I wish I could have been the recipient of all the neurological benefits coffee provides. I’ve been a 3 4 cup per day strong coffee drinker for the past forty years but I developed MS anyway. And, if coffee made us smarter, by now my IQ should be off the charts and Stephen Hawking would be texting me for advice. On the other hand, it’s possible I began life as a total idiot and coffee boosted my IQ to its currently humble level. However dubious the coffee and MS connection might seem; I’d hitch my wagon to coffee drinking for all the good it has been proven to do. You can keep your acai berries and expensive power drinks; I’m going to stick with the boring old superstar whose performance might not be new or sexy or exciting. It works its heart out on my cardiovascular, neurological, endocrine and digestive systems. Coffee. The perfect food.

[*] Report: Highconsumptionofcoffeeisassociatedwithdecreasedmultiplesclerosis risk;resultsfromtwoindependentstudies looked at two study groups, one from Sweden and the other in California.

Multiple Sclerosis and Compassion by Kat Naish

I received a diagnosis of multiple sclerosis almost five years ago. Before the diagnosis I had no idea how many people lived with invisible, exhausting illnesses. While I was in the middle of my whirlwind and trying to adjust to my new normal, many friends offered a helping hand. That was kindness but it was also compassion. Some of them had been there themselves so they understood precisely what I was going through. Their incredible empathy is a huge help.

Until my MS diagnosis, I didn't know what genuine compassion for myself or others looked like. I was oblivious to how empathy could help me through daily life. Everyone deserves empathy and kindness. Now though, my eyes are open. I realised everybody in life, invisible illness or not, fights a battle I know nothing about. Knowing this has taught me to be patient with others. I no longer sigh impatiently in the checkout queue when the person in front of me takes too long. Other people's habits no longer frustrate me. Their decisions are none of my business as I don't know their circumstances. Chances are, they make those choices for reasons I couldn't begin to guess at. The bottom line? Compassion has taught me to relax and cut everybody around me some slack.

Empathy towards myself isn’t that different from showing it to others. I’ve learned to be more patient with what I can and can’t do. I now give myself time and space as I need it, to reflect and be kind to myself.

Sometimes, that can mean being selfish and doing things which are only beneficial for me this isn’t easy, especially as a mother. I’d argue being selfish sometimes helps me keep functioning as a mum, wife and co worker. Do I still long for a carefree life? Yes, I do. I also know the perfect life doesn’t exist.

Social media tells us people live their dreams every day but we know that’s a facade. We understand the tough bits of life are hidden from view. Most of us don’t see what’s going on underneath the smiling photographs. Now I’ve become wise to the facts I can stop trying to push myself beyond my capabilities. Striving for perfection is impossible and I’m good enough the way I am. Such a change in perspective has done wonders. I am happier, more content and peaceful. I’m no longer that angry, frustrated person in a constant rush and easily annoyed at others. In other words, I gave myself a break.

As my son grows up, I want him to have compassion all through his life. Every day, I encourage him to look beyond the surface, to consider points of view that others don't notice. It took me until the age of 35 to do this and I want my son to understand and apply empathy before I did. I teach him to never assume anything about others. Most people do what they do for a reason, even if they don't say it aloud. My son will learn to consider all angles and put himself in other people's shoes before forming judgements.

I hope empathy will teach him to be confident in his own decisions. When he extends kindness to himself, he'll realise that he is good enough, despite what life may throw at him. Compassion has taught me to be kind to myself and others. As a result, a vast amount of unnecessary drama has gone from my life. My eyes are open to how much stress we put on ourselves when we place everyone on a pedestal.

Am I always good at being compassionate? No, but I'm far better than I was before. I remind myself to be empathetic towards myself and others every day. When was the last time you cut yourself some slack?

Cleaning Tips: Thinking Outside the Box

by Laura Kolaczkowski

Our son gave us the gift of an automated RoboVac for Christmas. We’d seen them advertised on television with a cat riding one around the room. When asked if we might want that for a gift, I said I didn’t see the purpose since a regular vacuum does the same job. My son pointed out the regular vacuum required someone to actually use it, whereas the RoboVac operates itself. Reluctantly we said okay and we have developed a fondness for the device which cleans our floors every day on a set schedule. The ease of cleaning our floors now made me think about other tools I use regularly to make life easier. However, I still pick up my brush and dustpan if there is a mess I need to clean immediately. We have a grabber reacher tool (yes, it is really called that!) on both floors of our house. I am particularly stiff and picking up items from the floor, usually because I have dropped them, requires extra reach I don’t have. I know online they are sold as tools for the elderly but I’ve been using them long before I reached my advanced years. If you have a problem bending, don’t hesitate to get one of these. I’ve developed my own hack in the kitchen when my grabber reacher tool isn’t close and I need to pick up something. My solution? I reach for my kitchen tongs which gives me enough of an extension to my arm length to reach the floor. The tongs would also be handy to grab items from high shelves. Surprisingly, when I search the big seller online, I find kitchen tongs cost about as much as the grabber reacher tool.

If mobility and bending are issues for you, check out other long handled items. They range from toenail clippers to grass trimmers, long handled shoe horns to back scratchers or hair combs. Most of these are in the affordable range and could make a big difference for your quality of life and independence.

Another tool I use regularly is a simple looking device called a JarKey. Much like the old church key bottle openers, there is a lip to the JarKey that fits just under the rim of a jar and with a simple lift, the seal on the jar is popped, making the lid easy to twist off. If gripping a jar lid and wrestling it off is not high on your exercise list, I highly recommend the JarKey.

My favourite tool to help with bending and balancing tasks is the electric spin scrubber (yes, it really is called this!) which is a long handled, rechargeable tool which comes with a variety of scrubbing heads. I like this to reach into the corners of my shower. A less pricey cleaning option I have also used is a spare toilet brush be sure it is one that hasn’t been used on the porcelain bowl. This brush can also be used for hard to reach places. Unlike the electric model, you have to provide your own muscle to make it work.

If you are struggling with any daily tasks of living, you might also consider asking for a referral to occupational therapy (OT), the often overlooked partner to physical therapy. OT professionals can help to evaluate your physical needs and make recommendations.

Editor’s note: if you have any tips to make household tasks easier, please let us know and we can reproduce these in future newsletters.

Financial Update

for

Receipts £

Annual subscriptions

Class attendance fees

Donations

Fundraising [external]

Fundraising [internal]

Craft/art sales

Grants

Payments

Class fees: Chair based exercise

Seated yoga

Mindfulness

Art / crafts

Insurance

Social media: website

and postage

fair/exhibition costs

Just Giving fees

can support us financially by sending donations to Aberdeen Independent Multiple Sclerosis. Bank account no.

Programme of digital exercise, art/crafts and social sessions

In your internet browser type in zoom.com OR zoom.us click on ‘join a meeting’ put the nine digit number shown against each activity in the box click the JOIN button

CHAIR BASED EXERCISE MONDAY [10:30 11:30] 533

CRAFTS MONDAY [13:00 14:00] 850 4291 5996

CHAIR BASED EXERCISE TUESDAY [10:30 11:30] 137

SEATED YOGA WEDNESDAY [11:00 12:00] 393

ART WEDNESDAY [13:00 14:00] 858 2660 6942 SOCIAL GROUP WEDNESDAY [14:30 15:30]

CHAIR BASED EXERCISE THURSDAY [10:30 11:30]

GENTLE YOGA THURSDAY [18:00 19:00]

Passcode 54032

MINDFULNESS FRIDAY [10:30 11:30] 867 002 729

Fundraisers

Thank you to Mary Ross who raised £1,500 from her November exercise challenge. Mary did an exercise work out each day during November while taking time to participate in a few of our chair based exercise sessions. Mary was diagnosed with MS in 1996, is wheelchair bound with very limited movement and unable to transfer but it doesn’t stop her getting out and about.

Mary Ross

Michael Buble [but not as we know him]

Just ahead of Covid 19 blighting our lives in March 2020, Irene, wife of our treasurer John, retired as a Zumba instructor, having led two classes each week for nearly six years. Irene did not have the opportunity to say a proper goodbye to her class participants until recently when she decided to hold two Buble & Bubbles afternoon teas for her class members. 29 ladies attended and raised £600 which Irene has donated to AIMS. The photo above provides the context who wouldn’t want a life sized cardboard cut out of Mickey Bubbles in their home? Many thanks to Irene and her Zumba ladies!

Our craft stands before fairs

The ladies from our crafts class sold items at three fairs in the latter part of 2021. These raised a grand total of £1,005. In addition, participants in the arts class held two exhibitions and raised £650. We are blessed to have so many talented people willing to use their time and talents to assist our cause financially. Thank you.

The gentleman’s senior section at Westhill Golf Club donated £600 towards the work of AIMS. We are grateful to Richard and his colleagues for supporting our cause.

Social catch up

Our face to face social activities have had to take a back seat recently. Due to government restrictions, our Christmas lunch had to be postponed in December and this has now been rearranged for Thursday 24 March at 1:30 pm in the New Greentrees, Victoria Road, Dyce. Hopefully everyone who paid a deposit for the initial date will be able to join us. Our menu is festive. The photograph above was taken during our first catch up of the year at Green Pastures in Westhill. Sandra is shown holding the AIMS mascot which was made by Agneta Rankin.

We hope to be holding social events throughout the year in addition to looking into the possibly of restarting some face to face exercise sessions. If you have not already contacted us with your intention to attend and your preferred venue, please email us at info@youraims.org as soon as possible.

What does disability look like? By Amy Thompson

Amy Thompson

When I was diagnosed with multiple sclerosis in April 2018, just after my 21st birthday, I remember one of my biggest revelations being the fact I was now classed as a disabled person. This revelation made me question my whole life, my future but that’s because I didn’t know much about disability. Previously, when thinking about the word ‘disabled’ I thought of someone in a wheelchair or using a mobility aid. I certainly didn’t think of someone who looked like me but that’s where the problem is we’re not taught about different disabilities and we’re not told about the ‘invisible’ ones. Over the last week or so, I’ve had two ‘but you don’t look ill’ experiences and they made me feel pretty bad. The first was the day of a fundraising event for my MS Together support group. Me and my friend (and fellow MSer) met at a carpark in a place called Tissington in the Peak District.

We had arranged to meet three other members of MS Together and we were going to go on a hike as part of the event. The car park was busy but there was one space a disabled space. I told my friend I’d park in the disabled

space and come with her to find a different spot. I parked my car and put my disabled badge visibly in the window.

A few minutes passed and a couple walked over to our car: I heard the woman saying something about the disabled parking spaces. She was questioning why I had parked in a disabled space. I told her I had a disabled badge. She changed what she was saying and that I was parked over two spaces. I told her I wasn’t. She laughed and said that she ‘had just watched me park’ and that I was ‘taking up two disabled spaces.’ This went on for a few moments before she walked away. I was not taking up two spaces. I was perfectly parked in one space with my disabled badge clearly displayed. This whole experience shocked me. We couldn’t believe what had happened and we spent the first hour of our walk talking about it. The thing I couldn’t get over was I was wearing a MS Society t shirt! This woman looked at me wearing an MS Society t shirt and still thought there was no way I could be disabled and in need of a disabled space. What was this woman trying to say? Why did she have an issue? Was I too young? Did I look too healthy? What did she think I should look like? Would she have reacted the same if I was in my 60s using a mobility aid? I think we all know the answer to that one! I don’t normally let things like that get to me but I think the timing of this experience didn’t help. I was about to take part in a walking challenge I had organised to raise money and awareness for MS. I was doing this with members of my support group a support group for young people aged 18 35 with MS who face challenges and judgments like this all the time.

A few days later, I parked in Manchester city centre, again in a disabled space. I’d rushed around a few shops and was setting off on a three hour drive. I was already tired so I’m glad I was parked in the centre of town and

I didn’t have a long walk. I opened my passenger door and put a few bags on the seat. I was about to shut the door when a lady in her 60s/70s driving a black Corsa drove past very slowly. As she went past, she looked me in the eye and shook her head. After my experience earlier in the week, I was ready to react; I grabbed my disabled badge and held it up so she could see. She continued to shake her head before driving off. I got in my car and sat there angry and upset. I don’t know why this affected me so much. Perhaps because the same thing had happened to me twice in one week. Perhaps because I feel I shouldn’t have to justify myself. Perhaps because it makes me sad people make judgments so quickly.

Some days I feel better than others. Sometimes, I see a disabled space and don’t use it because I don’t feel like I need it or perhaps there may be someone who needs it more but sometimes, it makes my life a lot easier. When I first got my disabled badge I was scared to use it and it lived in my glove compartment but over the past year or so, I’ve become more comfortable with my MS. I am no longer scared of people’s judgments or reactions. I’ve learned to talk openly about it and I try to educate people. With regards to my badge, I remind myself I was given it for a reason… because I have a disability. I feel I am lucky to have not had many ‘but you don’t look ill’ experiences which have affected me but I don’t understand why they happen. Why can’t people focus on their own lives? Why are people so quick to judge? Why do people have misconceptions about what disability looks like? What gives people the right to make you feel like bad before they know your story? I know I write about being kind to others but it really is the most important thing you can do.

Desperately Searching for My Mojo by Jenny

I’m Jen, a 40 something MSer, juggling being a mum to two teenagers and my health. I was recently awarded my ill health pension from the NHS as regular work became tricky. I was diagnosed with MS when I was 15 years old and I've had it for over 25 years. I try to stay as healthy as I can though diet, yoga and meditation. Mojo is something I used to have in abundance in my life but recently it has disappeared and I am desperately trying to get it back! I know what I need to do to make myself feel better but I lack the motivation to do it. I know from past experience, when I feel down in the dumps my mojo disappears and that is the big issue for me now: I am feeling anxious and depressed. I am finding it harder to see the future as positive, which makes me worry about it more.

My disability means I can’t move in the way I used to and I can’t do the things I did to let off steam running or dancing. I know taking time out for my yoga chills me and allows for some ‘me time’ when I don’t think about my worries. Making the effort to get off the sofa and do a couple of jobs I have been putting off can make me feel better. This can increase my positivity and mojo. I have written about using music to feel a bit more

positive. Before starting to write this message, I played a dance track and pretended I was a 20 something in a club for a few minutes, singing along to the lyrics. It’s not my usual music but when I hear my daughter playing it, it reminds me of old times and puts me in a better mood.

Getting out does do me the world of good and helps to boost my mojo. For me, the best and most relaxing time to go outside is in the early morning, often whilst the kids are getting ready for school. That is the best time to water plants and the quietness and time with nature helps. As the mornings get cooler, drinking coffee outside in my dressing down will give me a few minutes of mojo boosting relaxation? I recently had a virtual meet up with a colleague and it was lovely chatting over coffee. Sometimes when I am down in the dumps, I struggle to make the first step towards having a catch up, so maybe I need to set myself a little challenge to do that…… which leads me to do this. Setting small, achievablegoals should help. Managing to carry out a goal, however small, can help to boost confidence and self esteem and hopefully, the feelings from that can help to influence my motivation and mood, giving me my mojo back.

Having pets around has made a massive difference to me; our cat is hanging around our garden now and actively coming up to me for strokes. I find taking five minutes to hang out with them, away from the phone, helps me to feel more peaceful and appreciate the little things I have. I guess the part of the mojo definition about making you feel ‘successful’ might have a bit of a different slant for those of us with a chronic illness? I know the definite positives of my life are my children and friends and I am lucky to have a roof over my head and enough food to eat, as many people do not have that. For me, many of my positives come from my

challenges namely MS. I feel like I appreciate the ‘little’ things more and I feel MS has given me confidence and mental strength I am not sure I would have without it. I hope I am able to pass on some of these traits to my kids even though they don’t have ill health to contend with.

I do have some positives in my life and I am still here! My friends and my family are behind me, I have many things I find enjoyment from. My Granny used to say, ‘what’s for you won’t go by you’ and I need to think about this with a positive slant to help me to get my mojo back. A few years ago when my MS wasn’t as bad as it is now, I jumped out of a plane from 15,000 feet. It was scary but it gave me such a thrill and a boost to my confidence. Making myself do it made me feel successful and happy. My ability to take part in extreme sports may now be limited (never say never) but doing the little things which scare me can help to get my mojo back. One massive thing for me is having the confidence to take my kids away on holiday as a single, disabled mum. I’ll bet it is not as scary as I think it might be… and I know I am lucky the kids are old enough to help if I need it. My plan is to book a break with activities to keep the kids happy and to do everything I can to make it as easy as possible for me. If that means takeaway every night, so be it!

I reckon a big part of getting my mojo back is to nurture myself more… it is almost as if I have been so consumed by the bad things going on, I have stopped doing the things I knowI enjoy. Instead of blogging, baking recipes, crocheting, reading and gardening I seem to be stuck in a loop of watching random YouTube videos and doing boring, everyday tasks such as cleaning and cooking. I need to get back to my hobbies to give me a sense of enjoyment back. I have just done a Tesco shop for the ingredients to make some nice granola and healthy(ish) cookies, so that’s a start. I promised my mother in law some of the biscuits as she liked the first

batch I made so much giving to others is another way to feed my soul and up my mojo.

I have decided I need help. When I think about how my life has changed over the past few years, it is no wonder everything has become too much for me. I have had relationship issues, medical treatments to go through, including chemotherapy as part of my HSCT treatment. I had to stop my NHS job and my MS has worsened. Walking is harder, I have had numerous falls and broken a bone and tooth. I take citalopram, a low dose anti depressant but yesterday I self referred for support from the local NHS mental health team for talking therapy. They rang me with a telephone assessment date almost right away. I already feel ‘lighter’ and I feel it has helped to bring a bit of mojo back hence having the motivation to write this blog post. Do you have any sure fire ways to keep or get your mojo back?

Speech: I Don’t Need Anyone to Complete My Sentences

There are a lot of things I hate about multiple sclerosis. Things frustrate me, overwhelm me and get on my nerves. One thing combining all these feelings is when someone interrupts to finish my sentence for me. This causes my train of thought to derail, leaving me unsure of what I was trying to say. MS can cause speaking to become difficult and it doesn’t make anything easier when someone talks over me. One of the first things we learn as a child is how to speak. At first, we only know a handful of simple words. As we grow older, our vocabulary expands but we might still struggle to say certain words. Eventually, we get better at speaking and make fewer mistakes. I used to have no issues with public speaking. By the time I was 20 years old, I had become good at speaking. I had no trouble putting my thoughts into words and was quick with replies. I loved getting into debates with people and I had no problem with public speaking. Then, MS happened.

MS causes symptoms which affect almost every part of the body, including speaking. MS can make speaking difficult by preventing your tongue and lips from making many of the intricate movements needed to form words. At the same time, MS can affect the cognitive processes involved in

speech. People with MS may have difficulty organising their thoughts into spoken words, remembering what a word means, finding the right word or remembering what they were trying to say. I almost always have cognitive difficulties when it comes to speaking my mind. Specifically, I usually have a hard time organising my thoughts and forming a sentence. To make any sense, I have to plan out each sentence, sometimes one word at a time. This is where one of my biggest MS related pet peeves comes in.

I’ve always hated being interrupted who doesn’t? I think it very rude, like, they don’t care enough about what I’m saying to let me finish. On top of feeling like someone won’t let me finish saying what I have to say, I have to deal with the frustration of not being able to express what I’m thinking. Sometimes, I feel I’ve moved back to when I was as a child with poor speaking skills. Once it was evident this would be an ongoing issue, I decided I needed to do something about it. I started trying to slow my brain down to think about what I wanted to say and find the right words to form a sentence. This has helped a bit but has resulted in an unintended consequence that takes being interrupted to the next level. The problem I have with trying to slow down, thinking about what I want to say and taking my time saying it, is people are impatient. Some people do not know I have speech problems but many repeat offenders know full well about my need to take my time. What typically happens is, halfway into my sentence they will interrupt and either try to finish my sentence or simply respond to what they think I’m trying to say often they guess wrongly. Being interrupted causes me to forget how I was trying to construct my sentences and sometimes even the point I was attempting to make. This means I have to circle back to the beginning to try again. Does their first

failed attempt at guessing what I’m trying to say dissuade them from trying again? No! Halfway into the second attempt at expressing myself, I’m interrupted by another guess. This is when I start feeling a little frustrated. Please, give me a second to think about what I want to say!

A lot of the time, especially when I’m in a group conversation, this isn’t an opportunity I feel I’m given. Much like how trying to count backward from 100 while someone is shouting random numbers at you, it’s very frustrating. I just can’t maintain my train of thought! I would compare it to watching ten different news stations on ten different TVs at the same time and trying to pick out a complete sentence from the chaos. You know what all of this feels like to me? It feels like I’m 10 years old sitting at the grown up’s table during a meal. Everyone is engaged in deep conversation but despite how hard I try to be in it, no one gives me a chance to speak. Then when they do? I manage to get a few words out before I’m interrupted. At the same time, I’m also losing patience with myself because of my apparent inability to coherently speak. If I could, maybe people would listen? Maybe people would let me finish a sentence without interrupting me?

This is when I just give up on a conversation, whether it’s finished or not, because I’m totally burned out. I end up feeling like the rude one for walking away from these kinds of conversations. What am I supposed to do? When a conversation between me and someone else turns into a conversation between them and what they think I’m going to say? That’s not how conversations work. All I want to do is get away because I feel so overwhelmed. This is definitely one of the highest things on my list of MS related pet peeves. By Matt Allen G

Random Thoughts

Down Memory Lane …… Back in the Days by Robert Lanchester

Back in the days of tanners and bobs, When mothers had patience and fathers had jobs. When football team families wore hand me down shoes, And tv gave only two channels to choose.

Back in the days of three penny bits, when schools employed nurses to search for your nits.

When snowballs were harmless; ice slides were permitted and all of your jumpers were warm and hand knitted.

Back in the days of hot ginger beers, when children remained so for more than six years.

When children respected what older folks said, and pot was a thing you kept under your bed.

Back in the days of Watch with Mother, when neighbours were friendly and talked to each other. When cars were so rare you could play in the street. When doctors made house calls; police walked the beat.

Back in the days of Milligan's Goons, when butter was butter and songs all had tunes.

It was dumplings for dinner and trifle for tea, and your annual break was a day by the sea.

Back in the days of Dixon's Dock Green, Crackerjack pens and Lyons ice cream.

When children could freely wear National Health glasses, and teachers all stood at the front of their classes.

Back in the days of rocking and reeling, when mobiles were things that you hung from the ceiling. When woodwork and pottery got taught in schools and everyone dreamed of a win on the pools.

Back in the days when I was a lad, I can't help but smile for the fun that I had.

Hopscotch and roller skates; snowballs to lob. Back in the days of tanners and bobs.

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 or 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

Although we have chosen to break away from the MS Society, it 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 at: https://mstrust.org.uk/what we do/about us/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 SCIO regulated by OSCR Scottish charity number SC051225