EMSP Annual Spring Conference 2016 (Oslo, Norway) - Young People's Network: Insights on Readjustment & Staying Ready

Change is inherent to all forms of life, especially true for us as human beings. As things in today’s society evolve so rapidly, we need to constantly adapt and find our way through it all. Things are often complicated and exciting at the same time, and for some of us they are enough as they are. But sometimes faith decides to add some spice to it all. Enter multiple sclerosis, our common friend.

Last week in Oslo, during the main EMSP 2016 Annual Spring Conference (I talked about it HERE), there was also the meeting of the Young People with MS’s Network. This was the 6th year since the group first started, aimed at raising the voice for all young people living with multiple sclerosis throughout Europe. For two days (18-19 May) we brainstormed and came up with ideas and plans to get the YPN moving forward.

The EMSP was kind enough to offer bursaries to a limited number of young people who wished to participate. There were also “veteran” members who only added more insight and experience to the ones who were just starting their journey. We were divided into four groups that each brainstormed new and useful ideas.

This year the aim was to discuss about readjustment in all areas of our lives while living with multiple sclerosis.

Usually, by “adjustment” we understand a change made in order to fit, correspond or conform to a certain state of things. It means to adapt or to accommodate something or someone to a new situation or context. It is self-explanatory that to “readjust” means to adjust again, to rearrange the pieces so that they once more fit the puzzle. The puzzle of life with MS in this case.

Change is inevitable. I’ve written about it HERE, HERE, HERE and HERE. As we grow old, we change. We even change as quick as from minute to minute in some cases. And that is especially true when one minute we’re our old selves and the other we find out that we have an incurable disease named multiple sclerosis. How do we go on?

We all react in different ways to shock. Some get afraid, some become angry, it depends. We all are different. But we all readjust as time goes by. Each in our different times, with our different struggles. Some people refuse change altogether. They deny anything happening to them and try to go on living as they did up until then. But sooner or later, reality comes knocking, waking them up. 

Readjustment needs to be done early. We need to be prepared. (Tweet this)

This was the context in which our discussions began. We exchanged opinions on how the situation is in each of our countries and more importantly, what have we done on a personal level, to adapt to what I may call “our new normals”, how did we readjust to life with multiple sclerosis?

Little to no surprise, the common denominator was the fact that multiple sclerosis is something you can live with if you have the right tools to transform our lives for the better and be prepared to what’s to come.

Life is unpredictable by itself, MS adds to the equation, but it’s vital that we get to know our enemy as best as possible. Thus the need for reliable information on MS was one of the first points that we all agreed on.

Leading a healthy lifestyle (nutritious and clean food, exercise/movement to get the blood flowing, rest/relaxation and not forgetting treatment) that fits our own conditions and likes was another.

Finding balance between activity and rest is needed in order to help the body and thus the nervous system relax and repair what it can be repaired. Fatigue being one of our “arch-enemies”, resting enough is paramount, as to also help with general wellbeing, better symptom management and a clear mind.

We all agreed that prevention is more important, and that we each need to design our own lifestyles, according to our bodies needs and personal preferences. The emphasis was put on health and wellbeing.

Being our own best friend and always finding balance and support within is another readjustment and staying-ready tool. The most important contributor to our emotional, mental and general body health is ourselves. No one can help us if we’re not willing to play our part, if we’re not letting people be next to us. At the same time, we agreed that things change, so the most stable rock that we have is our own self. When everything else fails or disappears, we will always have ourselves. Be friends with our own person. Our body is already putting up a fight with MS.

Having systems in place and daily routines are also of great help (more about how our brains help us with that HERE), as they automatize and save time with our daily activities: saving energy and easing up cognitive input. Systems are of great use for almost everything you might think of: have one in case of a relapse (who to call, what to take to the hospital, what comforts you, things to say/ask/do, etc), one for morning and one for evening routines (train your mind to do certain things without thinking, you’ll save energy; remember to be flexible though, allow space for adjustments), or for anything you might have going on in your life. Personalize them.

Last, but not least, having a support group to reach to in times of need is also important. We thought of having a group of peers, of fellow young MSers who will be able to understand and listen to you without judging. The feeling of belonging is very important, especially when you might feel out of place because of something MS-related.

After all this was said and done (noted down :) ), we agreed on the need to have practical advice to give fellow young MSers. Each of us was asked to think of ways to adapt what was discussed to our own local contexts, to draw inspiration from all these ideas and see what we come up with as to best serve the interests of young people with MS in our countries.

We thought about creating toolkits for the Young People’s Network, to be used in things like goal setting, accomplishing dreams, relationships, career, disclosure etc. Email was identified as the best way of communicating between us, as were moderated discussion groups and the influence of young people’s advocates that can empower and help with supporting one another facing MS.

We came to talk about empowerment tools like access to jobs, courses and anything that will help a young MSer become who s/he wants to become, while staying an active member of society for as long as possible and with the most benefits (ex: financial security, emotional wellbeing, mental health, healthy relationships, etc).

We were encouraged to imitate how the EMSP network of young people came to be and draw inspiration from that in order to replicate the system into our respective countries. Change always starts with and within a community.

Each group thought of ways to attract YP to join the larger community. We ended up with ideas like:

• create workshops on YP MS and life issues (keep it relevant), practical advice to their problems;

• somehow connect all / national groups into one coherent network that supports and empowers young people with MS in Europe;
• stay in touch within each region (exchange ideas and know-how);
• act like experts in your own local networks, providing insightful and useful information while remaining approachable and adding a personal touch;
• allow each member to feel welcome and like they belong, activating and organizing YPG in each country, get people on local / national level together (events, join in activities);
• give examples, offer templates, share practice, inspire - be an example and show / share other examples from the rest of the people in YPN;
• write articles and advertise them (get them to the people who need them most),
• focus on delivering inspirational messages (ex: Lori, Steiner) and on the psycho-social aspects of MS (YP are part of friend, work and family groups - how does MS affect all that? Find ways to make things better);
• discuss what the message will be about in your area and find ways to optimistically explain to YP that they too can climb their own “Mount Everest”;
• find what’s missing in our countries (the “blind-spot”) and come up with a plan / ideas.

Remember that we are not our MS. It is just a disease, an imbalance inside our body. We are all much more that that. Reimagine our ambitions and create new ways in which we can achieve them. Become the architects of our own lifestyle. Design our road to personal independence. We are #strongerthanMS.

Thank you & it was a real inspiration meeting all of you,

Denisa Paslaru (Alexandra Celic - alias)

P.S. Feel free to add or comment upon all the things written above. Collaboration is the foundation of growth.

EMSP Annual Spring Conference 2016 (Oslo, Norway) - Review and Main Highlights

Last week, the city of Oslo was kind enough to welcome us to the annual EMSP Spring Conference. The Norwegian MS Society (MS forbundet) was our host. Facing the wonderful fjord and the modern Opera building, Thon Hotel Opera housed more than 100 participants from all over Europe.

It brought together physicians and patients alike, as well as journalists, researchers and economists. A separate session was dedicated to the young people with MS, where the emphasis was put on the different experiences in dealing with the illness in each european country, on finding common ground in managing life with MS and practical measures to improve the condition of young MSers throughout Europe. Details on this session will be dealt with in a separate article.

The common denominator of the conference was the ongoing fight against multiple sclerosis, sharing new ways in which it can be dealt with and managed in different countries around the old continent, new discoveries made in research, as well as some very inspirational life stories that motivated us all. The theme for this year was Growing with MS.

DAY 1 - Tuesday 17 May

The EMSP President, Anne Winslow, together with the Norwegian MS Society President, Lars Ole Hammersland, welcomed us all for two knowledge-full days. The occasion was even more special, given the 50th anniversary of the MS forbundet (Norwegian MS Society), celebrated together with the Norwegian National Day.

The first session started with learning about new progress in the field, presented by professor Eva Havrdova (MD, MS Center, Charles University of Prague). She started with presenting a short history of the disease, while emphasizing the need for early diagnosis and efficient treatment in MS. It is very important that treatment outcome is assessed frequently, as to be able to change it to a more effective one if needed.

Professor Havrdova underlined the importance of creating national data registries across Europe in order to improve treatment, to know what works best in each condition. The main goal is NEDA (no evidence of disease activity): without relapses, disability progression, T2 / Gd lesions; basically without clinical or MRI activity. Postpone disability by reducing inflammation and preventing brain atrophy. In order to achieve a manageable condition and reduce disability as much as possible, physicians and patients need to work together.

Doctors must work on early diagnosis and begin treatment as early as possible, while constantly monitoring the disease activity and its possible escalations. Patients need to make sure they live a healthy lifestyle: no smoking, no obesity, decrease the amount of salt, exercise and manage stress. All this while fighting for access to high quality care and supporting registries to collect real world data.

MS is now a treatable disease, and we should never give up hope!

An often understated subject in MS is the psychosocial component. Individuals are part of a social system, and thus they should continue to be treated as such, even after being diagnosed with MS. Pasquale Calabrese (MD, University of Basel) emphasized the need to explain MS as an illness that not only affects people at a biological level, but also at a psychosocial one. The need for a biopsychosocial model to explain how does MS affects individuals is thus created. There are three main elements that we need to take into account: our biology (anatomy, physiology, biochemistry), our psychology (perceptions, cognitions, behaviors) and our society (how does MS impact our interactions, relationships and role in the community).

These three influence each other, and by that they influence how we respond to and understand a diagnosis of multiple sclerosis. Depression is a very important aspect in MS, as more than 50% of people who get diagnosed with MS tend to develop depression later on, especially the ones who have brain lesions, comparative to the ones who have more spinal damage.

The main takeaways from Prof. Calabrese are that MS eventually leads to biopsychosocial consequences, affecting our place in society as well as the way we perceive ourselves in terms of relationships and self-image. Being such a complex disease, MS poses different challenges throughout different periods of a patient’s life. A more holistic approach is thus advisable, encompassing the clinical but also the social aspects of the illness.

Emma Rogan (Project Coordinator for Believe & Achieve and Ready for Work, EMSP) talked about the need of having a daily routine and being of service, an active part of society, as being beneficial for young people with MS. All the work-related projects developed by the EMSP in collaboration with other societies are meant to empower individuals and to gradually take away the fear of multiple sclerosis, in both employer and employee. The emphasis of the presentation was on drawing attention to the new Ready for Work project, developed together with Fit for Work. I’ve talked in more detail about the project HERE.

Emma drew us all into the conversation, by interviewing Antonella Cardone (Executive Director, Fit for Work) on what it takes to get the clinicians talk with their patients about the ability to work and be a useful employee, as well as about the need to assess the individual’s skill levels and abilities needed for work, as to be fit for work. The two talked about being given a “fit note” rather than a “sick note” from the doctor. Once more, Emma emphasized the need for people with MS to be able to get back to work and to have the appropriate context in order to give their best, at the top of their abilities.

This ended the first session and lead us to the second one after a well-deserved coffee break.

The second session of the day started with a panel chaired by the EMSP Interim CEO Bettina Hausmann. The panel housed a bunch of data-driven presentations regarding the cost of illness in Europe, as well as other survey conclusions on how do the general public and MSers perceive disease, on the impact of MS and the benefits of early treatment and disease management measures. There was clear evidence that we need to normalize access to treatment as well as costs in order to create an equitable situation all over Europe.

There is also an important need for clinicians to gain an even deeper understanding of what it’s like to live with MS and of how treatment further influences their life quality. The general public and even MSers need a deeper understanding of what MS is, how does it manifest in the lives of people who have it and how it affects brain health. Thus further awareness efforts are needed.

The doctor-patient collaborative relationship was emphasized as key to a better understanding and management of MS, by both physicians and patients. The aim of most of these presentations was conserving brain health for as long as possible, ensuring early intervention with treatment and lifestyle changes that benefit individual’s health.

One of the highlights of the day was Lori Schneider, an MS advocate and motivational speaker who talks about empowerment through adventure. She is the first woman with MS who ever topped the seven summits, including the Everest. Her speech, “Growing with MS” brought us face to face with the need to face our fears, in order to be able to continue living life passionately and wholeheartedly. Although mountain climbing may not be suitable for all MSers, her inspirational story is sure to have made a positive impact on every person who listened to her, and hopefully lit a spark of courage in continuing life with MS and to always do one’s best. A more detailed story on Lori and all her work and impact, in a future separate article.

The night ended with a welcoming drink and Norwegian folk dances, followed by a wonderful Gala Dinner in the hotel restaurant, where all the participants had time to unwind and further network in a more informal context. The event was delightful, as the late sunset of the Norwegian spring beautifully lit the big windows of the room.

DAY 2 - Wednesday 18 May

Bent Hoie, the Norwegian Minister of Health addressed all the participants at the beginning of the second day. 

The following presentations brought along new and exciting information on the genetic factors that predispose individuals to developing MS (but not limited to them) (Hanne Harbo, MD, Oslo University Hospital), on the new criteria for clinical diagnosis in paediatric MS (Rogier Hintzen, MD, Head MS centre ErasMS), as well as three parallel sessions on:

• developing a communication network within the EMSP (Bettina Hausmann, CEO, EMSP and Claudiu Berbece, Communications Coordinator, EMSP);
• better communicating the unmet needs of people with MS (social, professional and psychological challenges) (Olivier Heinzlef, MD, President MS French League and Pasquale Calabrese, MD, University of Basel),
• early intervention with the most appropriate agents, because time is of the essence in dealing with MS (Olvind Torkildsen, MD, Haukeland University Hospital Bergen; George Pepper, Shift.MS; Eva Havrdova, MD, Charles University, Prague; Christoph Thalheim, Director External Affairs, EMSP).

After the lunch break, the day continued with sessions on launching of the MS Nurse PRO in Norway and the challenges that arise in the activities of nurses who deal with multiple sclerosis (Bernie Porter, MS Nurse Consultant, UCLH NHS Foundation Trust; Anne Winslow, EMSP President; Yves Brand, External Affairs Coordinator, EMSP).

Another important point was that of rehabilitation techniques in MS, beautifully illustrated by presenting the case of the Norwegian MS Rehabilitation Center by its CEO, Tone Beiske.

One of the highlights was another motivational speech by a MS adventurer, 29 old Steinar Arset, who travelled along Norway, from South to North, facing all adversity in the search for himself and the power to be alive, even with a disease like multiple sclerosis. A more detailed, separate article on the topic will follow soon enough.

The two day conference was ended with a discussion chaired by the EMSP President, Anne Winslow, on the future projects of the EMSP and its members.

Wrapping Things Up for This Year

And that was all for this year’s #EMSP2016 Spring Conference that went on in Norway’s capital, the wonderful city of Oslo. Read all of the presentations HERE. More about the speakers HERE. Follow the hashtag #EMSP2016 on social media for more insight on the whole event.

I want to thank the EMSP for giving me the opportunity to be part of this amazing event and to express my gratitude for becoming a member in the Young People with MS Network. I am looking forward to continuing on this path, as it empowered me and fellow colleagues to make things happen for young people with MS living in Romania and abroad.

Last but not least, I want to also thank the Norwegian MS Society (MS forbundet) for being such a wonderful host and for receiving us in their lovely capital city.

We’ve started to build something beautiful for our future, and my wish is to grow stronger together, raising the voice for people with MS throughout Europe.

Thank you,

Denisa Paslaru (alias Alexandra Celic)

Reviewing 2015 & New Plans for This Year

Last year has seen a lot of firsts, learning and self-discoveries. I also had a lot of fun, spent time with friends and family, went on vacation and basically enjoyed life as it came. But as with all things “life”, you’ll get some not so good parts also. MS symptoms got a bit more obvious, but I battled them with all that was in my power. All in all, it was a full and enjoyable year. This is going to be a long post, so grab a cup of tea, sit confortably, and let’s dig deeper to see why.

2015 had a lot of firsts and lessons learned, but definetly one of the biggest was starting MS treatment in March. I am well-known by people close to me as being deeply scared by needles and taking any kind of shots. Surprise-surprise! Copaxone, the treatment I’m on, is injectable. It’s a daily subcutaneous (under the skin) injection that burns somewhat when it gets inside the body. If someone had told me a few years back that I’m going to do that daily and not run in terror, I would have called him / her crazy! Actually, I found out that I was not afraid of the needle itself, nor it pearcing my skin, but of the reactions / emotions people around me associated with it since I was little (stick around, we’re going to talk about lots of self-discoveries, ha!). So, that was first of the… firsts.

The second most important thing started was this actual blog. SMart Choice Lifestyle was started in April 2015, as a means to inform and talk about MS-related subjects, advice and living with the condition as a young person. You can read more about that process here.

I read or listened to many insightful books / audiobooks, videos and articles. Through all this I learned a lot about myself, business and life in general. To only name a few, let’s talk about:

“Big Magic” by Elizabeth Gilbert

“Linchpin” by Seth Godin

“The Four Hour Workweek” by Tim Ferris

“Rich Dad, Poor Dad” by Robert Kiyosaki

YouTube basically replaced my TV, as I discovered some amazing channels of which I name the ones I learned the most from: 

Mimi and Alex Ikonn

Gary Vaynerchuk

Yoga with Adriene

Chase Jarvis

Tim Ferris

London Real

Since April 2015, once I’ve discovered the magnificent Adriene Mishler’s YouTube yoga channel and got absolutely hooked, I really got into yoga and meditation. Almost a year later, it has proved to be one of the best if not THE best decision and habit of 2015! It has brought so much clarity and strenght (both physically and mentally) to my life. When my body feels tight or sore from MS-related issues or just from daily work, I always turn to yoga stretches and at least 10 minutes of sitting in silence in order to clear my mind and figure out what’s going on with myself. It’s part of my everyday morning and night routines. Thank you, Adriene! You guys! Be sure to subscribe to her channel and try the #30daysofyoga (2015) and #yogacamp (2016) challenges. She's the best teacher I could ever hope for in this yoga journey! You'll see what I mean: she's funny, calm and really takes her time into getting you finding what feels good on the mat.

Going down a similar lane, I rediscovered God and His meaning to me. Got to know myself a little bit better and learned a lot. In conjunction with going deeper in  my mind and emotions, I found love and strength inside. If you ever think that you are not loved or not stong enough to do something, take a step back, analyze your fears, your thought process and see that if you got through today, you are stonger than you think and you’ll eventually find all the love that you will ever need in your own heart. Just trust and get to know yourself better. It’s so worth it!

It was a time of outlining many projects and having new wonderful ideas. A time of finding my “why”, my mission and calling. It has always been there, staring me in the eyes, but I couldn’t see it because I was distracted with what society taught me. So, I’m a writer and a visual storyteller that likes to help people see the best in themselves. The rest will unfold slowly on this blog, so make sure you subscribe to receive every new update.

I understood that all is flowing, changing, moving, and that I need to go with the flow, adapt and just be. Leave stress aside and focus on the present moment. The rest is fading. So, I had more gratefulness and midfulness than in past years and learned that dreams need action in order to come true. The “secret” is not whishfull thinking, is TAKING ACTION! Doing things.

One big lesson is that forgiveness opens the door to endless possibilities of light heartedness, love and fulfillment in one’s life. You only have to come at it with an open heart and just let go of any grudges, resentments and useless negativity that only brings you down in the end.

There are little miracles happening around us all the time, be aware of your surroundings, the people you meet and the things that you go through.

The funny fact about introspection is that it allows you to understand many of the issues, flaws, problems you’ve had through the years and the reason why they happened. So insightful! I understood that life is in fact very simple and light at its core and we are the ones who make it harder through our own daily choices and actions.

This December I turned 30! And felt like 22 *giggles inside*. Going on the shakespearian lane, what’s in a number? To be or not to be… 30!? What the heck! Let’s live it! I’m 03… oops… 30!

I really didn’t face a big drama (or any drama) when changing my decade. It only made me realise how far I’ve come and how many things I have under my belt. And yet again, how young I still am, and how well that fits with MS! The joy! But let’s not exaggerate! Be humble and grateful for the situation I’m in, because I am aware that others have it way harder than me.

I don’t want you to be offended in the very least by my words, so I must explain a bit: I have a sarcastic-ish way of facing issues in my life, so if it seems I’m just making fun of my condition it’s because I really don’t want to take it seriously. It brings me down, and it’s the last thing I want in my life, on top of the daily stresses. I find it very easy to talk MS-related stuff, make fun of it and beat it sensless with food, exercise and rest. Copaxone only does 30% of the job so I take care of the other 70%, which does not include negative emotions. Hope you’ll understand.

Speaking of lifestyle management, I also thought about what was I doing when I had my best days / results / work. Summing it all up, it was a mix of the following things:

- eating healthy, 

- exercising at least 30 minutes per day, 

- sleeping regularly and minimum 8 hours / night, 

- organising my to-do lists and work in an orderly and disciplined way, 

- focusing on doing just one thing at a time, 

- getting inspiration and achieving the right state of mind, 

- having new experiences and learning

- creating content without constraints, judgements or the others’ opinion in mind,

- working from the heart, when I was authentic and true to myself and my core beliefs.

The biggest, most impactful lesson I had last year was the day when I understood that all is flowing, that all is energy (a vibration basically) and that the most important and life-giving one is LOVE in all its shapes and sizes: kindness, gratefulness, generosity, compassion, forgiveness, etc. We are more stronger than we think. The mind is limiting our actions. Let the Ego go and look at the world through your heart. You’ll be amazed at what you’ll see.

Other highlights of 2015 were finally receiving “The Wahls Protocol” from the U.S. and a surprise red-rose from my boyfriend (May)

me dropping yet another cup that I had for ages, thanks to MS clumsiness (June) (thank you, dear!), 

the Robbie Williams concert in Bucharest’s Constitution Square (July)

the yearly trip to Sibiu and Hunedoara (August), 

the most amazing late summer light I have ever seen, at my parents’ house (August) (the picture really doesn’t do it justice!),  

best friend rebonding girls day out (September),

my boyfriend made THESE for his niece’s birthday (September),

barbecuing and photographing this little guy in the warm autumn light at my boyfriend’s house (October), 

discovering and SAVING my first entirely gray hair (I still have it!) (November),

and enter my beautiful December (might be subjective here, as I’m born close to Christmas, so… if you love it as much as I do, let me know in the comments below): early birthday resent from my boyfriend, 

my own self birthday present, 

celebrating my kindergarden birthday *whistles looking away*,

decorating the Christmas tree, 

the Christmas tree, 

waiting for Santa,

and yet another reason why I love roses

For this year, my three main goals are centered on writing, photography and yoga. These three are my main focal points, with some occasional sprinkles of travel here and there. But most of all, my biggest hope for the beginning of this year is that my next MRI doesn’t show any new lesions.

Thank you all for being here and reading this review!

Sign up to the email list, to be sure you’ll get the three main articles I publish every week, plus an occasional fourth or fifth post when I have something new to share!

Until next time, make the SMart Choices for your lifestyle.

Love,

Alexandra