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)