Meet up at the front door of the conference venue and Rudy will lead the way through the beautiful landscape in Blankenberge. Bring comfortable shoes and clothes. No pressure to keep a high pace or go for a long distance. You can adapt to whatever level you want and are comfortable with. The important thing is to be active together and enjoy the fresh air and nice nature.

Astri Arnesen, President European Huntington Association, Andrè Willems, President Huntington Liga and Albert Counet, President Ligue Huntington Francophone Belge will welcome us all to Belgium and tell a bit about HD in Belgium and the role of the associations.

In 1993 the gene mutation causing Huntington’s Disease was identified.  This was a major breakthrough in HD research and we all thought it would lead to the development of treatments relatively fast.  Still we don’t have medicines approved but there has been made major steps forward.  Where has the gene discovery lead us in terms of research, clinical care and how has it impacted HD family members?

Each HD family member has a unique experience and journey. How does it influence your life?

Both family members and health care professionals encounter challenges in communicating with patients. Kierkegaard stated: In order truly to help someone else, I must understand more than he–but certainly first and foremost understand what he understands. In this session we want to explore how HD influence your ability to understand and how the helper can adapt.

Communication is a challenge in most HD families. Many parents struggle to talk with their children about the disease and how it impacts family relations. This situation often leads to an increase in the burden. Instead of supporting each other, we tend to struggle with things in isolation. We know that children who experience being involved and informed cope better.

In this session we will have people tell about the choices they made in relation to have children. As HD is a hereditary disease it brings a lot of uncertainty on how and whether next generation will be affected. The gene discovery and medical
progress has provided us with several options to have children free of the HD gene. But is it a simple solution? Which attitudes and perceptions guide us when
making decisions?

During life, members of a Huntington family may have to make quite some difficult decisions from a very young age: do I want to know, what kind of relationships are permitted, can I have a normal job, when and who to ask for help, psychiatry or psychology. And once symptoms of the disease are prominent, when to stop working, driving, how to live a full life?

Decisions are difficult because they often symbolize the loss of possibilities and the burden of the disease. But also personality characteristics, coping strengths, traumas, sexuality and life experiences play an important role. And features of the disease itself. Perspectives differ, from those involved and the family members, from the care givers and the professionals to employees and society. The endpoint differs, from trying to preserve wellbeing as much as possible to minimizing the risks for incidents as carefully as possible.

All factors taken into account, most decisions are indeed complicated most of the time.         

In Home Marjorie we try to make the impossible possible for clients. Quality of life for clients and their families is our primary goal.  Still managing an organisation requires keeping a balance between the interests of the clients, the employees and the organisation as a whole. Protecting this balance sometimes also implies making difficult decisions that have an effect on the clients. 

To keep everyone on board, it is important to continuously have an open dialogue between clients and families, employees and management and to be transparent about goals, limits and resources. We also see that not everybody has access to the same care, not in Belgium and definitely not across countries. Not having access to appropriate and affordable care limits the amount of decisions the person can make for himself.

A person with HD faces a lot of difficult decisions throughout life. He will also have progressive difficulty in expressing his views and decisions.  As care workers we strive to hear the client’s voice, however quiet, and let it be our compass. Difficult decisions regarding moving to housing, using a wheelchair, adaptations to meals, independence, medical care, etc. require continuous effort to communicate. 

It is also important to accept the gradualness of the decision-making process. When the client gets sicker, the role of close family members may become the role of a representative. They will also face difficult decisions. As care workers we stand beside them to help shoulder the burden. Sometimes care workers have to guide the client and be their compass because they are lost. It is a continuous search for the balance between following the client and knowing when to take his hand and carefully switching from one position to the other.

Systemic Sculpture is an experiential Group Therapy technique. It is addressed to those wishing to acquire other perspectives as well as new dynamics for solving issues, through re-experience, self-revelation and sharing. Group participants, with the help of the therapist and other participants, reconstruct their own personal stories, creating new scenarios for their present and future. Traumas associated with present difficulties are re-embodied, with the aim of further understanding and healing. Following this experiential method, participants are usually left with the feeling of empowerment and emotional and/or practical movement from dead-end situations.

North Star is the HD community’s own song. We learned about it at the EHA conference in Bucharest in 2019. Singing is good for your body and mind and here you will get the chance to sing with peers and enjoy the power of music and
song.

Songwriting enables patients to express thoughts and feelings about their life and share them with caretakers and loved-ones. (I will bring a few songbooks which were published in 2006 containing a selection of 25 songs written with patients during music therapy sessions). Music therapy focusses on behavioural problems, cognitive functions, grieve, loss, emotional distress related to suffering from an incurable hereditary disease. In some cases I give music therapy to a family. Sharing music and emotions, reliving positive memories and enabling family members to experience and share pivotal moments.

Buildings, landscapes, and objects that were once valuable goods are abandoned to time. Even more shocking is human abandonment, where individuals abandon themselves and their people or are abandoned by them. The photography activity “Abandonment” is based on conversations around selected photos with archaeological content and aims to engage participants with the concept of abandonment.

In the support groups you have the opportunity to exchange experience and thoughts with other family members in the same situation.  If you don’t want to share you are welcome to just sit down and listen and learn from others.  We divide the groups based on what relation you have to HD – being at-risk, being gene positive (but pre-symptomatic), being gene-negative, having symptoms of HD,  being a partner/spouse to a person affected by HD

The groups will be moderated by family members with a lot of lived experience with the same relation to HD as you. 

This session will dwell on the needs of people at risk for HD and people with premanifest HD in the context of the Moving Forward project.  
The Moving Forward team will present the background and main goals of the project, describe some of the actions implemented in specific countries and introduce some of the plans for the near future.

The Swedish Huntington Association has over several years developed an online training for professional carers.  They also managed to get financial support to translate one of the training modules into English.  The Huntington`s Disease Association for England and Wales has used the training in collaboration with several care homes.  In this session you will get insights in the online training and learn about the experiences the associations has drawn from using it.

Qigong is a traditional Chinese psycho-corporal activity of well-being and preservation of health. This activity is accessible for everybody regardless of age and physical condition as long as we pay attention to our body, its needs and its limits. Qi gong allows you to reconnect the body and the mind, and to relax while strengthening your flexibility and your vitality.

With conscious breathing and a set of gentle and fluid exercises, qi gong offers an increase in tone and energy while promoting letting go and access to inner peace