How can HD Families get the right help: The Norwegian Community comes together in another touching online session

– Written by the Moving Forward team on 9th May 2024

The Norwegian Moving Forward team organised a second online session with the topic “How can HD families get the right help”. We invited 3 knowledgeable family members to share different experiences on ways to get proper help. The session was attended by 18 participants and it was not recorded, so that everyone felt comfortable to share their stories. 

Egil talked about personal assistance and has a lot of experience in this area. Personal assistance relates to user-controlled personal assistance and is aimed at people with a long-term and significant need for personal assistance. This is something many people have experience with when it comes to Huntington’s disease. By having a personal assistant, the user with HD has fewer people to relate to and more stability in everyday life. With home care services, there are many people to deal with, they don’t always arrive at the right time and are often under time pressure. A personal assistant provides help in everyday life, but also provides relief for close relatives.

Ane talked about care homes and municipal housing. She shared her experience of having her own municipal housing for her family member with HD. With Huntington’s disease, you need routines, peace, and stability in everyday life. With this option, the person with HD gets to keep her/his routines in addition to being with the family when they feel like it. It is a place where they could go and be by themselves when it became too much. When it comes to care homes, you can receive full-time care, which can be relevant when you get further along in the process. Ane then recounted her experience of moving from municipal housing to a care home with staffing.

Finally, we invited Beate to talk about the youth gatherings that are organised in Norway every year. The youth gatherings are something that means a lot to young adults, it’s an opportunity to meet other young people in the same situation and not feel alone. The youth gatherings have changed location every year.

This year, the gathering will happen on a Color Line cruise to Kiel during the first weekend of September. So, if you are aged between 18 and 35 and are interested to join this event, you can send an email to

After the three speakers shared their personal experiences, the participants could ask questions and share their own stories. These are often strong stories that reflect different difficult situations people are in. We all have different stories and experiences and by sharing these with each other, we can help and give tips if we have experienced something similar. One topic that emerged clearly is the need to have more information about being a carer and your rights as a carer – where do you draw the line? This is a difficult topic, but incredibly important to talk about. 

Finally, Moving Forward would like to thank everyone who participated and shared their experiences. We hope this has been helpful and supportive for everyone involved!