Global Connections for Huntington’s NSW ACT

European Huntington’s Association (EHA) conference round up

WORDS LEWIS KAPLAN

I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019 while on leave visiting my family in Switzerland. This was my first Huntington’s conference, attended by people with HD, family carers, Association staff from a few European countries and a mix of HD service providers. I was most impressed by a few stand-out presentations and posters. I took advantage of the presence of John Eden, CEO of the Scottish Huntington’s Association to ask lots of difficult questions over dinner.

“Tangkaer staff use a lot of touch to help the quality of care and report almost no behavioural issues.

“Noi huntington” is an Italian hd young person’s organisation whose members are asserting their right to be recognised, trying to counter the stigma of hd and create a space where young people at risk can meet each other, raise awareness and understanding using social media. their motto is “together we are stronger”. https://www.facebook. com/Noihuntington/?ref=page_internal (in Italian).

The Netherlands (holland) hd Centre showed how developing measures of the quality of care was an important way to improve quality of life. They have identified 60 items across 8 domains to further develop. The Atlant Care Home, a residential HD Centre in Holland, starts to care for and get to know clients while still living at home. It focuses on maintaining capacity and skills with meaningful activities using local volunteers and delaying admission to residential care.

 

Columbia, South America.

 Street a for HD: 

a project funded by Factor-H

that utilises street art to raise awareness for people 

with HD and their families. www.factor-h.org


Tangkaer Care Home in regional Denmark, an 18-bed unit, follows a few interesting rules (and must be very well funded to be able to do so):

  • All residents must always get out of bed; no slacking.
  • Staff must know each resident really well, so relationships and communication are paramount.
  • Communication can be by using pictures and following eyes, may also use iPads.
  • Never say “no” to residents; never make residents wait.
  • Never use the word dementia or manage residents as if they were demented.
  • Don’t categorise HD by stages.

Tangkaer staff use a lot of touch to help the quality of care and report almost no behavioural issues.

A Colombian project called Street Art for HD or “Huntingart” honours those with HD, using art on buildings in local communities to dignify lives and raise awareness of the conditions people with hd are living in. The Czechoslovakian HD Association has developed and delivers multi- disciplinary training to any service providing support for people with HD. Its aim is to develop a network of facilities throughout the country which can provide quality care for people with HD near to their families.

A presentation on non-drug intervention studies demonstrated promising results from CBD (cannabis) oil which was reported to relieve pain and help with HD muscle contractions. It also reduced anxiety and depression.

The Topaz Centre in Holland has 72 long-term beds, specialised day care and an ambulant support centre for 100 people with HD living at home providing “blended” care from a mix of health professionals. It demonstrated the value of integrated e-health for people with hd living at home.

In other international news, a new documentary, “Dancing at the Vatican” was released in July and we are negotiating to have is shown in Australia. It has been championed by Charles Sabine, a well-known former international correspondent now advocating for people with HD (http://hddennomore.com/event/).

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A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.

Isolation tips and support for young people and their families 

WORDS AMY HALE
As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.

Global Connections for Huntington’s NSW ACT

WORDS LEWIS KAPLAN
I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.
Here's a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.

Coping with self-isolation for People with Huntington’s disease

Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.

Coping well and finding resilience

WORDS AMY HALE
Dealing with life’s challenges as a young person can be difficult. School, work, relationships, friendships and family usually provide more than enough to cope with, put the extra challenges HD brings on top of all of this and it’s no wonder kids and young people affected by HD have a much harder path to navigate.

Travel Assistance

Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) is a NSW Government scheme that provides financial assistance towards travel and accommodation costs if a patient needs to travel long distances for health or medical treatment that is not available locally.

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