Living well

Modern day life is busy. Most of us have to juggle many things – long work hours, relationships, family commitments, social lives.

We’ve all heard the mantras ‘eat healthily’, ‘get enough exercise’, ‘use your brain’, ‘sleep well’, ‘take time for relaxation’, however, these principles can be especially relevant for people who are at risk of or living with Huntington’s disease.

Healthy living can benefit everyone, leading to improved mental health, a greater sense of control over life and a better ability to cope when the going gets tough. It’s very important to take time out for relaxation and ‘me time’.

Building up reserves in the brain

There is a well-known phrase: ‘use it or lose it’. A less familiar term is ‘neural reserve’ or brain resilience. The ‘use it or lose it’ principle refers to doing things now, so you build your capacity up to be stronger in the future.

Imagine a man who has a go riding a unicycle. His first try is not good; he manages just two rotations of the pedals before falling off. This difficult action of unicycling has, however, resulted in different cells throughout the brain firing, which leads to a kind of circuit of neurons activating together.

He then decides to have a go the next day. Again, this network of neurons fire together and this time, connect a bit more strongly. After this he then decides that he will train in unicycling and does it for an hour each day. By doing this, he strengthens his neuronal network every single time.

How is this man’s unicycling relevant to Huntington’s?

  • An increasing number of studies have shown that an ‘engaged lifestyle’ - one that includes different activities that exercise the brain - has considerable long-term benefits.
  • The fun part is that ‘engaged lifestyle’ refers to anything that uses the brain, from unicycling to seeing a new film, playing XBox, travelling, having a good laugh with a friend, doing a new dance class - the list goes on.
  • Every time you do something that activates your brain, you are training it to be stronger. There is a connection between how we engage our brains now and the strength of our brains in the future.
  • Knowing this can empower us to make changes to our lives today that will help us later on down the track. 

Exercise and physiotherapy

Exercise has been shown to have many benefits for people of all ages and every level of fitness and health. Some of these benefits can include improved mood, concentration, cardiovascular conditioning and improved strength, balance and coordination.

  • If you are at risk for Huntington’s, or in the early stages of the disease, these benefits can significantly improve your quality of life.
  • Taking part in exercise is one of the few ways that individuals at risk of Huntington’s can have some control over the potential effects of the disease process.

Currently research is underway in Europe and the U.S.A, with people with early-mid stage Huntington’s, to determine the possible benefits of various types of physiotherapy-led exercise programs.

Physiotherapists are trained in understanding the effects of movement disorders such as Huntington’s. They can help you to understand the potential physical motor symptoms and progression of the disease, and can prescribe exercises and activities that are appropriate for your own specific needs.

The Physiotherapy Working Group of the European Huntington’s Disease Network (EHDN) has made the following recommendations for people who are at risk of Huntington’s, or at the early stages of the disease:

  • See a qualified physiotherapist who can provide advice on physical activity and potentially help with difficulties related to posture and muscles. Your GP can refer you.
  • Participate in a regular exercise routine (see recommendations below). Structure your day to encourage ongoing physical and mental activity (e.g. daily stair climbing, walking to work, playing cards, doing puzzles)

Basic guidelines for a recommended fitness programme:

  • Trunk mobility & flexibility exercises (e.g. yoga, pilates exercises)
  • Endurance/cardiovascular training (recommended 30 minutes three to five times a week; e.g. walking, swimming, cycling training on a stationary bike)
  • Balance exercises
  • Strength training/core stability.

If you have any questions, you can contact members of the Physiotherapy Working Group of the European Huntington’s Disease Network, who are specialist experts in physiotherapy for people with Huntington’s disease.

You can also talk about exercise and other aspects of living well - including emotionally as well as physically - to your GP, or your SHDA (Specialist Huntington’s Disease Adviser).