Getting the most out of life with Huntington’s

Keeping active and doing things you enjoy can help you cope with the big challenges Huntington’s can throw at you, whether you have the disease yourself or you’re caring for someone who has it. It can help to combat feelings of anxiety and stress, provide opportunities to make new friends, and bring some joy and fun back into your life. Some types of activity can also help to alleviate some symptoms you may be experiencing.

If you have symptoms of Huntington’s, it can make it harder to continue with hobbies or start new ones. If you find it’s becoming difficult to do things you enjoy, why not ask someone for help? For example, if you go to a running club and it’s becoming too tiring, maybe someone could give you a lift there and back so you can focus your energies while you’re there.

Swimming

Swimming is a great way to be more active if movement is becoming tricky, and you may find that you can move more freely while floating. This can give you a sense of freedom and help you to unwind. The water also gives extra resistance for your body to work against; it’s especially good for keeping the muscles in your arms, shoulders, chest and back strong, as well as for developing stamina.

Local authority pools are accessible for people with a range of disabilities and some also run specialist physiotherapy sessions.

For more information about disability swimming organisations, or to find your local pool, try the Ableize website.

Going to the gym

While it may not appeal to everyone, exercising in a gym can be a great way to keep fit and work on particular areas of your body at your own pace. You can take part in classes or small group sessions run by specially trained instructors who can give you the right support.

Some gyms also have adapted equipment in a smaller room, meaning you can exercise in a more private space.

Many gyms work with local authorities and the NHS to provide GP referral schemes for disabled people. If you meet the necessary criteria, your GP can refer you to a local gym.

In England, you can find your nearest adapted gym on the English Federation of Disability Sport (EFDS) website. In Wales, see Disability Sport Wales.

Walking

Going for a walk can be a good and cheap way to get out and have some fresh air and a change of scenery.

You can get walking advice and suggested routes from the Disabled Ramblers website. The Nationwide Disabled Access Register lets you find accessible nature reserves and other places of interest.

Fishing

Going fishing provides a great opportunity to be outdoors in a healthy and social environment; the British Disabled Angling Association says fishing offers a sense of achievement and possible health benefits.

Horse riding

Riding is challenging and fun and offers both physical and mental benefits. It can help to improve your balance, posture and coordination, and lead to more supple and relaxed muscles. Contact the Riding for the Disabled Association for more details.

Cycling

Riding a bike promotes independent mobility, and improves physical and mental well-being. If you can’t use a single bicycle, you can hire or buy a tandem bike. The charity Charlotte's Tandems lends tandems free-of-charge to people in this situation.

Adult education classes

If it’s not exercise you fancy, check what’s available near you in the form of classes or activities. Your local council should be able to advise what’s on in your area, but you can also search for local arts centres, colleges and community projects. There may be standard activities that you are happy to join, or, depending on your symptoms, you may prefer to take part in activities aimed at disabled people.

Days and nights out

If you want to visit a venue such as a museum, a theatre or a restaurant, it’s helpful to know ahead of time how accessible it is and what kind of facilities and services might be available to help you enjoy your visit.

DisabledGo provides access information to more than 90,000 venues across the UK and Ireland. Books such as The Rough Guide to Accessible Britain can also provide inspiration. The guide is free to Blue Badge holders.

Day centres

Day centres can offer the chance to learn new skills and participate in activities such as music, arts and crafts.

Different centres cater for different groups of people, including those with learning disabilities, physical disabilities or mental health problems. Contact your local council or local carers' centre to find out about day centres and accessible events in your area.

Travel

Having Huntington’s doesn’t need to stop you from visiting places and going on holiday.

  • You can get help and assistance from transport staff when travelling by train or plane. Find out what help you’re entitled to on the Transport if you’re disabled section of the government’s information website.
  • The Motability Scheme can help you to lease a car if you are entitled to either the: higher rate of the mobility component of the Disability Living Allowance or the enhanced mobility component of the Personal Independence Payment. You may also be eligible for a Blue Badge if you meet certain requirements. This allows you to park near to your destination, often for free. You can find some useful information about applying for a Blue Badge on the Citizens Advice website.
  • Disabled people are usually entitled to free or discounted bus travel in the UK, although the offer and eligibility criteria vary slightly between UK nations. You can find out more information and apply online here: England; Scotland; Wales; Northern Ireland.

Holidays

Some organisations provide holidays and short breaks for people with disabilities, either with or without their families. Your social services contact, GP or health worker can give you a list and may be able to make a referral to some of the organisations for you.

Some useful organisations:

  • The Holiday Homes Trust provides affordable breaks in specially adapted accommodation at popular holiday sites for families, carers or groups who have a member with a disability.
  • Contact a Family gives advice and information on getting charitable grants and other financial help towards the cost of a holiday. The charity has produced a useful guide called Holidays, play and leisure (PDF, 1.03Mb).
  • The Disabled Holiday Directory is an online directory of organisations and venues that cater people with disabilities, both in the UK and abroad.
  • Tourism for All is a national charity that provides information on accessible holiday venues and places in the UK and abroad for disabled people, their carers and family.
  • Revitalise is a national charity that specialises in short breaks throughout the year for adults and children (aged six and older) with physical disabilities, dementia or sight impairment, and their carers. The charity has holiday centres around the UK, and also offers holidays in Spain and Germany. All Revitalise centres are registered as personal care centres and most are also registered as nursing care centres. However, the charity does not have the resources to provide holidays for people who are bed-dependent, or who have uncontrolled epilepsy, learning difficulties, or mental health problems.
  • The Disaway Trust is a registered charity that organises group holidays internationally and in the UK for people with physical disabilities aged 16 to 80 years and their carers.
  • Holidays for All is an umbrella website for various specialist tour companies and disability charities. It lists a range of holiday providers who specialise in breaks for people with sensory and physical disabilities, their friends and carers, around the UK and abroad.
  • MindforYou offers supported holidays for people living with dementia and their carers.

If you’re travelling abroad, you can find some helpful information on the NHS website about healthcare overseas. GOV.UK also has specific advice on foreign travel for disabled people.

See also our At Risk/Insurance and legal matters section for information about insurance, including travel insurance, for people with existing health conditions.

Whatever you’d like to do, we’re here to help. Contact us for information, inspiration or answers to specific questions about travel and other accessible activities.