Things to Consider: Supporting a Loved One with Huntington's Disease

Huntingdon’s Disease: Understanding the Condition and How Living Aids Can Help

Huntingdon’s Disease is a genetic neurological disorder that currently affects around 7,000 people across the UK. It is named after George Huntingdon, a 19th-century US physician who first described the condition among residents of East Hampton, Long Island in an 1872 paper he wrote aged just 22.

Huntingdon’s Disease most commonly manifests between the ages of 30 and 50, but can present at any age. Men and women are equally at risk, and it is an autosomal dominant disorder, which means that if one parent carries the faulty gene, there is a 50 percent probability that their child will inherit it.

There is no cure, but with the right support, people can live with Huntingdon’s Disease for decades while maintaining a good quality of life.

Recognising the early symptoms of Huntingdon’s Disease

The condition causes parts of the brain to stop working properly, and so the symptoms can vary quite significantly from one person to the next. The following are some of the most common symptoms, but keep in mind that not everyone who has Huntingdon’s Disease will exhibit all of them.

• Difficulty concentrating
• Memory lapses
• Depression and anxiety
• Involuntary movements such as jerking or fidgeting
• Muscle contraction or rigidity
• Loss of balance or coordination
• Slow or abnormal eye movements
• Mood swings, irritability and personality changes
• Compulsive behaviours
• Sleep problems

In more advanced stages, symptoms can also include weight loss, difficulty speaking and trouble swallowing food.

Any of these symptoms can be indicative of a range of other conditions such as Parkinson’s Disease, Lupus, Vascular Dementia and others. This is why it is so important that if you or a loved one are exhibiting symptoms, you should consult a doctor for a medical evaluation without delay for an accurate diagnosis.

Living aids to support people with Huntingdon’s Disease

Thousands of people live for years with Huntingdon’s Disease, and the right living aids help them to do so safely, independently and with minimal impact on their lifestyle, social lives and hobbies. It is important to understand that the symptoms will get gradually worse over time, so identifying the most appropriate living aids is something that needs to be regularly assessed and reviewed with the help of family and professional medical advice.

Here are some examples of living and mobility aids that should be considered for people with Huntingdon’s Disease:

Walking aids

One of the most common symptoms of Huntingdon’s is poor balance, so a walking aid is extremely important to help you stay mobile and active. For mild symptoms, a walking stick provides that extra help and reassurance. When balance is more severely affected, consider a rollator. With four sturdy wheels, it provides excellent support, and some also have an integrated seat, so you can always stop for a rest whenever you need to.

A mobility scooter

As symptoms progress, walking will become more difficult. It’s important to accept this fact and take appropriate measures to avoid either social isolation or complete reliance on others. Mobility scooters mean you can still go where you want when you want. Some models, such as the Which? recommended Abilize Ranger, have a range of more than 30 miles on a single charge, while others can be folded up in seconds and carried with you in the car or on public transport.

Kitchen aids

Handling hot food or boiling water is a dangerous proposition if you have shaky hands or loss of coordination. With the right kitchen aids, you can remain independent in the kitchen without risk of accidents. Examples here include kettle tippers, automatic jar openers and easy grip cutlery and cups.

Grab rails

Loss of balance can occur anywhere, so consider installing grab rails around the house, especially in higher risk locations. These might include on steps, close to doorways and in the bathroom.

Dressing aids

Putting on shoes or doing up buttons are seemingly simple tasks that can become increasingly awkward with a condition like Huntingdon’s Disease. With some simple dressing aids such as a shoe horn, sock slide and button stick, you can get on with your life with dignity and without the frustration.

Supportive seating

Involuntary movements and muscle spasms can mean it becomes difficult to sit comfortably. A four motor recliner can solve this problem by providing precision control over your comfort and posture at the press of a few buttons.

More help, treatment and support for Huntingdon’s Disease

Although there is no cure for Huntingdon’s Disease, there is plenty of support available, and there are treatments that can help to manage the symptoms. These include medicines to ease depression or mood swings and to reduce involuntary movements. Physiotherapy can also help you to stay mobile longer and to treat movement problems.

As well as doctors and other medical professionals, it is well worth getting in touch with organisations like the Huntington's Disease Association, the European Huntington's Disease Network and HD Buzz for help, information and advice.