Later stages of Huntington's: what to expect

The nature of Huntington’s is such that gradually, often over a period of many years, the disease progresses until the end of life.

Later on, you may experience difficulties with:

  • weight loss and nutrition
  • speech and swallowing
  • movement and stiffness
  • communication.

These are just a few of the possible symptoms - you may not experience them all or you may experience different ones. It is important to pay attention to the symptoms that are causing you and your family the greatest difficulty, emotionally or practically, at the time.

Sometimes the psychological and emotional sides of living with the disease are more of a problem than the physical side. It can be mentally difficult to cope with having a serious illness, and extremely frustrating not to be able to do more of the things that you could easily do before.

However just because things are likely to be difficult, this doesn’t mean there is nothing to be done. There are many different kinds of support and help that people with Huntington’s can try, to manage their symptoms and live as well as possible. Your carer and family may also need additional support, practically and emotionally.

In the later stages of the disease more care and support will be needed.