Who can help with Huntington's Disease (HD)
|
If you are affected by Huntington's Disease either as a carer, as a person who has the disease or someone at risk, you need to develop a good support network.
Friends and neighbours may all be able to offer some support and it is important to help those around you understand the disease. Try to get them to read some of the information about HD.
Oliver Quarrell's book gives a good introduction to HD and Faces of Huntington's by Carmen Leal-Pock gives a good insight into the impact of HD on all concerned.
|
|
What is HD?
Hereditary Facts
Symptoms
Management of
Who can help
Juvenile/Adolescent HD
Links to organisations
Links to other HD sites
Further reading |
Professional Support
- Local suppport groups - this may be a carers group or a local HD branch. The Association will be able to give you contact details.
- Genetics department - support and information about the test and continued support.
- GP and Practise Nurse - be sure to make contact with your GP as early as possible. Get to know your practise nurse. Ask the Regional Care Adviser for the Association to provide information for the surgery.
- Social Services - the social worker or care manager holds the 'key' to many resources such as care at home, respite care etc. and if you are a carer you are entitled to an independent assessment of your needs. You can make your own referral or ask your GP or other professional to refer you. Area offices are listed in the local telephone book.
- Occupational Therapist - referral through your GP or social services. Help with physical and cognitive symptoms.
- Speech and Language Therapist - referral through your GP or social services. Help with speech and swallowing.
- Physiotherapist - referral through your GP or social services.
- Alternative therapists - relaxation therapies can be useful for both carer and the person with HD. Your local library should be able to give you a list of professional bodies.
- Various consultants depending on apparent symptoms. Your GP can refer you to relevant services. These may include:
- Neurology
- Psychology
- Rehabilitation
- Psychiatry
|
|
Sometimes the person with HD may, for whatever reasons, decide they do not want to seek professional help. However, as a carer, it does not stop you requesting support and advice from the relevant services.
If your person with HD does not wish to seek diagnosis, try to build your own support network. Still seek the support of your GP. Contact the Association, seek the support of the Regional Care Adviser. The local support groups will welcome you without a formal diagnosis.
|
This site is designed, built and sponsored by Sandra's Web Designs.
|