Other organisations that can help

We have created a list of other organisations that may be able to offer you support and guidance. 

 

Organisation Phone Number Email Address Website Support Offered
Carers UK 0808 808 7777 [email protected] www.carersuk.org

Advice

Support Resources

Online Forum

Carers Trust Local telephone list [email protected] www.carers.org

Advice

Support Resources

Online Forum

Age UK 0800 678 1602 [email protected] www.ageuk.org.uk

Advice

Support Resources

NHS UK Local telephone list   www.nhs.uk

Advice

Medical Services Referrals

Gov UK Local telephone list   www.gov.uk

Advice

Local Services

Financial Support

Citizens advice

Local telephone list

Adviceline (England): 03444 111 444 

Adviceline (Wales): 03444 77 20 20

   www.citizensadvice.org.uk

Advice

Local services

Cardiff university physiotherapy resources

PAT-HD Physical activity tool for people with Huntington’s 

The physical activity tool is to help people with Huntington’s to think about what physical activity they could do and then make a plan to increase or maintain their physical activity over time. It was designed with people with Huntington’s disease, their families, specialist Huntington's disease advisers and healthcare professionals with funding from the Huntington's Disease Association. You can use this tool by yourself to make your plan. You can also use it to have talk about your activity plans with your specialist Huntington's adviser, physiotherapist or other healthcare professional and then make your plan.

 

ENGAGE-HD physical activity workbook

The Physical Activity workbook (version 2 April 2020) is intended to be used to support people with Huntington's disease to plan regular physical activity with support from a physiotherapist. It includes information on goal setting and resources to help people with Huntington's disease stay active, and it is suitable to be used alongside the Move to Exercise DVD programme below. We advise that you ask your physiotherapist for guidance about use of this workbook, and in developing and progressing your own physical activity goals and plans.

 

Move to exercise 

This exercise programme has been developed by physiotherapists specifically for people with movement disorders. Exercise is not without its risks and this or any other exercise programme has potential to cause injury. To reduce the risk of injury, consult your doctor or physiotherapist before beginning this exercise programme. Your physiotherapist should be able to help you identify which exercises will be most beneficial for you or if you should modify or omit any of the exercises in the DVD. The exercises presented here are in no way intended as a substitute for medical consultation; the authors and producers disclaim any liability from and in connection with this program. As with any exercise programme, if at any point during your work out you begin to feel faint, dizzy or have physical discomfort, you should stop immediately and seek medical advice. Please use the move to exercise workbook alongside the videos below.

Campaign for my brain resources

Huntington's and me

HD and me is a downloadable document created by Campaign For My Brain which provides an individual overview of your experience living with Huntington's. You can fill out the document to inform people involved in your care how Huntington's is impacting your life and what your needs are. Health care professionals such as general practitioners (GPs), physiotherapists, occupational therapists, paramedics, district nurses and any hospital staff involved in your care will benefit from seeing this document.