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 |
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.
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.
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.
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.