COVID-19 is a new illness caused by a virus called coronavirus. For reliable information and advice on keeping safe with regard to Covid-19 please see the HSE updates here. For those whose first language is neither English nor Irish, translated public health information in other languages can be found here.
Anyone who is symptomatic of Huntington’s Disease and who is susceptible to respiratory infection should, together with members of their household, be aware of HSE advice and follow guidelines on at risk groups . You can minimise your risk of contacting Covid-19 if you avoid physical contact with others, wash your hands regularly with soap and warm water, and do not touch your eyes, nose or mouth.
If you think you might have contracted COVID19, please follow the HSE Guidelines. This means that you should self-isolate and telephone your GP to arrange a test at one of the testing centres. Do not go to A&E without discussing with this with your GP or Neurology team beforehand. For additional information please see Frequently Asked Questions
Phase 1 of Ireland's Roadmap for reopening is now in place View here
Access to Neurology Services and COVID19 - Guidance From neurology Clinical Programme
Neurology services will continue to operate with some changes. Patient safety is being prioritised to limit the risk of COVID infections. For this reason, most face to face out-patient clinics have been cancelled. However, phone consultations are being provided by the Neurology teams and if clinically necessary, a face to face appointment can be scheduled in a non-COVID area if your consultant deems this to be necessary. Please note that this may be different from the normal out-patient setting.
If you have any concerns about your condition, you should contact the neurology service that is providing your care. Please bear in mind that phone lines and neurology services will be extremely busy at this time, and that it may take some time to get through.
Members of the Neurology team at Tallaght University Hospital, Dublin share information on managing PSP and CBD - which includes tips of benefit to people living with other neurological conditions and their family caregivers https://youtu.be/3WBHcH3lX_c
We are advised that genetic services have been put on hold for all except those requiring prenatal testing. The usual referral pathways for prenatal genetic services via your GP and/or obstetrician remain in place.
If you are providing care for a person living with HD it is important that you keep your hands and household surfaces clean. Physically isolating yourself and your loved ones can keep your family safe from Covid-19. If you can't order necessary supplies online ask a trusted family member or friend to help by delivering them to your door while keeping a safe distance. Community Response Supports are also in place to assist. Keep necessary medical and contact information to hand and have a back-up plan if you become ill. Connect with family and friends online or by phone to avoid feeling isolated.
Carer Support organisations have information and carer protocols on their websites including:
Minding Your Mental Health
Social distancing and restricted services and supports during the current outbreak of (COVID-19) poses challenges and can be a worrying time. This can affect our mental health. But there are things we can do to mind our mental health during this time.
- limiting exposure to news and social media while staying informed via reliable sources
- maintaining healthy routines
- staying socially connected to others while adhering to the social distancing measures
- speaking to people we trust about the feelings and concerns we may be having at this time
The HSE has some useful tips for Minding Your Mental Health During the Corona Virus Outbreak
The ‘Together’ campaign is hosted on gov.ie . It points people to the HSE’s Your Mental Health offering supports and resources including online and telephone services, as well as providing tips and advice from cross-Government and Healthy Ireland partners on topics such as physical activity, parenting, coping with daily routines and supporting people who are ‘cocooned’. As part of this campaign, HSE, Health & Wellbeing are offering a Stress Control Online programme at Stresscontrol.org.
Regular exercise and relaxation techniques can help to lessen stress. The Beaumont Mindfulness and Relaxation Centre offer a free online resource.
Organisations providing mental health supports include:
- The Samaritans are available 24/7 for free support by Phone 116 123 Email email@example.com
- Aware operate a freephone support line 1800 804 848 (7 days a week from 10 AM - 10 PM) Email firstname.lastname@example.org
- Pieta have 24/7 freephone supports 1800 247 247 and Text HELP to 51444
- HDYO are an online resource for young people impacted by HD
- Jigsaw have online services for young people such as "Ask Jigsaw" and "Jigsaw Online Group Chats" https://tinyurl.com/voo9hnu
Following government recommendations on social distancing HDAI staff are now working from home. Our helpline remains open via mobile 087 051 7772 and 087 7911 716 and email: email@example.com
Our Family Support Officer is available Monday to Friday to take calls and provide support via video call if preferred. If you need support please call or email.
HDAI's Cork and Limerick Support meetings have taken place via Zoom. Please get in touch at firstname.lastname@example.org if you would like to join an online support group chat.
We thank you for your patience and understanding.
COVID-19 Community Response Supports
Local authorities have set up local Community Response Forums in each local authority area. The Citizens Information Website list the contact details for your area . You can also call a national number, which is being managed by the charity Alone - 0818 222 024 from 8am to 8pm, Monday to Sunday.
Call the national number, or your local authority’s community response number if you need help with:
- Shopping for food, fuel and other essential household items
- Transport to medical appointments
- Delivery of hot meals through local meals on wheels services
- Collection of prescribed medicines
If you are not sure who you should call for your particular needs, the national helpline and the numbers listed will be able to advise you.
COVID-19 Pandemic Unemployment Payment
Our government have introduced a new COVID-19 Pandemic Unemployment Payment. This new payment is available to all employees and the self-employed who have lost employment due to a downturn in economic activity caused by the Covid-19 pandemic. For information on this payment and how to apply check out the Gov.ie website here