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 Government guidelines View here and follow recommendations for 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. Advice on Hand Washing (WHO)
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
The COVID-19 vaccine offers protection from COVID-19 (coronavirus).
HD Buzz have written an article on Vaccines and HD
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 temporarily cancelled. However, phone consultations are being provided by the Neurology teams - see Tips to Maximise Telemedicine Consultations. It may be possible to schedule a face to face appointment 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.
The Neurological Alliance of Ireland launched their Covid-19 Resource Hub for Brain Awareness Week 2021.
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
Genetic services have now resumed with phone clinics and some face to face appointments being offered. For information on predictive testing for Huntington's Disease call the Genetic Dept. at 01 409 6739.
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 COVID-19 pandemic 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
Stress control provides Stress Control resources online.
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.
The European Huntington Association share tips on Staying Well While Social Distancing which include the importance of maintaining a daily routine and getting a good night's sleep
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 firstname.lastname@example.org
- Aware operate a freephone support line 1800 804 848 (7 days a week from 10 AM - 10 PM) Email email@example.com
- 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: firstname.lastname@example.org
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 regional Support meetings are currently taking place via Zoom. Please get in touch at email@example.com 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
The COVID-19 Pandemic Unemployment Payment is available to employees and the self employed who have lost their job on or after 13 March due to the COVID-19 (Coronavirus) pandemic. For information on this payment check out the Gov.ie website here