We have borrowed this excellent material from the UK Huntington’s Society. Thanks guys.
We understand that the recent outbreak of COVID-19 can be both scary and confusing for those affected by Huntington’s disease and their families/friends.
Those affected by Huntington’s disease who are symptomatic and susceptible to respiratory infection and their carers/family members are advised to self-isolate. As a carer, this can raise a lot of questions about how to protect yourself and your loved one from the virus.
Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.
Many people with Huntington’s thrive on routine and this will likely be disrupted during isolation. Where possible, it is best to simulate an existing routine. For example, if it is normal to visit a café at 10 am on a Thursday, maybe go into the garden or a different room and have a dedicated coffee time? Or perhaps take that time to try out a relaxation session? Huntington’s UK has an online relaxation webinar which gives excellent relaxation techniques and guides audiences through a relaxation session. Mimicking routine as much as possible can be healthy for everyone in the household and external carers/support. Sticking to a routine can help avoid apathy and prompt movement, socialisation and fun.
During self-isolation, people will be forced to spend a lot of time with others in their household. This can be a huge challenge for all involved. It is best to try and maintain periods of separation, this can be hard for those living in close quarters, but distance can be exercised simply by spending time in different rooms. For example, if the person affected by Huntington’s would usually go to a day centre for a few hours, instead make sure they are safe and occupied, perhaps put a movie on for them, creating distance for that time. This time can then be spent doing something else, whether that is cleaning or having a little time to relax and read a book.
Take a moment to read the UK Behaviour and Communication Guide explains some of the symptoms of Huntington’s and why those affected behave in certain ways. The guide explains what can be done to manage a situation before it gets out of hand. They also have a webinar entitled ‘Well-being in carers’ that could also be useful.
Many people affected by Huntington’s disease can find hygiene a challenge in day to day life. For some, hygiene is an on-going issue which can be a cause for concern at this time. There are several ways to cater for this. For instance, putting up posters around the home with reminders to wash hands and demonstrate how to correctly wash hands. If possible, hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing and might be easier for the person with Huntington’s. Antibacterial wipes are also an option.
For people with Huntington’s self-isolation may be a particular challenge, especially if they are used to going out and being on the go constantly. If desperate to venture outside, a garden may be the solution, however, not everyone has a garden. If access to a garden is not possible or it is too small for real exercise, look into remote areas to visit separate from other members of the public.
Looking after yourself
We all need to look after our well-being and mental health at this time. The UK Huntington’s Society has a number of resources which are primarily aimed at carers but are also extremely useful for everyone.
We hope that this post has been informative. If you have any other questions or are in need of support or advice, please contact us on 9874 9777 or email [email protected]. Even though the office is closed, messages to this phone number and email will be checked.
At this time, fundraising is more important than ever. If you had a fundraising event planned that has been cancelled, why not think about ways you can fundraise from home? Maybe you could donate your usual daily coffee or lunch money or take part in a sponsored day without social media! If you would like to make a donation to Huntington’s NSW ACT to help aid our ongoing services during this time please contact us on 9874 9777 or email [email protected].
The original blog page can be found here, but note the service links are for local UK services which don’t apply in Australia: https://www.hda.org.uk/blog/coping-with-self-isolation
We have borrowed this quote from the Huntington’s Disease Society of America. Thanks guys.
Dr. Victor Sung, Chair-Elect of (USA) HDSA’s Board of Trustees and Director of the HDSA Center of Excellence at the University of Alabama-Birmingham, provided the following guidance:
“Having HD does not make a person immunocompromised or at increased risk for contracting COVID-19 more than another person of the same age. However, persons with advanced HD and swallowing problems/aspiration risks would have an increased risk of developing pulmonary complications of COVID-19 if they contracted it. This is similar to if a person with advanced HD were to contract influenza (flu). So, there is no need for special precautions with HD, and we would just advise the social distancing and handwashing that are being recommended universally.”