One small gesture could make a big difference to someone's year.
In October we highlight World Mental Health Day. Mental health is an important topic for anyone living with a degenerative disease such as Huntington’s. Dealing with emotional and physical changes and limitations in everyday life as a disease progresses can be very isolating for a person.
A member of the Huntington’s community came up with an idea with us which we would like to share with the rest of the community.
Sarahjane’s daughter, Charly is 32 years old with a CAG repeat of 58. After noticing that due to her symptom progression, Charly had lost contact with many friends and family. Sarahjane came up with an initiative - ‘One day a year’.
An extract from Sarahjane's email to family and friends:
Charly has Huntington’s disease as everyone will be aware of, she is a bit wobbly on her feet and her speech might be a little hard to understand but she doesn’t have any problems with her brain and spends a lot of time on social media and enjoys Tai Chi and meals out. What Charly misses the most is actual contact with friends and family!
What if you were asked to do something just once a year? It wouldn’t feel like much time in the grand scheme of things. But to someone living with a progressive illness, it could mean something totally different now they are unable to live their life like they used to and like their friends continue to do so.
Sarahjane sent an email round to friends and family that Charly hadn’t seen in a good while. She explained that Charly spends a lot of time on her own and misses friends and family but understands that life can get hectic and also that some people may struggle seeing someone they care about as their illness progresses.
Sarahjane's email continued:
If you’re reading this message, it means that I know you have been a part of Charly’s life and hopefully you will be happy to arrange one day a year to see her! She will be paying her way and if she needs transport that can also be arranged. She might be pleased to use an arm to steady her balance when walking but that’s about it.
We think this is a fantastic idea and one that really thinks about the mental wellbeing of someone living with a degenerative condition.
How you can get involved with ‘One day a year’
If someone you know is living with a disease or illness and you haven’t seen them in a while, reach out to them and arrange a time to visit or meet up - you could really make someone’s year.
If you care for a loved one with Huntington’s disease, why not think about reaching out to their friends or family using the ‘One day a year’ idea.
Sarahjane concluded:
I wrote about the idea of reconnecting with family and friends by messaging them and asking them to make a date with Charly for just one day a year. The results were good and she is so happy to have caught up with those friends and some have turned into monthly meet-ups.
Below are some pictures of some of Charly's recent meet-ups.
