Huntington’s positive – A note about life, love and understanding
Testing positive for Huntington’s disease can be very difficult and lead to a challenging future. Many questions arise that are both difficult to hear and hard to tackle. However, it is always important to remember that you are not alone in your result and that others are going through similar experiences to you. Many people find learning from other's experiences to be both educational and a comfort. In this article, we hear from guest author, Harriet Jenkins, as she discusses her partner, Jason’s, positive Huntington’s test result, how he handles day to day life knowing he will develop Huntington’s disease and how, as a family, they stay optimistic and look brightly into their future.
What it’s like to test positive for Huntington’s disease
“When you find out you will eventually develop a terminal illness you can feel physically able for many years, but the impact it can have on your mental health can be so detrimental that it ruins the non-symptomatic years of your life. It can change the way you make decisions, in which friends and family see you and make you feel as though you know you are going to be hit by a car and just waiting for it to happen. You over examine every feeling as being the start of your symptoms. This strain on your mental health can also have a huge effect of your physical well-being and in some cases, the feeling of depression have also been shown to trigger early symptoms in those affected by Huntington’s. It is of course not something to take lightly, but in our household, Huntington’s is very much just a fact of life. Not now, but in the years to come, which we are prepared for and until that, should it ever come, we live every day to the full!”
About my partner, Jason
“My partner tested positive for Huntington’s disease six years ago while serving in the Military. If you ever met him you’d never know through his happy and infectiously positive attitude that he’d ever broken an arm, let alone been told he will develop a terminal illness! He understands the seriousness of Huntington’s by experiencing many years of his mother suffering and sadly passing away young. However, Jason doesn’t see the test result as a life sentence and lives each and every day to the full.
He keeps physically active by walking the mountains of the Brecon Beacon National Park, training at the gym most days, bike riding and running whenever he can fit it in! He hasn’t shied away from responsibility as he represents his village on the Community Council, has shares in a local business and is always there as a pillar of the community for people to turn to in their time of need.”
Jason enjoying a hike in the Brecon Beacons
Living life pre-symptomatic
“Now, I know you’re probably thinking “well, of course, he is going to be positive if he is pre-symptomatic, he can live life as if it isn’t there” but we have already had our fair share of problems as a family due to his test results. This includes him being reported to the DVLA on several occasions as unsafe to drive and his parenting abilities being called in to question just because he has the label of a ‘Huntington’s sufferer’. We have been through many months of stress and unnecessary hurt over this but with the facts speaking for themselves and the doctors continue to say he is completely pre-symptomatic he holds his head high.”
Jason with his Father’s day gift from his sons and granddaughter
Staying positive
“Jason has not let this results turn into a life sentence. He has turned it into a positive, almost like having a near-death experience and I’m sure after 22 years in the RAF he had plenty of them! Jason understands the importance of living life to the full. Of course, get your affairs in order but focus on letting the people you love know this every day. We take lots of pictures and videos just in case memories get a bit sketchy but most importantly we have fun and laugh and love. I always find it frustrating when you go to a funeral and see a full church of people sharing their condolences and you think most of those people haven’t seen or spoken to the person in years to let them know how much they are liked! Sure, it is frustrating when you’re sitting in your local listening to people moan about their everyday problems as if the apocalypse is coming and you sit there biting your lip knowing how bad Huntington’s is. I’m hoping reading this will encourage you to have a positive attitude and know there is plenty of support out there for you.”
Top tip!
“If you love to walk but now find yourself stumbling, find a new location that is just as beautiful but is now flatter. If you’re forgetful then write a list and keep it to hand to avoid frustration and if your mood is low, go and do something that makes you the happiest! There will be no quick fix but this is a slow-moving disorder and being able to manage it early on can really help.”
Who can help?
“If you are struggling with Huntington’s disease then the Huntington’s Disease Association are brilliant for advice or just to know you have someone to listen to you. You can go on their events, meet other families or just get a good connection with your own adviser so that you can have a familiar face when times get hard.”
Harriet Jenkins - HD Voice
A huge thank you to Harriet for sharing her story and advice, we hope that her openness and honesty has helped. If you are affected by Huntington’s disease and are in need of support or advice please contact us on 0151 331 5444 or email info@hda.org.uk.
Testing positive for Huntington’s disease can be very difficult and lead to a challenging future. Many questions arise that are both difficult to hear and hard to tackle. However, it is always important to remember that you are not alone in your result and that others are going through similar experiences to you. Many people find learning from other's experiences to be both educational and a comfort. In this article, we hear from guest author, Harriet Jenkins, as she discusses her partner, Jason’s, positive Huntington’s test result, how he handles day to day life knowing he will develop Huntington’s disease and how, as a family, they stay optimistic and look brightly into their future.
What it’s like to test positive for Huntington’s disease
“When you find out you will eventually develop a terminal illness you can feel physically able for many years, but the impact it can have on your mental health can be so detrimental that it ruins the non-symptomatic years of your life. It can change the way you make decisions, in which friends and family see you and make you feel as though you know you are going to be hit by a car and just waiting for it to happen. You over examine every feeling as being the start of your symptoms. This strain on your mental health can also have a huge effect of your physical well-being and in some cases, the feeling of depression have also been shown to trigger early symptoms in those affected by Huntington’s. It is of course not something to take lightly, but in our household, Huntington’s is very much just a fact of life. Not now, but in the years to come, which we are prepared for and until that, should it ever come, we live every day to the full!”
About my partner, Jason
“My partner tested positive for Huntington’s disease six years ago while serving in the Military. If you ever met him you’d never know through his happy and infectiously positive attitude that he’d ever broken an arm, let alone been told he will develop a terminal illness! He understands the seriousness of Huntington’s by experiencing many years of his mother suffering and sadly passing away young. However, Jason doesn’t see the test result as a life sentence and lives each and every day to the full.
He keeps physically active by walking the mountains of the Brecon Beacon National Park, training at the gym most days, bike riding and running whenever he can fit it in! He hasn’t shied away from responsibility as he represents his village on the Community Council, has shares in a local business and is always there as a pillar of the community for people to turn to in their time of need.”
Jason enjoying a hike in the Brecon Beacons
Living life pre-symptomatic
“Now, I know you’re probably thinking “well, of course, he is going to be positive if he is pre-symptomatic, he can live life as if it isn’t there” but we have already had our fair share of problems as a family due to his test results. This includes him being reported to the DVLA on several occasions as unsafe to drive and his parenting abilities being called in to question just because he has the label of a ‘Huntington’s sufferer’. We have been through many months of stress and unnecessary hurt over this but with the facts speaking for themselves and the doctors continue to say he is completely pre-symptomatic he holds his head high.”
Jason with his Father’s day gift from his sons and granddaughter
Staying positive
“Jason has not let this results turn into a life sentence. He has turned it into a positive, almost like having a near-death experience and I’m sure after 22 years in the RAF he had plenty of them! Jason understands the importance of living life to the full. Of course, get your affairs in order but focus on letting the people you love know this every day. We take lots of pictures and videos just in case memories get a bit sketchy but most importantly we have fun and laugh and love. I always find it frustrating when you go to a funeral and see a full church of people sharing their condolences and you think most of those people haven’t seen or spoken to the person in years to let them know how much they are liked! Sure, it is frustrating when you’re sitting in your local listening to people moan about their everyday problems as if the apocalypse is coming and you sit there biting your lip knowing how bad Huntington’s is. I’m hoping reading this will encourage you to have a positive attitude and know there is plenty of support out there for you.”
Top tip!
“If you love to walk but now find yourself stumbling, find a new location that is just as beautiful but is now flatter. If you’re forgetful then write a list and keep it to hand to avoid frustration and if your mood is low, go and do something that makes you the happiest! There will be no quick fix but this is a slow-moving disorder and being able to manage it early on can really help.”
Who can help?
“If you are struggling with Huntington’s disease then the Huntington’s Disease Association are brilliant for advice or just to know you have someone to listen to you. You can go on their events, meet other families or just get a good connection with your own adviser so that you can have a familiar face when times get hard.”
Harriet Jenkins - HD Voice
A huge thank you to Harriet for sharing her story and advice, we hope that her openness and honesty has helped. If you are affected by Huntington’s disease and are in need of support or advice please contact us on 0151 331 5444 or email info@hda.org.uk.