How changes in the brain due to Huntington’s affect my brother
He's not aware of it, but his executive dysfunction has led to cognitive decline
Five years ago, I grew increasingly concerned about my brother, Gavin. He was aggressive, angry, anxious, self-neglecting, and unemployed, and he appeared to be coping poorly with his Huntington’s disease. I reached out to our local Huntington’s care adviser, who explained that most of my brother’s emotional and behavioral symptoms were because of problems with his executive function.
In the 11 years I’d spent caring for my dad, this term had never been mentioned to me. Executive functioning includes self-awareness, inhibition, nonverbal and verbal working memory, emotional regulation, motivational regulation, and planning and problem-solving. It occurs when Huntington’s disease causes changes in the brain leading to cognitive decline. Researching this aspect of the disease was a lightbulb moment for me, as it explained the early changes we saw in my brother and our dad, which preceded any motor symptoms by a decade.
After completing his teaching degree at the age of 24, my brother worked as a primary school teacher on a two-year contract, but he didn’t reapply for the job. He also didn’t put any effort into his job applications, sending out the same résumé for every one. He started to do part-time teaching work for an agency.
Gavin and his partner had a son together, but they parted when my brother was 31. He moved into a flat alone, having his son stay mostly on the weekends. He ended up reading electricity meters and doing factory work until he was in his mid-30s. Since then, he’s been unemployed. That was a major change, as he’d always wanted to work and pay his way.
At the time, he seemed anxious and needed our mother with him a lot, particularly when he was caring for his young son, as if he lacked confidence in his abilities as a dad. Losing interest in hobbies and social activities, he withdrew from friends and preferred to stay home.
He also had difficulties driving in his mid-30s, particularly with judging his speed and distance. He crashed into other vehicles while trying to park and pulled away, unaware he’d hit anything. He drove on flat tires and didn’t service the car. He didn’t understand why the oil light on his dashboard was lit up.
My brother today
He’s now 43 and struggles to understand that other people may have different points of view. He fixates on things and gets problems stuck in his head. My brother is unaware of his symptoms and believes he’s too young for the onset of Huntington’s.
The changes in his brain make switching focus between tasks extremely difficult. My brother can now cope with only one thing a day; any more causes him a huge amount of distress. We can’t visit him at home unannounced because he’ll lose his temper. He also struggles to make plans with us to meet up. He becomes angry if his routine changes.
Gavin has lost control of his behavior and struggles to regulate his emotions. He becomes angry quickly. He cannot adapt to his surroundings and has shouted at us in public. He says things that are insulting and hurtful to others.
He has short-term memory problems. He writes notes everywhere to remind him of the most basic daily events, such as watching a TV program. He struggles to read letters and text messages and won’t answer his phone. He also has time-management problems and becomes frustrated when tasks take longer and are harder to complete than he expects.
He suffers from obsessive-compulsive disorder. He lines up his food and medicines on the kitchen countertops and insists that the kitchen sink always be full of water. He loses his temper if the sink is emptied and the water is not put back at the same height or if we move any of his things.
My brother has moments that are more calm and lucid, when he’ll ask for help because he recognizes he needs it. There are times when he can still have a simple conversation, and he can still be kind and complimentary. In these moments, I feel the most heartbroken. In these moments, I can see my brother without his Huntington’s.
While I noticed the early cognitive difficulties in Gavin, medical professionals had a much harder time detecting them. These invisible changes have had a negative and profound impact on the way my brother has been able to live his life. They’ve caused huge amounts of upset and stress.
With Huntington’s disease, more awareness and training are needed to get the right help and support when it’s most needed.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Comments
David McDonagh
Beautifully written Becky. So much resonates with me and my family. I have lost my brother and sister to this disease, the worst disease in the world and I watch now as my nephew and niece are coming to the end I feel so guilty for having a negative result.
Becky Field
So sorry to hear so many of your family have been affected, David. Thank you so much for reading and for your wonderful comments. Best of luck to you and your family -Becky.
Eric R Sorenson
WOW, this information is a great summary.
It seems to DETAIL exceptionally, many...... if the cognitive issues, that tend to decrease an HD patients quality of life.
THANK YOU Becky
Becky Field
Thank you for reading, Eric and for your lovely comments. It really does have a wide ranging impact on a person's life.
Patricia Jacobs
I to have a brother called Gavin who has early onset Huntington’s, he was prescribed olanzapine and we saw a huge improvement in mood and behaviour, but as most people with Huntingtons we are going through a stubborn stage, DWP refused him PIP so he’s decided to stop taking his meds as if DWP think there’s nothing with him then he’s fine (honestly I want to throttle these people) I tell him all the time he needs them and he doesn’t see the changes in him we see, or that his behaviour is not acceptable. He thinks because he’s 36 and early onset he’s fine and has years before he needs help, not realising or understanding he needs help now! I worry about him every day and it’s frustrating when he becomes so blooming stubborn and pig headed but what you can do? I hate Huntingtons with a passion! It was bad enough losing mum and Nan and now my brother
Becky Field
I am so sorry, Patricia, that your brother is also affected, I am shocked at the similarity between our brothers. The drug, Olanzapine, you mention could be good for my brother. I too become frustrated. I filled out my brother's PIP forms as his representative. Then my brother signed them. Left to him he would have received nothing, as he doesn't see any of his symptoms. Please look for me and send me a message on Facebook, if I can help in any way.
Herwig Lange
What a sad story with problems not recognized in time due to lack of knowledge - physicians, partner, family, and patient. If recognizide in time, dealing with emerging problems can be much more effective.
Becky Field
Thank you so much for reading, Herwig, and for your comments. You are so right, the earlier the symptoms are recognised the sooner help can be provided.
Fellow caregiver
I see rigidity, anxiety, and especially lashing out beyond what is normal during stressful interactions with those known and unknown. your words comfort me; knowing it is the disease, and not my loved one.
Becky Field
Thank you, I'm glad it's some comfort to you. My brother is more angry and aggressive when he is finding something difficult or stressful. Or when you are raising issues, he does not want to face. It is definitely the disease, but still not easy to deal with I know.
Cathy Rouleau
Oh Becky your brother’s journey is heart-breaking and so hard on him and his loved ones. As I’ve shared earlier his story resonates with me as my best friend for almost 55 years displays similar symptoms. Her cognitive and emotional decline has been so much harder than the physical issues related to HD. She isolates, fixates, alienates, and struggles so much with paranoia and denial. And as a result those of us closest to her have to take turns being the focus of her anger and trust issues and can’t do anything to help her or be there for her. All I can do is call or message her and let her know that I still care about her. It’s so sad. And it’s not right to say but there is comfort to know that others understand how I feel. Thank you for sharing your story. It helps me to know that others experience this too and share ways of coping.
Becky Field
Thank you so much for reading and commenting, Cathy. The cognitive symptoms are definitely harder to manage than the physical symptoms. It is definitely good to share and keep talking, it feels less lonely. I'm so sorry you're going through this. I think medication can help with these symptoms, but my brother refuses any help at this time. He is very angry and aggressive towards the people closest to him and blames us for everything. I know how difficult things must be for you. Hope your friend is able to accept help soon to move forwards.
Yvette
I watched my ex-husband's behaviour slowly deteriorate over time. It started with him being easily angered, irritated and increasingly more stubborn. He became bipolar and his mood swings became more pronounced over time. He relied more and more on me for his emotional regulation and would get angry at me if I was having an off day as it brought him down. He became an alcoholic and his use of recreational drugs increased. He had always had an exceptional memory, but his short-term memory was deteriorating. When he was about 40 it was confirmed that his mother was HD positive (very late onset) and it became obvious to me that he was also positive. I requested that he be tested so we could stop guessing if it was HD or alcohol/drug-induced brain changes. I felt that we needed to know not only for our future planning but for that of our 2 children. At the age of 42 he was found to be HD positive. He seemed to cope with the diagnosis well at the time. He would go through periods of sobriety and better mental health, only to fall back off the wagon and slip back into poor mental health. His once-successful career plummeted and he became mostly unemployed. He gambled away large chunks of our finances without me knowing as he hid it from me in shame. He was never violent towards me or the children, but when out he would be aggressive and start fights with strangers and sometimes friends. I was burnt out and distressed as I never knew what I would come home to; would he be happy drunk, psychotic and self harming drunk or would I find him dead. He would not go to counselling. He tried antidepressants for a short time but hated the way they made him feel. I called every helpline I could find trying to get him the help he needed, but unless I wanted to have him admitted against his will there was nothing I could do without his consent. In the end, he made a stupid decision that ended with him being convicted of a serious drug-related crime and he received a long sentence in a foreign country. As there is little information or studies around the mental changes in HD during the prodromal stages, his HD diagnosis was not considered to be a part of his mitigating factors during sentencing. He destroyed his life and almost took me down with him. I am still caught up in the legal aftermath of what he did. I was also charged with his crimes, but the judge found that I had no case to answer, and therefore not guilty. I am still fighting the prosecution's appeal against the judge's decision. There desperately needs to be more research into the early mental changes experienced in HD. There needs to be more support for those who have been diagnosed and for the family of those who are doing their best to care for them. My sad, tragic tale of woe I believe is only one of many.
Becky Field
I'm so sorry to hear your story, Yvette. It seems to be a common, shared theme. More needs to be done to detect the cognitive symptoms and help people earlier. I wish you and your family all the best for the future.
Sharon Drummond
Wow, this conversation is helping me heaps. My story is very similar to everyone on here. I am quite new to this disease (knowledge). I have been with my partner for 18 months now and the first 12 months of our relationship was very tumultuous to say the least, we broke up 3 or 4 times as he was very hurtful to me with his comments. I did not know then what was going on with him, and he always called me 3 days later to apologize. He is 55yrs old and his mother died of HD at 70. There are 3 siblings and none of them have been tested. My man is the middle child and he says he sees symptoms in his other 2 siblings. He is in complete denial of having any symptoms at all, definitely nothing physical anyway its all cognitive in my opinion. We have our good days but I always dread when the other shoe is going to drop. I have lost 3 good friends this year because they don't like how he treats me. But love prevails and with more conversations like this Becky, I feel I can cope. Thankyou.
Becky Field
Sharon, thank you so much for your message. I am so sorry you are going through this and I hope you have people supporting you. It means a lot to me that these columns are helping people affected by HD. Your man is very lucky to have you.
Diane Estes
What is your brother’s CAG please?
Rebecca Field
Dear Diane, my brother's CAG repeat size is 45 and our dad's was 42. The genetic test didn't exist (at the time of our grandfather or beyond) to know any more of the history of the CAG expansion size in our family.