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Old 25-09-15, 10:49 PM   #1
ChocoGuy
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Default What do you think? New member need advice

Hi everyone, I'm a new member on here and it's great to see a forum dedicated to this horrible disease. Anyway, I just wanted to talk to you about me possibly having juvenile huntingtons.

My mum was diagnosed when she was just 19 years old shortly after I was born, she lived until she was 34 (just 15 years) and her case was much worse than her fathers.

I'm now 19 years old and I've noticed that as the years are going along, changing are happening to me psychologically. I feel like I have no emotions: I never laugh at anything or cry (I used to be a very emotional person). Even when I force myself to cry, tears don't come. I am also very apathetic, I have very little interest in things that I used to love doing in my early teens such as playing video games. I lose interest very quickly whenever I do anything, which never used to happen. I also do not get sexually attracted to other people like most people my age, which is affecting my social interactions with others as i'm currently in uni.

I'm worried that these are early psychological hints of huntingtons. My movement hasn't been affected yet, apart from the fact that sometimes I start shaking for no reason, but this may be due to anxiety.

Any advice/thoughts on this? I would really appreciate any advice, I'm worried I may have juvenile huntingtons too.
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Old 26-09-15, 08:28 AM   #2
banda
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Default Re: What do you think? New member need advice

I am sure others will comment too but welcome to the message board...here's hoping your need is only temporary. Sorry to hear about your Mum too. I can only advise you to seek some professional help through your GP...a referral to the local Genetics/neurological unit should help to resolve things for you. They usually provide a counselling service too.
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Old 26-09-15, 02:17 PM   #3
Allan
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Default Re: What do you think? New member need advice

.
Hi there

Apologies for the "essay". I’m sure you’ll have several responses by the end of the weekend – especially if “choco” relates to chocolate.

First port of call for you: http://hda.org.uk/hda/shdas

Then:
Juvenile HD Care Adviser, Helen Santini, Tel: 01279 507656 email: helen.santini@hda.org.uk

Specialist Youth Worker, Adam Cho, Tel: 0151 7053460 Mobile: 07711004146 email: adam.cho@hda.org.uk

If you have read anything related to JHD you will have seen that educational performance\attitude and certain behavioural symptoms seem to be more prevalent than in the “adult version”. You list a number of “items” often related to hd but not necessarily specific to the disease, eg anxiety, apathy.

Are you pleased to be at Uni? Are your studies ok? More so, how’s your social life? Do you have good friends that you could talk to?

The reason for my questions is that after my son, 25 at the time, was positively diagnosed in 2012 I had a chat with the Genetics doctor, had my blood taken and Genetic test results given within a couple of weeks - clear. My daughter, 2 years out of Uni then elected to go for Counselling prior to Genetic testing. She had several sessions where she was able to gain a whole load of relevant info. So, when decision day arrived, she was fully prepared for what lay ahead – an hd-free life. My advice is to learn what you can from the professionals and Discuss with your friends.

Whatever you read or hear about the effects of JHD and HD will vary greatly. These are some extracts from JHD papers:
  1. Patients with symptoms but not unequivocal signs, or soft motor signs only, are sometimes said to be in a “prodromal” stage of HD. By definition, prodromal HD cannot be diagnosed beyond reasonable doubt, as per the standard for manifest HD; rather, it must necessarily be judged and treated on the balance of clinical probability. Symptoms of prodromal HD are increasingly recognized as requiring diagnosis, discussion, and management.

  2. Clinically, early Huntington disease patients had more rigidity, bradykinesia, dystonia, dysarthria, seizures and ataxia when compared to adult onset Huntington disease patients, but chorea was more frequent in the adult onset group.

  3. Muscle tone was diffusely increased. Deep tendon reflexes were increased. His gait was wide-based, rigid, slow, and unsteady. Examination of extraocular movements revealed slow saccades and nystagmus.

  4. A 21 year old woman is the second daughter of a non-consanguineous couple with five members affected for Huntington disease, with paternal inheritance. Her symptoms began with visual hallucination at 13 years, followed by aggressiveness. Two years later, she presented chorea. By age 16 years, she had developed urinary incontinence. By age 18 years, she began gait disturbances and anarthria, followed by progressive intellectual decline with psychiatric disturbance and dysphagia. Generalized seizures began at 20 years of age. On physical examination, she had generalized rigidity, increased deep tendon reflexes, bradykinesia, choreic movements, anarthria, and dementia

  5. Patients with juvenile Huntington disease had more rigidity, bradykinesia, dystonia, dysarthria, seizures and ataxia when compared to patients with adult onset Huntington disease.

  6. Huntington’s Disease Society of America. Typical initial symptoms of juvenile HD:
  • Positive family history of HD, usually in the father
  • Stiffness of the legs
  • Clumsiness of arms and legs
  • Decline in cognitive function
  • Changes in behaviour
  • Seizures
  • Changes in oral motor function
  • Chorea in an adolescent
  • Behavioural disturbances

So, you see that it is a very complex issue\situation and the best way to approach your concerns is by contacting the people above – hopefully, to allay your fears.

Best wishes for Uni and, as for sexual attractions, well, it'll happen when it happens.
.
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Old 26-09-15, 07:14 PM   #4
ChocoGuy
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Default Re: What do you think? New member need advice

Quote:
Originally Posted by Allan View Post
.
Hi there

Apologies for the "essay". I’m sure you’ll have several responses by the end of the weekend – especially if “choco” relates to chocolate.

First port of call for you: http://hda.org.uk/hda/shdas

Then:
Juvenile HD Care Adviser, Helen Santini, Tel: 01279 507656 email: helen.santini@hda.org.uk

Specialist Youth Worker, Adam Cho, Tel: 0151 7053460 Mobile: 07711004146 email: adam.cho@hda.org.uk

If you have read anything related to JHD you will have seen that educational performance\attitude and certain behavioural symptoms seem to be more prevalent than in the “adult version”. You list a number of “items” often related to hd but not necessarily specific to the disease, eg anxiety, apathy.

Are you pleased to be at Uni? Are your studies ok? More so, how’s your social life? Do you have good friends that you could talk to?

The reason for my questions is that after my son, 25 at the time, was positively diagnosed in 2012 I had a chat with the Genetics doctor, had my blood taken and Genetic test results given within a couple of weeks - clear. My daughter, 2 years out of Uni then elected to go for Counselling prior to Genetic testing. She had several sessions where she was able to gain a whole load of relevant info. So, when decision day arrived, she was fully prepared for what lay ahead – an hd-free life. My advice is to learn what you can from the professionals and Discuss with your friends.

Whatever you read or hear about the effects of JHD and HD will vary greatly. These are some extracts from JHD papers:
  1. Patients with symptoms but not unequivocal signs, or soft motor signs only, are sometimes said to be in a “prodromal” stage of HD. By definition, prodromal HD cannot be diagnosed beyond reasonable doubt, as per the standard for manifest HD; rather, it must necessarily be judged and treated on the balance of clinical probability. Symptoms of prodromal HD are increasingly recognized as requiring diagnosis, discussion, and management.

  2. Clinically, early Huntington disease patients had more rigidity, bradykinesia, dystonia, dysarthria, seizures and ataxia when compared to adult onset Huntington disease patients, but chorea was more frequent in the adult onset group.

  3. Muscle tone was diffusely increased. Deep tendon reflexes were increased. His gait was wide-based, rigid, slow, and unsteady. Examination of extraocular movements revealed slow saccades and nystagmus.

  4. A 21 year old woman is the second daughter of a non-consanguineous couple with five members affected for Huntington disease, with paternal inheritance. Her symptoms began with visual hallucination at 13 years, followed by aggressiveness. Two years later, she presented chorea. By age 16 years, she had developed urinary incontinence. By age 18 years, she began gait disturbances and anarthria, followed by progressive intellectual decline with psychiatric disturbance and dysphagia. Generalized seizures began at 20 years of age. On physical examination, she had generalized rigidity, increased deep tendon reflexes, bradykinesia, choreic movements, anarthria, and dementia

  5. Patients with juvenile Huntington disease had more rigidity, bradykinesia, dystonia, dysarthria, seizures and ataxia when compared to patients with adult onset Huntington disease.

  6. Huntington’s Disease Society of America. Typical initial symptoms of juvenile HD:
  • Positive family history of HD, usually in the father
  • Stiffness of the legs
  • Clumsiness of arms and legs
  • Decline in cognitive function
  • Changes in behaviour
  • Seizures
  • Changes in oral motor function
  • Chorea in an adolescent
  • Behavioural disturbances

So, you see that it is a very complex issue\situation and the best way to approach your concerns is by contacting the people above – hopefully, to allay your fears.

Best wishes for Uni and, as for sexual attractions, well, it'll happen when it happens.
.
Thanks very much for your comment. As for the answers to your questions, I am scared to be honest for uni because I feel like I don't have much motivation to do anything, but maybe this is simply because it is my first week and I need time to settle in. I got A*A*A in my A-levels which I was very pleased with, so far my academic performance hasn't been affected, but I'm worried it might be soon. I don't have anyone I can speak to because I suffer with social anxiety - mainly because I am very awkward with people because I have to force my emotions to come out (e.g forced laughter) I'm also very conscious of my poor communication skills, sometimes I mess my words up when speaking though I can form correct sentences in my head. I am also very egocentric which is one of the HD symptoms - when people are talking to me about their problems I am not paying 100% attention because I'm telling myself "I don't care, stop talking to me". It makes me sound horrible, but I never used to be like this, I'd socialise with anyone and wouldn't care what people thought. I also feel like I process things at a slower rate than other people, meaning I'm always the last person to say something in a conversation, and by then everyone has moved onto something else. I've got poor memory, particularly when it comes to names. My excellent grades were due to the fact that I spent ALL my time revising because I had nothing else to do, I can't concentrate on more than one thing at a time, so I devoted all my time to study. I'm also a very lazy person, I don't do anything for myself and rely on my dad for everything, I know I should do more and I feel sorry for my dad, but I never have the motivation to change. I also have a lack of self care and hygiene, only getting a shower once a week. My excuse is that I don't go out with anyone so what's the point.

I could talk to my dad about these problems but he just brushes it off every time, he looked after my mum for all these years.
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Old 26-09-15, 08:41 PM   #5
toosh
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Default Re: What do you think? New member need advice

Quote:
Originally Posted by ChocoGuy View Post
Thanks very much for your comment. As for the answers to your questions, I am scared to be honest for uni because I feel like I don't have much motivation to do anything, but maybe this is simply because it is my first week and I need time to settle in. I got A*A*A in my A-levels which I was very pleased with, so far my academic performance hasn't been affected, but I'm worried it might be soon. I don't have anyone I can speak to because I suffer with social anxiety - mainly because I am very awkward with people because I have to force my emotions to come out (e.g forced laughter) I'm also very conscious of my poor communication skills, sometimes I mess my words up when speaking though I can form correct sentences in my head. I am also very egocentric which is one of the HD symptoms - when people are talking to me about their problems I am not paying 100% attention because I'm telling myself "I don't care, stop talking to me". It makes me sound horrible, but I never used to be like this, I'd socialise with anyone and wouldn't care what people thought. I also feel like I process things at a slower rate than other people, meaning I'm always the last person to say something in a conversation, and by then everyone has moved onto something else. I've got poor memory, particularly when it comes to names. My excellent grades were due to the fact that I spent ALL my time revising because I had nothing else to do, I can't concentrate on more than one thing at a time, so I devoted all my time to study. I'm also a very lazy person, I don't do anything for myself and rely on my dad for everything, I know I should do more and I feel sorry for my dad, but I never have the motivation to change. I also have a lack of self care and hygiene, only getting a shower once a week. My excuse is that I don't go out with anyone so what's the point.

I could talk to my dad about these problems but he just brushes it off every time, he looked after my mum for all these years.
Hi CG
I think Allan has provided you with contacts to get in touch with people you can talk to about all of the things you've mentioned here. Just wanted to welcome you to the message board. Well done on the A level results, fantastic results
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Old 26-09-15, 10:57 PM   #6
Melody
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Posts: 339
Default Re: What do you think? New member need advice

Hi CG and welcome.

I see our Allan has given you some excellent advice and links.

You are obviously a clever guy to get those grades... well done. Just starting Uni is a difficult time, it takes a while to settle in for everyone.

I may be wrong, but reading your posts you seem convinced that you have HD......same age as your Mum, you list many things that could be attributed to HD. However, fear, anxiety and stress can all cause these symptoms too. Are you subconsciously holding back from making new friends, having relationships etc because of your fear of having HD?

I hope you contact some professionals to talk to and help you work through this and wish you the very best.

Take care. x
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Old 26-09-15, 11:27 PM   #7
Allan
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Default Re: What do you think? New member need advice

.
Hi again CG

I hope you don’t mind me being practical and lengthy in my responses. I have got a few more questions – but I think the best way to help from my “parental” perspective is just to go through all the points you have raised. Obviously, your brilliant A-Level results will help to work your way through information and glean some answers for yourself as you apply them to your current situation.

As well as contacting the brilliant people at the HDA maybe you could ask for a meeting with your Personal Tutor [or whatever the current term might be], Student Support & Welfare plus the Student Union and the possibility of Peer Mentoring - and make arrangements for someone from the HDA to be at the meeting to support you. In fact, if you contact the people mentioned in my first post they might be able to arrange the whole thing – and provide relevant information.

I’m tempted to be nosy and ask what subjects you are studying and do you live at home, local to your Uni, or are you in halls of residence. Don’t answer that if you don’t want to. I’m just trying to build up a picture of your current life and how you operate. I take it that with 3 A*s you’re not doing Sports Science or Media Studies or similar?

You seem to analyse yourself and sum up your situation very well – you probably just need to be consciously working at developing a more outgoing and social “manner” – although there’s nowt wrong with being quiet and self-centred.

I couldn’t possibly own up to 2, 10 and 11 below but, over my long life, I can acquaint with the rest of your feelings and thoughts - and I ain’t got hd.
  1. I am scared to be honest for uni because I feel like I don't have much motivation to do anything, but maybe this is simply because it is my first week and I need time to settle in.
  2. I got A*A*A in my A-levels which I was very pleased with, so far my academic performance hasn't been affected, but I'm worried it might be soon.
  3. I don't have anyone I can speak to because I suffer with social anxiety - mainly because I am very awkward with people because I have to force my emotions to come out (e.g forced laughter)
  4. I'm also very conscious of my poor communication skills, sometimes I mess my words up when speaking though I can form correct sentences in my head.
  5. I am also very egocentric which is one of the HD symptoms - when people are talking to me about their problems I am not paying 100% attention because I'm telling myself "I don't care, stop talking to me".
  6. It makes me sound horrible, but I never used to be like this, I'd socialise with anyone and wouldn't care what people thought.
  7. I also feel like I process things at a slower rate than other people, meaning I'm always the last person to say something in a conversation, and by then everyone has moved onto something else.
  8. I've got poor memory, particularly when it comes to names.
  9. My excellent grades were due to the fact that I spent ALL my time revising because I had nothing else to do, I can't concentrate on more than one thing at a time, so I devoted all my time to study.
  10. I'm also a very lazy person, I don't do anything for myself and rely on my dad for everything, I know I should do more and I feel sorry for my dad, but I never have the motivation to change.
  11. I also have a lack of self-care and hygiene, only getting a shower once a week. My excuse is that I don't go out with anyone so what's the point.
  12. I could talk to my dad about these problems but he just brushes it off every time, he looked after my mum for all these years.
So, get organised, get help – and then, when you're ready, get on with it …… life.

.
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Old 27-09-15, 12:21 AM   #8
Skywalker
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Default Re: What do you think? New member need advice

Quote:
Originally Posted by Allan View Post
.
Hi again CG

I hope you don’t mind me being practical and lengthy in my responses. I have got a few more questions – but I think the best way to help from my “parental” perspective is just to go through all the points you have raised. Obviously, your brilliant A-Level results will help to work your way through information and glean some answers for yourself as you apply them to your current situation.

As well as contacting the brilliant people at the HDA maybe you could ask for a meeting with your Personal Tutor [or whatever the current term might be], Student Support & Welfare plus the Student Union and the possibility of Peer Mentoring - and make arrangements for someone from the HDA to be at the meeting to support you. In fact, if you contact the people mentioned in my first post they might be able to arrange the whole thing – and provide relevant information.

I’m tempted to be nosy and ask what subjects you are studying and do you live at home, local to your Uni, or are you in halls of residence. Don’t answer that if you don’t want to. I’m just trying to build up a picture of your current life and how you operate. I take it that with 3 A*s you’re not doing Sports Science or Media Studies or similar?

You seem to analyse yourself and sum up your situation very well – you probably just need to be consciously working at developing a more outgoing and social “manner” – although there’s nowt wrong with being quiet and self-centred.

I couldn’t possibly own up to 2, 10 and 11 below but, over my long life, I can acquaint with the rest of your feelings and thoughts - and I ain’t got hd.
  1. I am scared to be honest for uni because I feel like I don't have much motivation to do anything, but maybe this is simply because it is my first week and I need time to settle in.
  2. I got A*A*A in my A-levels which I was very pleased with, so far my academic performance hasn't been affected, but I'm worried it might be soon.
  3. I don't have anyone I can speak to because I suffer with social anxiety - mainly because I am very awkward with people because I have to force my emotions to come out (e.g forced laughter)
  4. I'm also very conscious of my poor communication skills, sometimes I mess my words up when speaking though I can form correct sentences in my head.
  5. I am also very egocentric which is one of the HD symptoms - when people are talking to me about their problems I am not paying 100% attention because I'm telling myself "I don't care, stop talking to me".
  6. It makes me sound horrible, but I never used to be like this, I'd socialise with anyone and wouldn't care what people thought.
  7. I also feel like I process things at a slower rate than other people, meaning I'm always the last person to say something in a conversation, and by then everyone has moved onto something else.
  8. I've got poor memory, particularly when it comes to names.
  9. My excellent grades were due to the fact that I spent ALL my time revising because I had nothing else to do, I can't concentrate on more than one thing at a time, so I devoted all my time to study.
  10. I'm also a very lazy person, I don't do anything for myself and rely on my dad for everything, I know I should do more and I feel sorry for my dad, but I never have the motivation to change.
  11. I also have a lack of self-care and hygiene, only getting a shower once a week. My excuse is that I don't go out with anyone so what's the point.
  12. I could talk to my dad about these problems but he just brushes it off every time, he looked after my mum for all these years.
So, get organised, get help – and then, when you're ready, get on with it …… life.

.
Yes, brilliant advice. Student counselling services are usually good too, particularly if your personal tutor helps to push for them. They wil link in to other support. And is good to have someone to talk too anyway. But do let tutors etc know and don't worry about being quiet. Just find your own strengths. I have taught countless 'shy' Asian students who can't speak and believe me, they often come out on top. And if you need help re presentations/oral work, then check the notice board and find a postgrad or totor to help. You can stay in touch with me if you like. I would be really happy to help - it was my job until recently.
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Old 27-09-15, 08:16 AM   #9
shiraz
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Default Re: What do you think? New member need advice

Well Choco...there you go, a guardian angel for you who goes by the name of Skywalker. You need to have done three posts before you will be classed as an approved member and then you will be able to do private messages.

I used to be incredibly shy and anxious about meeting new people, always the one listening and not joining in (still am in fact) so a lot of your worries could just be down to the awkwardness of youth. But, the very fact that you mum suffered from hd and died at such an early age is bound to prey on your mind. Your dad dismissing your fears will be because he doesn't want you to go the same way. Best option in my opinion would be to discuss this with your gp and request counselling. And to contact jhda.

From a practical, hygiene angle....once you start Uni you must force yourself to shower and wash your hair more often....and use deodorant/aftershave - a - the ladies like it, b - you'll not be nice to be around otherwise. Good luck!!
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