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Old 15-11-17, 12:08 PM   #1
Shmophie
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Join Date: Nov 2017
Location: London
Posts: 2
Default New and looking for answers :-)

Hi everyone 👋
I found out yesterday that I have HD.
I’m trying to remain positive but always felt I might have HD as have known my whole life it is in my family.
I’m not the sort of person to reach out for help but I have so many questions going through my head that I can’t seem to find the answers for. Apologies in advance for the lengthy-ness.

- When I do start to develop symptoms, what will be the earliest signs? I know we are all different but for you what came first and at what age?
- Before you began to develop signs, is temper and forgetfulness a typical trait of someone with HD as have always struggled with ‘red mist’ my whole life.
- What are the options for me if I want to remain independent for a long time and wish for my husband and son (currently 1 year old) to not have to be burdened with caring for me?
- I said no to a neurologist appointment I was offered as I think it’s too soon. Since then I’ve now begun to wonder if my anger and forgetfulness are the first signs?

I’m trying to just get on with my life and use my time wisely but for me the few things that are really getting me down are:

- the fact that a stranger messaged me that my dad (estranged) is currently deteriorating due to HD. Had someone told me sooner I could have had IVF and my 1 year old son not been at risk.
- I already talk to my husband about my anger issues and that I’m trying to be better. Now I have HD I think it’s going to be inevitable.
- I really don’t want to be a burden on anyone later on in life, I really wouldn’t like my husband or son to have to care for me. I just want to leave an inheritance and to make them both happy.
- Since reading around these forums, now a new one for me would be that my husband would secretly think of leaving me or wonder ‘what if’ and complain of me following him around the house looking for a hug (which I do already 😂). I don’t want anyone to think of me like that.

I guess I’m just looking for experiences from people who have been there. Although most of my dads side of the family had HD I have never seen anyone experiencing symptoms due to being estranged from them and don’t really know what to expect. Any advice I got from a counsellor is very vague “you might bump into things” or “you might have trips & slips”. Don’t we all?

Thanks in advance,

Sophie
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Old 17-11-17, 01:36 PM   #2
HDAModerator
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Join Date: Jul 2007
Posts: 61
Default Re: New and looking for answers :-)

Hi Sophie
I’m one of the moderators on the board, I imagine there is so much going through your head at the moment so wanted to respond to some of your questions.
You are right, everyone is different in how their symptoms start, people often worry about the dropped cup or a stumble or fall but it might be a realization that things are getting harder at work that might highlight that something is changing. The thing is that a positive diagnosis or being at risk brings with it a huge amount of stress and stress can cause all sorts of ‘symptoms’ itself. We talk about ‘top tips’ for people with HD but in fact they work for all of us – keep hydrated, sleep well, eat well etc, if we are tired, hungry, not had enough to drink we are all much more likely to get angry!
As a family it seems to work best when people are honest and open, talk about your fears together, talk about living well together. Think if there are things you can do now to help in the future. There’s some nice guidance on our website about ‘living well’ https://www.hda.org.uk/getting-help/...sk/living-well and ‘talking to others about HD’. Depending on your age there may be events that we run that would work for you – we have a young adults conference for 18-35 year olds and many people comment that meeting others in a similar situation has made all the difference.
There will be a local Specialist Adviser in your area who you can chat through any concerns with, you can find their details on-line https://www.hda.org.uk/getting-help/shda-service or by contacting Head Office 0151 331 5444 / info@hda.org.uk
Best wishes
Ruth
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Old 17-11-17, 07:54 PM   #3
Shmophie
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Join Date: Nov 2017
Location: London
Posts: 2
Default Re: New and looking for answers :-)

Hi Ruth,

Thanks for getting back to me, I’m glad someone eventually did 😅
I really appreciate your insight, I did find what you said really helpful and never really thought of it that way. I do still have some blanks I’d like to fill so just might take you up on your advice of contacting an advisor.

Thank you again,

Kind regards,

Sophie
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Old 20-11-17, 07:19 PM   #4
Trish
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Join Date: May 2010
Location: England
Posts: 2,391
Default Re: New and looking for answers :-)

Quote:
Originally Posted by Shmophie View Post
Hi Ruth,

Thanks for getting back to me, I’m glad someone eventually did 😅
I really appreciate your insight, I did find what you said really helpful and never really thought of it that way. I do still have some blanks I’d like to fill so just might take you up on your advice of contacting an advisor.

Thank you again,

Kind regards,

Sophie
Hi Sophie

Welcome to Messy Board. Sorry you were left dangling as it were. Very quiet in here these days but it's lovely that Ruth picked up on your post.

My Hubby had HD and Ruth was our Care Advisor and she speaks a lot of sense.
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Old 16-12-17, 06:49 PM   #5
melissa21
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Join Date: Oct 2012
Posts: 65
Default Re: New and looking for answers :-)

Hi Sophie,

I am sorry to hear that you tested positive!! Stay strong!!

I am 26 years old and i have also tested positive and i have had symptoms for 5 years so hopefully i can answer some of your questions!!!


I have got a high CAG of 51 so i got symptoms young!!

My symptoms started when i was 21 years old. My first symptoms was twitching in my body, depression, anxiety, mood swings, insomnia.


They say it can affect you years before you actually get symptoms. It has definitely affected me from around 16 years old. I just knew i wasn't 'normal' and that i had the HD gene. I struggled with mood swings, anxiety, depression. Personally i have not had any issues with memory yet.

You could be having very early signs of the disease. When i got tested i went to see the neurologist and they told me i had already started my symptoms and they started me on medication which had made a huge difference to my life. It has stopped my mood swings and other mental symptoms. It was different for me as i do have a high CAG so i did have symptoms young but that will be different for you!!

HD definitely causes mood swings and i had them very bad!! But when you get put onto medication you will find that it really calms you down and makes you alot more relaxed.

I do have some involuntary movement and it is quite bad and it makes me drop everything as my body randomly moves all the time!! Luckily i never actually notice it myself so it doesn't bother me.

I have got very bad mental symptoms. So i am on 2 different medications to keep me stable. Everyone seems to get different symptoms and it can be very different.

I don't have any children but i do have an older sister and she is also at risk. However she does not want to be tested as she is too scared to find out. However she is 32 and she doesn't have any symptoms which is a good sign.

I got the disease from my Dad. He passed away from HD.


You are NEVER a burden!! You are loved so much by your family and they will just want to look after you!!


Let me know if you have any more questions.

Melissa








Quote:
Originally Posted by Shmophie View Post
Hi everyone 👋
I found out yesterday that I have HD.
I’m trying to remain positive but always felt I might have HD as have known my whole life it is in my family.
I’m not the sort of person to reach out for help but I have so many questions going through my head that I can’t seem to find the answers for. Apologies in advance for the lengthy-ness.

- When I do start to develop symptoms, what will be the earliest signs? I know we are all different but for you what came first and at what age?
- Before you began to develop signs, is temper and forgetfulness a typical trait of someone with HD as have always struggled with ‘red mist’ my whole life.
- What are the options for me if I want to remain independent for a long time and wish for my husband and son (currently 1 year old) to not have to be burdened with caring for me?
- I said no to a neurologist appointment I was offered as I think it’s too soon. Since then I’ve now begun to wonder if my anger and forgetfulness are the first signs?

I’m trying to just get on with my life and use my time wisely but for me the few things that are really getting me down are:

- the fact that a stranger messaged me that my dad (estranged) is currently deteriorating due to HD. Had someone told me sooner I could have had IVF and my 1 year old son not been at risk.
- I already talk to my husband about my anger issues and that I’m trying to be better. Now I have HD I think it’s going to be inevitable.
- I really don’t want to be a burden on anyone later on in life, I really wouldn’t like my husband or son to have to care for me. I just want to leave an inheritance and to make them both happy.
- Since reading around these forums, now a new one for me would be that my husband would secretly think of leaving me or wonder ‘what if’ and complain of me following him around the house looking for a hug (which I do already 😂). I don’t want anyone to think of me like that.

I guess I’m just looking for experiences from people who have been there. Although most of my dads side of the family had HD I have never seen anyone experiencing symptoms due to being estranged from them and don’t really know what to expect. Any advice I got from a counsellor is very vague “you might bump into things” or “you might have trips & slips”. Don’t we all?

Thanks in advance,

Sophie
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