Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > Young People

Young People For young people under the age of 35 to share experiences, information and ideas

Reply
 
Thread Tools Display Modes
Old 27-01-09, 02:35 PM   #1
sarah1590
Approved Member
 
Join Date: Jan 2009
Location: Kent
Posts: 18
Default Hey .. New to this

Im 18 and im finding its very hard lately. My mum has Hd, shes had it for five years now. I found it very difficult at first, so i went to my Gp and he sent me to a Councillor, It really helped me. I started looking at life differentally and was back to my bubbly self. Recentally my mum has got worst she loses her temper very quickly. She is so impatient, she will ask me to make her a coffee and il say 1 min mum il make you one after this. A min later she will be like can you make me a coffee Lol. Shes getting really forgetful as well, i passed my theory driving test and told my mum what i got out of 50. 1 Min later she will ask what did you get out of 50. She has lost quite a bit of weight recentally too. My mums always been a nice healthy weight but just recent her arms and legs have got skinny. She seems to depend on smoking 10 fags a day and drinking coffee. My Grandad died in october from Alzeimers and i think that might have had quite a big effect on my mum. She isnt on any medication or anything. I have been thinking maybe is the time for her to go on some. She likes to visit her Gp on her own. So I dont really get to know about any medication or anything. My mums mum died of huntingtons when my mum was 16. My mums older sister is in a home and she also has huntingtons.
I was just wondering how others were coping with this cruel illness?
And any advice on diets and medication would be really appreciated xxx
sarah1590 is offline   Reply With Quote
Old 27-01-09, 03:50 PM   #2
Gem
Approved Member
 
Join Date: Jan 2009
Location: Cambridgeshire
Posts: 73
Send a message via MSN to Gem
Default Re: Hey .. New to this

Hi Sarah,

Firstly welcome to the board and I'm very sorry to hear that your mum has this extremely cruel disease. My brother is 27, was diagnosed with HD when he was 21 and is currently residing in a res home. Your in the right place for advice - i havent been on here long - but it was the best decision i ever made.

With regards to meds and dietary advice, does your mum just see her local GP or does she have a HD consultant or a genetics councellor? If not they are your first point of call for advice and help. Your GP will be able to point you in the right direction, if not the Huntington's Disease Association will be able to assist. You can find contact details on the front screen of this site.

People with HD need a higher calorie intake as the disease progresses as the involuntary movements burn alot of calories. This could explain the weight loss you describe.

Other people will be able to offer you some great advice too.

Glad you've joined us hun

Gem xx
__________________
It isn't the mountains ahead to climb that wear you out; it's the pebble in your shoe." M Ali
Gem is offline   Reply With Quote
Old 27-01-09, 04:04 PM   #3
sarah1590
Approved Member
 
Join Date: Jan 2009
Location: Kent
Posts: 18
Default Re: Hey .. New to this

Thanks for replying,
Im so sorry to hear about your brother, 27 Is soo young I thought Hd was for people aged 40+.
My mum just visits her Gp, But even getting her to see the Gp is a knightmare. She likes to go on her own because she knows if i go with her I will mention how she is behaving. When she goes she doesnt tell the truth she just says shes doing ok.
Because she has seen my aunty go threw the same process and when my aunty took pills. She just use to sit there all day in a world of her own. Very drowsy and sleepy. she belives that if she takes any medication she will act like a zombie xxx
sarah1590 is offline   Reply With Quote
Old 27-01-09, 05:41 PM   #4
just1moreperson
Approved Member
 
Join Date: Sep 2007
Location: England
Posts: 3,390
Send a message via Yahoo to just1moreperson
Default Re: Hey .. New to this

Hi Sarah,

Welcome to the board hun. I noticed you didn't mention your dad at all. Is he not in the equation?

It certainly is time for your mum to go on meds. Like Gem says, people with HD need to take in more calories to keep the weight level, you may already know that. What we use for my dad is deserts, at one stage he used to eat over 20 deserts a week, packed full of calories.

It's probably coming to that stage in her progression where you will notice she can't do things she use to. It's sad but that's HD.

OH I'm 20, care for my dad who's in late stages of HD and tested positive myself last summer. Also I got 48 out of 50 on my theory test can't remember what I got on the hazard test, but I lost some points due to clicking to much dammit! passed though

Tc, Matt.
just1moreperson is offline   Reply With Quote
Old 27-01-09, 08:03 PM   #5
frankie
Approved Member
 
Join Date: Nov 2006
Posts: 544
Default Re: Hey .. New to this

Hi Sarah,

Does your Mum have contact with anyone at the HDA ? You could always ring your local RCA for advice.

One of the first medications people take for HD are anti depressants, these wouldn't normally make someone like a zombie. They just help to make you feel less anxious and more peaceful ,as depression is often found in HD.

I have posted a link I found on weight loss, as it can affect people before there are movements .

http://www.hdlighthouse.org/showUpda...icleNumber=609

Take care and let us know how you and your Mum are.
xxx
frankie is offline   Reply With Quote
Old 27-01-09, 08:17 PM   #6
sarah1590
Approved Member
 
Join Date: Jan 2009
Location: Kent
Posts: 18
Default Re: Hey .. New to this

Hey matt, thanks for replying,
Yep dad is in the equation, as a family we have always been very close and we speak about anything.
However Hd never really evr got mentioned. I have 2 brothers one is 20 and the other is 16 and the younger one is always asking me about the illness and the way mum is changing. Me and dad have only just started speaking properly about the illness for a few months now. I never realised how it actually affects him. The older bro never speaks about the illness. I think he prefers to keep it inside.
I will def book a doctors appointment for mum, i just hope that if she does start taking the medicine that she wont completally change her like how my aunty was -sleeping all day .
Yeah your right thinking about what she does eat, she is quite a healthy eater. Always eating fruits and salads. I dont think she would mind eating lots of food high in calories.
Yeah its heart breaking, mum has always been one to style her own hair and make up. Go shopping for clothes and shoes.Shes always taking a real interest in her appearance. Shes completally lost interest in all of that. She now needs help dressing and putting her shoes on. We have two little westie dogs which she loves walking. However she can no longer do that, they would proberly pull her down. She doesnt have the strength anymore. One thing she does a lot lately is watch tv and films. Shes watched james bond - casino royale at least twice today Lol She has never really been a tv person.
I am really sorry that you got a positive result :(
Wow your so brave for taking the test. its gone round and round in my mind for weeks now.
At first i thought yes i will take the test because i was thinking of the future. I really would not like to bring children into this world having this cruel Hd. But i have decided that i wont be having the test done yet because i do want to have children 1 day. I would rather have children for a few years then not have my own children at all. I know it sounds selfish but i could get hit by a bus tomorrow. I cannot let Hd rule my life.
How long has your dad had Hd, Does your dad still live with you at home?
Ahh I beat you by 1 point, i got 49/50 !! xxx
sarah1590 is offline   Reply With Quote
Old 27-01-09, 08:57 PM   #7
dennisw
Approved Member
 
Join Date: May 2007
Location: South Cumbria
Posts: 847
Default Re: Hey .. New to this

Hi Sarah,
Welcome to the Board and I hope we can help you a bit. It is very difficult work caring for your Mum.
There is a Regional Care Advisor for Kent, Sue Young, 01825 841466. Give her a call I am sure she will be able to answer most of your questions about your Mum. It is about time your Mum also saw a specialist in HD as well as the GP, talk to Sue about that.
Cigarette smoking is quite a common obssession with HD suffers,as movement problems occur special care is needed to avoid burns.
Weght loss is also common, there are special high calorie milk shakes that the GP can prescribe. Also a good idea to add things like lots of cream and butter to mashed potatoes, extra cream in soups and sauces and her coffe of course. Does your mum like chocolate, she can binge eat them.
Again I think it would be a real good idea to have a talk with Sue Young.
Dennis
dennisw is offline   Reply With Quote
Old 27-01-09, 09:54 PM   #8
just1moreperson
Approved Member
 
Join Date: Sep 2007
Location: England
Posts: 3,390
Send a message via Yahoo to just1moreperson
Default Re: Hey .. New to this

Hi Sarah,

Meds can be adjusted so don't worry if they bring the odd side effect, they can be changed to suit her needs. My dad watches tv ALL the time. In his case it's sport, he's watching football right now. Not that he has much say in what's put on tv, he is unable to do anything. But we put sport on for him we're nice like that.

The test is very personal. What you decide is up to you. There's a conference at the end of Febuary, which is specifically for young people 18-35, all about the testing issue, having kids, insurance etc. Maybe something that would interest you. I'm going and so are 4-5 others off the board around our age. If you feel like meeting some people your age who understand then wouldn't hurt to come along. Upto you anyway

http://www.hda.org.uk/board/showthread.php?t=940 <<Link for conference.

My dad is still at home but it takes both me and my mum caring for him to keep him here.

49 out of 50! Well done lol When you having your test? I failed my first test

Tc, Matt.
just1moreperson is offline   Reply With Quote
Old 28-01-09, 07:20 PM   #9
jackie.f.
Approved Member
 
Join Date: Nov 2008
Location: Derbyshire
Posts: 160
Default Re: Hey .. New to this

hi sarah
welcome to the board ! you will find lots of support and advice on here ,I know i have.

my husband has hd and we have 3 children who haven't been tested ,

take care jackie x
jackie.f. is offline   Reply With Quote
Old 29-01-09, 07:31 PM   #10
Jan2008
Approved Member
 
Join Date: Oct 2008
Posts: 387
Default Re: Hey .. New to this

Quote:
Originally Posted by sarah1590 View Post
Hey matt, thanks for replying,
Yep dad is in the equation, as a family we have always been very close and we speak about anything.
However Hd never really evr got mentioned. I have 2 brothers one is 20 and the other is 16 and the younger one is always asking me about the illness and the way mum is changing. Me and dad have only just started speaking properly about the illness for a few months now. I never realised how it actually affects him. The older bro never speaks about the illness. I think he prefers to keep it inside.
I will def book a doctors appointment for mum, i just hope that if she does start taking the medicine that she wont completally change her like how my aunty was -sleeping all day .
Yeah your right thinking about what she does eat, she is quite a healthy eater. Always eating fruits and salads. I dont think she would mind eating lots of food high in calories.
Yeah its heart breaking, mum has always been one to style her own hair and make up. Go shopping for clothes and shoes.Shes always taking a real interest in her appearance. Shes completally lost interest in all of that. She now needs help dressing and putting her shoes on. We have two little westie dogs which she loves walking. However she can no longer do that, they would proberly pull her down. She doesnt have the strength anymore. One thing she does a lot lately is watch tv and films. Shes watched james bond - casino royale at least twice today Lol She has never really been a tv person.
I am really sorry that you got a positive result :(
Wow your so brave for taking the test. its gone round and round in my mind for weeks now.
At first i thought yes i will take the test because i was thinking of the future. I really would not like to bring children into this world having this cruel Hd. But i have decided that i wont be having the test done yet because i do want to have children 1 day. I would rather have children for a few years then not have my own children at all. I know it sounds selfish but i could get hit by a bus tomorrow. I cannot let Hd rule my life.
How long has your dad had Hd, Does your dad still live with you at home?
Ahh I beat you by 1 point, i got 49/50 !! xxx
hi sarah i to feel like you for the moment dont want to be tested like you say could be hit byea buss tomorrow,
mum had hd and has passed away my dad died ofcancer 1 year ago and my brother is in care with hd hiswife divorced him he has 2 kids ,
you sound like a lovely young lady who loves her mum very much and at least your very open family which is great , take mum to the gp they know tabs that will help mum get a better life you sound like a lovely family ,
welcome to your new family on thie board thereis NOTHING WE DONT TALK ABOUT love jan xxx
Jan2008 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 08:43 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA