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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 29-02-12, 04:51 AM   #1
Ryan
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Default Symptoms or?

Hey ive been told alot by my mam that im like my dad who has been diagnosed with HD hes 43 now (im 18) and he can have quite a bad temper they say its because of his HD (hes not really showing much symptoms besides finger and lip twitches now and then) but my mam thinks its because of his personality because my dad was brought up military based with quite alot of violence what im trying to get at here is ive got quite a bad temper aswell and i was wondering is that just because im taking after my dad or is it a very early HD symptom? im receiving my results in 6 days PLEASE BE NEGATIVE!
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Old 29-02-12, 11:00 AM   #2
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Default Re: Symptoms or?

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Originally Posted by jacqueline View Post
Hiya Ryan,
Temperament is what we are born with or can be nature or nurture so dont worry about that.
Good luck with your test.
I am just starting the testing journey with my 19 year old granddaughter.
What stage of testing is your granddaughter on? and thanks the days are going down slow :/
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Old 29-02-12, 11:51 AM   #3
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Default Re: Symptoms or?

Quote:
Originally Posted by Ryan View Post
Hey ive been told alot by my mam that im like my dad who has been diagnosed with HD hes 43 now (im 18) and he can have quite a bad temper they say its because of his HD (hes not really showing much symptoms besides finger and lip twitches now and then) but my mam thinks its because of his personality because my dad was brought up military based with quite alot of violence what im trying to get at here is ive got quite a bad temper aswell and i was wondering is that just because im taking after my dad or is it a very early HD symptom? im receiving my results in 6 days PLEASE BE NEGATIVE!
Everybody has it in us to be aggressive be it physically or mentally. I have the word Bi#ch tattoed o my bum (no joke that) and worked in an office but it was a very male dominated environment and I swear I ended up with more testosterone level than yer average builder I'm 4 foot 6 by the way and wasn't allowing people to treat me like an 11 year old coz of my height.

My Hubby (Steve) worked in offices but he was of such a laid back nature he was horizontal. We used to laugh that he worked in womens underwear where he was in the imports Dept for ladieswear at Burtons in Oxford Street He did have a bit of a temper on him MUCH later on in the disease when he couldn't do stuff for himself easily but I can totally understand that as I would have been a nightmare in his shoes!

What I'm getting at I think the culture your dad was brought up in, and the one you plan to enter need people who have the mental and physical strength built in them to be able to cope. HD doesn't need to be a factor. Your dad is probably very frustrated, and yes his reasoning may be compromised leading to more arguements but he's having to come to terms with HD.

You may not have HD but are stressed out with the uncertainty of the future; still in shock from the testing process, and you are bound to be comparing yourself against your dad. Your mum may be too and her way of coping with your dad could be part of that.

To get to the crunch, even if you do have the gene I think it's nurture more than nature bringing out the agression in both of you that your mum is seeing.
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Old 29-02-12, 12:31 PM   #4
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Everybody has it in us to be aggressive be it physically or mentally. I have the word Bi#ch tattoed o my bum (no joke that) and worked in an office but it was a very male dominated environment and I swear I ended up with more testosterone level than yer average builder I'm 4 foot 6 by the way and wasn't allowing people to treat me like an 11 year old coz of my height.

My Hubby (Steve) worked in offices but he was of such a laid back nature he was horizontal. We used to laugh that he worked in womens underwear where he was in the imports Dept for ladieswear at Burtons in Oxford Street He did have a bit of a temper on him MUCH later on in the disease when he couldn't do stuff for himself easily but I can totally understand that as I would have been a nightmare in his shoes!

What I'm getting at I think the culture your dad was brought up in, and the one you plan to enter need people who have the mental and physical strength built in them to be able to cope. HD doesn't need to be a factor. Your dad is probably very frustrated, and yes his reasoning may be compromised leading to more arguements but he's having to come to terms with HD.

You may not have HD but are stressed out with the uncertainty of the future; still in shock from the testing process, and you are bound to be comparing yourself against your dad. Your mum may be too and her way of coping with your dad could be part of that.

To get to the crunch, even if you do have the gene I think it's nurture more than nature bringing out the agression in both of you that your mum is seeing.
"I'm 4 foot 6 by the way and wasn't allowing people to treat me like an 11 year old coz of my height."

You remind me of my girlfriend shes 5ft 2 and a half (she likes to be exact) and she says it runs in her family to have "SMS" - Small man syndrome - another words you're a small person but you're alot stronger than most people :P im lucky to have her shes training to become a nurse at the moment shes just finishing her first year she knows about what i might have and shes done alot of research into it and shes even been taught about it at uni hopefully if she stays with me she will be a good carer if i end up having it! Steve sounded fun!!

If you dont mind me asking how would you care for your husband? because ive not actually stayed with my dad for over 10 years now i sometimes visit him but the disease hasnt really affected him with everday things such as cleaning/cooking ect

I don't know if ive mentioned but weve been together for 4 years were high school sweet hearts
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Old 29-02-12, 01:34 PM   #5
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Originally Posted by Ryan View Post
"I'm 4 foot 6 by the way and wasn't allowing people to treat me like an 11 year old coz of my height."

You remind me of my girlfriend shes 5ft 2 and a half (she likes to be exact) and she says it runs in her family to have "SMS" - Small man syndrome - another words you're a small person but you're alot stronger than most people :P im lucky to have her shes training to become a nurse at the moment shes just finishing her first year she knows about what i might have and shes done alot of research into it and shes even been taught about it at uni hopefully if she stays with me she will be a good carer if i end up having it! Steve sounded fun!!

If you dont mind me asking how would you care for your husband? because ive not actually stayed with my dad for over 10 years now i sometimes visit him but the disease hasnt really affected him with everday things such as cleaning/cooking ect

I don't know if ive mentioned but weve been together for 4 years were high school sweet hearts
Oh yesss SMS is defo in my family. My mum was 5ft 2 (got bound over once by poice where she threatened a neighbour lol) and my dad was 5 foot 1 inch and was in the Royal Navy and then Merchant Navy. Still couldn't swim to the day he died of lung cancer 1n 1985 but it's funny when there was a war on how little things like being able to swim didn't come into it. How H&S in the Forces has changed eh? If he fell in (the ship was hit too) his commrades helped him out.

How did I care for Steve? I took him on when he was still at risk and he'd already explained he might get HD. He knew he was taking on a handlful too trying to tame me lol and we worked on the basis of living the highlife while we could yet putting money by for a rainy day. We didn't have kids (too selfish having fun and we figured he might need my full attention later on).

When Steve did get to the point of the symtoms being something we could hide anymore Steve got tested. I used books and the Message Board to start my own plan of military action against the illness and was able to give up work eventiually to look after him.

On the physical side:
As your gf is a going to be a nurse, she will know where there is a will here is a way. I had a very supportive Community Matron and OT who helped me make cases to keep Steve at home with me on my own and used brains over brawn (I bought 2 manual slings and managed to lift Steve's legs enough with a hoist to be able to clean and change him in the night if need be on my own even in the last few months.) We did have one carer come in for 1.5 hours a day to help shower and dress him. Even that was arranged around his football on the teelly

On the mental side:
I managed to get a bit of respite once a week after a while (aka shopping for makeup, shoes and bags via the pub lol) and wrote and had plenty of mates in here to offload on/share good and bad things.

Two books REALLY helped me cope. Links are given below. A third book has only just been released but I wish I had read it years back. The forth book (also by Steve Smith) is actually for nurses.

Your mum would benefit from the first one I am sure; the second one one be of help to her too but your gf will find that and the one after particularly useful. I have my own book too but let's stick with the ones here first:

1) The Selfish Pig's Guide to Caring:

Hugh's wife had HD but the book is soo good The Princess Trust for Carer's endorses it for all carers.

2) Hurry up and Wait


3) The Neuro Care Manual
http://www.sendit.com/books/neuro-ca.../10341664.html

4) Huntington's Disease - A Nursing Guide

1,2,4 available from many sources but I have given the HDA Bookshop Link Below

http://hda.org.uk/shop/hd-books.html

Hope this helps
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Old 29-02-12, 06:01 PM   #6
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Default Re: Symptoms or?

Quote:
Originally Posted by jacqueline View Post
Hiya Ryan,
Friday was our first visit and we saw a councellor. Her boyfriend came too and will support her.
I know it is a long "slow days "job" because we started her dads journey in February 2008 and we didnt know until the end of July 2008.
With my grandduaghter though it is just predictive testing to see if she has the gene or not as she isnt symtomatic.
With her dad he was already sympotomatic so it was dfferent really.
Good luck Ryan.
Thats nice hes there to support her! my girlfriend wants to come along with me to find out my results im really excited/nervous and sort of scared too the nurse who took my blood said that shes never met anyone whos at risk of HD or any other disease so happy and excited about it i just told her how ive been waiting for almost 5 years for this test now its finally happening tbh if i do have HD it might change my outlook on life and make me do things i might not have been bothered about doing because i know at some point i wont be able to do a certain thing anymore maybe i should make one of them lists 30 things i want to do before i die lol i know it isnt a joking matter and alot of people have died from HD but i just look at it differently i think its because my dad used to joke alot about it with my granny when she was still able to walk she would always bump into things and drop her cup of coffee and he would call her clumsy and we would all have a laugh about it! sorry for rambling on i just like to speak and share whats on my mind
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Old 29-02-12, 06:10 PM   #7
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Default Re: Symptoms or?

I also had a predictive test 5 years ago i know i was still a bit young to show symptoms but the HD specialist told me i have no signs what so ever not even very early ones which has gave me alot of hope
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Old 29-02-12, 07:41 PM   #8
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Default Re: Symptoms or?

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Originally Posted by jacqueline View Post
Hiya Ryan,
I thought you would have had your blood taken when you had had your predictive test 5 years ago Ryan.
I know my granddaughter will be having her blood taken for her predictive test.
the nurse i was speaking to when i was getting my blood taken earlier this month asked if i remember getting tested 5 years ago when i had to walk in a straight line hold my tounge out touch my nose ect i thought that was a predictive test isnt it? or does it also mean a blood test? sorry i might of mixed things up lol
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