Huntington's desease

[Sezzzzzzzzz]

Hi everyone,

I grew up knowing that my Grandma had huntington's, but have now found out that my mother has tested positive for it as well (5yrs ago!!! she didnt tell me as i she doesnt want people fussing over her and changing how they treat her and i would have also been pregnant with tilly and aI always said if there was a chance that i had it i wouldnt have kids).

I know this means there is a 50% chance i will have it, bvut i was wondering if there is anyone else on here that has any experience with this disease?

I have no one else to talk to about it as Mum doesn't want anyone in the family to know about it, and I have to respect her wishes.

Thanks

Sarah

 

[Bec]

Hi Sarah. I think everyone has different experiences with it. My great uncle's family have it. My great aunt had it very bad (she would come at people to attack them with knifes) without even knowing she was doing it. All there kids have it one of them the female doesn't have it the same way as the boys do and sadly there the same as there mother. There 42years old and are both in nursing homes because there father just couldn't keep up to the care of them. Jane the girl is fine with it she is married with 3 kids (she only found out 4 years ago) she had it. Every month we go and see the boys in the nursing home. It's quiet sad some of the things that you see. Good luck and I hope someone else can be of more help then me.
Regards
Bec.

 

[Snapped]

I don't have any first hand experience with it, but have you considered genetic testing?


Huntington's disease | Better Health Channel

 

[Sezzzzzzzzz]

my grandma is just a shell, she has no control of movement or speech, but yet you can see in her eyes she is still alert. our family seem to not have violent episodes, just the muscle deterioration, unless of course, its just that i am unaware of any times my grandma lost it.

Snapped, i refuse to live my life waiting for the day the symptoms appear, which is what i fear about the testing. This is what Mum did (only cos she was positive she was negative) and she deeply regrets it. Even with the test there is nothing the doctors can do to help anyway.

My mum is 54, 55 this year, and my grandma started showing symptoms in her early 60's. Mum has already stated she doesnt want to be a burden on me and my family, but how can i not care for the woman that brought me into this world and has looked after me since, even when i was a burden?

i have spent the last week in tears at the thought of my mum becoming an empty shell. The only thing that keeps resonating is that I must live my life to the full before i have to nurse her (no matter what her wishes, she cant get rid of me that easily!!!) or before i have this horrid disease as well.

 

[Darlyn]

Hey Sezz, back in the day when I was a nurse I looked after a lady with Huntington's disease. It is
something that I have never forgotten. It is one of the cruelest diseases around. As much as you want to care for your Mum
I think you will find at some stage it is beyond your capability and she will need to be looked after professionally. Obviously dependent on how the disease effects her. Good luck with everything.

 

[Sezzzzzzzzz]

i know lynne. its a horrible disease. we have talked about it and by caring i mean cleaning cooking picking her up etc, not the bathing wiping etc side of it. her wishes are to have a home carer.

my biggest problem is the distance, she is over 1000km's away, so obviously one of us will have to move (once dad goes anyway, which i dont think will be too far off considering his age- 84 with chronic asthma and heart issues.)

 

[Bluetongue1]

Mum had Parkinson’s disease (without the tremors), also a progressively degenerative neurological disorder.

A parent’s wish is to be loved by their children but also to see their children successfully lead their own lives.

We only get to live life one day at a time. Hopefully we learn from the past. Wisely we should bear the future in mind. But we need to live in the here and now of each day for that is all there ever is and all there ever shall be. Don’t squander it on what is not yet, for when the time comes you will do that which you have to do. As the wise old goes: “cross that bridge when you come to it”.

It is natural and healthy to be extremely upset by such news. However, it is not healthy to dwell on the probable future and be upset by that. This is what your mother was helping you avoid by not telling you. Acceptance of the reality is never easy and it does take time. Once you get there, however, you can get on with living your life and being supportive, as required, to all your family.

In the meantime, I know your doing it tough. Which is why I shall be thinking of you…

Mike

 

[Sezzzzzzzzz]

Mum had Parkinson’s disease (without the tremors), also a progressively degenerative neurological disorder.

A parent’s wish is to be loved by their children but also to see their children successfully lead their own lives.

We only get to live life one day at a time. Hopefully we learn from the past. Wisely we should bear the future in mind. But we need to live in the here and now of each day for that is all there ever is and all there ever shall be. Don’t squander it on what is not yet, for when the time comes you will do that which you have to do. As the wise old goes: “cross that bridge when you come to it”.

It is natural and healthy to be extremely upset by such news. However, it is not healthy to dwell on the probable future and be upset by that. This is what your mother was helping you avoid by not telling you. Acceptance of the reality is never easy and it does take time. Once you get there, however, you can get on with living your life and being supportive, as required, to all your family.

In the meantime, I know your doing it tough. Which is why I shall be thinking of you…

Mike

i know blue, and thank you for your kind words. i will deal with it and get on with life, just at this point in time, my heart is broken.

xx

 

[sharky]

I'm so sorry to hear Sezzz :cry: I can't give any advice on the topic but I am so very sorry to hear I hope you feel better soon xx

 

[Sezzzzzzzzz]

i will sharky, as much as i wanna pull the doona over my head and hide, its not in my character.

All i can do is make the most of my life and make my mum proud

 

[spongebob]

There are support services available. The NSW headquarters of Huntingtons Australia is just round the corner from me. There was a young persons forum last weekend in Narara. You are going through a stressful time and it may help to seek the help of others in your situation. All the best. Bob

Huntington's NSW

 

[Sezzzzzzzzz]

thank you so much bob!!! i didnt even know there was a huntington's australia, to be honest, im a bit scared of looking for too much info.

 

[paultheo]

I hope that you feel better soon, but the most important thing imo is to be there for your mum when she needs you, as she was for you. Family is important. When you look back on this time at least you will be able to say to yourself that you did all you could...

 

[spongebob]

I can understand that but these people should be able to understand even more

 

[Sezzzzzzzzz]

I hope that you feel better soon, but the most important thing imo is to be there for your mum when she needs you, as she was for you. Family is important. When you look back on this time at least you will be able to say to yourself that you did all you could...

that explains how i feel totally. there is alot i want to say while i know she can understand.

bob, i will definitely get in touch with them.