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Sunday, 11 November 2012

My Mum...

My Mum has Huntington's Disease. This is a genetic illness and it is hereditary.  Basically it causes damage to the nerve cells in the brain. As the damage progresses, HD reduces people’s ability to walk, talk, think and communicate. Symptoms include uncontrolled movements, changes in mood and behaviour and altered thought processes. Eventually individuals with HD become unable to look after themselves and need full-time care.  If an individual has one parent with the HD gene, he or she has a 50/50 chance of inheriting the gene and developing HD themselves.

HD comes from my Grandfather's side of the family.  He had it and so did one of his sisters.  The other sister did not inherit the HD gene.  HD does not skip generations.  This basically means that my sister's children are not at risk of the Disease if she does not develop it.  My sister and I could both get it - or neither of us could get it.

Like any other hereditary illness, the speed at which symptoms develop can vary wildly.  Some people can start displaying symptoms in their 30s.  Others don't see anything until their 50s.  We are lucky that our 'version' doesn't really manifest itself until people are in their late 50s.  After that, it follows the standard pattern of deterioration.

I am so proud of my Mum.  She has fought the symptoms and forced herself to keep going.  She tackled each stage of her deterioration and found a way round it - until now.  Today she and Dad called in for lunch after church.  After we'd eaten Dad and Mark went off to do a job and she just sobbed in my arms because she's so frustrated.

She walks badly and is exhausted by her own body as it jumps around.  The constant movement is putting pressure on her joints and muscles and she's in a fairly constant pain.  The involuntary muscles movements can also choke her when she's eating.  There are certain foods that she no longer eats or wouldn't tackle in public.  We understand her speech - but she's having greater problems communicating with people who are not used to it.  She was 69 at the beginning of September.

She nursed her Dad through the illness and knows exactly what's going to happen next.  We don't save things until tomorrow anymore.  Hopefully this recent period of deterioration will stabilise soon.  This will give Mum time to work out new ways of living round these lastest inconveniences.  She's a very brave woman.

Nevertheless I can't begin to describe how hard it is to be part of a family with HD.  Fortunately I'm close to my sister and we support each other.  Sorry that this is another gloomy post.  It's just that Mum's tears today have really unsettled me.  As you've probably guessed we are normally a 'get on with it and cope' family!

Welcome to Sandra and Sonny. I've tried to find your blogs so that I can follow you too - but I can't seem to find any links.  I'l try again in a couple of days.

15 comments:

  1. My parents GP was a specialist in HD back in the 1970's and that was when I first became aware of it.
    With all the hassle going on at work, this change in her condition must be especially hard for you.
    But you are part of a brave family, and it is good to know you are supporting each other thru this time.

    You are all in my thoughts and prayers. Blessings and hugs xx

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  2. Hi Jan this is a very moving post. It is an illness I didnt know much about and I cant begin to imagine how you must all feel. I expect one day they will be able to do something about the hereditary thing with genetic engineering but that doesnt help your mum. I bet its almost as bad for you watching her frustration and seeing her deteriorate. I am please d you have a sister who is going through it with you and who you can confide in. Love, Anne

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  3. We have an acquaintence with HD. Her husband passed away recently and we wondered how she could cope without him. She lives alone and follows suggestions from her kids as how to do things. She eats meals with them and they take her to appts. and other places that she needs to go.She wants to be as independent as sge cab,,, and this is how they are working it. She's had the disease for several years and we worry about her safety. She lives like she wants to...doesn't want to be in a nursing facility. I know that somewhere down the road she will have to do this, but hopefully not right now.
    Having a sister must be a comfort for you. Take care, Balisha

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  4. No need to apologise- 'Sharing good times, being there in the bad times'
    Thinking of you all. Much love. x

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  5. Hello Jan
    So hard to see your mother like that....I know. It must be painful! How courageous she is and you and your family. Like Scarlet says don't apologise its not about sharing the fun fun times always we've got to be here for the down times too.
    Thank you for sharing with us and I sincerely wish every comment you receive brings you a little more comfort.

    Amanda :-)

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  6. I think brave runs in your family and I admire that very much.

    I will send healing energy your way and if there is anything at all I can ever do to help, I hope contact me.Even if its just to talk-rant or say things you cant say to your loved ones or friends in real life. all I can offer is my promise to Forget whatever you say as soon as you've said it. as a stranger thats the gift I offer and am willing to give..

    many of us will be Here for you through this in whatever capasity we can. You arent along..
    you can copy my email address and paste it into an email ..
    dont type it- it wont go thru:)

    l55dreamlane@aol.com

    my blog address is::
    155dreamlaneblogspot.com

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  7. Oh Dear Jan, I'm so sorry you have to go through this. It must be very hard on you to watch your mum deteriorate in such a way. Mums are so precious aren't they? You may vent here all you like ... we're all here to listen and help in whatever way we can. Lots of big bear hugs Sue

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  8. Dear Jan, I know how hard it is to watch a parent falter. You and your family are in my thoughts and prayers. Bonnie

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  9. Dear Jan, I can see in your words, that you are also very brave and I'm sure you are giving her what she exactly need your love your hand even your tears It must be hard but there you are to accompany her, you are a family, she is not alone suffering , there are lots of people who has not a family on her side and she has all of you, my prayers from Spain. Marina

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    Replies
    1. May you give her a kiss that I send her??

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  10. It must be really hard for your mum to cope when she knows exactly what lies ahead for her. It's an awful thing to see a much loved parent deteriorating from an active, capable person to someone who is becoming more and more dependent on other people. My mum had senile dementia so I have some idea of what you are going through. At least I don't have the spectre of a similar fate hanging over me as you and your sister do. Your mum is only three years older than I am and reading about her illness makes me so grateful that so far I remain fit and well.

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  11. Hello Jan....your post has touched my heart. I am so sorry for what you and your mother are experiencing. As you know, I lost my mother a couple of months ago. My prayers are with you....

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  12. I'm lost for words, Jan! What a cruel disease this is that you and your family have to deal with every day. Your mother sounds like such a strong and brave lady and having all the support she has must be of great comfort to her.

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  13. What a moving post, Jan, it's brought tears to my eyes. I'm so sorry that you're all going through this. What a brave, but loving family you are, supporting each other the way you are. The trouble with diseases such as this is that it affects the whole family, so don't forget that you need support just as much as your mum. I truly hope that your mum can find a way to deal with the extra problems that this latest period of deterioration brings. Sending lots of hugs. xx

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  14. Am so sorry to read what you and your family are going through... ((((hugs))))

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