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Old 28-06-18, 11:04 PM   #1
nov50
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Join Date: Jun 2018
Location: London
Posts: 2
Default Hello, and my reasons for joining

Hello everyone
Thanks for letting me join this group.

I recently did a couple of weeks manual work for someone who is caring for a relative with Huntington's Disease.

Many issues have been raised during the course of my involvement with this family, and I feel a strong need to become better informed about the issues that have arisen. I hope this is a valid enough reason for joining.
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Old 29-06-18, 10:52 AM   #2
banda
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Join Date: Apr 2014
Location: Consett, County Durham
Posts: 480
Default Re: Hello, and my reasons for joining

Hi welcome on board this rotten ship! However we are a vibrant (mostly) community and certainly helpful and supportive. There is lots of really good advice about all manner of topics - you just need to search or indeed ask away. You are welcome to join and to try to help and support the family you work for as much as possible.
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Old 29-06-18, 01:40 PM   #3
Trish
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Location: England
Posts: 2,391
Default Re: Hello, and my reasons for joining

Quote:
Originally Posted by nov50 View Post
Hello everyone
Thanks for letting me join this group.

I recently did a couple of weeks manual work for someone who is caring for a relative with Huntington's Disease.

Many issues have been raised during the course of my involvement with this family, and I feel a strong need to become better informed about the issues that have arisen. I hope this is a valid enough reason for joining.
Hi Nov

Welcome to Messy Board. It's us that should be thanking you for showing an interest/joining. Especially as it seems your interest is sparked not out of being forced by nature of having the gene in the family but by wanting to be better informed.

As Banda says, there's a lot of information already deposited in here and using the Search facility is a good way of pinpointing others' experiences and useful resources.

Asking away is also a great staring point. Each Member's experience is unique but there are a LOT of commonalities. The Board can be a bit quiet at times so apologies if you do not get an immediate response but generally someone is popping in to have a nosey etc.
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Last edited by Trish; 29-06-18 at 01:41 PM. Reason: My spellling is getting wurse
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Old 29-06-18, 07:25 PM   #4
nov50
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Join Date: Jun 2018
Location: London
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Default Re: Hello, and my reasons for joining

Hi Trish and Banda
Thanks so much for your warm and encouraging welcome.
I feel privileged to have access to this online community and hope my questions and observations don't seem inappropriate or clumsy: the family I'm involved with very much want me to be better informed, but communicating with their primary carer can get very emotional, and it's easy to say the wrong thing!

For example, yesterday I received a long, despairing text from the primary carer, because the relative with the most advanced Huntington's symptoms had apparently lost an important element in our ongoing project, and HD was blamed for this. However, a part of me is thinking: we all loose things from time to time- is it fair to blame the HD sufferer's illness?
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Old 03-07-18, 12:47 AM   #5
elessi
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Join Date: Feb 2017
Location: Cornwall
Posts: 27
Default Re: Hello, and my reasons for joining

losing things is psrt of huntington's disease from where i am, hubby has been diagnosed for3 years, he often loses things because he forgets where he has put them and which safe place they are in. it often causes meltdowns and arguments as i get accused of stealing his things. he can be very irrational most times he seems ok on the surface but then something as simple as our kids who are young having an argument triggers a moodswing then everything goes wrong. losing things mskrs him panic then he can't get calm. small things lead to explosions you get a grown man with a childs temper tantrum and no ability to self calm. its hard to desl with. its great that you have taken time to ask questions, so many people assume things and dont ask.
my husband has a poor memory, doesnt always remember to eat, wash, change but still enjoys diy and is capable of things but at the same time he has no filter if he thinks it it comes out of his mouth. we still have god days but you walk on eggshells.
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Old 03-07-18, 11:21 PM   #6
Trish
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Posts: 2,391
Default Re: Hello, and my reasons for joining

Quote:
Originally Posted by nov50 View Post
Hi Trish and Banda
Thanks so much for your warm and encouraging welcome.
I feel privileged to have access to this online community and hope my questions and observations don't seem inappropriate or clumsy: the family I'm involved with very much want me to be better informed, but communicating with their primary carer can get very emotional, and it's easy to say the wrong thing!

For example, yesterday I received a long, despairing text from the primary carer, because the relative with the most advanced Huntington's symptoms had apparently lost an important element in our ongoing project, and HD was blamed for this. However, a part of me is thinking: we all loose things from time to time- is it fair to blame the HD sufferer's illness?
From reading what you have written you raise a very interesting and important question/observation.

First of all, I am assuming the primary carer does not have the gene, is a relative, and has been a carer for some time. There's no need to answer that bit as I am answering based on my assumptions and having been a carer to my late hubby so that's where I am coming from.

Memory problems; poor cognitive issues; lack of structured thinking, lack of empathy (I mention that last one as maybe the person genuinely cannot comprehend why the 'important element' should be such a big issue/have cause for making the carer sad) etc are all symptoms that can be part of HD.

It could therefore be argued that it was HD to blame. However, there also appears to me if I am reading between lines here that it could be a case of the carer not coping so well, and their frustrations etc in not being able to cope/embarrassed about what is being exposed are being transferred onto blaming the loved one with HD and their illness. The 'long despairing text' perhaps being over the top and their overthinking things. It's been 7 years since I lost hubby. Trust me... I have had a lot of time to think about how much was HD; how much was not HD and how much was my being an 'enabler' and making things worse?

If you haven't already picked up from this place that I do poetry, there's a poem below and also part of a description of another poem straight below where I admit I was needing to rethink the way I was seeing him and the issues where so tired myself. In essence, it's hard to say if HD was to blame for the problem. But you are right to query the fairness of blaming HD.

My poem - The Terminology is reproduced in full. There are a lot more that come to mind but I think you get my point and I hope they help a bit rather than open up more questions. Apologies also if I have misinterpreted your query. I can do inappropriate and clumsy probably better than anyone else

Quote:
The Check-ups

Introduction

By the time my husband needed medication and dietary intervention, to help cope with the changes taking place in him, our communication was becoming more difficult. I use the word ‘our’ as opposed to ‘his’ as communication is always a two way thing.

My husband may have found it harder to express himself due to physical; Cognitive; and emotional problems, but I also found it harder to listen due to my own tiredness and confusing the signals being given by him. Couple with that my need to adapt my ways of talking; listening; intuitively knowing things, and also change habits of a lifetime (talking fast/doing everything at 100 miles per hour – ...’).
Quote:
The Terminology

Introduction

This poem is about the use of medical terms when referring to symptoms of the disease.

Shortly after my husband was diagnosed, we were sent a copy of a letter to his doctor which was written by his Neurologist. It contained the word ‘anhedonia’. I had to look the word up and it made sad reading as it brought it home to me that, whilst my husband was still showing signs of recognising ‘pleasure’, it could be that he would lose even that most basic form of human awareness.

Because of the complexity of the disease, the chances are that many will come across words used in the description of symptoms that are not easily recognised. The majority of the terms given below were used in connection with my husband. I personally found it useful to look into the meanings of the words to try helping me get a handle on where those making assumptions about my husband were coming from.


“It’s all Greek to me!” Is the phrase in my head,
As the words on the paper begin to be read.
Is it Greek, is it Latin? I haven’t a clue,
But it sounds quite impressive how they describe you.

So I turn on computer and search on a word;
Oh why is the spelling of these so absurd?
And then one by one, as their meanings unfold,
It’s no wonder they use them, the sadness they hold.

‘Aspiration’, tells me though happy you’re fed,
The nutrition is aiming for your lungs instead.
‘Dysphagia’, tells me the food that I give,
Is making you choke more than helping you live.

‘Dysarthria’, tells me your mouth will not say,
What you want me to do; do you want it this way?
‘Bruxism’, tells me your teeth will grind more,
And whilst you do not notice, my nerves can’t ignore.

‘Ataxia’, tells me your order is altered,
Explaining the speech and the steps, which are faltered.
‘Dystonia’, tells I straighten in vain,
The stiff limbs contorting, contracting again.

‘Alexithymia’, tells me your feelings are dead,
Or you cannot express them as words can’t be said.
‘Anhedonia’, tells me you cannot feel pleasure,
Devoid of the feelings you once used to treasure.

‘Myoclonus’, tells me the thrashing in bed,
And the knee in my back, and the punch in the head;
It’s not that you mean it; it’s not aimed at me,
There’s a name for this symptom within your HD.
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