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

Thread Tools Display Modes
Old 17-01-18, 02:02 PM   #1
Approved Member
Allan's Avatar
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,155
Default The Road to Hell - and part-way back …


I wrote this a while ago:

If you ever think that he is being rude or unfair to you in the things that he might say, it’s not him speaking, it’s the disease. As you have all been aware, his situation has worsened over time, and inside his head it is a living hell because he can’t do what he wants with his life. His neurons are dying and the synapses are wildly out of control. I think, in recent times, he has settled for what he can do effectively.

Although I wasn’t generally aware of this, around 2008-10, he was losing his friends and I couldn’t figure out why - until one day I was at his flat and he was distressed about something to do with one of his mates. He phoned the police with a load of gobbledygook nonsense about his friend - and then I suddenly realised what was happening … as he was also “dissing” his sister about some minor domestic issue. So, his many friends began dropping off, one by one, from ten years ago

I’ve a feeling that I’m gonna be shot down in flames any moment now as my only HD experience is with Young Onset HD.

So, voices off: What you’ve got to do with HD youngsters is to change “helpless and hopeless” into “helplessness and hopelessness” on the way out - and then coming back to “helpful and hopeful”, and finally into “help and hope”. I know it sounds silly but it sort of works and it means “to hell and back” - coz that’s where I’ve been.

We all know that managing and caring for an HD person is a huge DIY project - and if you don’t get it right after a few attempts then it could all collapse around you and you’ll be in an almighty mess. So you’ve got to find the correct lifestyle plan and 3-D structure early on - the scaffolding and the target. Be prepared for all sorts of Psychological and Psychiatric issues; Cognitive destruction and increasing Movement and Motor disablement.

I decided at the outset to call it “Logical Tricks” as in psychological and psychiatric:
  • how to cope with him;
  • how to put myself in his shoes;
  • how to talk to him (as an equal);
  • how to get through to him;
  • how to be persuasive with him;
  • how to deal with his antisocial habits and antics;
  • how to (get him to) resolve his financial issues;
  • how to become as hyper-manic-agitated-frantic-and-weird as he often was (not difficult, I know);
  • how to get him to react in a non-negative way;
  • how to get him to respond in a positive way;
  • how to help him - short-term, medium-term and in the longer-term;
  • how (at times) to walk away …
When we were all children one of our roles\functions was to reflect well upon our parents - and we all probably made a good job of it when we were kids. That’s how it generally was 50-60 years or so ago. After that … who knows?

It’s said that every time a negative family situation occurs, or a friend has a crisis, a small part of you dies. A few years ago I saw the opposite in my son’s expression when he learned of someone else’s mishap or downfall. There was a malicious and spiteful trait emerging. For a while I thought I was imagining it, but then it became impossible to miss. I could see it in his eyes, a wicked twinkle along with his “stroppy smile” which greeted my news. I also saw the opposite reaction on his face whenever I told him of someone’s latest success or progress. He would fabricate a dour, incriminating, negative story (occasionally for the police).

Then there were the other transgressions: objects thrown violently at walls or to the floor; his screaming tirades and histrionic rants; the total loss of physical and mental self-control; to such an extent that under any other (external) circumstances he would have been sedated, arrested - or sent to bed without his supper! Fits of unexplainable rage within the confines of a room - or deeper within his enclosed mind.

What I’m saying is that YOU have to change YOUR mind-set to theirs - you can’t be “YOU” all the time. If you work at it there comes a time when you can agree to disagree about almost anything. It’s probably a difficult task to change or delete the obsessive and compulsive behaviours - but you can add others in which will dilute the heavy duty concerns.

Back to the future: So does a “vain imitation” of parenthood create the perfect environment in which to nurture a person with innate but unknown Young-Onset HD? I guess that’s for you to judge. But this much I know for sure: it was what made me determined that I wouldn’t be seeking fulfilment in his life from some know-all or know-nothing doctor or “trick cyclist”. It’s certainly a lifetime DIY project in which he has had some considerable input and a little positive output - to date.

It’s a medical nightmare of a jungle out there! So if you want to improve relationships with young HD people, do more than embrace the changes - learn how they evolve. We live in unsettled times regarding neurodegenerative diseases and pharmaceutical research therapies. Many aspects of clinical research have failed to come up with positive results. So we have to discover new, ongoing solutions ourselves within the family Care environment. Music, animal, computer gaming, brain exercise, physical exercise therapies, etc. are the positive 3-D constructs to a better future for young people with HD.

Compassion\empathy fatigue: moving on, everything we have achieved together, each forward step we have taken, hurts just a little less - and it should be seen as progress. But there was many a time when he regressed two months in a day. So, we’ve taken our first steps along the hd-path. We’ve done something that challenged us to think differently (out of my mind and into his - and vice-versa). The path to re-discovery, though, is just that - a path. The opportunity to get inside his head was to discard what I thought I knew and, instead, to learn what I need to learn … every single day, every step of the way.

This, of course, is an ongoing team job we’re talking about here. Say it as you see it - see if shift happens.

Rock on!

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 24-01-18, 12:22 AM   #2
Approved Member
Join Date: Feb 2008
Posts: 50
Default Re: The Road to Hell - and part-way back …

Hiya Allan,
I have read all the way through it tbh.
I agree with all you say.

But its like anything in life. Even with HD everyone is so different.
In ten years since HD entered my door I have learned about HD but in my family where it is rife everyone is so so different even though empathy doesn't seem to exist.

If I had just one person on one path I am sure I could handle it with a much better look at that person. But I am sure that everyone thinks that sometimes even with just one path with one person they have to follow.

I do know that I have tried so hard to try and get inside my loved ones mind and understand how he feels. But I find that the only way to change their mood is to totally change tack and move away from the subject. Almost like going into another room with them but in their mind.

Jimmy Pollard says that people with HD have a mask. I have seen what you say about giving our loved ones news of different kinds and it seems that they seem to look at it without much compassion or empathy.

I told my son four years ago that his granddad had died. Now he was so close to his granddad I was worried how he would react with my son being in residential. He just said "oh" and carried on talking.
I was confused. But in a very short time he had to run to the toilet and was very sick. When he came out of the toilet he just carried on. So his HD mind blanked it but his heart couldn't.

The same thing happened a few weeks ago when his dad died. He looked as though I hadn't said anything to him. BUT he did look sad and looked down. Then it was as though his dad hadn't died and he carried on talking.
jacqueline is offline   Reply With Quote

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 02:24 PM.

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