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Old 17-01-18, 02:02 PM   #1
Allan
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,149
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!

.
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