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Old 02-11-16, 07:03 PM   #1
LECS
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Default To ponder...

Just a thought who is in the wrong is it the professional who can't understand my point of view or is it me the sufferer who can't understand the professionals point of view leading to no conclusion. Avoidable if a solution that doesn't involve communicating in the usual way of speaking to one another can be found. Perhaps we should have tried paper and pen and diagrams. I jest, but as I am too upset to ever attend another clinic appointment in my case only and you can only ever refer to your own circumstances, there is no hope of things changing any time soon. And why do I need there to be a different way of communicating because it's obvious I can no longer communicate in the traditional way without a meltdown and why is that because I am HD positive. Lily
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Old 03-11-16, 01:20 AM   #2
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Default Re: To ponder...

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Originally Posted by LECS View Post
Just a thought ...
Hi Lily

I’ve got to reply to your questions and statements but I don’t know how. There’s so much of the unknown in your questions. So I’m pondering …

In hd-land it is always the “professional” who is in the wrong - not the hd-patient, the hd-client, the hd-person … or even the non-hd family member. I listen to them talking to my son and I often cringe at the unknowing naivety of it all. They just don’t get it.

From the GP [who might offer a pill],
the Social Worker [who might speak of sourcing some funding],
the Occupational Therapist [who might offer a perching stool],
the Care agency [who might, once in a while, send a qualified Carer],
to the Neurologist [who might suggest the impossible].

I’ve said it many times and I still think that the only way that any of them will ever begin to understand the hd-person as an individual is by living in the hd-person’s shoes … or travelling along parallel tracks. It’s similar to “thinking outside the box”, looking at something “from a different angle”, deconstructing a human being and the impossibility of reconstructing an hd-person, etc – trying, against all odds, to “reach” each other.

They just don’t grasp it – even those at the very top of their professions. Because my son had had an interest in graphic design and drawing, some years before his hd-diagnosis, it was strongly suggested by a professor that he should go to college and do an Art course. Why? How? When? Where?

I also think consulting or meeting rooms always display bland, negative features for appointments, interviews and meetings. Maybe the “professionals” should meet you halfway, physically, geographically and in your mindful thought processing? I often think it might be good if the “professionals” would meet my son in the park, the pub, or on the pier.

Is this too long and “draining” for you to read? Do you prefer short, to the point, questions – and answers?

Is it like 3 people trying to have a conversation: one might be Dutch, one might be Moroccan and one might be Vietnamese with not a common word between them? How do they understand each other? Not by speech - but partly by gesture, I guess.

Could you communicate in writing? Could you communicate by using technology, say an iPad? No, it’s not as easy as that, is it? Is it all dependent on the interpretation of your spoken words by the “professional”, or your interpretation of the “professional’s” words by you?

No, it’s not that either, is it? Is it that a collection of words, language, is no longer the correct vehicle for your communication? If communication could be conveyed by feelings or electrical impulses, almost like a Morse code, would that work?

… or is it just lack of empathy and social interaction by the "professional"?

Do structure, feelings and information still have a positive impact for you when you speak?
Do structure, feelings and information still have a positive impact for you when you listen?
ie output and input? Is it that you can’t grasp other points of view – from anyone?

You certainly express all your enquiries and questions to us perfectly. You respond to other messages in a very open, honest and deliberate framework – from the heart and with great warmth. It could easily be said that you are our encyclopaedia [googlily] into trying to understand how things work in a different way - and how to fully understand each other.

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Old 06-11-16, 01:11 AM   #3
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Default Re: To ponder...

Omg Allan you have it so right, spot on, why are you not in charge! I did take a letter written by myself without any input from another soul other than a read through by Gary to validate I wasn't telling anything but the truth. In that letter I wrote down everything that I could possibly think of that described how I was feeling and what I feel I can no longer do. It wasn't something that I had cribbed from the internet it was in my own words a detail account of my suffering.
I feel like you that absolutely no consideration was given by more than one professional for how difficult it must be for me to arrive at my appointment unbeknown to them I was in bits and I had indeed built a imaginary solid wall of defence up as my armour which I see makes things more difficult but I also know that with the right words, tone and mannerisms it is possible to get through my wall but they didn't do that. I had to wait sitting alongside many others who have more visible indicators that they are suffering and it starts all over for me, I know that some would say how fortunate I am that I am not experiencing what they are but are they experiencing what I am, can anyone actually say? I wouldn't wish any of it on anyone and not a day goes by that I don't feel fortunate that I can walk up the road and no one would suspect a thing but I am very unfortunate that I no longer enjoy walking up the road as I once did. When I did go in I couldn't get into the room I felt so much panic and when my carer came out to find me I eventually went in moving my chair as close to the door as I could. I was very unhappy and I was beyond talking to by this point. My letter was read and used to fill in the score sheet. I didn't want to get angry or frustrated or upset but I did, so I left the room. I think my behaviour and reaction was fairly standard for someone who wasn't understanding things as they should and my tendencies to over react and think the worst of what someone is saying fairly standard to yet the professional showed his own frustration and annoyance both visually and verbally and agreed with me leaving the room. I left more confused than ever telling myself that I need to pull myself together only to realise soon after that it's not possible and everything that I said in my letter was true and despite not being able to fit me neatly into a tick box it's irrelevant what causes what because it is how I say it is and medication may help some of it but we won't get there because the professional and I cannot communicate. I feel that I am left out in the cold. How can it be right that you can verbalise all that I did in my letter and professionals can sleep soundly at night knowing that a person who thinks like me is out there believing it's down to herself to improve not only herself but how she behaves towards others and as it is something I actually can no longer do, it won't happen. Thank you for replying Allan as always you do make a difference and I am very glad that you are here. Lily :smile
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Old 05-06-17, 01:27 PM   #4
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Default To ponder - yet again ...

.
The Inequality of LIFE - Living with Colour, Music, Sounds, Visions, Exercise, Words … and HD

I know this disease has to be analysed and described in a clinical symptomatic methodology by the medical professionals - following The Unified Huntington’s Disease Rating Scale - but I’m also keen to see it described in terms of what is possible when the horrendous list of symptoms is side-lined for a short time.

HD = problems and issues with Movement Disorder, Cognitive Decline and Emotional and Behavioural [Psychiatric] Issues.

IS THAT ALL?

Oh no, it also interferes with general health & wellbeing, common sense, waking\sleeping patterns, general and specific movement and displays increasing …

Problems with physical functioning - upper extremity
Problems with physical functioning - lower extremity
Gross motor incapacity
Fine motor incapacity
Walking\stumbling issues
Problems with applied cognition - executive functioning
Problems with applied cognition - general concerns
Food\nutrition\diet issues
Swallowing difficulties
Speech difficulties
Communication issues
Personal Hygiene negligence
Domestic chores incapacity
Multitasking incapacity
Memory issues
Spatial awareness reduction
Eye\head lack of movement\Saccades
Organisation\Planning incapacity
Perceptual distortion
Impulsive thinking
Distractibility
Lack of social awareness
Inability to participate within social roles and activities
Reduction in emotional functioning
Behavioural dys-control
Obsessive and compulsive behaviour
Lack of Initiative/Apathy
Agitation/Anxiety
Anger/Aggression
Irritability
Depression
Impersistence
Inflexibility
Poor judgment
Lack of Insight
Lack of Intuitive thought
Lack of Instinctive reaction
Dysphoria
Dysphagia
Dysphasia
Dysarthria
Dystonia
Chorea
Bradykinesia
Myoclonus
Rigidity
Psychosis
Paranoia
Perseverance
Dis-inhibition
Denial
Repetition
Repetition
Repetition …

… and a lot of individualised stuff like changes in sensory perception: vision\eyes - looking & seeing; sound\ears - listening & hearing; skin - touching & feeling; nose - sniffing & smelling; tongue - licking & tasting; brain - thinking and perceiving. Then there’s aspects of incontinence and extraordinary sweating or being cold and other supposed metabolic features.

As we all know, some symptoms and manifestations of HD are amenable to interventions. These include the adoption of a “healthy” lifestyle; taking on advice about diet; swallowing assessments and exercise therapy; the pharmaceutical treatment of depression and psychosis; home modifications; provision of aids for walking; links to supportive care networks; and the possible involvement with research projects; not forgetting animal therapy, music therapy, computer gaming and several other recreational activities.

Many of the above interventions have been discussed with my son over the past five years and he has given myself and his Support Team the “go ahead” for positive thoughts, actions and activities to be introduced - and for domestic changes to take place as and when necessary, eg recent bathroom to wet room conversion, thick drinks and soft food, etc.

This pleasing application of his “sociability” and recreational activity, plus the positive effect on his physical and mental well-being, are points that he recognises as being relevant in his limited lifestyle. It also allows the Support Team to see the benefits of their endeavours - job\career satisfaction and rewards.

He has recently taken up occasional exercising with football and catch ball in the garden and using a pedal exercise contraption indoors.

He currently learns the words to 3 or 4 songs a week via songs on Magic TV which he looks up on Youtube to get the correct lyrics and to learn at his own pace. He then sings them with his Support Workers and on the phone to family members.

Computer gaming continues to produce the extremes of positive reward and negative frustration. TV is his heaven, with all the cooking and culinary related programmes which he devours with extra relish.

His thoughts, views and any decisions he has recently made, 5 years down the line since his diagnosis [and when he was very hd-symptomatic at the age of 25] are generally workable, notwithstanding the above 50+ attempts, listed above, to destroy his young life.

Living LIFE with Colour, Music, Sounds, Visions, Exercise, Words … and Laughter!


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Old 06-06-17, 03:43 AM   #5
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Default Re: To ponder...

It also interferes with the general health and well being of "family", common sense et al - I know coz boy am I doing some daft stuff coz personally I think I am in crisis, or a lady in distresses, and it's making me ill. And is it any wonder when you face reality by reading the list of symptoms you have provided and that we just "get on with"?

It's great that your son is embracing small changes and playing footy and singing....but I bet there is a battle behind it - there sure is here and I often find I just think *** it, let it be and even I can't be bothered...do what you like. I don't think these "professionals" actually realise what life with a hd person is like, day in and day out. It is fecking tiring and draining and demoralising and soul destroying and before you know it...you are going crazy. That's how I feel. Sad, mad and totally and utterly fed up. Plus it's raining non-stop
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Old 06-06-17, 09:58 AM   #6
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Default Re: To ponder...

Quote:
Originally Posted by shiraz View Post
It also interferes with the general health and well being of "family", common sense et al - I know coz boy am I doing some daft stuff coz personally I think I am in crisis, or a lady in distresses, and it's making me ill. And is it any wonder when you face reality by reading the list of symptoms you have provided and that we just "get on with"?

It's great that your son is embracing small changes and playing footy and singing....but I bet there is a battle behind it - there sure is here and I often find I just think *** it, let it be and even I can't be bothered...do what you like. I don't think these "professionals" actually realise what life with a hd person is like, day in and day out. It is fecking tiring and draining and demoralising and soul destroying and before you know it...you are going crazy. That's how I feel. Sad, mad and totally and utterly fed up. Plus it's raining non-stop
Hi Shiraz......yep it's still raining!
It's always good to see a post that gives something a bit more positive....... as Allan's post above does, while sharing news of his son's new endeavours..... but, you're right it would have been hard work along the way to probably reach that degree of involvement! So, I understand your frustration too and the feeling of 'why bother'.....'why care '! Damned hard work daily....so, I m sorry you're feeling so understandably down with it all. Other posts recently echoing your thoughts from others, totally drained and fed up and worn out....and yet, still like you, taking the time to try and offer support to others on the MB
I well remember some of your posts from way back when.......your humour helping to lift our spirits on the MB and was ever grateful for that!

I hope the sun comes out for you soon!

Best wishes
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Old 06-06-17, 11:12 AM   #7
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Default Re: To ponder ... on the beaches

Quote:
Originally Posted by shiraz View Post
It also interferes with the general health and well being of "family", common sense et al - I know coz boy am I doing some daft stuff coz personally I think I am in crisis, or a lady in distresses, and it's making me ill.

....but I bet there is a battle behind it - there sure is here

Blood, Toil, Tears and Sweat here, Shiraz, on a daily basis ... it used to be impossibly difficult but now that he has the “common sense” team on his side, persuasion is easier and his life is “more complete and pleasurable" even though he is surrounded on all sides by the barbed wire enclosure of hd. We’ve dug a tunnel, though, so he can escape his confines now and again!

The in-out ramp for his electric wheelchair has recently arrived and we thought that might enable\encourage him to get out today into the fresh air and summer warmth - but it’s like the middle of winter here.

“In this crisis I hope I may be pardoned if I do not address you all at any length today, and I hope that any of my friends and colleagues or former colleagues who are affected by the political reconstruction [on Thursday - hopefully] will make all allowances for any lack of ceremony with which it has been necessary to act. I would say to you as I said to others who have joined this message board, I have nothing to offer but blood, toil, tears and sweat.

We have before us an ordeal of the most grievous kind. We have before us many, many years of struggle and of suffering. You ask, what is our policy? I say it is to wage war by words, emails and social media with all our might and with all the strength [God] has given us, and to wage war against a monstrous tyranny never surpassed in the dark and lamentable catalogue of human disease. That is my policy. You ask, what is your aim? I can answer in one word: Victory; Victory at all costs; Victory in spite of all terror; Victory, however long and hard the journey may be, for without Victory there is no survival. Let that be realised. No survival for the hd-individual, minimal survival for the hd-family, no survival for the urge and impulse of the ages, that mankind will move forward toward his goal. But I continue my task in buoyancy* and hope. I feel sure that our cause will not be suffered to fail among the scientific and medical professions. At this time I feel entitled to claim the aid of all and I say, "Come then, let us go forward together with our united strength."

This Churchillian speech is very meaningful today in respect of global and national need. And along the oft-trodden path at individual and family level, no matter what the issue or problem may be, we will succeed.

*I was going to include “flippancy” - but that was to hide my pain, anguish, torment, anger, tears of rage ...

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Last edited by Allan; 06-06-17 at 11:14 AM. Reason: pondering ...
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Old 07-06-17, 10:06 AM   #8
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Default Re: To ponder...

We shall fight them on the beaches and we shall never be defeated....
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