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 > Diet, food, equipment

Diet, food, equipment Ask questions or pass on ideas about diet, food and equipment

Reply
 
Thread Tools Display Modes
Old 22-08-10, 12:59 PM   #11
Diana
Approved Member
 
Join Date: Dec 2006
Posts: 49
Default Re: Alphabetical List of Drugs, Supplements and Therapies Relating to HD

Excellent info. Perhaps a sticky on the drugs category. Will add if I think of anything.

Diana
Diana is offline   Reply With Quote
Old 22-08-10, 03:40 PM   #12
telibeli
Approved Member
 
Join Date: Jun 2009
Location: Lincs
Posts: 483
Default Re: Alphabetical List of Drugs, Supplements and Therapies Relating to HD

Quote:
Originally Posted by Trish View Post
Looking through this Thread it occurred to me it might be worth posting up a list of medical terms and abbreviations/acronyms somewhere. We all take it for granted that we know stuff.
disease (such as slow movements and tremors) that are caused by another condition.


Abbreviations/Acronyms

AFIK
As Far as I Know

IMHO
In My Humble Opion

IYKWIM
If You Know What I Mean

WYSIWYG
What You See Is What You Get

Though I have now learned what these abbreviations mean, this is very usefull. Believe me, I know most will have no problem in doing so, I'm very slow on the uptake and it took ages for me to figure these out. If there are any more you can think of please enlighten me... I need it.
__________________
Don't wait for the storm clouds to pass, learn to dance in the rain.
telibeli is offline   Reply With Quote
Old 05-10-10, 04:08 PM   #13
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,391
Default Re: Alphabetical List of Drugs, Supplements and Therapies Relating to HD

I just wanted to share with you one of the poems I was working on when I posted an earlier post on this thread.

NOT ALL of these apply to HDps.

That said...I've been looking at the MB from time to time of late and virtually every one of these has been covered in some form or another. The symptoms have been described but the name not given.

I can't speak for others but I personally found that sad as it was I was able to cope better once I could see there was a medical term for things happenning to hubs in his change of personality and the physical side.

For a while I used to wonder if the kicks in bed etc were just blamed on HD and Hubs was pretending to sleep etc but the more I looked into Myoclonus the more found I could cope with it. Hub's Myoclonus is lessened now.

As for the 'Anhedonia'... We may have been lucky but Hubs still smiles and laughs each day and shows no sign of this aspect of HD even though the Specialist had that on his check list.

Introduction:

This poem is about the use of medical terms when referring to medical 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. The majority of the terms have been used in connection with my husband. Such is the complexity of HD.

The definitions below this poem where sourced from MedlinePlus. The majority of the terms have been used in connection with my husband. Such is the complexity of HD.

The Terminology

“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 while their meanings unfold,
It’s no wonder they use them, the sadness they hold.

‘Aspiration’ tells me though I’m 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 me to stay?
‘Bruxism’ tells me your teeth will grind more,
And whilst you do not notice, my nerves wont ignore.

‘Ataxia’ tells me your order is altered,
Explaining the speech and the steps that 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 we 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 isn’t just me,
There’s a name for this symptom within your HD.



 Alexithymia - Inability to express one's feelings.

 Anhedonia - A psychological condition characterized by inability to experience pleasure in acts which normally produce it.

 Aspiration - The taking of foreign matter into the lungs with the respiratory current.

 Ataxia - An inability to coordinate voluntary muscular movements that is symptomatic of some nervous disorders.

 Bruxism - The habit of unconsciously gritting or grinding the teeth especially in situations of stress or during sleep.

 Dysarthria - Difficulty in articulating words due to disease of the central nervous system.

 Dystonia - Rare inherited neurological disorder characterized by progressive muscular spasticity causing severe involuntary contortions especially of the trunk and limbs.

 Dysphagia - Difficulty in swallowing.

 Myoclonus - Irregular involuntary contraction of a muscle usually resulting from functional disorder of controlling motor neurons.
__________________
I tried.
Trish is offline   Reply With Quote
Old 06-05-11, 10:04 PM   #14
ladycashel
New Member
 
ladycashel's Avatar
 
Join Date: Dec 2007
Posts: 1
Default Re: Alphabetical List of Drugs, Supplements and Therapies Relating to HD

Bumping this thread for everyone who had not seen it, i think it needs to be made a sticky

I knew i had seen a thread here about different drugs etc and i wanted to check what my mum had been prescribed.

Thank you
__________________

ladycashel is offline   Reply With Quote
Old 08-05-11, 09:51 AM   #15
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,391
Default Re: Alphabetical List of Drugs, Supplements and Therapies Relating to HD

Quote:
Originally Posted by Trish View Post

This is what I gathered already over what was about the space of 6 months searching.

Name Otherwise known as/Trade name
ACR16
alimemazine
baclofen
Botox
Carbamazepine Tegretol
cipramil
Citalopram Citilipram
clonazepam Klonopin
Clozapine Clozaril
diazepam
Dimebon (NOW NOT PRESCRIBED HAVING FAILED TO PROVE EFFECTIVENESS)
DOLMATIL SULPRIDE
Epilim valproic acid
Efexor XL
fluoxetine Sarafem
haloperidol HALDOL
hydrocine tablets/patches Scopoderm TTS
Lexapro
lithium Eskalith
Lithobid
Lorazepam
memantine
Mirtazapine
nortriptyline Aventyl
Pamelor
Movical (For constipation)
Olanzapine Zyprexa
Prochlorperazine
PROTHIADEN
Prozac
Quetiapine Seroquel
Risperdone RISPERDAL
Sulpiride
temazepam
TetraBenazine TBZ
trazadone
Valium
Valproate
venlafaxine
Zispin
Zoloft sertraline
Zopicione
zuclopenthixol
Thanks LC

Hopefully Sean will pop back with an up-date of his list of what's out there being used/trialled to help

My list needs a bit of tidying up and adding to but I've annotated in red a couple of things for the meantime. Hubs was prescribed Scopoderm at my request when the dribbling became bad.

One day I will get around to grouping the names into what they are reported to be prescribed for. Any more additions would be welcome.
__________________
I tried.
Trish is offline   Reply With Quote
Old 06-03-12, 11:20 AM   #16
Ryan
Approved Member
 
Join Date: Feb 2012
Location: Scotland
Posts: 27
Send a message via MSN to Ryan
Default Re: Alphabetical List of Drugs, Supplements and Therapies Relating to HD

I take Creatine for when i workout everday so would that be good for me in the long run?
Ryan is offline   Reply With Quote
Old 06-03-12, 12:41 PM   #17
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,391
Default Re: Alphabetical List of Drugs, Supplements and Therapies Relating to HD

Quote:
Originally Posted by Ryan View Post
I take Creatine for when i workout everday so would that be good for me in the long run?
That's a good question Ryan.

Sadly it's not one that seems to have a definative answer.

Creatine, in terms of how I used it for Hubs, was a body booster where he was becomming frail. It certainly increased his muscle and I did notice he seemed to be more with it too (insofar as he seemed more alert) but I don't know if that was to do with having more confidence and being less tired where using less energy to do basic tasks than it improving the brain itself.

Studies will show if there are benefits but I think they are still ongoing.

What I have said to others, and this is just my own personal opinion, is the lack of medical guidance and the quality control only prescriptive issuing could supply, makes me wary of self medicating before it becomes a last resort as it were.

Given creatine is sodium based, and too much can have an adverse effect on the liver and kidneys, the amounts needed to make a difference for HD symptomatic people means VERY close monitoring is needed.

If, and God Forbid this is the case you do have the gene, ask the clinic about trials and take along a list of what you are using now. If you can get on the trials for new meds some will not be happy about accepting those on stuff like creatine as it might distort their readings. You might therefore have to come off creatine for a while.

That said... for all I know they may still want to look at you as a case (HD gene or no HD gene) to see if your regular creatine is a factor in beating HD? as it could very well be a bonus.
__________________
I tried.
Trish is offline   Reply With Quote
Old 26-03-12, 10:45 PM   #18
Horrors
New Member
 
Join Date: Mar 2012
Location: Malawi
Posts: 1
Send a message via ICQ to Horrors
Default see ya again

hope you will do same things again :)
Horrors is offline   Reply With Quote
Old 20-04-12, 12:30 PM   #19
Kamagrafun
New Member
 
Join Date: Apr 2012
Location: Burma
Posts: 1
Send a message via ICQ to Kamagrafun
Default nothing else

Your comments are very appreciated:)
Kamagrafun is offline   Reply With Quote
Old 21-04-12, 01:05 PM   #20
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,391
Default Re: Alphabetical List of Drugs, Supplements and Therapies Relating to HD

Quote:
Originally Posted by Horrors View Post
hope you will do same things again :)
Quote:
Originally Posted by Kamagrafun View Post
Your comments are very appreciated:)
Thanks guys.

I've noticed in Facebook and other places the use of tools like Bing Translator is making it easier for people to read information and communicate with other countries.

The information in here is based on the UK and USA Member's input but I would love to hear more about what medication and suppliments are being used in other countries.

Bing Translator
__________________
I tried.
Trish is offline   Reply With Quote
Reply

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 09:45 AM.


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

HDA