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Old 20-07-17, 08:32 PM   #1
banda
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Default Loss of speech

Hello friends,
sadly I lost my Dad, his funeral was 29th June, but now feel as though I'm losing hubby who has HD. His speech has deteriorated so much that he now says very little and at the weekend he couldn't actually verbalise at all although he was trying. I have phoned the local HD team who work with the consultant and we have been to the GP....just grasping at straws as to what if anything I can do to help or to prolong his ability to communicate verbally. It is so distressing for us both.
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Old 20-07-17, 11:04 PM   #2
Allan
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Default Re: Loss of speech

.
Hi banda
I’ve got loads of folders and a large number of relevant files that I adapt for personal use - mainly docs and pdf’s. This is the Speech pattern that we’re following at present:

Talking, Gossiping, Nattering and having a Chit-Chat …


His communication problems can include:
  1. Slurred, imprecise and slow speech
  2. Low volume and weak voice.
  3. Difficulty with resonance and pitch control.
  4. Abnormally long pauses between words or syllables of words - this is called “scanned speech”.
  5. Dysarthria, in which the capability to understand, remember words and construct sentences is not lost - but the ability to speak clearly becomes affected.
  6. Aphasia, in which there is a lack of understanding of what is being said and an inability to recall the words, vocabulary and grammar necessary to build a sentence and the annoyance of losing a word or thought in mid-sentence.
He already uses various techniques such as his tongue exercises and “voice training” in his regular singing sessions. The aim is to try and maintain his vocal skills and adopt compensatory strategies to manage his speech.

HD Effects On Speech
There’s over 100 muscles used to create speech, meaning that HD has a severe impact on a person's ability to communicate even from a purely physical standpoint, although speech is affected in two ways.

The first is Dysarthria, which describes when the brain sends out signals but the muscles are too weak or uncontrollable to react properly, resulting in slurred, unclear speech.

The second is Apraxia, where the damage dealt directly to the brain limits its abilities to send out the signals at all. Other consequences can include difficulty breathing and speaking at the same time, difficulty finding the desired words, and difficulty controlling the speed and volume of speech.

Dysphagia, or difficulty swallowing, is another HD issue. This can have very negative consequences, as people tend to eat less, which makes their muscles weaken and causes the disease to progress faster.

Why Managing Speech Problems is so important
  • Social status
  • Emotional status
  • Psychological status
  • Physical status
  • Caregiver status - emotional and psychological
What can you do to help someone with Huntington's disease to communicate?

We have a 2 x 10 point chart for family members and others who can help by encouraging the hd-person to:
  1. speak more slowly;
  2. say one word at a time;
  3. repeat the word or sentence when necessary;
  4. rephrase the sentence;
  5. exaggerate the sounds;
  6. speak louder [taking a deep breath before speaking];
  7. describe what he is trying to say if he can't think of the word or indicate the first letter of the word;
  8. use gestures;
  9. keep sentences short;
  10. use alternative techniques, such as word boards, alphabet boards, picture boards, or electronic devices.
The following are some suggestions for the listener:
  1. eliminate distractions [TV, radio, groups of people];
  2. stand or sit directly in front of the hd-person ie gain visual attention;
  3. keep questions/statements simple;
  4. ask one question at a time;
  5. use yes/no question format as much as possible;
  6. pay attention to gestures and facial expressions/changes;
  7. if you do not understand what is being said, don't pretend that you do; ask for clarification or repeat what you think was said in the form of a question, such as, "Did you say ... ?"
  8. encourage the speaker to use his/her specific compensatory strategies;
  9. allow enough time for the person to convey his/her message;
  10. most important, be patient with the speaker.
Practice Sessions
  • Breathing
  • Lip movements
  • Tongue exercises
  • Voice
    - Pitch
    - Loudness
    - Cough on command
    - Prolonged vowel - quality, length, control
  • Relearn the alphabet with deliberate sounds for each letter - then move on to short words.

Then take a well-earned break and have a long drink! I should say that it doesn't always work for us but we can huff-and-puff our way through it and when it does work - it's smiles all around.

I hope it helps a little ...

.
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Old 21-07-17, 07:33 AM   #3
banda
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Default Re: Loss of speech

Thanks Alan...the practice sessions will be something very different for us both but need to try . We do most of the other bits on listening and talking.
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Old 27-07-17, 12:42 PM   #4
Gabby
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Default Re: Loss of speech

[QUOTE=banda;65182]Hello friends,
sadly I lost my Dad, his funeral was 29th June, but now feel as though I'm losing hubby who has HD. His speech has deteriorated so much that he now says very little and at the weekend he couldn't actually verbalise at all although he was trying. I have phoned the local HD team who work with the consultant and we have been to the GP....just grasping at straws as to what if anything I can do to help or to prolong his ability to communicate verbally. It is so distressing for us both.[/QUO

Just want to say so sorry for the loss of your dad .
Can't add any to the speech thing Allan has covered it i think but so hard for you hope it does help sometime we are very lonely :(
Take care
Gabby
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Old 27-07-17, 08:55 PM   #5
Dolphin
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Default Re: Loss of speech

Hi

I am very sorry to hear about your dad. It must be a very difficult time for you.

It may be that there is extra emotion around so tightening up muscles more than usual - sounds a very comprehensive list of exercises from Allan to try out. We did think that the speech and language therapist visits were very useful - even down to her watching my mum drinking and making sure thickners were the right consistency for her various cups/beakers.

From my mum's experience - she had more energy in the morning - so that was a better time to have a conversation. She definitely needed to focus on one thing at a time - eating for example - rather than being able to converse at the dinner table.

After my dad had to go into hospital and my sisters and I plus numerous carers were looking after her - she said a lot more things - in answer to questions - we really had thought that she couldn't speak hardly at all. I guess we all had news that she wanted to find out more about.

Before then whilst she couldn't have strung a sentence together she could still sing songs she knew very well. So there's something in this singing.

Hope you find the help you need

Dolphin
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Old 28-07-17, 07:18 AM   #6
banda
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Default Re: Loss of speech

Thank you Gabby and Dolphin...xx
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Old 28-07-17, 09:13 PM   #7
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Default Re: Loss of speech

Quote:
Originally Posted by banda View Post
Hello friends,
sadly I lost my Dad, his funeral was 29th June, but now feel as though I'm losing hubby who has HD. His speech has deteriorated so much that he now says very little and at the weekend he couldn't actually verbalise at all although he was trying. I have phoned the local HD team who work with the consultant and we have been to the GP....just grasping at straws as to what if anything I can do to help or to prolong his ability to communicate verbally. It is so distressing for us both.
I am so very sorry to hear about your dad's passing and your husbands speech. I find the better conversations are the ones if I know the subject well but unfortunately a lot of the time I am just too tired and i struggle to participate in conversations because I can't remember enough interesting information about the topic being discussed to make a conversation and people are not always very patient so it not long before I fall silent. It is distressing and I do find myself often wanting to crawl away and not take part but sometimes I can do it and it's usually helped if ithe conversation is one of my very few specialised subjects and if the person is genuinely listening and being patient with me. I do think it's important to keep trying, I need people to get me to speak otherwise I'm worried I will just lose it all the more quickly. I spent the afternoon today sharing a cup of tea with a lady who is 94 years of age, she doesn't have HD, she is very well and mobile but she can barely see and is deaf and unfortunately for me being 44 years her junior, I appreciated the slowness of the conversation I had time to think and somehow we conversed. What was sad was that she had very good speech and a sharp mind, she just couldn't hear which I've no doubt she found as frustrating as I did and probably wished for a much better conversation than I was able to give. I left feeling very sad for both of us. I write messages when I prefer not to speak. What I find helps me if I can response to loved ones jokes and banter by laughing or smiling. I like hearing something interesting read to me so I can comment on it. Conversation is so complex because you have to think of something to say at the same as finding the language for it and the correct pronunciation and pausing at the right time and repeating the multiple times this is done. It is so very difficult to know what if anything will help and worrying doesn't help although it's hard not to. I find it more difficult to speak or find the right words if asked direct questions. It's awful, I hate it and my heart goes out to you and your family. Lily
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Old 29-07-17, 07:28 AM   #8
banda
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Default Re: Loss of speech

Thank you Lily...you still communicate beautifully on here! Thank you for your comments and your hints and tips...you have provided me with a better insight into it all which I will put to good use. You are certainly right about the topics of conversation being important... Thank you so much. xx
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Old 29-07-17, 09:52 PM   #9
LECS
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Default Re: Loss of speech

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Originally Posted by banda View Post
Thank you Lily...you still communicate beautifully on here! Thank you for your comments and your hints and tips...you have provided me with a better insight into it all which I will put to good use. You are certainly right about the topics of conversation being important... Thank you so much. xx
Thanks Banda, that means such a lot to me. I'm going through a particularly difficult patch at the moment where I just can't find a fit so I'm dwelling a bit on what's the point, so hearing I'm still making sense writing here helps. Xx
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Old 13-08-17, 02:42 PM   #10
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Default Re: Loss of speech

Quote:
Originally Posted by banda View Post
Hello friends,
sadly I lost my Dad, his funeral was 29th June, but now feel as though I'm losing hubby who has HD. His speech has deteriorated so much that he now says very little and at the weekend he couldn't actually verbalise at all although he was trying. I have phoned the local HD team who work with the consultant and we have been to the GP....just grasping at straws as to what if anything I can do to help or to prolong his ability to communicate verbally. It is so distressing for us both.
oh dear, Banda, I feel for you at this time...
So sad to hear of your loss and your Hubby's speech issue.

I think the effort of speaking is the main problem so keep in mind that when really needed he will be able to communicate somehow.

I found that the effort to move the head, to even watch something or focus on something became too much, so moving everything important into V's eye line was the only way to go.
As radical as it may seem moving tv, photos, memory board, into a single rack of shelves, at the bottom of V's bed, worked!

Thinking of you both.

regards
Brian.
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