Speech : Has anybody got any tips yo help with... - Ataxia UK

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Speech

Tazwaz profile image
17 Replies

Has anybody got any tips yo help with speech problem thankyou

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Tazwaz profile image
Tazwaz
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12monkeys profile image
12monkeys

Speech is huge topic to advise on. You are best off getting a referral from GP or consultant to a speech and language specialist and asking an expert to get helpful tips

wobblybee profile image
wobblybee

Speech therapy project shows successPost Published: June 30, 2020

In a project funded by Ataxia UK and the Swiss Association of Friedreich’s Ataxia (ACHAF), Professor Anja Lowit showed positive results using Lee Silverman Voice Treatment (LSVT) for ataxia.

Many people with ataxia have slurred speech (dysarthria) which makes communication difficult. Few studies have been conducted to test speech therapy interventions on people with ataxia, and none have provided evidence to advise speech and language therapists about how to best help people with ataxia.

A research team from Strathclyde University investigated the effectiveness of LSVT in improving communication in 20 people with ataxia, including FA, SCA6, idiopathic CA and spastic paraplegia type 7 (SPG7). LSVT has previously shown positive results in people with Parkinson’s disease.

Sessions of 50-60 minutes were administered via Skype, twice a week over eight weeks and patients were advised to practise another four or five times a week.

This study represents the largest speech therapy treatment trial conducted on people with hereditary ataxia, and the results are very encouraging. After therapy, participants had more breath available to speak, resulting in improvements in their voices sounding less strained. The study did not show improvements in ability of others to understand participants when listening to recordings, but many felt they sounded clearer or had to repeat themselves less, and were more confident when communicating. Outcomes reported by the participant demonstrate that they felt lessened anxiety while communicating or reduced effort required for speaking, were important factors that can be used a measure of success of the treatment.

Professor Lowit said: “We are excited about the outcomes of our study, as it shows that people with ataxia can improve their communication with the help of speech therapy. Although the treatment could not improve everybody’s speech, the majority of our participants reported benefits and we now plan to do further research to be able to help a wider group of people with ataxia.”

The researchers suggest that speech and language therapists consider providing LSVT treatment for people with ataxia, provided that the impact of the treatment is closely monitored.

nigelrheath profile image
nigelrheath in reply to wobblybee

I am taking part in the next phase of the research and am looking forward to it. I had some voice therapy sessions during lockdown and they were helpful too. Referral through my GP. Having someone give you full and focused attention is very special and uplifting.

Nigel

Tazwaz profile image
Tazwaz in reply to nigelrheath

I was looking for tips you could do yourself at home

february profile image
february

I see a speech pathologist yearly and she suggested speaking slowly. Also, practice saying the alphabet and numbers. It works for me! My best to you ;o)

nigelrheath profile image
nigelrheath

Firstly some deep breathing. About 3, any more and you’ll go lightheaded! Then see how long you can say aah, on one out breath. Time yourself as the aim here is to do this daily.Alphabet and numbers are fine. If you want more challenge use google and search for tongue twisters, freely available. Some singing coaches offer ideas online too. Do this in front of a mirror.

To really hear what you are saying download a recording app. Look for one that gives instant feedback through your earphones or buds. That way you can alter your voice as you speak, practice accents and silly voices. You may want to do this in a quiet room! For iPhone several apps are available free, so I expect that is true for android as well.

As others say, slow down your speech and only speak from your tummy not your throat.

That should get you started.

Nigel

Libra7 profile image
Libra7

My best advice for helping yourself is to download some tongue twisters from the internet and practice saying them loud for 10 mins each day. (Say them slowly if you find them difficult).

Libra7 profile image
Libra7

out loud

Hi Tazwaz!

If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.One of the symptoms of PSP is that its speech becomes slower and more difficult to understand but generally its intelligence remains. I reproduce some reflections of Kevin_1:

“As the illness develops their mental processing becomes slower. That is they think slower, but they still think as adults and draw on a lifetime of experience and most likely using all of that wisdom which comes with it. So the way to speak is in a straight forward manner, not fast, simple language, but not slow as if talking to an idiot as in a movie, and to give them time. Ask them of they understand if it is complicated and if they want you to clarify anything. This is basic good communications practice. It works.”

For a time we attended sessions with a speech therapist until the disease progressed and no advantage was obtained, at the same time we combined it with exercises at home with a "Breather" (you breathe with some force in and out through it and it has adjustable resistance). Martina_MP uses a free app (great for iPad) called TalkPath Therapy by Lingraphica which has easy to follow speech and cognitive exercises.

On our case, we intend an App but It was not possible to use it for more than few months. As her dexterity deteriorated, she had problems placing her finger on the appropriate word or letter and we were able to buy a plastic screen cover that had an opening for each key on it; this helped to direct her finger and keep it one the right letter. Another problem she developed was the inability to tap her finger in a key or letter, and as such she would often have several letters in a row. For example if she tried to tap the letter A, it would show as AAAAA because she could not get her finger off the letter A quickly enough.

Some have successfully used for some time a cheap iPad plus free software text-to-talk program called Claro (claro.com) with a BigKeys keyboard that attaches to the iPad through an Apple device that is used for connecting to camera to an iPad . A voice comes from the Claro program. It's like a GPS voice.

On our case we have used a plastic laminated A3 sheet with the alphabet in large letters (40x40 mm) supported on a music stand at the height of the patient's eyes. She points to the letters and another person writes on a blackboard the letters that patient indicated.

You can also prepare "communication panels" with the alphabet and some pictograms that patient can be marked with a pointer. Up to the present time it is the best system we could find. Over time the pictograms become useless and it is necessary to use only letters, as large as possible.

Speak to the PSP patient as you would anyone else. When it comes time to ask a question try framing it to a yes or no response. It's not that the question is hard to understand but forming/finding the words for an answer may be difficult.

The communication with a patient of PSP is one of the most difficult problems to overcome.

When the patient can still verbalize it is important to know that saying NO requires less muscular effort than saying YES.

When verbalizing is almost imposible and the “communication panels” don´t work, to say YES by showing the thumb from the fist and saying NO by hitting the fist on a surface could be a solution. Alternatively taking the ”more active” patient´s hand and establishing that a squeeze is YES and no squeeze is NO.

There will come a time when the answers are slow and even erratic. In this case, it may be better to prepare the patient and tell that you are going to ask for a response later to a question that you are verbalizing at that moment. When the disease progresses, the response is slower, until making a thumb gesture or squeeze your hand may need at least 20 seconds.

To write down a big YES, NO on a sheet of paper and the patient could point to the correct one seems to be a good alternative.

When all fails, sticking out the tongue to indicate "YES" can be a solution.

Recently there has been an information related to ALS: Voice & Message Banking (Susan Mast ALS Foundation) that may be applied to patients with PSP.

youtube.com/watch?v=WCkjbiD...

Hug and luck.

Luis

SueMillman profile image
SueMillmanPartnerAtaxia UK in reply to LuisRodicioRodicio

Ataxia UK will be launching its free Voice Banking service in a few weeks. It will be with SpeakUnique. There will be an article about it in the forthcoming magazine.

BrettDarby profile image
BrettDarby

Tips: I read aloud, a page from a book I’m reading.

wobblybee profile image
wobblybee

🤔 One of the things that concerns me is ..my actual pitch.To me it sounds normal level. But my husband says it’s inclined to start off ok and then tail off..as though I’m saying half a sentence.

I don’t seem to be able to regulate this..unless I shout, and then I sound angry🙄

Trinity1948 profile image
Trinity1948 in reply to wobblybee

I am so glad to read your post as I seem to have the same problem,I thought perhaps my husband was becoming ‘hard of hearing ‘but he denies this !

Maxineto profile image
Maxineto

What kind of speech problems? I was a stutterer up until about age 18/19 when I moved out of my family's home.

coat2003 profile image
coat2003

accept it! DONT FIGHT IT.when heard myself on answerphone machine, who is that demented woman?I am NOT native Brit, only naturalised...My mother tongue is demanding on letter "r!", sort of Glaswegen dialect.... near enough, strong accent.When speaking english- ispeak slower, but still understandable,my own lingo no!so i must slow down even ore.speak less.very demanding on energy and voice box, i shorten my side, when feeling tired.it is NOT SPEAKING BUT CHEWING that causes tiredness....

SueMillman profile image
SueMillmanPartnerAtaxia UK

Hi Tazwaz

Ataxia UK has now started our programme of online speech therapy. We have a waiting list which will take a little while to get through, but if you wish to go on one of the online courses, please contact the Helpline.

Best wishes

Sue

chelpet profile image
chelpet

I am involved with one of the online courses. In fact the group that I belong to, became so committed to each other and the process, that we still meet regularly online.

One of my particular ‘passions’ is music and singing. I have been a member of several choirs, until the Ataxia symptoms interfered too much! I miss intensely the pleasure that singing in a choir, and also to my own accompaniment, gave me.

Recently I have started singing to a karaoke backing track (in my case on YouTube), a couple of songs that I’ve covered previously. At the moment I find singing along to the backing tracks a real challenge to my breathing and voice control, and also often produces an emotional ‘meltdown’ that renders me almost incapable of continuing the challenge of singing.

Nevertheless I am continuing this process most days, accept the ‘meltdowns’ as being an almost necessary and cathartic part of the process, have read the lyrics to the group, and have assured them - and myself - that I will soon sing to them.

Who knows, as well as being extremely beneficial for me, it may inspire other members of this group to take up or resume singing, and boost my abilities and chances of rejoining a choir!

chelpet

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