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Bookmark and share the address of Spasmodic Dysphonia UK Support Forum on your social bookmarking website


is anyone there?

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is anyone there?

Post by paddyjoe on Tue 05 Mar 2013, 6:44 am

Hi
looking at the forums it doesn't look like anyone is using them. I hope you are there. I've had no voice at all since middle of December. No good when Im a teacher:-( noone understands and i hope someone out there does and knows how frustrating it is

paddyjoe

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Join date : 2013-03-05
Location : stoke-on-trent

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Re: is anyone there?

Post by stefthepest on Sun 16 Jun 2013, 10:39 am

Hi Paddy
I agree with you about this place being a bit quiet if not downright dead! I am so sorry nobody replied to you. I see that lots of people viewed your post but nobody replied.

There seems to be no point having a support group If nobody is participating which is a great shame.

I went on the main SD American home page and at least somebody replied to me but they did say about having the UK support group this one I presume?

I hope you have got some help since you last posted. I would be happy to reply to you but I can't remember how to send personal messages.

You have hit the nail on the head SD is so frustrating precisely because people have never heard of it and don't know how to react to you. They just think your voice will come back and everything will be ok.

I definitely think stress doesn't help but it doesn't cause SD just exacerbates the condition and makes you more tense and down.

Are you still at work? I can't imagine anything worse than being a teacher and having SD. You have my utmost sympathies.

All the best
Stef

stefthepest

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Thanks

Post by paddyjoe on Tue 18 Jun 2013, 5:07 am

Hi
Thanks so much for replying.
Voice still quite weak and now out of a job because of it.  Applying for loads of new jobs but not a lot avaliable to a teacher with a bad voice so no luck yet.
Totally agree that there not much point having a GB support group when noone ever bothers to reply to or support others with the same condition.
How are you doing?
Fi

paddyjoe

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Re: is anyone there?

Post by stefthepest on Tue 18 Jun 2013, 10:21 am

Hi Fi
That's alright.

I'm so sorry to hear about your job. Would you like to stay in teaching or try something else?

I struggled so much at my old job it was more stress on top of the usual stress and nobody understood. I got to a point I couldn't use the phone and that was noted on my report which made me more upset.

People don't realise having a voice problem affects every part of your life from shopping going to the doctor everything. In my case I shut myself off through embarrassment.

I was doing ok until recently and now am struggling. If I ask a question I feel my voice going so I change words or try to phrase things differently or just don't talk.

Did you talk to the job centre people about your SD? What about going to your doctor and asking for advice/help?

I'm sorry I can't be of help but I would love to chat if you'd like.

Take care

Stef

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Re: is anyone there?

Post by Bella24 on Thu 09 Jan 2014, 10:34 am

Hi Paddy and Stef or anyone else reading,

If either of you ever want to chat I try and check on here as often as I can -otherwise I'm willing to give my email address in a private message which might make it easier to chat.

I have had SD for over 3 years, and only recently have I started to recover from it.

Like you said Stef, it made me feel embarrased. No-one had heard of the problem, and I think they thought I was making it up.  Embarassed 

It is really tough, but it helps you to realise who really cares and who doesnt.

I have had botox injections 3 times now, first 2 times were very short lived results. However third injection I seemed to work much better.

It has now been 2 months since my botox injection, and I have just begun a new job so trying to keep my voice working as long as possible.

A few things that work for me,

drinking tea and honey, or hot water and honey really helps soothe my throat, as it always feels tight and painful but the honey seems to help relax it from the inside. I usually put two large spoonfuls in each drink.
(You can always use decaf tea which is less drying on the throat)

If you do suffer from muscle tension in your neck as I do, a little tip is to massage your neck with vicks vapor rub it really feels like it opens up your airwaves and relaxes your neck!
I do this the night before any big speaking day as it really helps it relax.

You can be also be referred by your GP to a voice therapist who also specialises in laryngeal manipulation.

However you can massage your own neck, slowly pulling all the muscles downwards and then back seems to work. (check youtube for video on self massage for the throat)

Youtube is a great place to find other voice exercises or massage techniques.

Sometimes massaging the back of your neck works better in relaxing your vocal chords (Check youtube video: The Singers Cure: For Laryngitis...)

Also, I did find out the other day that Robert Kennedy Jr. has spasmodic dysphonia. So we are not alone Razz

Sorry to go on and on, just want to give anyone reading a few useful tips. I know how many times I have looked and found nothing useful.

Thanks xxx

Bella24

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Re: is anyone there?

Post by stefthepest on Sat 18 Jan 2014, 1:55 pm

Hi Bella

Sorry it's taken me a while to get back to you. Yes it would be better if you gave me your email I couldn't remember my password on here.

Even though my SD is better these days it does vary greatly. I am at work and because of the stress that does make it worse which in turns makes me more stressed if you see what I mean. I am lucky I don't have to talk much at work and don't have to use the phone but even so sometimes when asking a question my voice can go and I feel very self conscious.

Unfortunately my voice therapists were no help and one in particular was quite unsympathetic and tried to imply I was not doing her exercises, (which was not true).

So if you could give me your email I could get back to you to chat.

Take care
Stef

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Re: is anyone there?

Post by stefthepest on Wed 22 Jan 2014, 10:59 am

Hi again

Trying to send a quick email to Bella and I remember you giving me your email address but I can't find it now! So sorry.

Would it be possible to give us it again?

Thanks
Stef

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Re: is anyone there?

Post by Bella24 on Wed 22 Jan 2014, 2:11 pm

Sure! I'll send it to you a private message now Smile x

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Re: is anyone there?

Post by annemarie on Sat 21 Mar 2015, 11:32 am

Hi Paddy,
I'm a teacher too and have problems with my voice. What's really bothering me at the moment is a voice is like having your own army. It can attack for you and defend you when necessary. I'm feeling a bit down at the moment for struggling without my army. Just wondering if anyone has any advice.
Thanks

annemarie

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Re: is anyone there?

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