Voice Problem Support

community for people with voice problems started by The Lary Project

Hi everyone ! 

i am 30 years old and was diagnosed with spasmodic dysphonia 2.5 years ago. I only recently discovered i was diagnosed with this awful condition a month ago as i went to the doctors for a self referral for speech therapy. I was relieved as for 2.5 years i felt like i was going in sane or crazy or people thought it was in my head or even putting it on. 

I have also done research on spasmodic dysphonia and looked into botox injections, has anyone had these on this forum? could you advise if anyone has ? I have also researched surgery and the power of holistic therapies and cognitive speech therapies which wont cure spasmodic dysphonia but re inhibit good behaviors and strategies to help us speak to a certain degree. I start my first session on 9th of june with speech therapist and im going to enquire about botox. i have researched medical centers in America and the rehabilitation center in America , California were a lady called Connie pike who owns it - check her out on U TUBE people if you get chance- thats just dreams for me as its so expensive to fly to the other side of the world. I have researched hospitals in UK who do surgery for spasmodic dysphonia also. I will post some good websites i came across if anyone would like to check out. 

I have discovered how difficult it is socially and using public transport and our job if your in a role were you need to speak, also using the telephone - i have never had a conversation on the telephone for over 2.5 years. also socializing with friends and family when out in social environments like a cafe or a restaurant ordering food etc. I have also got to tell you all that i have recently downloaded on me phone applications from the google store and also available on Itunes store - they are apps to help and assist to speak. I had an amazing idea to use the app with a telephone( so i phoned my nan and held the tablet to my mobile as i used the app to speak to my nan). this was a new beginning for me and a break through for me as i have never had a conversation on the phone for over 2.5 years. so it felt amazing ok it was not my actual voice and it was voice in the app but it was amazing.. I am an independent person like many of you are and also utility companies etc having to get some one to pretend to  be me to sort my own personal business out is frustrating. this breakthrough with amazing apps and new technology apps is fantastic. I just had to share my story with all of you and my research, journey. hope everyone is keeping strong and keeping positive ! 

Millie 

 

Views: 463

Comment by Helen Timms on May 6, 2015 at 19:13

Hi Millie

I too have spasmodic dysphonia more present on the left vocal cord as it tends to tremor and paralysis. I've had voice and throat problems for approx 4 years  It's got worse over the last 2 years.  Please persevere with the speech and language therapist ad I began seeing mine in March and although I pleaded to have botox ad a desperate immediate cure was advised by ENT Consultant to have 3 months therapy first. I'm glad I did as although it's by no means a miracle cure it has helped to understand the workings of the condition and learn new techniques with breathing and voice contrivance some hands on manipulation. It already feels better. I will still likely need to have botox but getting the breathing and voice under control has proved a good starting point. At least now (all be it with a strange sounding voice) I'm able to communicate better. 

I still struggle immensely socially I guess that part is going to take a little longer to practice with the controlling breathing in social situations.  Most people once I tell them I have a voice disorder are pretty understandin, more so than when I never mentioned it. Now I think it's other people ignorance and is their problem not mine. Unfortunately it's a debilitating unseen disability. A good speech & language therapist will support you to understand this and feel more confident to deal with it. 

Good luck

Helen 

 

Comment by Helen Timms on May 6, 2015 at 19:19

Sorry forgot to mention that gsviscon advance several times a day really helps. Silent reflux without even realising it occurring puts enormous strain on the larynx. 

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