Hi, my name is petersj! I've just lost my job as a teaching assistant

petersj

Five months ago I was diagnosed with spasmodic dysphonia- a rare incurable neurological condition which affects my ability to communicate effectively. I’ve just lost my job as a teaching assistant because of it. ?

chiarieds

Hi @petersj - & welcome to the community. I'm so sorry to read about you losing your job due to spasmodic dysphonia. I don't know about this condition specifically, but our youngest daughter had both of her vocal cords paralysed in the midline. She had a tracheotomy at one week old, & we were told we would never hear her speak, yet she did, by putting her chin down over her trache.

I spent a lot of time researching her condition, which shares some slight similarities with your own depending on the exact problems with your vocal cords, & the position they're mainly in, i.e. open/closed. I just wanted you to know that I understand a little.

I therefore wonder if you've been offered Speech therapy, or any treatment options? Obviously your specialist will be in the best possible position to advise, but your GP may also be helpful.

petersj

Hi @chiarieds. 

SD is very difficult to diagnose as there are only around 8 specialists in the country. The average diagnosis time is 4 years! Mine took 18 months - but only by me pushing at every point - despite the intervention of the Covid pandemic. 

I did a lot of research & thought it could be SD around 5 months in. There are 8 GPs at my practice and none of them had any idea. The main problem however, was that the ‘highly respected’ neurologist I saw early on dismissed me completely which skewed the diagnosis route. (As spasmodic dysphonia is neurological) 

I had 16 sessions of speech therapy to no avail but my ST was very proactive & I got referred to a respiratory therapist who had previously worked with an SD specialist. From there, I eventually got a referral to an ENT with some knowledge & diagnosed with mixed SD - which is extremely rare. In total I was seen 62 times from the first issues to diagnosis.  

Within a month, I had my first Botox injection in Manchester. Botox is the only treatment available & unfortunately, results are highly unpredictable. So far for me, it hasn’t worked & since the last injection in June this year, I’ve had no audible voice. I’m not giving up & will go back as soon as my voice returns ?

chiarieds

Hi @petersj - it's good about your ST being so helpful & this therefore leading to a diagnosis. I hadn't heard about a mixed type of SD; it's so difficult when you have an unusual disorder. I've been there in a similar fashion to yourself, in researching, but then needing to find the right specialist to have this confirmed.

I'm sorry the Botox hasn't worked so far; I realised it was an option, & was hoping it might be offered. It's great that you remain positive, & thank you very much for saying more about your disorder. I hope you let us all know how you get on.

janer1967

Hi and welcome to the community 

Im sorry to hear about your situation and you have lost your job . Its hard to adjust to not being able to work jyst give yourself time and find interests you can take up 

Tori_Scope

Welcome to the community @petersj  

I also just wanted to say that I'm sorry to hear about what's happened. It must be difficult to lose your job, along with dealing with a new diagnosis and the treatments you've been trying out. 

Are you able to cope financially?

petersj

My disability came totally out of the blue & it’s not going to be easy suddenly losing so much per month. I’ve applied for ill-health retirement which might give me a small amount each month & have sought help from Citizens Advice with PIP. ?