mini update and a diagnosis


lifelong sufferer of restless brain syndrome
Oct 28, 2004
New Zealand
Not been posting here much but I still check in on a regular basis to catch up on the chat!
I am still in wonderful New Zealand and having a great time. I love this country and its people more than I can put into words. Having moved around so much over the last 15 years it's quite weird to be living somewhere that feels so much like "home".
NZ came out of lockdown in June and life has been back to normal since then. It kind of feels like I've been viewing the whole pandemic situation through a really long telescope. Very much like I'm just "hiding out" here pretending covid doesn't exist. I tend not to say things like this, but I really do feel incredibly blessed to be here (being agnostic, I don't know who or what I am being "blessed" by, but it seems like the most appropriate word!).

My original work visa expired in November but I have got another one that will take me through to July.
Originally my plan was to study Social Work at uni here - I even went through the whole interview/selection process and was offered a place, but when I got the final quote for how much it would cost... as a non-resident paying international student fees... 4 years of tuition fees, plus living/support funds, all of which must be paid upfront when you apply for the Student Visa... upwards of £85k :oops: I'd been planning to fund it with some of the money I inherited from the sale of my grandma's house - but to spend ALL of it on that one thing? Um, no. So, I decided to follow my head not my heart, and turned down the offer.
It actually makes more sense for me to study back in the UK - where I can do the degree through the Open University whilst working part-time for a social care agency - and then move back to NZ once I'm qualified and can apply for full residency as a skilled migrant.
So, I will be heading back to the UK at some point this year, though probably spending a few months travelling Australia before that (I may as well, since I'm out here!).

Up to June I was working at the sports horse stud where I worked during my first visit to NZ in 2016/17. The ladies who run it are not only excellent horsewomen who I respect tremendously, but also bloody good friends (and gin drinkers, and great cooks, and swear a lot... these are my people!). So it really wasn't a great hardship to be there through lockdown, especially as I was working the usual full-time hours with the horses, rather than being stuck indoors like so many other people were. I also had a couple of 4-year-olds to break in as my lockdown project - they were both grey mares and really lovely people (and one of them reminded me SO much of my Annie!) so that was a nice bonus (both figuratively and literally, as I also got a cut of the money when they were sold!).

Since then I've done a lot of travelling around, got a few months' work breaking & schooling ponies on a Connemara stud, did a couple of stints of house & horse sitting, and spent some time with a voluntary program running free English classes for the Muslim community in Christchurch. I've also been doing a lot of online teaching, mostly with migrants and international students in NZ, and some other clients in Europe. So I have been keeping myself pretty busy! In November I came to my current job, working as a horse trekking guide in Queenstown. My accommodation is provided as part of the deal, so I'm living in a guesthouse on the hill overlooking Lake Wakatipu, with the most beautiful drive into work each day. The trekking is on a private farm next to the stunning Moke Lake and overlooked by Ben Lomond mountain.
I have way too many photos from the last year to be able to decide which ones to post here! But some of them are on my Facebook - and many more will be, when I can be bothered to upload them! - if anyone fancies a gander.

Finally, the other thing that's happened, and I guess the most significant, is that I was recently diagnosed with a rare neurological voice disorder called Adductor Spasmodic Dysphonia. Normally when you speak the air passes through the vocal cords and they vibrate slightly - but with ADSD, when you start talking the vocal cords go into spasm, and this tightening makes it difficult for the air (and therefore sound) to come through as it should. Essentially what this means is that I'm unable to talk with a fluid voice. I have a fairly mild case, so at a normal conversational level it's not too bad - there's an occasional break on certain sounds, or it's just a bit shaky, making it sound like I'm nervous when I'm not. But it does become a problem when I need to project my voice - like when I'm teaching in a classroom, or making conversation with my riders (we trek in single file, so I have to turn in the saddle and raise my voice to speak to them), or being heard in a noisy environment, e.g. ordering in a restaurant / talking over a shop counter / talking through the plastic screen at the bank). In these situations my voice has a very noticeable tremor, it breaks every few words (or even syllables, depending on the combination of sounds), I'm unable to pronounce words clearly, and in general my voice is very strained and difficult to hear properly. And because the vocal cords are tightening up, I'm literally having to FORCE the air to pass through, so speaking full sentences actually becomes a physical challenge. Usually I can't finish a whole sentence without becoming completely breathless. So not only is the condition frustrating, it's also exhausting!

They don't really know what causes Spasmodic Dysphonia but it's rare enough that getting a diagnosis is difficult as it tends to be passed off as something else. My voice quality has been deteriorating over the last 5 years or so but I just never thought about seeking advice or treatment (you know how you just push things to the back of your mind, and tell yourself you'll do something about it one day, but never do?). But a few months ago I had a lady on one of my treks who happened to be a largyngologist, and within moments of hearing me speak she asked me if I had ADSD. I said I didn't have a clue what that was, so probably not! She told me about the condition and said I had all the classic symptoms. After doing my own research and thinking "this ticks all the boxes" I got in touch with her and she gave me a referral directly to a specialist so that I could skip the whole "going-to-a-doctor-and-not-being-taken-seriously" stage. It didn't take long at all for me to have all the investigations etc and receive a proper diagnosis.
Unfortunately it's not curable, but there are a few treatment options that can improve your voice quality to some degree. The main one is having Botox injections straight into your vocal cords - the results can vary from one case to another, but apparently in milder cases like mine they tend to be fairly effective, and one set of injections can improve voice quality for several months at a time. I have a bit of a wait for my first appointment, but my first speech therapy appointment is next week so I'm looking forwards to getting started on that. I probably should have seen one about 3 years ago, but there you go.
So yeah... that's where I'm at right now.


Well-Known Member
Dec 20, 2004
Suffolk, UK
Wowsers, you’ve got so much going on. I hope now you have a diagnosis the Botox helps, how lucky that you happened to meet that lady. I’ve seen your pictures on Facebook, where you are now looks really stunning ?


Well-Known Member
Jun 4, 2014
Lovely update :)

Glad you've got a diagnosis - hopefully speech therapy can help in the interim of botox. I've had speech therapy in the past (not for ADSD) and it was really powerful.

Enjoy Australia too before coming back to the UK. Safe travels!
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