Hello if you’ve tuned in!
I have never blogged before or understood why people want to. It is something I don’t understand or ever had much interest in. However, I now have something I understand even less. It is called spasmodic dystonia, laryngeal dystonia or focal dystonia take your pick. I will refer to it as spasmodic dystonia (SD) because that’s what my doctor calls it so it must be right.
So what is this?
This is a very rare neurological condition that affects my speech………wow! we were given a voice for a reason, to communicate through speaking, singing, laughing, crying or whatever else takes your fancy. For me this is now a very different picture. My voice started to ‘spasm’ or to be more descriptive feel like I was being strangled when I spoke. This all started about 15 years ago. Yes I know that’s a long time but the thing with SD is misdiagnosed because:
A) Doctors don’t know what it is (great)
B) If you do see a doctor you are written off as neurotic, anxious or mental (more of this later).
I remember the day it happened out of the clear blue sky I could not get my words out. I was living in Los Angeles at the time and had a particularly domineering boss who basically made me mental. On this lovely sunny day I was having a heated discussion with her and just like that, no voice. I tried to speak but all that came out was strained, strangled interrupted words. It felt like I was choking or having a heart attack. The heaviness I felt in my chest was frightening, my head was spinning and I leaned over to catch my breath.Yes that’s right my breath. I couldn’t breathe properly, it was all so unfamiliar and ridiculous, why was I letting this woman upset me so much.
Fast forward 15 years.
Yes, i’m ashamed to say this is how long it took for me to be diagnosed, partly my fault as it took so long for me to admit I had a problem speaking. I will talk about this later.
Let’s get to the facts. I saw a specialist at my local hospital in January 2017. I was so nervous and my voice was so tight I couldn’t even say my name. I walked into the consultation room and the first thing I noticed about the doctor was the massive emerald and diamond ring she was wearing. I was immediately at ease, how could I not be. Anyone with such impeccable taste must be OK.
Our conversation was painful. I was embarrassed and choked up I just couldn’t speak. The nice doctor with the beautiful ring put a tube down my nose and asked me to say ‘EEEE’ and sing happy birthday…………so I tried……..and I tried……and I tried.
Within 10 minutes I was very nicely informed that I had spasmodic dystonia, a rare neurological condition,. This maybe genetic, or could be caused by stressful, traumatic life events (here we go). There is no cure for SD only treatment managed with botox injections into the vocal cords every few months.
Apparently the problem comes from the basal ganglia in the brain. So can I have a basal ganglia transplant? If not why not, they can do everything else. Sadly there is no basal ganglia transplants, or vocal cord transplants for that matter. I just have to live with it.
So what next? Well I am going to tell you, but for now I think I will have a coffee and watch a bit of TV. I will be back.