A Breakthrough

Occassionally throughout the day a lower pitched better sounding voice has been emerging then at other times when I was quite unprepared for it, the weak, breathy voice of the last couple of days came back again. Nevertheless it is quite exciting when this happens as it holds the promise of better things to come. Today was the first time in ages that I began reading an article from the newspaper out aloud whilst in the car; that may sound pretty ordinary to most people but to those with SD, just being able to speak audibly in a car is a challenge. There I was enjoying the sound of my own voice and not having to make an effort.

It must be very difficult for others to comprehend what it is like having to make an effort to speak. It is only when the Botox has worked and speech is effortless once again that you really appreciate what it was like before having SD and how wonderful it is to regain that freedom of expression.

A little concerned and being brave

Last night we attended a party to farewell a group of civilian volunteer sailors about to embark on one leg of a sailing trip to China which is part of a round the world event. I was just a little concerned about what challenges I would encounter since we had never met these people before except for knowing my son and his girlfriend. It was a reasonable sized gathering of about 50 people and when it got too noisy for me to speak I went outside into the garden where there were also lots of people (strangers)! Well that is not totally true.

In the course of the evening we learnt that not only did we know our sons girlfriends brother's girlfriend and mother, whom we had attended the School of Philosphy with 6 years previous but we also knew from many ago the best friend of our sons girlfriend's mother. What a small world!

Now, engaging in conversation with these people was interesting because at no time did anyone comment on my voice. As I was getting a little self conscious I did let one of them know that I was recovering from the side effects of the Botox injection and her comment was that she always thought I was softly spoken anyway. All in all it was such an enjoyable evening making new friends and becoming re-acquainted with old friends.

Little Things That Help

It is great when contact is made with other SD challenged people from around the world and it is even better when you receive a comment from family of friends to say that your voice is sounding better. I was just on the phone to my son and he said my voice is sounding stronger than the other day; little comments like that are so important because I was thinking that I was not making progress and my voice was the same as yesterday!

What does not help is when a loved one looks at you as if you are a double headed monster when you are trying to make yourself heard and understood in public, where it is generally a lot more difficult to speak. This happened today and it was a look I was familiar with from years ago prior to having Botox, the look I would receive from my partner (who is not a patient man) was of being fed up with having to listen to my poor voice, it is very condescending. I am sure that it is just as hard for others with good voices to live with those who have Spasmodic Dyshonia. We are all challenged!

Voice of a Child

I missed a day of blogging because my wireless button was inadvertantly switched off and as a result I could not use the internet as I didn't know where the button was located. It is at the front of the laptop near where the lid connects to the base in the middle on the base section. Well now I know thanks to a friend who came to dinner and then to my rescue!

My voice is quite weak and has been for the last two days and sounds like that of a little girl; when I answered the phone this morning my friend said it sounded cute! However it is getting somewhat tedius and I dont like the sound of it but I cannot help the sound that comes out. The problem I had a few days ago with swallowing has eased thank heaven, now I don't have to give my whole attention to every sip I take for fear of choking!

It is good to be with friends when your voice is not good since no explanation needs to be given and life seems a little more normal. When at the shops I make sure that I do not engage in conversation by avoiding to look people in the eye.

Taking it Easy

After a hectic Christmas Eve at the shops yesterday morning, doing my best to be understood with even less voice than the day before, I resorted to using pen and paper. I anticipated that there would be a crowd when I went to collect my order of seafood so I was prepared with my order details written out and all I did was handed it to the guy behind the counter. That worked well!
So today it has been a lovely time at home with family and friends and no need to employ any strategies .. just taking it easy!

Swallowing

Over the last couple of days I have encountered difficulty in swallowing fluids. It is very easy to choke if I don't pay attention to the whole process of drinking and swallowing carefully, thoughfully! Funny how things you take for granted can take on enormous importance at times. I've had this side effect in the past and it isn't too bad, I just have to be mindful of what I am doing when eating and drinking.

Speaking was difficult today as most of the time my voice has been breathy, high pitched and lacking in volume. It was particularly hard to speak when at a cafe the coffee machine was grinding away in the background and I needed to tell my mother-in-law what I wanted to order for lunch; I ended up walking away from the noise and asked my partner to do the talking for me. He is getting a bit frustrated by my inability to communicate normally therefore I am feeling a little withdrawn. Becoming withdrawn or quiet is my best strategy to avoid conflict or difficult situations. After lunch I tried to order a cup of white coffee and the girl looked at me real strange, she tried to guess what I said and got the order wrong but luckily I was able to correct her, almost in broken English. What I should have done was asked my partner to order the coffee for me. It is just a matter of waiting perhaps a couple of weeks for my voice to come good again; if today was anything to go by, then I will probably start avoiding people . I am so thankful that I am on holidays until the end of January.

Telling the Truth

Day four after the Botox injection has been similar to yesterday, my voice is unpredictable. This afternoon while walking back from the shops with my mother-in-law, I recognise two acquantances from years ago. When I recognised them I hesistated making a move to say hello, sort of hoping I could just slink away un-noticed however the little voice in my head said be sociable the other little voice said, "brace yoursef, your voice is still on a rollercoaster, get ready for action!" I wasn't sure if the lady recognised me but I took a breath, smiled and indicated that I knew them.

It would have helped the situation a little if I could remember the lady's name, I remembered her huabands name so I introduced them to my mother-in-law as best as I could. I immediately had to tell them something about my voice, the laryngitis excuse was not good enough as I would see these people again sometime, they needed to be told the truth. The reaction was 'oh you poor thing!', pity is hard to take and makes me feel bad; funny how a lie would have had a different response.

Without a Voice

Well day three after the Botox injection has been interesting. The voice has really been on a rollercoaster, sometimes it is high pitched and squeaky, at other times almost inaudable, occassionally a full volume pure beautiful voice comes through. It is incredible to be in my skin watching all this happen. I started off the day giving my mum a call. Thankfully it ended after one minute of me trying to repeat myself and explain that I'd had the Botox injection and reassure her that no I am not crying, I am fine. Quite comical really. The harder I tried the less the voice would come out; even as I consciously relaxed somehow being on the phone makes speaking, like conquering Everest. Someone was at her door so she had to go, thank God!

Shopping was also amusing. Thankfully my mother-in-law is staying with us for Christmas so we set out to the shops together. I didn't expect it to be easy but this is a good strategy having someone with you that you can rely on. The first problem was ordering the seafood for Christmas, there was no way my voice was working when I needed to place my order over the huge, tall counter. Mother-in-law steps in and places it for me, I point to my throat and indicate that I have laryngitis. People are so nice about accepting this simple explanation, it is far easier than telling them the truth.

It's working

I entertained family and a friends for afternoon tea and during the course of the afternoon my voice became erratic, sometimes high sometimes low, unpredictable, but that is fine because I know that at least the Botox is taking effect and a better voice is coming through. The only difficulty becomes making long distance phone calls to my mum on the other side of the country as her hearing is not the best, our telephone line is usually not good and of course on top of that my poor voice makes for a very frustrating phone call. I'll give her a call tomorrow!

New Voice and Meditation

Waking up on the first day after the injection of Botox I wonder what my voice is going to sound like today. My partner is already out and about so I have no one to test my voice on; I am tempted to say something out loud just to see what my voice is like, but I don't, there is hesitation and a slight fear that maybe today it is weak and wispery, maybe more than I have experienced in the past or perhaps it is crackly and hoarse sounding. I decide to go and meditate for an hour; I use Holosync meditation tapes that are just amazing.
Many years ago when attending the school of Philosophy I began meditation which involved using a mantra. I continued the practice for five years and found that meditation is definately the way to go, it gives you control over your life, a calmness and peace of mind. If you are not a disciplined person then it is something that will require extra effort just to get into the habit of establishing a set routine of allocating time to yourself, other than that it is not too difficult. Everyone can benefit from sitting still, taking time out! Holosync makes the meditation process really simple, no need to repeat a mantra, just put on some headphones and listen to the beautiful sounds. It doesn't matter if your mind wonders. It is magic!
Back to the voice; later in the morning when my partner spoke to me, I had forgotten all about being somewhat anxious about how I might sound. It was only in the course of the morning that I realised that my voice is sounding stronger, it is occasionally a bit crackly but I'm excited about the new voice that is emerging. No side effects. A couple of times in the past, the day after the injection I had felt like I'd been hit by a bus but it only ever lasted the one day. Today I am feeling really well:)

Injected

I was a little bit anxious about today's injection because the last one I had six months ago did not seem to do anything and I was concerned that the dosage would be increased. Fear of the unknown! However the doctor told me today that sometimes the strength of the batches of Botox vary and that he would administer the same dosage; I was happy with that. The sensation of having the injection varies every time! After the initial slight stinging of the local anaesthetic the entry of the needle is not a problem however what I could feel today was the actual liquid dispersing into the muscle, just prior to that is was a little painful not on the surface but within the throat. I tried to remain detached from the feeling of pain but rather watched with detachment and curiosity as to what I was experiencing. As soon as pain was felt I shifted my attention to other things like a pleasant memory of walking the dog then moved my attention back to what was happening, again with curiosity as it was different from the previous injections. The doctor was happy with the way it went and it was all over within five minutes. The immediate result was a higher pitched but crackly voice so this time it is certainly doing 'it's thing'! I'll keep you posted as to what effect it is having on my voice.

Tomorrow I have my 8th Botox injection. Being a teacher I prefer to have the injection at a time that doesn't interfere with my work therefore whether I feel I need to have the injection or not I choose to prepare myself for a better voice during holiday time. If there happens to be any short term side effect, of which so far there have been almost none, then I have time to recover prior to going back to work.
As a child I had quite an aversion to having needles especially from the dentist however I overcame it through the necessity to repair my decaying teeth. In my late teens I went to a dental hospital for a huge amount of dental work and simply had to succumb to the process of being injected with local anaesthetic. I found that simply accepting and having faith that it was for my own good and relaxing,allowing the dentist or in this case the doctor do what they are qualified to do best, that the time would pass easily, without trauma. If you have a fear of needles, prior to being injected, it is best to avert or close your eyes and focus on a pleasant thought or just anything that distracts your mind from the situation at hand. Relax and breathe slowly, meditate if you are able, be thankful that you are in good hands.

I had my first Botox injection in 2004 but it was 10 years prior to that when I first heard about Botox being used to treat SD. My speech pathologist referred me to an Ear, Nose and Throat specialist who made me aware of the treatment using Botox. The purpose of my visit to the ENT specialist was to ascertain whether I had throat cancer. My voice wasn't too bad at that time and I did not like the idea of being injected with a toxin so I totally dismissed the idea of using it. Years later when the quality of my voice deteriorated I began seeking alternative therapies.

Early days of SD

When I was in my 30's and well before I was aware of SD, I was singing in church, as part of the congregation and while I was holding a note, the sound just cut out as if a switch had been flicked, then it resumed exactly as before. This was really weird and had me bemused, again I don't know if it had anything to do with the oncoming SD. It wasn't for another ten years or so that I noticed my voice was changing. I would be talking to friends and my voice would get lower and it became increasingly difficult to speak. I went to a General Practioner (doctor) at this stage and he told me to stop talking for a while and give my voice a rest, he said it was voice strain. Needless to say I wasn't convinced by his diagnosis and this was just a little incident that contributed to my loss of faith in the medical profession. When many years later I was diagnosed with Spasmodic Dysphonia I looked at a variety of alternative therapies hoping to heal myself.

Being a quiet talker doesn't necessarily mean that you have SD but isn't it annoying having to repeat yourself!

Spasmodic Dysphonia (SD) is a form of dystonia characterised by involuntary muscle contractions. Dystonia can affect the eye (blepharospasm), the neck (spasmodic torticulollis) or the hand (writers cramp). I have 'adductor'-type SD ie the involuntary closure of my vocal chords results in a strained, strangled quality of voice. My doctor told me that it takes as much effort for me to speak as it does to cough. That's quite a lot of effort when you think about it, however you get so used to it that you don't realise you are making an effort. A rarer type is 'abductor' SD where the over contraction of the muscles open the vocal chords and causes intermittent breathiness and a forced whispery voice.
After having a Botox injection some people have a whispery voice for a short period of time, I've been lucky, so far I've only had a breathy voice for about a week.

I first realised that my voice was different when I was quite young, I was about 8 or 9 years of age. My brother, who has a great singing voice and I would sing together and I wondered why my voice was so weak and ineffectual compared to his. I dont know if this has any relevance to SD but I wonder if others with SD have similar recollections about the quality of their voice as a child? As a child I had no trouble speaking but I was fairly shy; I used to hate having to ask for things over the counter at the shops mainly because of being shy.
Buying goods over a counter is something that can be very difficult for sufferers of spasmodic dysphonia. Prior to Botox this was something thatI did not enjoy doing because I never knew whether the shop assistant would have trouble understanding me. It is easier to buy goods from the supermarket aisles and cabinets rather than stand in a queue at the deli counter hoping to have a good voice come across. Although since having the Botox treatment I must say that I do not hesistate to use my voice like I did before the Botox.
If you have SD that is not being treated it is best to do your shopping during quiet times as you will notice that background noise just makes the situation more difficult!

My first post on Spasmodic Dysphonia

I'm going to have another Botox injection next week. I'll tell you all about it.