December, 2003
The words nearly jumped off the screen as I read them:
The voice amplifier is a small portable aid that is worn on the body. It is useful for people who have quiet speech ... Only outgoing breath, such as a whisper, is necessary to enable the voice amplifier to provide amplification.
And then, a little further down the page:
Anyone who has a very quiet or weak voice may be an appropriate user.
At the time, I was reading the web page of 'Technical Solutions Australia', a company that provided aids for people with different types of disabilities. They had everything from toys for kids who were paralysed, to little tiny keyboards that spoke what you typed into them - for those without the use of their voice. I had just been looking because I found the different gadgets interesting to look at though. I'd never expected to find something that I might be able to use.
My CFS had been full-blown for ... umm ... it was 2003 so that made nine years now. It had been getting worse the entire time too, and I was bedridden 99% of the time now. More to the point, for the last year my voice had been getting softer and softer and softer and softer, the sicker I got the softer it got - and it was worst on days I was crashed so I imagined as I kept getting sicker it would keep getting softer too. It scared me, not to be able to be easily heard.
That web page set my imagination off and running though ... could one of these voice amplifier mean that I could make myself heard without feeling like I was yelling? Could it mean I could use a hands-free telephone, so I didn't have to crick my neck turning to squeeze the handset of my voice-amplifying telephone between the pillow and my ear to have a phone conversation? This sounded exciting! I turned back to the screen to read the rest of the entry carefully, and study the pictures of the little gadget.
13th of February, 2004
Let me flash forward a few months ... it's the 13th of February. Friday the 13th of February. The luckiest Friday the 13th I had ever had, actually. There were two men beside my bed, an occupational therapist and a speech pathologist. They were from ComTec - the computers-and-electronic-gadgets section of Yooralla - and they were assessing my voice to see if a voice amplifier would help me, and about if I would be able to use my holy grail of the hands-free telephone.
I don't remember what they did that day, but I remember them deciding that a voice amplifier would help me and then explaining that I could get one on a free loan for as long as I needed it from the Victorian Aids & Equipment program! The only catch was it would take 3 months or more to get to me. But I wasn't too worried about this, over a hundred dollars worth of voice amplifier for the price of a 3 month waiting list seems like a tremendous bargain when you're on a pension.
8th of April, 2004
I got my voice amplifier today and it's working perfectly. I'm totally thrilled with it and I can't wait to get my hands free telephone now so I can have lots of non-stressful and much-less-painful phone conversations too! No more neck strain yay!
The little microphone connects to my glasses and sits neatly at the corner of my mouth. The occupational therapist who came to deliver the voice amplifier to me wrapped a wire around the microphone cord to give it some strength and so it'd stay put instead of flopping around. It's much neater than a headset would be, and won't give me the headaches that the pressure of a headset does.
It's so cool! Yay for me!
15th of April, 2004
Making friends with my voice amplifier is being a very interesting journey emotionally - getting used to such a "personal" piece of equipment, in terms of being inside my personal space. Having a microphone trailing from my glasses frame down to the corner of my mouth, occasionally bumping a lip on it, being tethered to the little amp/speaker box ... it's all very new and has been at times very strange.
When I first got it, and discovered I could actually TALK LOUDLY or YELL for (or at!) somebody I was thrilled. It was something that gave me back something I'd lost.
But in the first few days after that, when the initial thrill wore off, it felt bad for a while. The wire on my glasses kept coming adrift, making the microphone unsteady. It kept getting in the way of things. I don't yet have the hands-free phone which is going to be so useful with it (should be here in a month or so). It seemed for a while like it was a lot of trouble for no gain.
No gain? Unfortunately I got myself into a full-blown case of denial. I kept telling myself that there wasn't any point to having the voice amplifier, that I didn't need it, that I could talk perfectly well to people without it. And I can talk to people perfectly well without it ... as long as they're within 2 metres of my bed and not over the other side of the room, or in the kitchen, or further away.
I had even convinced myself that I should give the whole thing back so it could be distributed to "somebody more deserving". The only thing that stopped me was that I remembered getting used to other disability equipment had been hard too, so I pledged that I'd keep it until at least a month after I got my phone, to give it a chance. But privately, I was convinced it was totally unnecessary and useless and horrible and I would be giving it back when that time was up.
But then I got brave and completely rearranged how the wire on the microphone cord attached to my glasses. I also figured out a way to get the microphone to sit rock-steady at the corner of my mouth and suddenly the microphone stopped being a problem and started being an asset. I began to appreciate that this microphone is lots less nasty and intrusive than wearing a headset would be and I'm lucky I thought of this method of attachment. I am getting used to used to taking my glasses off if I was moving away from the amp box, or picking the box up and bringing it with me. It's not that hard, really, it's only a little dinky thing.
Then, all of a sudden, it hit me that something had changed a lot ... previously if I wanted something from a carer, I would gather my energy/effort and call their name as loud as I can, then wait until they came over to me before I told them what I wanted.
Now, so naturally that I wasn't even faintly aware of it beginning, I had started talking to people who were further away. I had started to say, "Hey, would you get me a coke in that green mug and toss a few ice-blocks in and bring it over, please?" instead of just yelling out, "Curly!" and waiting for her to come over, which saved her an extra journey to my bedside as well as being more fun. And I had started having conversations with carers when they were over the other side of the room, or in the kitchen. I had actually even started to chat to them while they were doing stuff!
After I realized that my voice amplifier really, honestly, did give me more communication options - more times I could talk to people - suddenly it was my best friend! Suddenly I noticed all the times it made things easier. Apart from talking to carers, and the anticipated telephone, there were other things too ... When there was somebody at the door and they didn't read the instructions there to enter immediately, I could call, "Come in!" When a carer was vacuuming in another room and I needed them urgently, I could yell loud enough for them to hear me and come to the rescue. This device was neat!
So I've made friends with my voice amplifier. I still notice the microphone in my peripheral vision a bit, sitting along my cheek - but then I noticed my glasses rims acutely too when I first got my glasses, and I never see those now. I still need a longer bit of wire to fix the microphone even better, but that just needs a carer to take a trip to a good hardware store with a few dollars. I still occasionally forget and pull my glasses abruptly off myself by moving to the end of the range of the cord without picking up the box, but that'll become an automatic thing too.
It's good for yelling at Thomas when he's bad, too. He's bad a lot.
*grin*
16th of April, 2004
I am going to get some longer and slightly stiffer wire to attach the microphone to my glasses so it doesn't bend quite so much. I think having a whole roll of wire so I could re-do it as often as I needed would be very helpful. I keep figuring out better ways to wind it but I can't re-wind it with the same wire because it's getting all weirdly bent.
It's amazing how important it is to have the microphone wired exactly how I want it wired and to get it perfectly rock-solid. If I had've known that at the start I would adapted faster to the microphone instead of spending time with it waving all over the place.
At the moment, it looks like this:
(please excuse the acne - it's simply yet another un-fun CFS side-effect).
21 April, 2004
Ack! I lost the little bit of black foam that goes over the end of the microphone. Now it's picking up all sorts of bits of my breath every time I try to say anything and although it's still usaable it's harder for people to understand. Silly me, the little bit of black foam had fallen off about a million times since I got it and every time I put the damm thing back onto the microphone I thought, "I should glue this on," but I never got around to it. That'll teach me.
I wonder if you can get a replacement for it. I have emailed my OT from ComTec to see if I can indeed replace it, as I have had my carers look positively everywhere for the scrap of foam and it seems uncannily elusive.
2 May, 2004
After a very smart suggestion from a friend, a small piece of sponge is now doing double-duty on the end of the microphone to cut down on the breath noises you get without any foam on the end. Works like a treat although I probably look a bit silly with a bit of blue and white striped "Chux super-wipe" on the end of my microphone.
Actually, I totally don't care! It works and I love it. Being able to talk to people who aren't right by my is much more important to me than how silly my bit of blue and white Chux might look! Voice Amplifiers forever!
Conclusions
I'm currently analysing the results from the CFS Severe Symptoms Questionnaire. One of these questions was about voice volume, luckily. My research shows that over half of the CFS population have some type of trouble with the volume of their voice - and this includes people with all different severities of CFS from mild to very severe!
This means that spreading the word that funded voice amplifiers are available to people in the CFS community is a vital thing - it's something that will help many people with CFS. To be helped by voice amplifiers, people have to know they are available and that they can be extremely helpful and useful. I hope this article is a good first step to disseminating that information
Postscript - December, 2004
I have had the voice amplifier for more than six months now and I still use it nearly every day. Some days I am so sick that I don't even put my glasses on because they hurt my ears/nose too much, so those days I don't use the voice amplifier, obviously. I alternate as to whether I use it to make handsfree phonecalls - it depends how much my arms and neck are hurting (handfree is better if they are) and whether there's any background noise (handsfree is worse if there is).
The voice amplifier is most useful when I want to have a conversation with somebody who's further away than beside my bed. I don't need it for beside the bed, but if the carer is moving around the house, cooking, etc., then it's wonderful. For yelling to somebody at the front door to "come in", it's absolutely vital!
I'm very glad that I got the voice amp. If it broke, I wouldn't hesitate to get it replaced.
Appendix - Contacts for Melbourne, Australia
These are the places who have helped me most in my voice amplifier quest. Technical Solutions sells voice amplifiers "off the shelf" in several different models, and provided the one that I got through the funding scheme. ComTec assessed me and applied for the funding for my voice amplifier sos I didn't have to pay anything.
- Technical Solutions Australia
- Phone: (03) 9737 9000
Fax: (03) 9737 9111
Email: inquire@tecsol.com.au
Website: http://www.tecsol.com.au - ComTec
- Phone: (03) 9362 6111
Fax: (03) 9314 9759
Email: comtec@yooralla.com.au
Website: http://www.yooralla.com.au/comtec/
People not in Melbourne, Australia will have to find their own contacts, although I suggest that Technical Solutions may well know where to point you.
