Get text-to-speech organised early

[Barry52]

Hi Tilly,

Don't try to rush your recording. Stick to 100 phrases per day, preferably in the morning when our voice is generally better. I was also a bit late in starting but the end result will still be you and remember you can change the speed and pitch on the app.

Barry

I'm voice banking like a maniac. Shocked at the speed of my voice,s deterioration. Didn't know it could happen so quick. Wish I'd known and banked my good voice rather than my impaired one.

[Terry]

Well done JRCat;

Nice to know it works for people.

Love Terry

I got Rose to do it long before the medics mentioned it. We did it just in time I think. So like so many others, my advice is do it early. We used Modeltalker and Precitable but also have the voice on her Windows 10 PC.

[Barry52]

Hi all,

I raised the issue of advising people with MND about voice banking when I went for my check up yesterday. The neurologist said that the person diagnosed has a lot to take in, apart from the shock factor and it is only when they indicate an interest in improving quality of life with the disease (which is often several months later) that the department will raise the issue of recording your voice. So the lesson here is read the forum and make a list of questions for the medics.

Susan

I am doing the whisky trail with a friend in July. Enjoy.

Barry

That is really impressive Bob. I just used a headset we already had (thanks to son and husband playing games on the PC) so couldn't really donate it without causing dismay to my family but I love the fact you did it.

I must have used patient somewhere else as it wasn't in the post above yours. I do know we are outside the proper use of that term but I don't actually mind it as I can't think of a better alternative.

Joyously, I am off on a distillery tour with my daughter today (part of the spirit of speyside festival!) - I don't much like whisky but am excited all the same, even with my dodgy voice.

Susan,
I donated my (new) microphone headset to the Speech and Language Therapy Dept. The bureaucracy is such that they were unsure if they could accept it as a gift (I did disinfect the microphone before repackaging it). In the end I think it got straight to someone newly diagnosed with MND.

I avoid the word 'patient' as I do not consider myself a patient. That suggests someone in need of medical intervention, and for us that is not really the issue. Our current level of knowledge puts us, unfortunately, outside of the proper use of that term.

My best wishes to you.

Bob

Hi Bob

I couldn't agree more with all of that. As I was diagnosed with bulbar onset in November I wish I had been told about voice banking then. I actual fact I only discovered about it thanks to someone on here and didn't start recording with modeltalker until January. As you say, it is easy and the company are incredibly helpful. I had to get them to change a few things for me (like the name of the place where I live) and they were very happy to do it and wanted to check I was happy with the result. My voice would have sounded a lot better in November, not right but definitely better. However, I did manage all 1600 phrases and I do have my own voice to use. I have been telling everyone that bulbar onset people should be told as soon as they are diagnosed if their voice is good enough. It would have made such a difference.

I am so pleased to hear you have your own voice to use too.

Update on Model Talker 2.
Having tried other voice creating software and found them difficult to manage, I was very pleasantly surprised by the ease of use of Model Talker 2. It was easy to access the required ten introductory phrases, and I got a very quick response from the company to say I had satisfactorily completed that part of the application. The hard work then started to record 1600 phrases into the headset microphone. Each time you start recording you need to recalibrate the microphone, but this only takes a minute and is straightforward. The screen layout for the phrase recording is easy to understand. There are indicators for volume, pitch and pronunciation (each showing green, amber or red for satisfactory input). You are warned in advance that it might take eight hours to do all the phrases, and that is about right. I have a slight lisp anyway, and where I failed to get my pronunciation to meet the criteria of the software it was often because of my lisp that caused the problem, rather than my deteriorating voice . I just skipped the phrases that it would not accept after three or four attempts. In the end I got about 1450 out of 1600 phrases successfully loaded.
It took two hours to download all the phrases back to the company, but they responded in 24 hours with the download of my own voice. It was easy to download the software, but you have to uninstall the previous version first.

My family tell me it is my voice, but I think it sounds much degraded. My voice sounds poor because it always sounds worse to the ears of the individual. We are not used to hearing our own voice. It is, however, also poor because my voice has degraded a lot in the past six months. I should have been told about this much earlier, and got the recording done as soon as my (bulbar onset) diagnosis was confirmed. So, it works and it is easy to use. I feel more comfortable having completed the chore of recording many many phrases; it was tiring, but well worth it.
Bob

[Terry]

Thanks Nettie and John,

I will have to start doing more.

Love Terry

Terry/John.
I didn't use oils as Trevor had a thing about oils and such ... just hated them which was a shame.
I just gently sort of stroked the fingers gently pressing the joints a bit, as flat as they'd go without over doing it.
As for the finger straighteners. Orthotics was the word I was searching for! Thanks for the memory jog John. The physio referred Trevor to them.
Irene's finger straighteners sound a bit like the system Trevor had for night time.
The fingers stalls were for daytime use mainly
They might best be called straighteners too but they weren't like the night time ones. They were little tubes, cut to size and provided in different diameters for different fingers. They were made of a sort of firm fabric which was pulled onto the finger.
The fabric was just slightly stretchy but not too thick so the fingers could move individually. It held the fingers fairly straight. Good for "Ipadding" the forum!
X Nettie

Could be worth getting referred Terry if the curling is starting to cause you difficulties.

Hi Terry,
Irene had a trip to orthotics who measured for and supplied finger straighteners. Irene wore these through the night and they consisted of Velcro straps on a board which forced the fingers to remain straight instead of curling through the night. Seemed to work and were not painful nor did they keep her awake. She also had aroma therapy oils which were massaged into her hands by myself and carers. Very relaxing and will leave your hands lovely and soft!

John

[Terry]

Thanks Junior;

Did you massage with any particular oil etc and what are finger stalls?

My hands have been getting worse slowly for ever but I have found them to be a problem over the last 12 months. I do stretch them more now but like many men I tend to be a bit lazy and should do more.

Love Terry

Terry, can physio give you tips to slow down the finger curl?
One way is a massage that gently straightens the fingers ... best demonstrated.
Trevor had some finger stalls "made to measure" by physio department too.
Again, these slowed things down a bit but did help to hold the fingers straighter so typing was easier. I think he often wore them at night too. They just helped to tell the fingers what shape he wanted them to be!!!
Seems strange giving YOU some tips. I hope you don't mind and I hope some it helps.
We need your posting!!
X Nettie

Morning everyone, and thanks for your feedback. Spoke with my Speech Therapist yesterday who suggested ModelTalker. I was initially frustrated by not getting it to download, but after asking for help from the company (contact us page) I was advised to download the 64 bit version, not the 32 bit version that is first presented. (It seems this is a matter of 'choice architecture' that can be addressed by them.)

I'm happy to report I have just managed to get 9 out of the 10 trial sentences recorded to sufficient quality for them to review it further. This is very satisfying, but again, it would have been better if I had done it three months ago.

The speech therapist was looking to get a grant (possibly from the MNDA) to pay for the headset (I chose a Creative Chatmax H720 at Currys for£29.99), when I just went out and bought it to save time.
Onwards.
Bob