Hello to everybody

[Lynne K]

Hi Ellie. Much appreciated advice. Thanks x

[Lynne K]

Thanks Terry and Chas. I'm going to do the voice banking myself. My speech therapist said to do it in manageable chunks, not to keep going if I feel tired as my voice recording would be affected. So I'm going to download the programme tonight and perhaps start tomorrow morning

[Terry]

Hi Lynne;

Don't rush too much. You need a good head mic and a quite room. I believe Owen done a good video on the subject but I can't find the link.

What program are you going to use?

The Mnda have head sets and might pay towards the costs. Involve your speech therapist as they will help if you get any problems and should provide the equipment if you need it later.

As for work, see what options you have as regards to working less hours days etc.

Love Terry

[AndyB]

Hi Lynne

Glad you didn't hurt yourself and some one was around to help you up. One of my biggest fears is falling and there being no one around to help as I really struggle with my legs now.
I have banked my voice during the last 12 months just in case, though my throat is not currently affected.
I'm still working, though I've been off sick for the last 6 weeks as it's all getting a bit difficult. I'm hoping to try working from home to see how that goes, otherwise I'll have to retire a few years earlier than I had planned for.
As for the disease progression, I seem to have spurts in deterioration and then it seems to settle down again, but obviously I'm slowly getting worse. I agree with what Terry says that when things deteriorate you adapt to the deterioration such that you think the progression has slowed.

Best wishes Andy

[Lynne K]

Thanks Andy and good luck with working from home. As I'm a driving instructor I cannot do that at home but wonder what else I could manage. Terry my speech therapist recommeded Model Talker 2. I haven't downloaded it yet but will when I get the time. My husband is a musician (retired teacher of sciences and IT) and he records live music and works on it at home. He said that he has a decent mic and separate headset that I can use. He's going to set me up in our quiet back bedroom that I have a desk and all my knitting machines and yarn in. In case you are wondering I haven't done any knitting for ages and don't know if my week right hand fingers can manage it but I'm going to try soon because one of my family is expecting and it'd feel good to do some baby items.

[AndyB]

Lynne, I used ModelTalker, I didn't have to download anything, just set up an account and record it online. There is now a charge of $100 for those registering after July 2016, it was free when I started my recording. It took me many months but that was partly because my voice was (and still is) unaffected by the illness so I just took my time. My wife tells me that it really does sound like me, so I think it's well worth it. Not much fun doing the recordings though. 1600 sentences have to be recorded and some of them you have to keep repeating until the recording is good enough. Have fun .

[njm]

Andy:
Like you I used Modeltalker the moment I was diagnosed. I recorded it and stored it. That is 4 years ago. I now want to experiment with it and use it in select settings.

What equipment do you use?
I have not downloaded it onto any app.

Please advise.

Charles

[AndyB]

Hi Charles
I haven't downloaded my voice from ModelTalker yet. What I have done though is type in a few trial sentences within the MT online software to see what it sounds like. When you hear your own voice it often seems nothing like you would expect which is why I asked my wife for her opinion and she said it sounded just like me.

There is an app for the iPad called Predicable which is the one mentioned in the voice banking guide written by Lee Milward ( Onein400.files.wordpress.com). This is the one I will buy as and when I need it.

Andy

[Barry52]

Andy and Charles,

Please don’t pay for the app as under statute, the NHS is obliged to provide communication equipment and this includes a communication device and app. You need to involve your SLT to get the ball rolling. They gave me an iPad and predictable however you can’t use their equipment for social media and other apps so I persuaded them to load the predictable app onto my own iPad.

Best wishes,
Barry

[njm]

Barry:
Thanks. I am with you on this. problem I have is the SLT told me they will fund it but I am not ready for it. Meaning I can still talk intelligibly. However I want to get ahead of the curve and want to experiment with it in certain settings. So I am looking to funding myself so I can get ahead of the curve.

Best

Charles

[Doug Carpenter]

Hi Lynne
Welcome to this fantastic community of very kind and knowledgeable people that is this forum. In the brief time I’ve been around I’ve found it immensely helpful.

Apart from the obvious, a big problem with MND is its variability. Particularly if yours progresses slowly, you may find it helpful to keep track of your ALS functional rating score as an objective measure of your condition. Otherwise, we all tend to forget what things were like in the past.

A handy form of the latest version (ALSFRS-R) can be found at:

http://www.outcomes-umassmed.org/als/alsscale.aspx

You mentioned voice banking and Riluzole. Model Talker is certainly the way to go, if you have good recording conditions.

Trials have shown that Riluzole can have a small beneficial effect. It is widely tolerated, but your medics will probably want monthly then three-monthly blood tests to monitor liver function.

Below is a re-post of something I found recently about past Riluzole trials:

Just came across a rather lengthy paper that is a review of Riluzole trials up to 2011.

The link is: http://onlinelibrary.wiley.com/doi/1...01447.pub3/pdf

The main conclusions are/were:
A U T H O R S ’ C O N C L U S I O N S
Implications for practice

Riluzole 100mg daily probably prolongs median survival by two to
three months in patients with probable and definite amyotrophic
lateral sclerosis with symptoms less than five years, forced vital
capacity greater than 60%and aged less than 75 years. More studies
are needed, especially to determine whether patients treated earlier
or older, more advanced patients with longstanding disease derive
the same benefit. Benefits are not apparent to individual patients.
The most frequent side effects are nausea and asthenia. Liver function
becomes altered and requires monitoring.

Implications for research

Future trials should examine the effect on quality of life, functionality
(ALSFRS-R), and in different subgroups (for example,
more severely affected and older compared with mildly affected
and younger patients). Data from all clinical trials should be made
available to the scientific community. Genotyping in future trials
might be useful to analyze the heterogeneity of responses to therapy.

All the best for 2018.
Doug

[Barry52]

Barry:
Thanks. I am with you on this. problem I have is the SLT told me they will fund it but I am not ready for it. Meaning I can still talk intelligibly. However I want to get ahead of the curve and want to experiment with it in certain settings. So I am looking to funding myself so I can get ahead of the curve.

Best

Charles

I don’t blame you for that Charles. We do our best to stay one step ahead of this disease and as ever the support services are 2 steps behind.

Barry

[AndyB]

Andy and Charles,

Please don’t pay for the app as under statute, the NHS is obliged to provide communication equipment and this includes a communication device and app. You need to involve your SLT to get the ball rolling. They gave me an iPad and predictable however you can’t use their equipment for social media and other apps so I persuaded them to load the predictable app onto my own iPad.

Best wishes,
Barry

Yes, thanks Barry, I've been told I should get some funding as and when required, but as Charles has said it's best to get things in place before they are needed.

Best wishes Andy

[njm]

Barry:
The way I cope is to try control what I can.
I have an IPad.
How do I purchase the Predictable app?
Where do I get it and what does it cost?

Best

Charles

[Terry]

Hi Charles;

https://www.therapy-box.co.uk/predictable and around £200.

Love Terry