Another new forum member.

[Ant]

First of all, thank you for this forum. You are a fount of information for me, and the unexpected support we all need.

My husband has been having noticeable problems with his speech in July 2021. We started seeing a neurologist in October and now in March 2022, we are still waiting / looking for a prognosis. My husband has had all the possible tests you can imagine and more, and all results are good. There is no indication of anything, apart from his dysarthria and dysphagia, so we (personally) think it’s something like Bulbar Onset ALS or Isolated Bulbar Palsy (which is just as miserable as anything else). The neurologist is very slow moving, does not want to commit to anything and, at our instigation and research, he’s indulging us to continue with more (other) tests. We are in line to see another neurologist in June, not for a second opinion, as we don’t have a first one to start with, but for a transfer.

To get ahead of the game we are researching anything and everything and I have two questions for the forum; we are a bit ambivalent about voice banking; my husband doesn’t think he will use it, because of the artificial aspect. He can still talk reasonably well, but we message a lot at; he writes, I talk.
How does it work in reality for voice bank users when you are in an unfamiliar situation and don’t have the answers or questions ready available?
Are there forum users that don’t use voice banking by choice? How does that work for them?
A different (minor) issue is that we are bilingual, does anyone have experience with bilingual voice banking? Or would you use two different systems?

Another question is feeding tubes; I’m aware of the different feeding tubes, but are there quality differences as well? Can you choose the Ferrari, or are they all Fords?

Thank you in advance for your input.
We remain happy and are making the most of our silent partnership.

Ant.

[Ellie]

Hi Ant,

Has your husband had an EMG test yet?

We are in line to see another neurologist in June, not for a second opinion, as we don’t have a first one to start with, but for a transfer.

Is the Neurologist in June an MND specialist, if not, can he get a referral to one?

How does it work in reality for voice bank users when you are in an unfamiliar situation and don’t have the answers or questions ready available?

Voice banking takes a person's voice and, by recording set phrases, turns this vocab into speech components capable of turning any text into speech so, when a person needs to 'speak', they type what they want to say on an App or screen, press a button and their device speaks the text.

Are there forum users that don’t use voice banking by choice? How does that work for them?

Voice banking wasn't around when I needed it. I use the text-to-speech voice in Windows, works a treat.

A different (minor) issue is that we are bilingual, does anyone have experience with bilingual voice banking? Or would you use two different systems?

I think 2 different recordings but not sure.

Another question is feeding tubes; I’m aware of the different feeding tubes, but are there quality differences as well?

They are medical devices, subject to stringent testing and regulation - one brand is on par with the next. Often hospitals will just use one or two brands and which tube is fitted may depend on the anatomy of the stomach.

[Ant]

Hi Ellie,

Many thanks for your answers.

To answer your questions; Yes, my husband has had an EMG, and everything looked normal. He's scheduled for another one shortly.

Apparently both the neurologists are familiar and/or specialized in MND cases. We can possibly get another referral, but would have to travel over 5 hours for that, so all things considered that does not have our preference at the moment. Perhaps at some time in the future? Who knows.

Ant.