Two things people often wait too long for

[Nikki J]

Feeding tube and voice banking. Some people have no opportunity for these I know. Especially bulbar onset and voice banking. A lot of people though delay and then suddenly find it is too late to bank and the feeding tube if not too late is a lot harder than it needs to be.

if you care about voice banking start now. Not everyone cares. But if you do it is a lot easier before your voice starts to go I know a lot of people though who always meant to, never did and regret it.

the time for a feeding tube is either the first time the neurologist says so or if they haven’t yet but your weight is dropping or if you are struggling to maintain or choking or coughing. Also if your svc is dropping and your neurologist isn’t suggesting ask.

A lot of people struggle with doing these things and some people don’t want them ever but if you are saying not yet please reconsider

 

[lisa g]

Your right Nikki, timing is everything. When I first started noticing a change in speech I immediately banked my voice for future use. I can still speak at this point but slower. I've been told that I can still be understood without issues but I can hear the changes. The process is so easy I urge anyone to do it now, you'll be happy you did when you need it.

The same goes for a feeding tube, if you feel any issues with choking and coughing while trying to eat its time to talk to your neurologist about having it placed. It relieves you of any anxiety at mealtime trying to swallow. It will also aid you in maintaining your weight which we know is so important.

 

[Bestfriends14]

My husband waited too long for both. He kept refusing and now it's too late.

 

[Nikki J]

So sorry bestfriends. Unfortunately it is common as we have seen here I made this post in the hope that at least one or two people might be influenced. I should add for those who regret not voicebanking sometimes a sibling or other close relative can record for you and maybe it will sound a little more like you than stock voices though sounding like your sibling might be creepy. I didn’t run across this idea to suggest it to my sister. I am not sure if she would have wanted it or not.

 

[affected]

So true Nikki, I am supporting another Australian CALS whose PALS is now in palliative care experiencing refeeding syndrome. Leaving that peg or rig til things get bad can really cause issues.

 

[old dog]

What is SVC? I don't remember seeing that term.

 

[affected]

@old dog it will have been FVC forced volume capacity

 

[Nikki J]

Svc is slow vital capacity which most clinics use now. Fvc is when they have you blow out breath as fast and strong as you can. Svc is letting it out without forcing but for as long as you can. I can remember doing fvc when I first started studies and the clinic but they changed to svc a number of years ago. I was told it was a better measure for clinic use. I think it is in general use. If you look at trials with respiratory cut offs they say svc

 

[old dog]

Thank you. I'm not keeping up with things as I once did. I'm excited that there are so many new developments that may help some PALS, especially those recently diagnosed, but have given up the hope that anything will come along to help me as an individual. I concentrate on trying to maintain good general health and strength.

 

[affected]

oh, thanks Nikki, I learned my thing for today!

 

[MJT]

Thank you, Nikki. I hope everyone has a peaceful day.

 

[Dwest]

What is voice banking?

 

[Nikki J]

Voice banking is recording phrases that can be used later with eye gaze or other communication method so it is your voice rather than a generic one. Traditional voice banking takes a lot of work and it can be hard if your voice is already affected. There are other methods now that take less work but it is always best to do it when you sound as normal as possible.

 

[EricInLA]

As I understand it there are two types of voice banking. The first is you say a bunch of phrases (like 100 to 500) into a computer program and then the program uses that to generate a voice that actually sounds just like yours. You can then type (through whatever method, eye gaze, etc.) and the computer will say it in your simulated voice. The second type is you can say specific phrases into a recorder and then you have your actual voice saying something specific, like endearing greetings to loved ones, so you can trigger those later on when/if you lose your voice.

I procrastinated on these for a long time - it seemed so incomprehensible that I could actually lose my voice - but finally got around to doing the first one a couple months back. The Team Gleason program was very helpful in that regard. I haven't done the second one yet, which IMO is less crucial but can still be nice to have. My voice has been getting a bit raspy lately, so I'm glad I got at least the first one done.

 

[Nikki J]

They can use fewer recordings and get something out of them not just repeating phrases ( which is called message banking I believe) I am a little hazy on all the options. Anyone really interested should look up John Costello at Childrens Boston there are videos on the childrens website,he has spoken on a number of webinars including everything als. I know they have a youtube channel. I am told childrens does remote consults if you don’t have a decent program near you