Speech Devices

[Nav1990]

Hey all,

I'd like to start by mentioning how glad I am that a community like this exists out there. Reading stories on this board somewhat comforts me. Both the perseverance of many of the posters here in fighting this disease and their optimism is incredibly admirable.

So, before I get to my question, I think it'd be good if I filled you in on the background of whats happening.

My mother first started complaining about her voice and slurring around December 2011. She's on a cocktail of drugs and was at the time prescribed a few new ones (I don't recall their names) and so naturally, my father and I attributed the cause of difficulty to the new treatment.

Months passed, and it got progressively worse. She began having trouble swallowing and it got bad enough that our family doctor just told us to take her to the hospital to see a neurologist asap since the wait times to see one by appointment here are ridiculous. So we went, and she stayed there for 4 days in the emergency while the team of neurologists conducted a battery of tests on her (EMG, spinal tap, EEG, multiple MRIs/fMRIs, blood tests, etc). The tests all came back clean but they said her speech would not return and that there was a chance the condition would get worse. The lead neurologist scheduled a follow up appointment with my mother that is coming up later this month.

I was originally panicking and was devastatingly depressed for the 2 weeks that followed. But I eventually rationalized my emotions and decided to let the doctors do their job instead of assuming the worst case scenario.

So I waited it out, and now my mothers voice is barely comprehensible. I really have to struggle to hear what she's saying. She drools at night a lot too and I've noticed that she can't contain her emotions as well. She's laughing at things she normally wouldn't laugh at and cries very easily now. She never used to be like that. I can barely remember a time where she's cried from my childhood. But now whenever my uncles/aunts or other relatives call she bursts into uncontrollable tears. Just today, she began crying excessively over a very minor/petty disagreement with my sister (they always have those, and they're usually a lot more serious too, so for her to break down over that really got to me).

My mother is 54 years old. I'm 21 and have an older sister + younger brother. None of us really know what to do from here on out and I don't even think my siblings realize what the condition could progress to. My father was laid off earlier this year and our drug coverage is up too. Our family doc advised we get insurance asap so my father looked around at different insurance companies but none of them really cater to our needs.

My mother hasn't received a formal diagnosis yet since the docs seem hesitant to finalize anything, so I sincerely apologize if it's inconsiderate of me in even the slightest way to be worrying about ALS since nothing is definite. But the bulbar symptoms seem to be there, which scares me. The emotional lability, loss of speech, drooling, difficulty swallowing, etc.

So my main question is this - what are some affordable but good speech devices for someone living in Canada (more specifically, Ontario)? Preferably something that allows wordbanking, since a few of the things my mom says are still comprehensible.

And does anyone have any advice on drug coverage in Ontario?

Any advice would be appreciated.

Thank you,

Nav1990

 

[ottawa girl]

Hello from Ottawa,

There are many insurance plans - but they are expensive - especially if your Dad would need family coverage. Your Dad may be able to stay (at his expense) on a similar plan that he had with his job - but there is, I recall, a short window of opportunity.

Is your Mom slated to see the neurologist again soon? Is your family doctor "on the case "and pushing for a diagnoses?

I am not familiar with speech devices - but on 60 Minutes news magazine TV show, recently, I saw that the IPAD has an application whereby the user can point at symbols and the IPAD then speaks the word. Seemingly, these can be adapted for different users. If you contact your local ALS office, they will give you more alternatives. Also, your Mom should be able to apply and receive CPP Disability Benefits; your Mom's Doctors will have to fill out forms also, but they get paid for this service by the government.

I'm sure that others on this site will come to your rescue with more information. In the interim, take care of yourself and I hope your Mom gets answers soon.

 

[Sharks1967]

So sorry to hear about your mum. I've been using an iPad for about 18 months. I downloaded a "Speak it" app for free which has a phrase bank for frequent used phrases. It's been invaluable to me. Take care. Danny

 

[Nav1990]

Thank you both for your input and concern. I'll look into getting an iPad then, although I'm still open to cheaper alternatives if anyone happens to have any.

 

[caldona]

You can use a ''go talk'' we just ordered one for my niece cost was a little over two hundred. You can also use a cell phone doesn't have to have service it is better if it has key board my niece can't use this because she had a stroke and can't put her letters together to make the word she wants that is why ordered her the go talk

 

[Tokahfang]

For the really cheap, but modifiable as her ablity goes options, there is the speech netbook. Any windows netbook will do.

You would buy a cheap windows netbook and external speaker. You have some software choices - free would be something like etriloquist, if you're willing to put a little money in, Nextup Talker for 100 is a good program. Any windows computer can word bank, don't get swindled into some specialty app that duplicated existing functionality. You just go into the .wav recorder, record until you're happy with how it sounds, then name it something suitable. It can than be added to whatever speech program you chose, and taken with you if you upgrade later to a new speech program.

For input, for now she sounds like she can type, so that's no problem. There are many alternative inputs that you can later add on if her typing ability goes away, from an on screen keyboard, to Dasher (takes a little while to learn but works well as ablities change), finally to a scanning on screen keyboard at the highest levels of disability.

It's also important to have a phone with speaker phone, so her speech device can talk into it and she can hear the reply. I overlooked this part at first myself.

Any computerized speech device is going to have glare problems outside, the cheap and expensive ones alike. Make sure there is a mode in which she can just enter text and then hand it to whoever she is speaking to so they can read it.

 

[cervus]

My husband used the IPAD with Speak It and another program called ProLoquo2go - but that was $200.00.

The outbursts of laughing and crying are generally treatable. The "condition" is called emotional lability. There are different meds and procedures to help with this sometimes embarrassing condition - more so for the person that's experiencing it. My husband was put on an anti-depressant called Amitriptyline to help with the emotional outbursts (his were mostly laughing spells), and it helped greatly. Also helped with saliva which becomes a problem if one has trouble swallowing. This drug also helped him sleep better at night.

Once you have a definite diagnosis, there will be lots of help and guidance. Try not to get too worried right now. Wait for the specialists to tell you what is causing these symptoms. Take care. Yasmin

 

[Arens]

If you contact your local ALS Society they probably have a free equipment loan program (like we have in B.C.). My husband is now using a device called a LIGHTWRITER that was provided for his use free of charge by the ALS society. It is a small, portable keyboard that you type what you want it to speak and also shows what you typed on two sides so the other person can read what you have typed as well. You can voice bank some stuff into it and it can make other sounds so if he needs to get my attention as well. You can have speak in a mans or womans voice. And its nice that it is portable so we can take it out with us.