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
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