ccat
New member
- Joined
- Feb 5, 2013
- Messages
- 2
- Reason
- Loved one DX
- Country
- US
- State
- NC
- City
- Raleigh
Hello,
I'm new to this forum but have been searching around in the back posts for a while now. I'm writing for insight that might help me as a caregiver and greatly appreciate your thoughts.
Background: My mother-in-law, aged 65, has been having difficulty speaking for about a year now. It started with a lisp relating to her tongue movements and has progressed to other muscles around her mouth. No trouble swallowing. Rather, excessive saliva. No symptoms elsewhere in her body. Her GP, ENT, and neurologist have been working through various options--stroke, side affects to medications, infections, tumors, etc. She's had an MRI and now an EMG. Her EMG was "clean", but the neurologist indicated that he believes she has some form of ALS. He says all the other options have been excluded, so he's not investigating anything else right now and has scheduled another EMG in a few months. Given the current localization in the mouth, it's possibly pseudobulbar palsy, which I guess is an "umd" vs an "lmd" and would explain the emg result. (please forgive my lingo if the abbreviations aren't spot on.) She is also investigating a second opinion from a clinic that specializes in ALS.
My impression from research so far is that pseudobulbar palsy is not fatal and patients may have a significantly slower rater of progression compared to traditional ALS, in which most people are confronting a shorter timespan.
Questions:
- Can anyone with pseudobulbar palsy share info or links relating to it's rate of progression? It seems even rarer than regular ALS and I'm having difficulty finding patient stories and statistics.
- Is the only way to distinguish pseudobulbar palsy from traditional ALS to wait and see how things progress?
- Any thoughts on how can we help her plan her future with two such different time-tables in the discussion? She is in the age range for retirement but had planned to continue working a few more years. If she has traditional ALS, then she might retire now and make hay while the sun shines, so to speak. If she's looking at a slower progression, then she might shift around some priorities, but still keep working until she encounters more physical limitations. Obviously there are personal, social and financial implications to either path. If you were working when diagnosed, when did you decide to stop working? How did that decision work out?
I hope those questions aren't too blunt. None of us know how much time we have on the earth, but having a specific ticking clock does change things. We are trying to do some research on our own so that she doesn't have to carry the burden alone.
Best wishes to you and thanks in advance for any thoughts you share.
I'm new to this forum but have been searching around in the back posts for a while now. I'm writing for insight that might help me as a caregiver and greatly appreciate your thoughts.
Background: My mother-in-law, aged 65, has been having difficulty speaking for about a year now. It started with a lisp relating to her tongue movements and has progressed to other muscles around her mouth. No trouble swallowing. Rather, excessive saliva. No symptoms elsewhere in her body. Her GP, ENT, and neurologist have been working through various options--stroke, side affects to medications, infections, tumors, etc. She's had an MRI and now an EMG. Her EMG was "clean", but the neurologist indicated that he believes she has some form of ALS. He says all the other options have been excluded, so he's not investigating anything else right now and has scheduled another EMG in a few months. Given the current localization in the mouth, it's possibly pseudobulbar palsy, which I guess is an "umd" vs an "lmd" and would explain the emg result. (please forgive my lingo if the abbreviations aren't spot on.) She is also investigating a second opinion from a clinic that specializes in ALS.
My impression from research so far is that pseudobulbar palsy is not fatal and patients may have a significantly slower rater of progression compared to traditional ALS, in which most people are confronting a shorter timespan.
Questions:
- Can anyone with pseudobulbar palsy share info or links relating to it's rate of progression? It seems even rarer than regular ALS and I'm having difficulty finding patient stories and statistics.
- Is the only way to distinguish pseudobulbar palsy from traditional ALS to wait and see how things progress?
- Any thoughts on how can we help her plan her future with two such different time-tables in the discussion? She is in the age range for retirement but had planned to continue working a few more years. If she has traditional ALS, then she might retire now and make hay while the sun shines, so to speak. If she's looking at a slower progression, then she might shift around some priorities, but still keep working until she encounters more physical limitations. Obviously there are personal, social and financial implications to either path. If you were working when diagnosed, when did you decide to stop working? How did that decision work out?
I hope those questions aren't too blunt. None of us know how much time we have on the earth, but having a specific ticking clock does change things. We are trying to do some research on our own so that she doesn't have to carry the burden alone.
Best wishes to you and thanks in advance for any thoughts you share.
