MP's CALS
Member
- Joined
- Mar 22, 2012
- Messages
- 14
- Reason
- CALS
- Diagnosis
- 02/2012
- Country
- US
- State
- Changing soon
- City
- Changing soon
Hello all,
I am new to this forum. My mother was diagnosed with ALS in February 2012 (but has had symptoms since July 2010). She is 72. She cannot breathe on her back at all, uses BiPAP at night, walks with a walker, uses a chairlift for the stairs (PWC on order), and her speech is becoming more and more slurred. We are all still reeling from the diagnosis and she is getting her second opinion at the Mayo Clinic next week. I live 850 miles away, but by June, I plan to be moved into her home to become her primary caregiver, since my sister has taken over the family business and cannot do both. I have secured a caretaker for my house; still working on convincing my job to allow me an unpaid leave of absence (beyond Family Medical Leave), so that someday I may return to my home and have a job.
Mom is wanting to use a diaphragm pacing system. I did a search on this forum and could not find any threads about this device. She has passed the first two tests which will allow her to have a consultation in a town about 4 or 5 hours from her home. The consulting physicians may still yet say she is not a good candidate. My questions are: Does anyone have this system and what are the risks/benefits of it? Do you have any negative side effects (like pain)? Is it helpful to your daily life? I can read all about it on websites, but I would like to hear from the source--people who actually know its risks and benefits from personal experience. If you chose not to have one, let me know that, too.
Sorry for the millions of questions. After I got over the initial shock and terror, I went into Find Out Everything I Can About This Horrible Disease Mode. Almost all my questions have already been answered by lurking here for 6 weeks--many thanks to you!
Thanks in advance for helping me. Compared to other forums I've seen and participated in, this one seems especially thoughtful, kind, and not-so-narcissistic as the rest of the internet!
M
I am new to this forum. My mother was diagnosed with ALS in February 2012 (but has had symptoms since July 2010). She is 72. She cannot breathe on her back at all, uses BiPAP at night, walks with a walker, uses a chairlift for the stairs (PWC on order), and her speech is becoming more and more slurred. We are all still reeling from the diagnosis and she is getting her second opinion at the Mayo Clinic next week. I live 850 miles away, but by June, I plan to be moved into her home to become her primary caregiver, since my sister has taken over the family business and cannot do both. I have secured a caretaker for my house; still working on convincing my job to allow me an unpaid leave of absence (beyond Family Medical Leave), so that someday I may return to my home and have a job.
Mom is wanting to use a diaphragm pacing system. I did a search on this forum and could not find any threads about this device. She has passed the first two tests which will allow her to have a consultation in a town about 4 or 5 hours from her home. The consulting physicians may still yet say she is not a good candidate. My questions are: Does anyone have this system and what are the risks/benefits of it? Do you have any negative side effects (like pain)? Is it helpful to your daily life? I can read all about it on websites, but I would like to hear from the source--people who actually know its risks and benefits from personal experience. If you chose not to have one, let me know that, too.
Sorry for the millions of questions. After I got over the initial shock and terror, I went into Find Out Everything I Can About This Horrible Disease Mode. Almost all my questions have already been answered by lurking here for 6 weeks--many thanks to you!
Thanks in advance for helping me. Compared to other forums I've seen and participated in, this one seems especially thoughtful, kind, and not-so-narcissistic as the rest of the internet!
M