lifeisprecious
New member
- Joined
- Aug 8, 2013
- Messages
- 9
- Reason
- Loved one DX
- Diagnosis
- 07/2013
- Country
- Uni
- State
- FL
- City
- Pompano Beach
Good day, everyone! My father, 73 and living in South Florida, was diagnosed last month with ALS. He started slurring speech last December. He can still be understood, but it has slightly worsened. He has not experienced symptoms anywhere else, nor has his EMG indicated a spread. It is my understanding, however ,that it is a matter of time, although an unpredictable one. In fact, it’s incredible that something so important can be still, in 2013, so unpredictable.
The diagnosis has inspired a tumbling cacophony of emotions. My father is incredibly positive and centered. He has expressed appreciation for having enjoyed a long life full of love. We are trying to focus on the elusive but real gifts of this terrible disease: the fact he can say goodbye to people he loves, the fact that he can ease into this, the fact that things are painless. We are trying to come up with a team-based approach: my brother, who lives with my parents, can be primary caregiver; my mother will continue working and leading her life as my father wants, and I can do research and interface with insurers from Washington DC, where I live. We are trying to educate ourselves about what to expect, and I can’t help but feel like this uneasy period is the calm before the storm, where we know what is coming but don’t know when and how. It is unsettling, and the strength of the people in this group has been a comfort and, quite frankly, an inspiration.
In the last few weeks, we met with a speech pathologist to look at devices and schedule voicebanking, and are going next week to the St Catherine Multidisciplinary Clinic for ALS in Miami to meet everyone. We are not sure what else to do, except spend a lot of time with my Dad.
So, a few questions.
1) We looked at the Toby I-Series, Dynavox Maestro, and Mobi 2 devices. The speech pathologist recommended these because she has had great luck with their local customer service reps. Because my Dad appears to be bulbar onset, he will likely need the device before it is used as an eye gaze device. Any advice or recommendations? Toby is slickest and best interface, but may be a bit heavy.
2) For those of you out there using assistive technology for communication, does it take a long time to learn? Any recommendations on when my Dad should start using it?
3) What do you wish you knew at diagnosis? What things do you wish you might have done that you have not done? Anything, besides work through his bucket list, my Dad should be doing now that he is mobile?
4) Has anyone seen a checklist of things to do upon diagnosis? I am thinking of insurance, or other things that may take a while.
5) Has anyone seen a list of best equipment to use? For example , best bed, best furniture, best telephone, etc. I
6) Finally, book recommendations. Any book recommendations for either my Dad or the family that will be working to make his remaining time as comfortable and peaceful as possible?
Thank you for this forum. We are feeling many things, but alone is not one of them. If it is possible to love complete strangers, I love all of you.
The diagnosis has inspired a tumbling cacophony of emotions. My father is incredibly positive and centered. He has expressed appreciation for having enjoyed a long life full of love. We are trying to focus on the elusive but real gifts of this terrible disease: the fact he can say goodbye to people he loves, the fact that he can ease into this, the fact that things are painless. We are trying to come up with a team-based approach: my brother, who lives with my parents, can be primary caregiver; my mother will continue working and leading her life as my father wants, and I can do research and interface with insurers from Washington DC, where I live. We are trying to educate ourselves about what to expect, and I can’t help but feel like this uneasy period is the calm before the storm, where we know what is coming but don’t know when and how. It is unsettling, and the strength of the people in this group has been a comfort and, quite frankly, an inspiration.
In the last few weeks, we met with a speech pathologist to look at devices and schedule voicebanking, and are going next week to the St Catherine Multidisciplinary Clinic for ALS in Miami to meet everyone. We are not sure what else to do, except spend a lot of time with my Dad.
So, a few questions.
1) We looked at the Toby I-Series, Dynavox Maestro, and Mobi 2 devices. The speech pathologist recommended these because she has had great luck with their local customer service reps. Because my Dad appears to be bulbar onset, he will likely need the device before it is used as an eye gaze device. Any advice or recommendations? Toby is slickest and best interface, but may be a bit heavy.
2) For those of you out there using assistive technology for communication, does it take a long time to learn? Any recommendations on when my Dad should start using it?
3) What do you wish you knew at diagnosis? What things do you wish you might have done that you have not done? Anything, besides work through his bucket list, my Dad should be doing now that he is mobile?
4) Has anyone seen a checklist of things to do upon diagnosis? I am thinking of insurance, or other things that may take a while.
5) Has anyone seen a list of best equipment to use? For example , best bed, best furniture, best telephone, etc. I
6) Finally, book recommendations. Any book recommendations for either my Dad or the family that will be working to make his remaining time as comfortable and peaceful as possible?
Thank you for this forum. We are feeling many things, but alone is not one of them. If it is possible to love complete strangers, I love all of you.