bellard
Member
- Joined
- Feb 28, 2007
- Messages
- 18
- Reason
- Loved one DX
- Country
- US
- State
- Arkansas
- City
- Fayetteville
I hope this is not double posted, but I origianly seem to have posted this to the wrong thread?
Hello,
My, mother who lives in another state, was diagnosed with ALS 1+ month ago. It is the bulbar ALS. In reality she has had symptoms for over a year, but no one figured it out. Now, she has very limited speech, most can not understand her, limited breathing capacity, trouble swallowing, and soem falls. We went to clinic for the testing and confirmation, and I actually saw her degress there, but I had put it all off to the stress of it all.
As luck would have it or not, there is a sibling of mine that currently resides at the home with her, but they are often sickly and needy themselves. As we wanted to have good communication with mom, after much research, we purchased her a laptop, so she can communicate with us children who live in other states. That has been a blessing so far.
It seems that most information we have been seeking out here, is not appreciated nor thought of as needed by Mom, and the children there who are with her day to day. After the 5th fall in a matter of weeks, I called a supply place to arrange for a cane, and walker. It still took 2+ weeks for mom and house to be available to receive it.
In our support group up here, we learned that most people have an ongoing relationship with their respitory technician, and I know mom does not like her v-pap machine, so i inquired if they had talked with their local rep, since the initial visit. no. I offered to call, and was waved off.
a short trip was planned out of state by mom and sibling, and no thought was given to how mom could communicate, so the laptop is being left at home.
mom says she can talk on the cell phone. yes she can, but we can not understand 85% of what she says.
We are very worried about her, and try to seek out the safety methods, so she can maintain her indenpendance, but she and they, want little to do with it, so it seems.
We try to stay upbeat and positive but sometimes I worry how depressed mom sounds in her coorespondence.
I would be interested in others who deal with loved ones in other states, and what they may do to help ensure, that they are contributing to the enjoyment of life for the out of state affected love one.
Thanks
Hello,
My, mother who lives in another state, was diagnosed with ALS 1+ month ago. It is the bulbar ALS. In reality she has had symptoms for over a year, but no one figured it out. Now, she has very limited speech, most can not understand her, limited breathing capacity, trouble swallowing, and soem falls. We went to clinic for the testing and confirmation, and I actually saw her degress there, but I had put it all off to the stress of it all.
As luck would have it or not, there is a sibling of mine that currently resides at the home with her, but they are often sickly and needy themselves. As we wanted to have good communication with mom, after much research, we purchased her a laptop, so she can communicate with us children who live in other states. That has been a blessing so far.
It seems that most information we have been seeking out here, is not appreciated nor thought of as needed by Mom, and the children there who are with her day to day. After the 5th fall in a matter of weeks, I called a supply place to arrange for a cane, and walker. It still took 2+ weeks for mom and house to be available to receive it.
In our support group up here, we learned that most people have an ongoing relationship with their respitory technician, and I know mom does not like her v-pap machine, so i inquired if they had talked with their local rep, since the initial visit. no. I offered to call, and was waved off.
a short trip was planned out of state by mom and sibling, and no thought was given to how mom could communicate, so the laptop is being left at home.
mom says she can talk on the cell phone. yes she can, but we can not understand 85% of what she says.
We are very worried about her, and try to seek out the safety methods, so she can maintain her indenpendance, but she and they, want little to do with it, so it seems.
We try to stay upbeat and positive but sometimes I worry how depressed mom sounds in her coorespondence.
I would be interested in others who deal with loved ones in other states, and what they may do to help ensure, that they are contributing to the enjoyment of life for the out of state affected love one.
Thanks