drmichelle
New member
- Joined
- May 12, 2009
- Messages
- 3
- Reason
- CALS
- Country
- US
- State
- az
- City
- smalltown
Hey y'all.
Please help me help my friend with recently diagnosed ALS... We are in a small rural town and she is the only one. We barely have a neurologist.
We have hooked up with a foundation and supposedly they will help us get her a chair and communication device (has trach and PEG, in regular WC).
My questions:
1. How does this person safely drive 100 miles through the deserted desert in a car to get to the city where there is an ALS clinic? Her spouse is despondent and doesn't want her to have to travel like that: they don't have a van, just a small car, and she has a portable vent but it's really scary for them; I can see that. I tell them it's really important to get to a multidisciplinary ALS clinic to prolong her survival and help manage symptoms, yada yada, but they are getting worn out. (Can someone tell me if ALS clinic is super important? I am thinking it is...)
2. Spouse thinks a power chair will be impossible to use in their mobile home with carpet. He thinks it won't fit through the door. What should I tell him?
3. She is afraid to get a communication device evaluation (which takes an act of congress in a small isolated town); isn't this the best thing to do? She writes on a pad to communicate but shouldn't we try to get it now before she loses hand function?
4. They have gone broke in the last 4 months with this disease. They were hard working retired middle class people with private insurance which paid 80% of everything; the 20% depleted their retirement funds. They do have a lovely mobile home on land. Do they have to lose this, too?
The patient apparently can't get any social security or disability (OR EVEN MEDICARE?) because she does not have enough credits or something in her ss bank. This is such a devastating disease. Any suggestions? It;s not like they can just go out and by a van with a lift for the drive. And this 2 horse town has nothing to offer in terms of public transportation for those with disabilities.
I just feel like if they were wealthy this would be alot easier. Then he could hire someone for respite. Right now he is the 24/7 caregiver and I can see him burning out. Because I am a professional healthcare worker I am not alllowed to "volunteer at a residence alone" and good luck trying to find a partner to go with me four 4 hours at a time.
There isn't a skilled nursing facility that will take vents in 100 miles.
5. CAN SOMEBODY PLEASE HELP ME HELP THEM? She is sick (just out of ICU) and he is worn out and pissed off. Where do we go from here?
Please help me help my friend with recently diagnosed ALS... We are in a small rural town and she is the only one. We barely have a neurologist.
We have hooked up with a foundation and supposedly they will help us get her a chair and communication device (has trach and PEG, in regular WC).
My questions:
1. How does this person safely drive 100 miles through the deserted desert in a car to get to the city where there is an ALS clinic? Her spouse is despondent and doesn't want her to have to travel like that: they don't have a van, just a small car, and she has a portable vent but it's really scary for them; I can see that. I tell them it's really important to get to a multidisciplinary ALS clinic to prolong her survival and help manage symptoms, yada yada, but they are getting worn out. (Can someone tell me if ALS clinic is super important? I am thinking it is...)
2. Spouse thinks a power chair will be impossible to use in their mobile home with carpet. He thinks it won't fit through the door. What should I tell him?
3. She is afraid to get a communication device evaluation (which takes an act of congress in a small isolated town); isn't this the best thing to do? She writes on a pad to communicate but shouldn't we try to get it now before she loses hand function?
4. They have gone broke in the last 4 months with this disease. They were hard working retired middle class people with private insurance which paid 80% of everything; the 20% depleted their retirement funds. They do have a lovely mobile home on land. Do they have to lose this, too?
The patient apparently can't get any social security or disability (OR EVEN MEDICARE?) because she does not have enough credits or something in her ss bank. This is such a devastating disease. Any suggestions? It;s not like they can just go out and by a van with a lift for the drive. And this 2 horse town has nothing to offer in terms of public transportation for those with disabilities.
I just feel like if they were wealthy this would be alot easier. Then he could hire someone for respite. Right now he is the 24/7 caregiver and I can see him burning out. Because I am a professional healthcare worker I am not alllowed to "volunteer at a residence alone" and good luck trying to find a partner to go with me four 4 hours at a time.
There isn't a skilled nursing facility that will take vents in 100 miles.
5. CAN SOMEBODY PLEASE HELP ME HELP THEM? She is sick (just out of ICU) and he is worn out and pissed off. Where do we go from here?
