Raul_Chicago
Member
- Joined
- Aug 5, 2010
- Messages
- 24
- Reason
- Loved one DX
- Country
- US
- State
- IL
- City
- Park Ridge
Hi there,
My father who is 69 is in the process of being diagnosed with ALS. I say this because he has seen a Neurologist who says that his symptoms - Muscle atrophy, fasiculations, weakness, tremendous weight loss along with dropfoot and a few others, combined with positive looking nerve conduction and EMG. There are still a few tests outstanding (MRI and some bloodwork). He has been prescribed Lithium and eventually will get a scrip for Rilutek, though not sure it is affordable for us.
All that said, I have been on the forum looking for info, but just thought I would start a thread that I could refer to, if any of you amazing/brave people would be kind enough to offer some insight and advice to a newbie member of a caretaking team, it'd be much appreciated.
My main concerns now are his breathing. He can not lie flat on his back even with 1-2 pillows. The Neuro has talked about breathing assistance (yesterday was the most recent follow up with the pre-diagnosis) and I am sure he needs a bipap. If his breathing is difficult when he walks and is even relaxing, does this mean that he is further along with the progression than I presume? I know that is difficult to speak to, but I get the feeling that my father doesn't have very long, and since this is all new to him, he feels that way as well. Though I have never expressed my feelings regarding this to him. I try to stay positive with him. I guess I am looking for some insight as to what the bipap can do and if his breathing will eventually plateau or if it will progressively worsen. Not asking for exact science of course, just some general insight.
Sorry for rambling, this is all so new to me that my mind just goes in 100 directions. Any information is good information. I hope to hear from you soon.
Thanks
Raul
My father who is 69 is in the process of being diagnosed with ALS. I say this because he has seen a Neurologist who says that his symptoms - Muscle atrophy, fasiculations, weakness, tremendous weight loss along with dropfoot and a few others, combined with positive looking nerve conduction and EMG. There are still a few tests outstanding (MRI and some bloodwork). He has been prescribed Lithium and eventually will get a scrip for Rilutek, though not sure it is affordable for us.
All that said, I have been on the forum looking for info, but just thought I would start a thread that I could refer to, if any of you amazing/brave people would be kind enough to offer some insight and advice to a newbie member of a caretaking team, it'd be much appreciated.
My main concerns now are his breathing. He can not lie flat on his back even with 1-2 pillows. The Neuro has talked about breathing assistance (yesterday was the most recent follow up with the pre-diagnosis) and I am sure he needs a bipap. If his breathing is difficult when he walks and is even relaxing, does this mean that he is further along with the progression than I presume? I know that is difficult to speak to, but I get the feeling that my father doesn't have very long, and since this is all new to him, he feels that way as well. Though I have never expressed my feelings regarding this to him. I try to stay positive with him. I guess I am looking for some insight as to what the bipap can do and if his breathing will eventually plateau or if it will progressively worsen. Not asking for exact science of course, just some general insight.
Sorry for rambling, this is all so new to me that my mind just goes in 100 directions. Any information is good information. I hope to hear from you soon.
Thanks
Raul