ALSquestions
New member
- Joined
- Jan 16, 2021
- Messages
- 8
- Reason
- CALS
- Diagnosis
- 01/2021
- Country
- US
- State
- MD
- City
- Baltimore
Hello, all,
My mom, age 71, was officially diagnosed with ALS last Thursday. It came as a shock to her (and she still doesn’t actually believe it—she doesn’t want to tell anyone until she is seen at the ALS clinic and they confirm the diagnosis), though it’s the diagnosis I was expecting.
I have a few questions about this and that. First, a little background.
My mom is very weak, fatigues very easily, and has lost 40 pounds in the last year—her BMI is just over 16. Her symptoms began two years ago in her left foot. Her hands became involved a little over a year ago, and her voice began to change more noticeably this past summer. In retrospect, her breathing was also showing changes during the summer, though it looked like it was just fatigue and just generally being weak and out of shape (though, tellingly, as she was having to do a lot of physical activity to get ready to move from her house to an independent living setting for seniors, I do remember thinking that it was odd that she didn’t seem to be getting stronger or gaining any stamina with all that exercise).
Over the last month or two, her decline has been alarming. Her voice seems to weaken almost by the day and her speech is quite slurred and slow and often difficult for others to understand. Her resting respiration is 26-28. She becomes dizzy and feels faint when she does things like trying to change her sheets. Last weekend, she woke in the night feeling odd, rolled over, and fainted in bed, and earlier this week she woke at 2am with a bad headache and couldn’t get back to sleep. I think this happens regularly, but she isn’t always forthcoming about it.
She has some cognitive impairment, which makes it difficult to tell how much she understands and even how anxious she is. I’m not sure how much to explain what is happening or what her symptoms mean. For now, I try to just make suggestions, like “Why don’t you try sleeping more upright?”, so I don’t add to her anxiety.
It’s certainly sounding to me like she needs a biPAP at night, and she might benefit from using it periodically throughout the day. We are getting the ball rolling on making the move to assisted living. She says she would like a PEG tube. Her swallow study showed only mild dysphagia, but she does choke frequently, perhaps partly due to a past history of choking, due to a medical condition unrelated to ALS, and a fear of choking again. Her cough is very weak. But she can generally handle ice cream and yogurt pretty well.
One thing that has surprised me is that she is still relatively mobile. Though I wish she’d use her rollator all the time, she can walk around her apartment without it. Her mobility has greatly decreased, but she can still stand for long enough to shower independently and she can walk short distances unassisted. She can’t really do stairs at all now, though she could with only a little help a couple months ago, so I guess that has declined pretty fast recently too.
Her first appointment at the specialty clinic hasn’t been scheduled yet, but I’ve been told it’ll likely be within a week or two, which I’m grateful for, as I’m quite worried about the breathing.
That was a lot of background. Thanks for reading this far.
My questions are as follows:
1. What should we expect at her first ALS Clinic visit? (We are in Baltimore and are going to the Johns Hopkins clinic, in case anyone has direct experience.)
2. Is there anything to be made of the fact that she’s still mobile and had limb-onset, but her breathing seems really crappy really quickly?
3. Am I naive to think her breathing is pretty bad? By which I mean, are you all thinking, “Oh, you poor, blissful idiot, you think THIS is bad?!”
4. She has heard a doctor and a nurse both mention that people can live with ALS for many years. I think that is her expectation for herself right now. I don’t wish to give her a different picture unless she wants a different picture, but I myself would like a realistic picture. What does this sound like to you in terms of where we are in this journey? No way to know? Will the clinic provide more data that could give me a clearer picture?
5. Can things get better? Like, with biPAP and a PEG and once we put some more targeted care in place in assisted living, could things stabilize, allowing her some more time in relative comfort to plan and do things she enjoys?
Thank you all for the gifts of your time and your wisdom.
My mom, age 71, was officially diagnosed with ALS last Thursday. It came as a shock to her (and she still doesn’t actually believe it—she doesn’t want to tell anyone until she is seen at the ALS clinic and they confirm the diagnosis), though it’s the diagnosis I was expecting.
I have a few questions about this and that. First, a little background.
My mom is very weak, fatigues very easily, and has lost 40 pounds in the last year—her BMI is just over 16. Her symptoms began two years ago in her left foot. Her hands became involved a little over a year ago, and her voice began to change more noticeably this past summer. In retrospect, her breathing was also showing changes during the summer, though it looked like it was just fatigue and just generally being weak and out of shape (though, tellingly, as she was having to do a lot of physical activity to get ready to move from her house to an independent living setting for seniors, I do remember thinking that it was odd that she didn’t seem to be getting stronger or gaining any stamina with all that exercise).
Over the last month or two, her decline has been alarming. Her voice seems to weaken almost by the day and her speech is quite slurred and slow and often difficult for others to understand. Her resting respiration is 26-28. She becomes dizzy and feels faint when she does things like trying to change her sheets. Last weekend, she woke in the night feeling odd, rolled over, and fainted in bed, and earlier this week she woke at 2am with a bad headache and couldn’t get back to sleep. I think this happens regularly, but she isn’t always forthcoming about it.
She has some cognitive impairment, which makes it difficult to tell how much she understands and even how anxious she is. I’m not sure how much to explain what is happening or what her symptoms mean. For now, I try to just make suggestions, like “Why don’t you try sleeping more upright?”, so I don’t add to her anxiety.
It’s certainly sounding to me like she needs a biPAP at night, and she might benefit from using it periodically throughout the day. We are getting the ball rolling on making the move to assisted living. She says she would like a PEG tube. Her swallow study showed only mild dysphagia, but she does choke frequently, perhaps partly due to a past history of choking, due to a medical condition unrelated to ALS, and a fear of choking again. Her cough is very weak. But she can generally handle ice cream and yogurt pretty well.
One thing that has surprised me is that she is still relatively mobile. Though I wish she’d use her rollator all the time, she can walk around her apartment without it. Her mobility has greatly decreased, but she can still stand for long enough to shower independently and she can walk short distances unassisted. She can’t really do stairs at all now, though she could with only a little help a couple months ago, so I guess that has declined pretty fast recently too.
Her first appointment at the specialty clinic hasn’t been scheduled yet, but I’ve been told it’ll likely be within a week or two, which I’m grateful for, as I’m quite worried about the breathing.
That was a lot of background. Thanks for reading this far.
My questions are as follows:
1. What should we expect at her first ALS Clinic visit? (We are in Baltimore and are going to the Johns Hopkins clinic, in case anyone has direct experience.)
2. Is there anything to be made of the fact that she’s still mobile and had limb-onset, but her breathing seems really crappy really quickly?
3. Am I naive to think her breathing is pretty bad? By which I mean, are you all thinking, “Oh, you poor, blissful idiot, you think THIS is bad?!”
4. She has heard a doctor and a nurse both mention that people can live with ALS for many years. I think that is her expectation for herself right now. I don’t wish to give her a different picture unless she wants a different picture, but I myself would like a realistic picture. What does this sound like to you in terms of where we are in this journey? No way to know? Will the clinic provide more data that could give me a clearer picture?
5. Can things get better? Like, with biPAP and a PEG and once we put some more targeted care in place in assisted living, could things stabilize, allowing her some more time in relative comfort to plan and do things she enjoys?
Thank you all for the gifts of your time and your wisdom.