Rapid Progression

[GXTrex]

My dad was doing alright relatively speaking for awhile. Symptom onset in Sept of 2019, diagnosed Dec 2020. Up until a few days ago he was walking (a little wobbly, cane for longer distances, mostly liquid diet split between peg and by mouth, and alert/able to speak pretty understandably.

Yesterday he started getting widespread intense muscle fasciculations but otherwise no change. Last night he fell (but went down slowly and did not hurt himself at all). Now today he cannot stand, can barely speak, and cant sit himself up. I know progression rate varies but that seems a lot really fast.

Does anyone have experience with this? Is it possible this added weakness is only temporary? Any other possible explanations?

 

[rmt]

I'm not a doctor but my first thought is a stroke. Have you talked to a doctor today? I would definitely do that just in case this is something acute like a stroke.

 

[em9988]

My dad had a stroke a few years ago and those sound like the exact symptoms he had.

 

[GXTrex]

He is unable to travel now as we don't currently have a wheelchair (awaiting on one from loaner closet). We are trying to set up a zoom call with a nurse. Can someone confirm a stroke by zoom since he cant go to a hospital?

What would they do for an acute stroke?

 

[Nikki J]

There are medications depending on the type of stroke. If that is a possibility it is a 911 emergency

 

[lgelb]

Well, today, it wouldn't be acute any more, so tPA would be out, but there might be an endovascular procedure that would help him, along with PT and such (admittedly less helpful in ALS).

In a video call, with a good system, a neurologist would look at his pupils to see their size and reactivity, ask him/you questions, watch how he moves, etc. That would not confirm a stroke without imaging but would be suggestive.

EMTs could transport him without a wheelchair, given the circumstances, if there is ED capacity nearby. I am not sure how things work where you are, but you could explain the situation to the dispatcher ["possible stroke/unable to transport ourselves"] and see if you can get them to come over, at least to assess. Some health systems also have telestroke programs that are more organized and used to grabbing up patients from wherever they are. The EMTs will know where these are, if you don't.

I do agree with getting him assessed sooner rather than later. Keep us posted.

 

[GXTrex]

I spoke with him and his current caregiver (my mother) and they are adamant about not going to the hospital even though I mentioned the stroke possibility. He is also warm to the touch so hopefully it is just a fever or some infection. His PEG opening looks normal.

 

[lgelb]

An infection with fever and the drastic effects you describe is not necessarily going to go away on its own, and he could be/become septic, in which case not treating it could lead to the very worst outcome. In many communities, there is at least a nurse practitioner that makes house calls.

 

[GXTrex]

An infection with fever and the drastic effects you describe is not necessarily going to go away on its own, and he could be/become septic, in which case not treating it could lead to the very worst outcome. In many communities, there is at least a nurse practitioner that makes house calls.

There are ALS nurses that service the area. They normally make house call but won't because of covid. I am trying to schedule a zoom call

 

[lgelb]

They don't have to be ALS nurses. An infection is an infection. Often, it's "geriatric" nurse practitioners or physician's assistants that do this. Or there are docs:

house call doctors long island ny - Google Search

 

[GXTrex]

We were able to convince him to go to the hospital. The ambulance was able to get him there safely.

He has a really bad uti but it is treatable. He is on antibiotics and will stay at the hospital a few days.

Thanks everyone for urging us to go.

 

[GXTrex]

We found out he also has a kidney stone, which will have to be removed in the future. He had a stent put in last night to help flush out his kidneys. He also has pneumonia due to aspiration. We have to use the feeding tube more often now, but we are very glad he already has one. I know this has been said many times on here, but everyone please get a feeding tube as soon as it is first recommended if you want to go that route.

Can we expect a "full recovery" from the pneumonia/uti (back his normal state a few days ago)? The doctors said he should recover from a strictly urological and respiratory standpoint but not commenting on how his als would affect this.

Does anyone have experience with recovery after these conditions?

 

[Nikki J]

I am glad he is getting good care but so sorry he is going through all this.

as with everything else recovery from other illnesses and a lingering effect on ALS varies. At best it won’t be quick or as easy as it would have been before. This is one time that pt can help once he is over the acute phase as long as you have a pt that won’t push too hard. For a lot of PALS though an illness or injury will result in at least a step down. Probably he will be significantly better than now but not quite where he was before. If you were thinking about environmental adjustments you might start working on them

 

[GXTrex]

@Nikki J

What sort of environmental adjustments? I am not sure what a step down would be in his case. We are working with the loan closet to get a manual wheelchair if needed. We got a bed pan in case he didn't recover at all as an emergency. We should probably get a shower chair as those are cheap and would make things safer. Do you have any recommendations? We have grab bars already installed.

We have a tobii eye gaze ready to be shipped (he has completed voice banking), but apparently he cant be in the hospital when it is? One of their questions asks if he is currently hospitalized which he is, even though he should be discharged in a matter of days. The speech pathologist said to wait before moving forward with that.

Once he gets out we will know if he we need a ramp to the house and we would move on that. Do you have any other recommendations? He is supposed to have a clinic visit Tuesday which he is not able to make.

 

[affected]

This link might help you think through some of what else might need doing now, or might be worth discussing for future needs.

Resource - Anticipatory planning - trying to stay a step ahead

ALS generally has 3 main ‘starting’ points in the body, so some of the anticipatory planning will revolve around what parts of the body are most likely, or obviously failing first. These are – bulbar onset that starts with speech and swallowing, arm and leg onset. One of the biggest issues we...

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