Haven't yet figured out dx, but new symptom

northernlady · July 14

…has cropped up.

Brief history: DH was struggling.

MRI in Oct 2023 showed brain shrinkage. Initial dx: moderate cognitive decline (13 of 30 MOCA), suspect Parkinsons, and Alz.

In March, Speech therapist suspected Ataxia and so far indications seem correct dx.

Neurologist is waiting on Mayo Clinic results of genetic testing, although she too suspects Ataxia and Alz.

This past week DH has fallen three times. Well, more like collapsed. His legs give out and he folds on his way to the floor. I have a belt on him so it is a slow descent. Usually I can get him upright with the "get on all fours, lift using heavy furniture". Last Tues, Home PT arrived as I struggled to get him off the floor, the "all fours" wasn't working. Went to ER, dehydrated. Came home, unsteady on feet rest of the week. Saturday (yesterday) he collapse again, I had no option but to call 911.

Since then he can't move his legs. Not even to shuffle over while lying on the bed.

He wants to move, he looks at his legs and makes very tiny movements, but not able to move at all.

Yes, i messaged his doc, hope to hear something tomorrow.

Is immobility something real, or is he scared to fall but can't articulate it?

Pat6177 · July 15

In the past 7-8 months, DH has had several episodes where he has a low grade fever, nausea, diarrhea. With these episodes, he gets very weak, falls and is more confused. And then 24 hrs later, he’s fine. I’m not sure what the fever resulted from but I’m sure it came along with dehydration. Your DH’s symptoms could be from a UTI, a fever caused by something else, the suspected ataxia. And several other possibilities. You were right in contacting the dr. And hopefully she’ll call you back soon.
Is the immobility real? I have no idea but I bet it is. If it was fear of falling, he would be able to shuffle over in bed. Just my opinion.

ImMaggieMae · July 15

UTI’s have made my DH collapse as you described and affect his ability to walk. Dehydration has also made him weak and have trouble standing. It amazes me how bad it can affect him, especially since he isn’t outwardly sick. He often has trouble shuffling over in bed, even without a UTI or dehydration. I think he’s more tired at night and he also takes meds before bed which could cause the problem. I put a lift sheet or slide sheet on his hospital bed before he gets in, positioned from about shoulders to knees. It makes it easy to adjust his position as I pull it out to remove it.

northernlady · July 15

https://alzconnected.org/discussion/comment/215894#Comment_215894

Thanks for your reply.

Yes, the immobility is real. I tried to help him move and it's like his legs are frozen.

He was checked for a UTI in the ER.

The dehydration may be the culprit, even though I'm constantly serving him electrolytes, fruit, yogurt etc

Your comment about "If it were the fear of falling, he'd be able to shuffle over..." makes complete sense.

Thanks

northernlady · July 15

A "lift sheet"? I'll look that up!

Anna2022 · July 15

https://alzconnected.org/discussion/comment/215894#Comment_215894

northernlady: It's all so murky and frustrating! I hope you find some answers soon. Did the MRI show generalized shrinkage? My DH's MRI showed generalized /shrinkage atrophy, more than expected, with a MOCA of 21, but the docs said they suspect Alzheimer's but couldn't say for sure. They said wait and see.

White Crane · July 15

My DH used to collapse like you’re talking about. He would just kind of slowly fall to the floor. We never found out what caused this. possible explanations were a sudden drop in blood pressure when he went from sitting to standing, do you Dehydration or a UTI. I hope you find an answer. I know how upsetting this is for you.

northernlady · July 15

https://alzconnected.org/discussion/comment/215909#Comment_215909

Generalized shrinkage.
Second opinion (better neurologist - we are sticking with her) saw vascular problems and after examining him for 70 minutes, she agreed cerebral ataxia was probably on board as well.

Murky is a perfect word. We don't know what we are dealing with. I know people say it doesn't matter. I guess I keep hoping there are do's and don'ts for whatever is ailing our LOs.

northernlady · July 15

https://alzconnected.org/discussion/comment/215910#Comment_215910

I suspect it has to do with his naturally low blood pressure, and lately (about a month) it got really low (86/58). So when he moves positions, I make it go VERY slowly so his equilibrium adjusts. This morning is the first time in 48 hours that he successfully stood for 10 seconds.

And yes, good thought on the UTI - which I had checked last week. Nothing then.

General comment: I just wish there were more eyes on him. I don't know what I'm seeing, and my first reaction is panic.

Finally got approval for in-home care. Visiting nurse comes once a week and PT comes twice a week starting tomorrow.

ImMaggieMae · July 15

https://alzconnected.org/discussion/comment/215902#Comment_215902

Actually, I think it’s called a slide sheet. The material is sort of like the type a light windbreaker is made of. There are fancy ones with handles, but the one we use is just a tubular piece of slippery fabric. It will slide over a pee pad with him on it, without pulling or wrinkling the pad. One of the most useful but simple things we have.

Pat6177 · July 16

with odd symptoms, it is sometimes helpful to take a video with your phone to provide to the medical folks. This is not always feasible but keep the thought in the back of your mind.

M1 · July 16

northern lady, cerebral ataxia is a bad disease, and physical therapy is unlikely to help because the problem is in the central nervous system and not reversible. You probably have to prepare for him to be bed bound. Have you thought about a hospice evaluation?

ronda b · July 16

https://alzconnected.org/discussion/comment/215919#Comment_215919

You can also fold a full flat sheet in half to use till you get one. Same principle. Goes from shoulder to knee . Using the sides to pull to turn him.