I feel so very guilty for only writing when I need your help. Time is never your own. The days and demands fly by and before you know it months go by.
John's newest symptom are little seizures and/or blackouts if you will. He's had six (6) since last Easter, with four (4) occurring within the last two weeks. Usually they happen when he is laughing, which is often over exaggerated. He will freeze, eyes wide open, usually fall and then have absolutely no idea what has happened. Recently the worse one was when he fell straight back, like a fallen tree. Luckily I was standing right by him, but he's 220 lbs and one of these times he will take me with him.
Has anyone else experienced this type of thing? There just never seems to be an end to possibilities with this disease.
I may not write very often, but I always read the posts. Sending my love to everyone. So happy to see Kevin and Liz are back! Alice
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Abrecheisen53
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What a curious symptom. I wonder if this is a vasovagal response? Or somehow related to blood pressure when laughing? If he laughs sitting down, does he faint? I'd speak with the neurologist about this.
No experience with this one (yet!) Hopefully someone in the forum will be able to fill you in.
But as you say there seem to be endless possibilities withPSP!!
Does John have high blood pressure?? Definitely worth checking with the Neurologist - do keep us posted - this is how we all learn. Please do not worry about posting at tricky times -PSP keeps us all very busy!!!
I think my husband has blackouts, or daydreams? He gives blank stares and drifts away, like he’s not there. He’s usually sitting down so luckily he hasn’t fallen. His face looks pale, puffy and his eyes aren’t focused. When he “goes away”. and then snaps out of it, he says he feels weak. I have him lie down and I raise his feet above his head to get the blood flow back up to his face. I’m not sure if it’s the same symptom that you’re describing? Silly me, thinking it’s just a new norm and not really questioning it. I’ll talk to his doctor about it when we see him next week. Thank you for bringing this subject up.
I'm sorry that I have no experience or knowledge about this.
I hope you get it sorted out.
Warmly
Kevin
Larry has had a few episodes of not being there for a few minutes. He is unresponsive when I ask him what is going on. I’ve seen other people mention this on this site. Having read about on here it wasn’t a big surprise when it happened.
Yes we did as well but it was close to the last days. So just keep him safe so he doesn’t fall. Try to stand next to him until it passes. Hard to tell what’s going on. You might want to ask the doctor for guidance but as you know every person with this disease is different. Take care.
Thanks everyone. I do have a call into the Dr. It will probably be just another symptom you must learn to deal with. I do so appreciate everyone’s help. I will let you know what I find out!
Mom occasionally had these and l do believe hers were small siezures. One of my best friends has had many of these episodes through the years caused by meds (she did not have PSP).
I will caution you about catching your hubby as he falls...l tried to catch mom with one of her backward falls & we both went down. I was her pillow but my head hit a curb & my back suffered. So please be careful.
Dad had several "awake blackouts". By the time they started he was not walking anymore so always sitting. The longest I recall lasted close to 8 minutes or so.
Doctors were informed but no reason other then CBD was given.
Hi. I know exactly how you are feeling. I am going thru the same thing you are and have no help. Cannot find any either. I am his full time care giver and have bad days of depression All his family live out of town and have families of their own. I have just
been trying to talk with someone who is going thru the same thing as I am. It is heartbreaking to watch him. He has no voice so we cannot even converse with each other.
My situation was similar. All his family far away, and it was an almost an unbearably stressful and sad ordeal. Very isolating and èxhausting. This site and all the folks here saved me, and the practical advice helped me take care of my sweetheart as I could never have done otherwise on my own. You aren't alone! Hang on. Peace, ec
My husband had something a couple of days ago. After reading about different types of seizures, it think that is what he had. We were heading out to lunch, when he sat down and had a blank look on his face. I talked to him and he really didn't respond, but I was able to direct him to his recliner and got him in so he wouldn't fall. His eyes fluttered and rolled back into his head, his mouth was moving oddly I guess is the best way to describe it, his legs were straight and his feet were turned in. His leg and arm muscles were extremely tight, and his hands curled up. This went on for probably 2-5 minutes. When it was over he had no memory of it happening what so ever. It took him about 2 hours to get back to his normal. A similar version has happened before with just effecting his eyes and mouth, still no memory afterwards. We're going to the neurologist in a month and I plan on talking to him about this. I'll let you know what he says.
Boy, these episodes sure are scary aren't they? John is having an EEG next week. I doubt they'll find anything. I would think that unless John is actually having a seizure during the procedure, nothing will show. Will let you know if they do.
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