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still a problem for us -- seizures


nancyl

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Dan had a "shutdown" day yesterday.. the kind i dread - he wont talk, eat, drink, ignored me the whole day . Very effective at letting me know he wanted nothing and no body... and this morning we got a 0630 seizure.. full fledged grandmal-- lasted what seemed forever. I almost called 911 as it just wouldnt end. the best way to describe the last half ot the seizure was like a baby - "suttering" after crying for a long time.. Another "new" thing i hadnt seen for such a extended time . usually it would happen - the suttering maybe 30 seconds this just went on and on... we survived it... but i am a little worried. he still isent with me.. he responds by just seeming angry ( i guess who wouldnt be)-- and then it makes me think about katrina and her blogs of the issues she has. and i wonder if maybe dan is stuck in something right now.. he just seems locked in. The nurse will be here soon to check on dan and we will talk, but seizures are so mysterious - i am not expecting a magic wand from her... but the objective medical opinion is soo nice to get. especially at times like this.-- well she arrived and despite my efforts dan still wont talk to me, but would communicate with her... I'll take it, but it hurts (my feelings ) - i mean we went to bed on saturday night - no issues - he had went to church, out for supper, played his cards and went to bed... and woke up a crab... i know better than to ask why - there are no answers, how well i have learned that.

another little piece of my world lest i forget and think i am living on easy street ( yes that mistake could be made lol) not....

we do things sometimes that make people think that maybe my life isent to bad... but it is a extreme effort - mentally and physically for me and anyone with me.... when i was in AZ with sarah, april took dan to the casino while weston and i visited with sarah. i was reminding her of the pill stash in the bag.. the valium if he gets to "excited" - that means a crash will follow.. the extra clothes and wipes washcloths and small towel incase of a BM accident , the cofax we use to tie dans leg so it doesent constantly slip, the sani wipes in case of dans compulsive cleaning kicks in.... basically a tutorial on caring for her dad - who she see's on a daily basis , but isent normally in charge of the hands on care...it all went pretty good in AZ .. and with all this cold and no sun this certainley contributes to the "mood"....

Well hopefully, dans mood improves and we can get on with - i don't know - something to do, besides - nancy fretting on the couch.... and yes that is me making the choice to allow his behavior to "get to me" i am very co dependent -- good thing Dan wasent a alcoholic... i never used to be like this - i was a pretty strong person in terms of your issues are yours and mine are mine in a relationship, now with level of care dan needs that line is so blurred - i cant even see it......

 

And somewhere is a little boy named weston who i try hard to model - normal- but with uuumpa in bed so much "not feeling good" what is normal.... ???

I guess it ( normal) is what we make of it...

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Nancy, I pray for DAN and you that something can be done where he can be back to his usual self of being how he should be!

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Nancy, your list reminded me of all I have to take away when I looked after Ray, which is why we concluded our travel to anywhere but family in 2006. Too much gear to haul around!

 

Try to offset the silence from Dan with your own version of noise, your music, your housework, your out-loud daydreaming. I used to have to do that on days when Ray went to bed and sulked or sat on the verandah with his lips compressed. Your spouse is always going to have off days and angry days but that does not mean you have to share them. Sometimes I knew Ray wanted to shout: "Turn that music down!" but he resisted even that.

 

Seriously we all have (had) issues and somehow we learned to cope with them. I guess your problem is there is such a wide range of emotions and behavioral variations to deal with. Do your best and forgive yourself when you get it wrong.

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Nancy: so sorry for the recent setback.

 

I do understand that you are concerned that there is a medical issue with Dan's seizure and I do hope the nurse was able to give you some insight.

 

I don't know that we will ever stop worrying, fretting, trying to solve things. I think when you have found your perfect mate, father or mother of your children that just maybe something that we learn to live with. I can't advise what to do to distract you - nothing works for me, except once Bruce is in bed for the night, comfy, has his TV remote and I have everything set up for the morning, finally some me time. Too tired to do much, but I do try to do a little something for me. Go easy honey, take care.

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So sorry; I sent you some St Paddys Day cookies but I guess that's not going to help much now ;-(

 

Hope tomorrow things turn around.

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I just thought about this and-- DUH-- Dan is coming up on his 3rd strokaversary..... in 9 days ( march 12) it will be 3 years.. doubtful he know the exact date - but , i believe he realizes the "time" is near..hmmmm

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This year I sort of knew it was the anniversary but it wasn't a big deal for me, for a change. Never would have believed it way back when.

 

Glad to share the calories!

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dan is feeling better - everytime we can get through one of these - "episodes " for lack of a better term i feel we CAN get past episodes... but geez we loose DAYS and DAYS to this .... but we get a glimmer now and then - i live for those days ....

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test - hmmmm..... my test came back posted. When you first wrote this post, I responded twice, and it never showed. This happens to me a lot, maybe the board is doing something at certain wee hours that will not accept posts then. So, I thought I'd do a test today and see if my post showed up! Just something about how much I hated how this happened, especially right on the heels of that horrible stomach virus.

 

Also, wondered if his pre-seizure shutdown could have anything to do with his body going into a state that was part of the whole process of it getting ready to have a seizure.

 

Also was thinking about how the vet told me if Bella had a severe seizure to take get her to a doctor, as it was too hard on them and they could give her a ...can't think.. one of those shots that calm you down. I'm thinking they must have those for people... and if you are someone that is known to going to have more seizures, why can't you just have the shot so you can give it to him? The same idea as those who have those injections for severe allergic reactions - they are ready for them.

 

I sure hope you and Dan have some good days coming.

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sandy - the loss of a post has happened to me to, not often but like you said probably a updating thing..

last week i responded to a gal, and it was there but like the next day it was gone... but she had doubled up on her initial posting and it was being combined to avoid confusion so i guess it got lost somehoe there....... valium is the go to but i dont know that it would have any "speed" intramuscularly .. and unless his port is accessed than i can get it in that way either - and i kinda think since his port is so close to the heart it might not be a optimal place either... i do have a valium rectal gel - but after watching dans seizures - there is no way i could get that "up there" with out hurting him.. the man is pure muscle - tightly contracted.. and then there is the whole - people- shouldnt have injectable controlled meds in their home... i would prefer if i could just give him a shot to control the seizure but there is a lot of potential to kill him by giving him to much - even a small amount to quick could do it- but at a hospital they can counteract if that happened.... so like many things in our healthcare system sometimes animals are treated more humanely than humans .. and in all honesty as troublesome and they are troublesome as the seizures are - compared to a epileptic with uncontrolled seizures - dans is OK once every 2 months is not to much cause for concern - the concern that they are always looking for is a "change" in the pattern indicating the meds need adjusting or changing. although lamictal the drug dan is on generally is a good lifetime use drug with good results provided it is increased properly when the initialization of the drug begins ... it took a year , to get the drug to a optimal level.... ohh i babbled on and on and on - sorry ( and yes you were on the mark with the day before was a AURA day - the seizure was coming-- and the postictal day after the seizure was a recovery day) --- SANDY i hope you are doing OK it is not like you had a walk in the park either as of late.... WE NEED SPRING !!!!!!!!!!!!!!!!!!!!!!!!!!

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