Phone call early this morning: Liz has had another seizure. This time not so bad and her bottom lip is not trapped in her teeth. She was given midazolam a benzodiazepine for this sort of thing (no one is sure what these seizures are). When I got there she was relaxed and comfortable - very sedated. She managed a couple of smiles. We held hands and she was able to answer a few questions with hand squeezes, "no pain" "Yes, I want water"
This roller coaster!
Here is the Valentines card I got her - Banksiesque... It made me smile
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Kevin_1
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Hi Kevin, glad Liz is responding to meds. We have reached another stage where Mary will soon be unsafe on the stairlift because she cannot bend in the middle. OT are procuring a hospital bed, tilting commode a portable hoist for downstairs. Plus a new adaptable wheelchair which unfortunately will not fold. This means I will have to buy a WA Vehicle!! It never ends but I am determined to keep her life as normal as possible. Any ideas out there for buying/renting second hand wheelchair accessible vehicles?? Regards Rob
You might want to start another thread for the vehicle. Folk might not see your request here.
I never went down the mobility vehicle route. So I don't know much about it. I seem to remember there is a government scheme. I've had a look for it online, but couldn't find it. Might have been cut. I know you can Vehicle Tax reduction.
Can Mary Stand with assistance? We have a car for mum where the seat comes outside the vehicle, you sit down then it transfers you in. We have this for mum and as long as you can transfer from chair to chair it’s perfect.
Unfortunately she is immobile and can only stand with an electric stand aid. She will shortly need a hoist. Currently I get her into our car by using a slide sheet on her seat BB and physically lifting her myself but my back is beginning to give out
I always hated the "well X condition is happening but we (medical staff) don't really know why..." . I am glad she is resting comfortably, that is pretty much the sole consideration as things progress.
Does Larry not get quite sudden 'step downs' then?
Liz does, every now and then I would get up and another bit of functioning had gone.
I think of you guy's quite a lot... I too do 15 minutes on an exercise bike each day. So every time I get on it I think, "Wonder if Jeff is keeping it up?"
He hasn’t had a dramatic step down to date. It’s all been so very slow as to not be all that noticeable. I have to stop and think about where he was a year or more ago and compare him to that. The latest is he has stopped using the rollator to get to the kitchen for a meal. He is riding in the transit chair.
I only get to a workout about once a week. The more cranky I am the more I know I need to do it. If you are doing 15 minutes everyday you are an inspiration.
That is such good news that Larry does not have step downs... they are miserable.
Yes, I know what you mean, the worse I feel the more I know I need to do it, but the less likely I am to do it. PSP can induce a lot of anger, I know.
Yes, I exercise every day excepting when I feel too upset, or can find a reasonable excuse... It can be as low as three times a week, I am very good at excuses some weeks. But I try.
Mums seizures were very frightening for me to witness & keep her safe. After she had two they started her on epilepsy meds to try keep them at bay. It took many trials of drugs to find one she could sort do tolerate. She did have more seizures but not as violent as the first two incidents.
The admiral nurse told me that in neurological conditions it is quite common for epilepsy to develop along the way
Sorry to hear that Kevin. The only positive seems to be the effective pharmacological interventions.
Love the valentines card. Years ago I bought my hubby a TShirt saying Juan in a million and I was thrilled this year to find a “ one in a melon” jokey valentines card and my husband smiled and remembered the T-shirt. Hope your card will have had a similar moment of shared memories.
Sending my love to you both, what a shitty disease this is Kevin, whoever thought this one up was feeling very vengeful. Glad Liz is settled again, bet you wonder what can be thrown at you both next!
Love to Liz and to you. The thing to remember is she won't remember what happens. It sounds too as though the new medication might be working as this one was not as bad as the last one. She might need an increase in the dose though?
Charles only had one seizure. It was two weeks before he passed. He was more coherent afterwards. They are unusual to be sure. And PSP is so unpredictable. Take care of both of you and cherish this time. I wish I had.
Hi Kevin ,it's great to see the communication going between you and Liz and these seizures must be troubling for you,at least the meds are working and making Liz comfortable,keep strong xx Peter and Kathy
Thank you Kevin. Ups and downs. Take one at a time. Best wishes to you and Liz. x
Just a quick note to let you & Liz know that axes will be thrown tomorrow at my home & l will be baking my famous Granni's Nutritional Oatmeal & Raisin Cookies today for tomorrow's event. So l am inviting everyone here to use their imaginations & join us.
Tomorrow's main project is tearing apart my patio blocks by the pond... l asked my son to take them to his new home & create a patio. He built mine when he was 16 & it was lovely & well used for years. But l can no longer carry my cup of tea that far so l will be content to visit his new patio with a cup of tea.
Also want to let everyone know this week news... hubby & l dedecided to stay in our log home. When the pasture becomes too much for us to mow... we will let Mother Nature take over. Sending Love & Hugs, Granni B
Hi Jean, once l sprinkled a packet of wild flower seeds into the air in a haphazard way... but l guess Mother Nature is the only one that system works for. Sending hugs... Granni B
I was lucky... first (& last) ax stuck. My son put all three in the bullseye. To cold for more throws... so met up for lunch with the kids & had a nice time... kept my foot out of my mouth (yeah).
Kevin , I think the cookies are in the store... using the name Quaker... l borrowed their recipe.
Our pasture has never been fenced. We used to have a pony but he was content to be stay with us and not wander off... l always believed he thoght he was a dog. l have offered to let my neighbor bring her lamas over to graze. They are such lovely animals but watch out... they can spit a far distance.
My son cannot make it over today but the Ax Throwing will still happen so pack your imaginary bags & swim across the pond. Sending Hugs... Granni B
Oh, Kevin, l will still be throwing axes... hope the kids will join me... they need to have some fun & work off frustrations of all their wedding talk. Last week they came for blueberry waffles & brought their gorgeous husky pup... my cat tried to escape & jumped on the kitchen table... the pup flew through the air & landed on the table... the kids were mortified. I had a silly laugh at the kid's reaction while hubby saved Miss Aggie. One more memory to add to my log cabin book.
They do say that you find out who your real friends are in times of need and I found that to be very true - not always those you expect either ! They have stuck by me even after P died.
The Portuguese custard tarts are my favourite but I`ve never been brave enough to make them myself, so well done Kevin - you are putting me to shame. Enjoy.
What a lovely thing to say. Thank you Richard... most day's I feel like I am just a punter struggling through.
Tomorrow I shall wear my underpants outside of my trousers... It will be a grim sight so I shall spare you all the photos lol. I most likely will get an assessment for dementia or arrested.
But hey!
Thanks for being there for us. It makes a real difference.
A Jamie Oliver recipe which didn't have a slug of olive oil in it... amazing! It's a keeper just for that!
They went down well... I have a limited repertoire for sweets... and cake baking is a total no go zone for me... but I can bake a decent baguette, sourdough loaves and fifty more different beads (seriously)... baking a Portuguese custard tarts had my adrenaline going... not my turf... funny 'ole life. Hey, they were edible Good enough for me.
I am avoiding here... I am totally gutted about Liz and her protracted struggle. She loves life, even the one she has now... but she has had enough as well. All I can do is be close, hang in there and give her oodles of love and support. I dread visiting her and seeing her suffering, but that's not acceptable, so I put on my face and see her every day unless friends and family are seeing her. Besides, when I am not with her all I can do is think about what I can do to make her life better. I'm sure you and every other carer knows that one.
May I ask? Was it a seizure that took Garth? Was it quick? I am now thinking that it is likely going to be a seizure which will take Liz, but I don't know how that goes.
Hi Kevin, Yes, he had a massive seizure late in the day (an ordinary day) - he'd had step-downs but nothing I'd seen as a seizure before. It may have been some kind of stroke or aneurism - the coroner wouldn't approve an autopsy, and we hadn't completed donation documentation, so I will never know for sure, but it was sure as shootin' some kind of neuro event. It was very quick - he was gone in seconds - before the paramedics arrived (although they hooked him up and tried to get a heartbeat for at least half an hour or more..)
I'm in your corner and rooting for you two, as so many here are. Hang in there, and take care of yourself. PMessage us whenever it may help - you know we'd be right on your doorstep if we could. 😊💖
Thank you so much for coming back with this information. I wasn't aware that this could happen with PSP. Though I take your point that you could never be sure it wasn't something else.
Liz is young (60) and she has no history of heart disease, epilepsy etc. So I am of a mind that this is most likely something caused by her PSP.
I will prepare myself and her sisters for the point that her ending might just be quite sudden. We thought we had lost her when she had her first seizure and she has had a second milder one since.
Thanks for your supportive words too. You are great ofering for me to PM you.
I do hope things are as good as they can be for you.
Glad Liz was relaxed and comfortable and in no pain, and that she was able to respond to your questions. Like the valentine card. Keep thinking of you both. xx
I decided to give my PC a make over. It's something like 15 years old and was becoming more and more cranky. I replace components from time to time to try and keep it sprightly, but I fear it is nearing its end and so am preparing to build another... that takes a lot of time reading to find the right components... its like lego for not quite grown up men! Nearly there now.
Liz has found some sort of acceptance. She is much more tranquil now. She still has no beliefs in anything after this life. I find it difficult imagining her struggle with just 'End'.
I guess the weather is cooling for you folk in Kiwi-land now Jen.
I just buy a new one when my hardware slows down - then have difficulty driving it!
My grandson upgraded his hard drive, and then found he had to buy a whole new suite of Windows! So hope you have done your homework.
Pleased Liz is tranquil. Give her my love! I guess the concern for her "End" belief does not worry her - hence her tranquility. Not like you, as you are still of a questioning mind!
I constantly find myself 'reunited' with past family through thought and memory - and the odd sensory experience! I still hope to be where they now are.
Yes. Weather is cooling but not quite done with warmth. More misty damp mornings that disrupt flights. Gather we are due for another drenching shortly and are promised a 'warmer than usual' winter. Pleased my heatpump and insulation due shortly, but have not been as cold as in old house!
Kitchen chaos starts in just over a week - then I will be less rich and hopefully have more time to myself. Been hectic project managing everyone by myself! Next move must be the small garden!
Never any need to apologize, Kevin! I'm glad for the sake of your & Liz's relationship that the little life that's left is more tranquil.
Just want you to know that many of us think of you often and send hugs. ❤️☀️💜
I'm doing as well as I imagine anyone could. I feel a shift in the last month or so. I think I am "accepting" his death now, although I still don't know how I will fill the space left by him.
I take great comfort from the wisdom of others on this site - I know there are no magic numbers ("1 year") but that eventually one does feel better. I have way too much time alone but don't want to go rushing off to volunteer at something then back out because it wasn't thought through!
It's interesting... Almost the exact opposite of where I was at this rime last year: where I had no free time, no energy, no sleep - but the greatest love and purpose in my life!
Yes I know what you are saying, but I don't think I will really understand until our time comes.
The mind is pretty good at healing itself. I put my trust in that.
I do lots of activities to keep me occupied. One might say that is avoidance tho'. I don't go out much or see others, but I've always been a bit of a non joiner.
Wishing you healing.
Warmly + big hugs
Kevin
Thinking about both of you... Sending Hugs.. Granni B
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But I try.
Seizures as well now, don't know what's next. 
Is anyone familiar with blackouts or seizures?
Advice on Dystonia (Seizures)
