On the up....

Hi all, Coo's still on the up thankfully!

He seems to be gaining strength day by day, who knows where it'll end LOL!

It's been really nice today and I persuaded him to come out in the garden with a cuppa for a wee while and yesterday for the first time in over a month, he agreed to come to work with me!

We kinda got a system going there!


I work in the local Community Centre so while I hold my information surgery...
Coo plays a game of pool with the Caretaker!


Obviously this last month he's not been able to accompany me and Looby's been draghted in to keep an eye on things while I got to work, but yesterday...well, it was all systems GO!

Thank goodness for that,

Maz x

Coo improves...

Hi, the sun has come out at last and things seem a bit brighter today!

Coo's reduced dose of the new drug has helped, he's not so distant or closed into his shell today.
I'm glad for this glimmer of his old-self coming through as I've found the last month very difficult at times.

We began reducing the meds on Tuesday night, yesterday his depression began to lift and more importantly he's picked up his guitar.

I'm so relieved, he seems to be on his way back up again!

His seizures have taken a nose-dive but that's only to be expected with the meds changes, I'm just glad he's ok.


An improvement in things and a sunshiney day too, what more could I ask for?

Hope things are as sunny with you!

maz x

Drug see-saw again...

Hi everyone, after all the issues and difficulties adding this drug into Coo's system, it looks like it's gonna have to come right back out again!

Coo's blood results, show a further hike and there's now no way to control the level of the different drugs in his blood-stream.

Too little he seizes into oblivion all day, everyday, and too much well...ditto.
That's the dreaded drug see-saw effect!

He did avoid some of the nasty side effects but a month into the trial, he's suffering severe Flu symptoms, chills, cough, the works and continual nausea, his appetite is nil so he won't eat anything much and to cap it all he has now developed depression!

We're waiting for a specialist nurse to contact us tomorrow but Coo feels his quality of life has diminished so much, that any gains are far out-weighed by unbearable side effects.
Coo says the feelings of desperation, sadness and lethargy are as awful as when he had pneumonia and was struggling with 30 seizures a day!

It's been a very stressful experience but we had to try as it's a new drug and gave us just a little bit of hope!

Gosh it's never easy is it?

Don't you sometimes feel, everything comes at a price or is that just a tad cynical?

Let's hope for better times.

Take care friends,

maz x

The new drug see-saw...

Well, we began putting the new drug in 2 weeks ago and so far we've avoided all the major nasty side-effects - thankfully no crazy 'hissy-fits' to report...yet!

On Tuesday, it went up to the high dose of 1000mgs a day but Coo's been having some problems since.
He sleeps around the clock and does not have any energy to go out etc.
He's also lost his appetite which is not so bad if your 18-20 stone but not good if your only around 10 stone to begin with!

The new drug was not supposed to re-act with any of his other meds but I think it has!
His drug level for the other epilepsy med, is now through the roof.
The safe dose is between 40 and 80 and today the reading is 109 - it's never been so high before!!

So, guess what??

We've begun the dreaded sea-saw effect yet again today!

Here we go!

Up 'n' down and up 'n' down!

We're reducing one med for two weeks and then we'll check the bloods again and plan some action!!

Nothings ever easy is it?

I hope life's treating you kind where you are!

maz x

Anyone for Daffodils? ...

Well, the Daffodil Tea went of well!

Around 30 children painted eggs and a selection of bits and bobs decorated some Easter bonnets too!



The Tea and Scones went down a treat and the local groups made some much needed funds to keep them going.




I did enjoy the day although I didn't see too much of it.



I was in the small studio offering Reiki & Massage therapies.

It really was a stress free, fun day!



Healing thoughts sent your way.

maz x

A new medicine...

Hi all, we same Coo's Neurologist today and he's asked him to think about trying a new drug, only problem is it's got some real nasty side-effects.
psychosis, nausea, anxiety & aggresion to name a few!

I've said to Coo it must be his decision but I confess, I'm feeling very wary.

Each time Coo's added another AED (anti epilepsy drug), we've had 2 or 3 months of hell while his body adjusts to it, then major side effects for a few months with no real improvements finished off with a further 2 or 3 months of hell to wean back off!

I'm trying to be positive but I'm not at all looking forward to the coming months ahead.




I hope things are in a sunnier place where you are and I hope too for sunnier days soon.



Who know's maybe this will be the one!

maz x

Daffodil tea....one lump or two!

How do I get into these kinda things?

I've been roped into hosting a daffodil tea in our local community centre and I'm not really sure what actually happens at one so it'll be Daffy-tea with a twist!

I guess things will be ok - I've asked they craft groups who meet in the centre if they will set up some stalls on the day so there'll be plenty of people milling around and things to buy and the local Cafe will provide tea and buns.

Only one other thing to sort out...a teddy bears picnic for 50 pre-schoolers.


Well, somebody's got to do it and the kids will have a ball!

I can sense a magician, some kiddie music and loads of sticky wee fingers coming on, only one thing for it...

Pass me another jam sandwich!

maz x