[lifeisarollercoasterwithahc]

Just stick with it

When the going gets rough just stick with it ( until it starts to smooth out- maybe?)

This last 14 - 18 months I have been through he'll and back....... I have lost my walking..... .more recently i have lost my brain function and ( more horribly ) been aware myself of some of my issues...... all this is has been frustrating for me let alone my loved ones........

One thing I have noticed in all of us with this horrible condition is our drive and determination to perserve through our bad spells to brighter days.... I can't explain this determination...... you will understand it on a completely new level once you know someone or a family who has a son/ daughter with this condition....... this drive and determination is above and beyond all limits you will ever know...... for me personally I push and push myself ( even if this causes I'll health ) until I succeed...... no matter what the consequences. Every single one of us with this condition appreciate life and are happy no matter if we can move or not. We make the most of a bad situation......

I guess that could teach you something about life in general xx

[lifeisarollercoasterwithahc]

Stressed????

Nah, me? Never!

[lifeisarollercoasterwithahc]

[lifeisarollercoasterwithahc]

[lifeisarollercoasterwithahc]

When the going gets rough, it smooths out- maybe????

So since January 2019 I went v downhill physically; I guess physically I am slowly getting better but it’s the other issues that are more of a problem.

Physically it’s still work in progress but I can at least stand for so long now; however it’s my memory etc and my timeline of events that has been servely effected.

Whereas in January this wasn’t too bad now I am just about function through each day- without a short term memory let me tell you it’s frustrating for the person and even more for their families!

We take life and simple skills for granted such as hearing; our automic system which controls so much but when our bodies are out of sync we recieve knock on effects....... please don’t take life or such things for granted! When they are gone you miss them xxx

On more positive notes I am awaiting news of such therapies I can have to aid my flexibility........ please keep your fingers crossed.

[lifeisarollercoasterwithahc]

#ahc #rollercoaster #🤞forasmoother #ridesoon https://www.instagram.com/p/BttDEIuHbxG/?utm_source=ig_tumblr_share&igshid=83tydz2obr0k

[lifeisarollercoasterwithahc]

.........make sweet lemonade

So anyway since August 2017 I have gone downhill where AHC is concerned ( and nobody knows why) but since mid Jan 2019 I have also continued on that path going back to where I was as a child.

Yes that’s right peps, the more AHC attacks I have that aren’t treated or prolonged the more I regress and have to relearn skills........ ( & sometimes you don’t get everything back)

Anyway so I have lost a lot this time ( not just physically) but one thing I have done is gone social free for GOOD from a well known social platform! So much about health and anxiety now.......

Anyway it mite be a uphill struggle but I am determined not to worry about what I have lost and just try, try, and try my absolute hardest to regain what I need back........

So wish me luck folks ........ here’s to sweet lemonade!

[lifeisarollercoasterwithahc]

If life gives you lemons........

Hey, sorry I haven’t blogged for a while ( almost a year!) life’s been kinda hectic......

So anyway, I started my new therapy ( a medical Ketogenic Diet for anyone interested) I am under a whole heap of experts and being closely monitored..........

So I have reached my 1 year milestone of being on Keto........... what is the outlook? Well you knows, a new AHC treatment could come along ( I live in hope) or otherwise potential long term treatment on Keto......... it is strict, but getting easier.....

I have had a 50% decrease in attacks/ prn so I guess that preserves me on and generally I get more warnings before I get poorly so I can get to bed or sofa......

Healthwise this last year I have been on a rollercoaster with infections, bugs and the likes...... I don’t know why might come from living in supported living with staff that get every cold /bug going! Hopefully 2018 will bring less of that.......

[lifeisarollercoasterwithahc]

Christmas decorations at Bluewater Shopping X

[lifeisarollercoasterwithahc]

Woohoo

Woohoo- I'm so excited and I just can't help it............ Finally things really starting to look up! I look and feel so much better........ Went out yesterday to Bluewater, was a really good day, saw all the pretty Christmas decs! Life for me recently has been a rollercoaster to say the least.......... I'm thinking of trying a new therapy for my condition, but with things finally really starting to look up ( I don't want to say too much and touch fate.) who knows where I'll be in a while.......... Xxx speak soon xxx

[lifeisarollercoasterwithahc]

Yay....... Finally......

Yay, life is looking up, the last two days have been absolute rubbish! I'm feeling better today ( yay) hopefully life will start to look up......!

[lifeisarollercoasterwithahc]

Woo........

The last week hasn't been too bad, had a couple of attacks but (thankfully) the small attacks that take over my life and make me tired ( and a moody different person!) Seem to have disappeared ( for now at least anyway!) We'll just have to keep our fingers crossed they don't come back It's amazing how far I've come in the last year......... from a very bad experience to being back to me and hopefully getting things sorted (again)

[lifeisarollercoasterwithahc]

First Post

Hi......... Where has the last year got me? Well I moved out of my parents house!!!!!!! I'm LizLoodles by the way. I have a rare condition called Alternating Hemiplegia of Childhood ( AHC) it begins in childhood but carries on throughout adulthood. 5 facts about me. AHC is a disorder that causes alternating transient weakness of one or both sides of the body or quad ( whole body attacks) the symptoms are usually relieved by sleep and can be helped by various drugs and emergency meds. 2) I'm one in one million ( that's the incidence of AHC) 3) doctors don't know my mutation but in 75-80% of cases it's a mututation in ATP1A3 gene; however the other 20-25% doctors and researchers think there are many more mutations and are still trying to identify these. 4) in 50% of cases true epilepsy develops. 5) triggers are many from temperature changes (mine) fatigue (also mine) lack of food, food dye, sweet food, white light etc etc I have had 3 hospital trips in the last 8 months, one to iTu and two to the ward with prolonged AHC. For more info, www.ahcuk.co.uk, www.ahckids.com, www.humantimebombs.com (AHC documentary) Thanks

[lifeisarollercoasterwithahc]

[lifeisarollercoasterwithahc]

[lifeisarollercoasterwithahc]

[lifeisarollercoasterwithahc]