Hi everyone, i'm a new member

[ailymay]

Hi, my name is Ailsa and i was diagnosed with ALS 3 weeks ago. I have a 6 year old daughter called Isabella.
I am a 30 year old female so very unlucky to have this disease.I am being very head strong at the moment but i'm finding it hard with the physical side of things as I am young and still like to party and socialise. It's all a very surreal! :-o

 

[ottawa girl]

Welcome. Sorry for your diagnosis. Indeed, each of us is unlucky having ALS, but it is even more tragic when small children are on the journey.

Do you have a partner and family for support? Once the reality sinks in, you will find your new normal. With that will come new ways of doing things. Adaptation. You will be able to socialize and party hardy - but you'll have to learn how to pace yourself and conserve energy.

This forum will offer you great support and reliable information. I'm sad to say, there are several members in your situation with young children; these members will be invaluable to you and your family.

Hope to get to know in the years ahead.

 

[ailymay]

Thanks Elaine,

No I don't have a partner as he couldn't deal with the diagnosis but fortunately I have a large close family and lots of friends to help.
I am working on the conservation of energy as I am struggling with the fatigue point of view.
I just about heard of this disease before diagnosis but didn't know anything about it so I hope to find this forum helpful from others in our situation

Ailsa xx

 

[AfraidButNotAlone]

Keep praying God Bless

 

[skipper66]

Hi Ailsa,
Welcome to the forums but so sorry for your need to be here. Glad you have family and friends that will support you. Is your daughter attending school yet? Do you have limb onset or is yours bulbar? You will find alot of support on here. There are also some PALS on here that are as young as you that you could chat with. I don't know if you have it there or not but my dad drinks Boost or Ensure and they supply him with some vitamins that I think help him a little. Take care and give a shout out to any of us if we can help with anything. Take care, Kim

 

[vickim]

Hello and sorry to say welcome. Everyone here is great and full of information and compassion. Jump in whenever you are ready, we will be here.

 

[jellis86]

Hello, sorry you have to be here but this place will be a God send of information!

I was diagnosed in February of this year and it took me a couple of weeks to find my new "normal".

As each day passes, I just think how fortunate I am to have family, friends, and this forum for support.

Take care and God Bless you!

Joel

 

[celticgirl]

Hi Ailsa, welcome but sorry you have to be here , you will find lots of helpful info on this forum, I sincerely hope you have a slow progression as Isabella grows up, carry on being you and do everything you always have! take care, Anne xx

 

[ailymay]

Terminally ill young mum Ailsa Malcolm-Hutton's 'bucket list' before she dies of motor neurone disease | Mail Online

Thank you everyone, had a fall the other day and in a bit of a bad way. Hopefully I will heal soon xx

 

[Nikki J]

So sorry and a belated welcome

 

[Txgirl]

I am sorry that you had a fall. I do hope you heal quickly. Thanks for sharing the article about you and your daughter. You all are so beautiful.

 

[ottawa girl]

Alisa,

Wonderfully inspiring article about an inspiring trio of beautiful girls. Your bucket list is interesting - Especially the boy trip! I'm betting Disney will be the first item checked off. Isabella will have a blast.

I'm very sorry you are going through this. Truly.

 

[R9L13026]

I'm in....

 

[vickim]

Loved the story and I hope you get to cross off every item on your list. So sorry you had a fall. Sending healing (((hugs))) your way.

 

[pinkmoon11]

Hi Ailsa...welcome. I enjoyed the article/bucket list. And the pictures of your family. I am sorry about your fall and even more sorry that you received the diagnosis that you did. But as you said you have a close family, friends who will be such a good support group for you. And as I have found, the people here are very supportive and will help in any way they (we) can. Take care. ---K.