I'm 21 and my mum may have ALS :(

[Lily321]

Hi

I'm 21 years old and currently at university. At my graduation my mum started experiencing slurred speech, to which we put down to champagne. Since then my mum's speech has gradually got worse and worse. At first they thought she may have had a stroke but that has since been proven wrong, along with a number of other conditions.

She has not yet been told she has ALS but we are pretty certain she has it. On her medical form it says 'progressive dysarthria and bulbar palsy' and from what i've read this basically means she has ALS. Am I wrong?

I was wondering if there were any other people in a similar situation to me?
I'm finding it really hard to concentrate at university at the moment as during my undergraduate degree I relied heavily on my twice weekly phone calls with my mum and it's getting to the point where I can't talk to her anymore because I can't understand her i'm also struggling to come to terms with the fact that my mum might not be around much longer

Also, what can I expect to happen? I understand that it happens differently for everyone.

Sorry for the dis-jointed message and thanks for any responses.

 

[SMP51]

Lily I am so sorry you are going through this scary time. Please give investigation into your Mother's diagnoses time, worrying about the worse case scenario is energy ill spent. I know it is hard not to worry.
Your Mum has a large batteries of evaluations, blood tests, EMG and nerve biopsy (about in that order) before they will decide it is ALS. lots of stuff to rule out first.
take care and be blessed with a calm heart

 

[Lily321]

She went into hospital at the end of July and had a lot of tests done then, all came back negative (including blood tests, EMG etc) and it seems that now they're at a loss to explain what is wrong except ALS. She has been sent to see a Eear, Nose and Throat doctor but the neurologist has said that she doesn't expect them to find any problems
Thank you for your reply, it means a lot. Just praying that my mum will be okay!

 

[SMP51]

our son is 20, he is very quiet personality......your worry helps me remember that he walks through this with us, so thank you.

 

[SMP51]

Hi

i'm also struggling to come to terms with the fact that my mum might not be around much longer

.

I will tell you what I told our son, while he was in tears about this the only time I have seen.
"yes, your Dad is going to die, we all are. Your Dad is sick and there are many things down the road we will have to deal with, but your Dad isn't dieing tomorrow, next week, next month or next year.....he isn't going away anytime soon."

if nothing else, learn to love and enjoy the now, ;-)
hope this helps some

 

[Lily321]

Thank you for your reply again, it's making me feel so much better knowing that other people are experiencing what I am!
What you said to your son I'm almost sure will have made him feel so much better, puts things into perspective!
Trying to enjoy the now!

 

[celticgirl]

Hi Lily, so sorry you're mum is going through this! I know it's very hard to deal with, try and treat your mum the way you always have, she's still your mum on the inside, do as much enjoyable things as you can and just LIVE for each day :smile: take care, Anne xx

 

[Lily321]

Thanks for your reply Anne. It's hard for me to do much with her as I'm at university, I will see her at Christmas and she's coming to stay with me in a week, so i'm just trying to look forward to that for now! I try and speak to her as often as I can but it's getting harder as it can be difficult to understand her :/ take care too Anne, thank you