rocmg
Distinguished member
- Joined
- Dec 29, 2008
- Messages
- 389
- Reason
- PALS
- Country
- UK
- State
- N/A
- City
- N/A
dear all,
first off, happy new year. i hope you all enjoyed your friends and family. this year was definitely more emotional for me. i'm so down right now i tired to sleep and just couldn't.
to recap:
my mum has been having problems with slurred speech since april. i have been at university in America most of last year and returned home to be confronted with the idea that she could have ALS. its really breaking my heart. i can't look at her without wanting to cry or hold her. she knows something is up. every time we're having a conversation and then i remember about what she might have i tell her i love her so much and i know she knows that something isn't right.
anyway, tonight was awful. i watched her have labored conversations with her friends (her speech is thicker when she is tired) and one of them was pretty drunk and told me she thought my mum's speak had gotten worse. she told me she doesn't like answering the phone anymore because she's scared of not being able to make out my mum's words. yet my dad and my mums GP have assured me her speech has improved since September/October when it was really bad. the GP even wrote in her referral letter she has seen marked improvement in my mum's speech since her lowest ebb.
On the advice of MNDIreland, I have made moves to get an appointment with one of Ireland's leading neurologist which i hope will be scheduled in the next couple of weeks. I thank her for that kind and valuable advice.
The referral letter included copies of the reports from the neurologist in Belfast from two visits my mum made in August and October. Below are the excepts that scare me greatly:
August report:
"There appears to be slight wasting and fasciculations affecting her tongue. She seems to have a bulbar and pseudo-bulbar palsy."
October report:
The EMG and nerve conduction studies were suspicious of an anterior horn cell process. She is aware that Motor Neurone disease remains a possibility but as things appear to have improved within the past weeks, the diagnosis is far from certain. She is not going to start Riluzole just yet."
I'm just at a loss as to what all this means. I hate the language this neurologist uses in his report -- "seems" "may be" "appeared." Its imprecise, scary and I find his offering her Riluzole without a firm diagnosis incredibly unprofessional.
My mum doesn't drink or smoke and continues to walk 3 miles every morning with our dogs. despite her hardiness and robustness I know her mind is constantly on this. I miss hearing her laugh and cry. She doesn't make the same noises she used to when she does either. sometimes i think she comes close though.
Her speech has definitely gotten worse since July, but her lowest ebb was September/October and I'm assured she has picked up since then.
I'm so confused and angry and alone and terrified. of all the people in my life this could happen to, she is the one i wanted to keep safe forever - or at least as long as i could. this feeling of dread is consuming me. i haven't slept in days. i only eat because i want to spend quality time with her. i was taking photos of her at the party tonight and wondering which ones i would use on her memorial card. i can't stop crying about this and i have no familial support since they don't understand or are in denial. if anything happens her i don't think i can go on. she is my only reason to still be alive today.
first off, happy new year. i hope you all enjoyed your friends and family. this year was definitely more emotional for me. i'm so down right now i tired to sleep and just couldn't.
to recap:
my mum has been having problems with slurred speech since april. i have been at university in America most of last year and returned home to be confronted with the idea that she could have ALS. its really breaking my heart. i can't look at her without wanting to cry or hold her. she knows something is up. every time we're having a conversation and then i remember about what she might have i tell her i love her so much and i know she knows that something isn't right.
anyway, tonight was awful. i watched her have labored conversations with her friends (her speech is thicker when she is tired) and one of them was pretty drunk and told me she thought my mum's speak had gotten worse. she told me she doesn't like answering the phone anymore because she's scared of not being able to make out my mum's words. yet my dad and my mums GP have assured me her speech has improved since September/October when it was really bad. the GP even wrote in her referral letter she has seen marked improvement in my mum's speech since her lowest ebb.
On the advice of MNDIreland, I have made moves to get an appointment with one of Ireland's leading neurologist which i hope will be scheduled in the next couple of weeks. I thank her for that kind and valuable advice.
The referral letter included copies of the reports from the neurologist in Belfast from two visits my mum made in August and October. Below are the excepts that scare me greatly:
August report:
"There appears to be slight wasting and fasciculations affecting her tongue. She seems to have a bulbar and pseudo-bulbar palsy."
October report:
The EMG and nerve conduction studies were suspicious of an anterior horn cell process. She is aware that Motor Neurone disease remains a possibility but as things appear to have improved within the past weeks, the diagnosis is far from certain. She is not going to start Riluzole just yet."
I'm just at a loss as to what all this means. I hate the language this neurologist uses in his report -- "seems" "may be" "appeared." Its imprecise, scary and I find his offering her Riluzole without a firm diagnosis incredibly unprofessional.
My mum doesn't drink or smoke and continues to walk 3 miles every morning with our dogs. despite her hardiness and robustness I know her mind is constantly on this. I miss hearing her laugh and cry. She doesn't make the same noises she used to when she does either. sometimes i think she comes close though.
Her speech has definitely gotten worse since July, but her lowest ebb was September/October and I'm assured she has picked up since then.
I'm so confused and angry and alone and terrified. of all the people in my life this could happen to, she is the one i wanted to keep safe forever - or at least as long as i could. this feeling of dread is consuming me. i haven't slept in days. i only eat because i want to spend quality time with her. i was taking photos of her at the party tonight and wondering which ones i would use on her memorial card. i can't stop crying about this and i have no familial support since they don't understand or are in denial. if anything happens her i don't think i can go on. she is my only reason to still be alive today.
