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rocmg

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PALS
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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.
 

JohnMc

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Joined
Apr 12, 2008
Messages
50
Reason
PALS
Diagnosis
10/2008
Country
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State
AZ
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Phoenix
rocmg-

I started on Riluzole about 5 months before I got a definite diagnosis of ALS. I think that this is pretty common, so I wouldn't worry about your Mom's doctor on this point.

I hope you can get some sleep - I think your time spent with your Mom will be more valuable if you can get some rest and stop worrying so much. I hope that she doesn't have MND, but even if she does, it is not the end of the world.

John
 

Danijela

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Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Hi there. Sorry to hear about your mum. The uncertainty and vagueness are not helpful and you seem overwhelmed by the current situation.

I cannot comment on speech improvement and the implications on the final diagnosis but hope you get an answer soon. My partner (diagnosed with limb onset MND in Nov 08) has been offered and has been taking Rilutek even though according to El Escorial criteria his diagnosis is not "clinically definite ALS". The medication has not caused him many side effects so we can not see a harm in taking it. (note: my understanding is that clinically definite ALS can often be established only by autopsy).

Whatever the outcome things will settle down little by little even though this may seem impossible right now (I recognise many of your emotions). Take care. Danijela
 

4rhl1981

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Jan 1, 2008
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Loved one DX
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US
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OHIO
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Wickliffe
Hi there. Sorry to hear about your mum. The uncertainty and vagueness are not helpful and you seem overwhelmed by the current situation.

I cannot comment on speech improvement and the implications on the final diagnosis but hope you get an answer soon. My partner (diagnosed with limb onset MND in Nov 08) has been offered and has been taking Rilutek even though according to El Escorial criteria his diagnosis is not "clinically definite ALS". The medication has not caused him many side effects so we can not see a harm in taking it. (note: my understanding is that clinically definite ALS can often be established only by autopsy).

Whatever the outcome things will settle down little by little even though this may seem impossible right now (I recognise many of your emotions). Take care. Danijela

This country (USA) autopsy has decrease from 50% to less than 6% and with the decrease is the loss of valuable data and research, I know for many this is may be taboo, but I believe is an important process of possibly identify causes, the diseases process, and confirming DX. I encourage all to have autopsy perform, not just those with ALS DX but everyone as the information could be a future life savior, not just for your families but other as well.
 

brooksea

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HM
rocmg,

Very sorry your Mum is having difficulty with her speech.

It is normal to feel the way you do with the possibility looming that your Mum has MND. Hopefully you will get a definitive answer soon.

If she does have MND (or anything else for that matter), you will find the strength and resolve to carry on and support your Mum with every fiber of your being. In other words, you will learn to live with it and be able to enjoy each passing day with her. It's no picnic, but I have a feeling you will be up for the task. (Sorry to be so cliche!)

One day you will wake up and say to yourself, "OK - We can handle this!"

I will be thinking of you and your family. And by the way, we all have family members that are in denial or that distance themselves from the situation. It will be their loss, so don't waste time on them. I learned that the hard way!

Happy New Year to you and your Mum! I know she is very proud to have you there for her.
 

rocmg

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Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
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N/A
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N/A
thank you all for your kind words of support. today was another bad day for us. i'm trying my best to stay strong, hoping and praying with all my might that what she has is not ALS. i don't know how anyone else goes through this, has went through it, and had a positive or negative response.

god bless.
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi Rocmq, I know you feel down and frustrated but you are doing really well. You should ring the mnd association if you are just looking for advice, or to chat. They have a nurse in there and she will answer any questions. Until you get a diagnosed it is going to be hard for you, but remember she may not have mnd, and if she does, sometimes its just not all that bad. I hear you saying you miss the way she laughed etc, my mam was diagnosed Oct 07 and was suffering for some months before that, she still laughs and jokes etc, ok so she cant dance and sing the way she used to etc, but its just different thats all. I think her body is changing but her mind is still the same, she is still in there. She loves her kids and grandkids, we stil bring her out to her friends, into town to the shops etc, maybe shes in a wheelchair now but she loves everybody running around after her ha.

What I think is her body might be slightly fading but her spirit is larger than life!
Enjoy everything you do with her, even if its a bite of lunch in a favourite restaurant!
 
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