Green Queen
Very helpful member
- Joined
- Mar 30, 2015
- Messages
- 1,304
- Reason
- DX MND
- Diagnosis
- 4/2016
- Country
- AUS
- State
- Western Australia
- City
- By the beach
Well. Where do I start?
I came here one year ago, almost to the day, whilst awaiting a firm diagnosis of PLS. 6 months later, I received that diagnosis. I was very happy to have an answer, though it never really sat right with me. I had done too much reading, too much research and asked lots of questions. To me, everything pointed away from MND in any form.
It just so happens, that out of the five main Neuros I have seen, three agree with me.
Unfortunately, they all say the same thing. They don't know. They will probably never know.
No cause. No treatment. No prognosis. No name. No one like me, that they are aware of, alive today.
Which means...what? What do I do now?
We are trying rehab, no guarantees, but I'm willing to give it a shot.
Quite a few of you would have hemiplegia, so I know I'm not really alone.
I haven't told my real world friends yet...hearing certain...words of encouragement...does my head in and makes me feel worse. 'Getting it' really doesn't translate well, unless you really do get it...like here.
I feel slightly hypocritical, being here, but I missed you all too much.
I've changed my...thing...to say I Have a Friend with ALS...that's you lot, Cals included.
If all I can do to support you is pray and occasionally try and be funny...I'm in.
Thanks for putting up with me.
I came here one year ago, almost to the day, whilst awaiting a firm diagnosis of PLS. 6 months later, I received that diagnosis. I was very happy to have an answer, though it never really sat right with me. I had done too much reading, too much research and asked lots of questions. To me, everything pointed away from MND in any form.
It just so happens, that out of the five main Neuros I have seen, three agree with me.
Unfortunately, they all say the same thing. They don't know. They will probably never know.
No cause. No treatment. No prognosis. No name. No one like me, that they are aware of, alive today.
Which means...what? What do I do now?
We are trying rehab, no guarantees, but I'm willing to give it a shot.
Quite a few of you would have hemiplegia, so I know I'm not really alone.
I haven't told my real world friends yet...hearing certain...words of encouragement...does my head in and makes me feel worse. 'Getting it' really doesn't translate well, unless you really do get it...like here.
I feel slightly hypocritical, being here, but I missed you all too much.
I've changed my...thing...to say I Have a Friend with ALS...that's you lot, Cals included.
If all I can do to support you is pray and occasionally try and be funny...I'm in.
Thanks for putting up with me.