hkmke
New member
- Joined
- Aug 11, 2009
- Messages
- 3
- Reason
- PALS
- Diagnosis
- 03/2003
- Country
- Hon
- State
- Hong Kong
- City
- Hong Kong
It is my mom who diagnosed MND, that's how I got to this forum, I am new here. I dont normally read these forums, but I guessed her situation deterioted badly these couple of weeks and, amongst other things, she lost the ability to serve the web, hence, here I am. I feel very sorry to hear that there are actually so many ppl having this around the world and I sincerely hope you could be strong psycologically and think positively. This is really the main cure for it.
We come from the far east, Hong Kong, we have tried all sorts of medication (of course, sensiblely and wisely), western or Chinese medication. All along the years, we only choose to rely on Chinese medication, to put it exact, we mainly use Chinese herbal suppliment. I could not say its working scientifically, but at least, up till now, it is runing into her 7th year.
She had pneumonia recently, I might be wrong, but its probably the illness which normally put an end to a person who has MND. She wanted, and had a chance to leave us for another happy place and end the suffering, we respected her decision, but somehow, ... she left hospital with a tracheostomy hole in her throat, and lost her voice.
We are putting alot of effort to try and understand what she is expressing from just her lips, meanwhile, making her to feel meaningful to live... . Does anyone know a better method for her to express herself? She obviously need to use the bipap machine all day.
Also, after staying in hosptial for weeks, i guess her muscles deterioated more (especially with those high dose medicine), now, she cannot click the computer mouse, we tried a programme called auto clicker, but its quite troublesome. She can move the mouse, but if she can't click, she cannot bascially use the computer. Someone here probably have the same problems she is facing, would be grateful if you could share your thoughts and experiences on it.
We come from the far east, Hong Kong, we have tried all sorts of medication (of course, sensiblely and wisely), western or Chinese medication. All along the years, we only choose to rely on Chinese medication, to put it exact, we mainly use Chinese herbal suppliment. I could not say its working scientifically, but at least, up till now, it is runing into her 7th year.
She had pneumonia recently, I might be wrong, but its probably the illness which normally put an end to a person who has MND. She wanted, and had a chance to leave us for another happy place and end the suffering, we respected her decision, but somehow, ... she left hospital with a tracheostomy hole in her throat, and lost her voice.
We are putting alot of effort to try and understand what she is expressing from just her lips, meanwhile, making her to feel meaningful to live... . Does anyone know a better method for her to express herself? She obviously need to use the bipap machine all day.
Also, after staying in hosptial for weeks, i guess her muscles deterioated more (especially with those high dose medicine), now, she cannot click the computer mouse, we tried a programme called auto clicker, but its quite troublesome. She can move the mouse, but if she can't click, she cannot bascially use the computer. Someone here probably have the same problems she is facing, would be grateful if you could share your thoughts and experiences on it.
