Determined
New member
- Joined
- Apr 16, 2008
- Messages
- 2
- Reason
- PALS
- Diagnosis
- 07/2006
- Country
- AU
- State
- New SouthWales
- City
- Coffs Harbour
Since the onset of my ALS symptoms in Oct 2005 my condition has declined at a steady rate, first one leg then balance, other leg then the arms, hands, neck, voice etc. Went from cane to walker to scooter, gave up driving, into electric wheelchair.
Traveled the road that all desperate people travel, the overpriced vitamins, minerals, anti oxidents, CQ 10's, special diets etc etc etc. All the things that make the snake - oil salesmen wealthy and do nothing for you except upset your bladder and bowels! Finally went to a holistic doctor who did a full blood work up which showed that I had wasted an awful lot of money! now only take vitamin E & fish oil.
The one blessing was that my breathing and swallowing were still fine, great apatite, love my food, minimal weight loss. February this year disaster, started wakeing up fighting to breath. started chokeing on food. That was a very scary development, one that raised the spector of having to decide whether to go the respirator / peg route or just bow out gracefully. Not at all what I had planned!
How wonderful it is that it is usualy at our darkest hour that Providence steps in? I was looking on the Australian ALS forum, Ozpals and someone was querying Lithium A long term survivor on the site recomended LDN as a safer, more effective option. What the hell is ldn? A quick email gave the answer Low dose Naltrexone, I am aware that it has been derided and pooh hood on this forum but compared to some other things it is cheap has no side effects and in my case restored my breathing, swallowing to normal within two weeKs, Hallelujah !
Cheers, Determined
Traveled the road that all desperate people travel, the overpriced vitamins, minerals, anti oxidents, CQ 10's, special diets etc etc etc. All the things that make the snake - oil salesmen wealthy and do nothing for you except upset your bladder and bowels! Finally went to a holistic doctor who did a full blood work up which showed that I had wasted an awful lot of money! now only take vitamin E & fish oil.
The one blessing was that my breathing and swallowing were still fine, great apatite, love my food, minimal weight loss. February this year disaster, started wakeing up fighting to breath. started chokeing on food. That was a very scary development, one that raised the spector of having to decide whether to go the respirator / peg route or just bow out gracefully. Not at all what I had planned!
How wonderful it is that it is usualy at our darkest hour that Providence steps in? I was looking on the Australian ALS forum, Ozpals and someone was querying Lithium A long term survivor on the site recomended LDN as a safer, more effective option. What the hell is ldn? A quick email gave the answer Low dose Naltrexone, I am aware that it has been derided and pooh hood on this forum but compared to some other things it is cheap has no side effects and in my case restored my breathing, swallowing to normal within two weeKs, Hallelujah !
Cheers, Determined