Wings

beauti...priceless thank you so much i will most certainly find als untangled..

Sorry about your pm access being lost. I don't know how to tell you to fix it. Some of the original moderator people on this forum have recently passed and I think they are going through some transitions here.
Check out PLM if you can...
Great peeps on here and many frequent both forums often.

Also a Great site is ALS Untangled. I have tried to post this link (several times) to your forum topic Alternative therapies, but it keeps being removed. Just google als untangled.

I know. . . I am ow only phone. Theetters are too tinstone to spell correctly haha

Hi Wings, just wrote a huge long post and I was just finishing when my iPad went flat . Will try again tomorrow, sorry

seems my pm privalage has been removed -i am hoping it is a glitch in the system - who can i post that looks after this site to find out what has happening

You beuti I will join - i just see my private messages prvalages is removed - i had one there but cant access it is jumped back to this main page how can pm be removed -are they private? as stated or do mods read them?

Have you tried Patients Like Me ? It is great social network for people with medical conditions. It allows you to track your progress, treatments,weight, FRS,FVC and other stuff. They have a good forum too.

ahhh all back now - i had temporary 'just down of my page here with pm gone friends etc - i thought i had been "blocked.. nice to know i am still able to post in what most of us coming from democratic countries respect the right to freedom of speech. Of couse i understand a few rules that are there to protect the site as as advertises selling products ... scammers etc - im non of that and pleased mods have me back in action

Thats cool. I always do that. Never can quite work out everything on here.

Welcome to the forum family wings!

Hi Alyoop - another friend ty i love your three wee dogs! Sad to read so many have gone from here! I do think there needs to be more 'MND action in NZ" i think partly its also due to the nature of the disease too that not alot seems to happen... and in part the size of the country and lack of resources - I have thought about starting a local support group - but find it enough just getting through sorting out my own "things".. Kepp in touch

Hi wings. I tried to use the NZ forum, but could never work it out. I don't know of any NZ forums up and running. I don't come here much anymore. A certain other kiwi has driven a stack of people away. It's quite extraordinary how many have left because of one person, very sad. But she is always right ha ha, even has her own thread to attack people on.. Sad indeed.

great mthapa it may take a few days

thanks again for giving time to reply me. yes, I strongly feel that there might be financial support group for affected patients & family. it is not only for me or my country, it is necessary for the affected patients & family living throughout the world & having poor financial situation. i have gone through very difficult circumstances in last 10 years, many times death seemed easy than surviving. i would be glad to meet your friend operating organization to help disabled people in nepal. I live in capital city, so he won't have problem to meet me. you can mail me at [email protected]

Don't fret, you'll see it under 'Send Message" in the blue bar under your name on your profile (this) page.