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Stephen O'Neill replied to the topic Newly diagnosed? What do you want to know right now? in the forum Diagnosis Information and General Questions 3 months, 3 weeks ago
Hi Dagmar, i hope you are well?
I was just wondering if anyone can point me to a pharmacy or supplier of the new drug Albrioza.
I am in Australia and am really struggling to find out where in Canada or the US i can actually buy the drug, as i am allowed to import it as an individual for my own therapy here to Australia.
Can anyone point me in…[Read more]
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Stephen O'Neill replied to the topic What's the latest news on AMX0035? in the forum Research Topics 5 months, 2 weeks ago
Hi Sonsu, hope you are doing the best you can in our circumstances.
I use an NIV* at night, it took some getting used to and getting the pressures right, but i wouldn’t (couldn’t) go back now. Help with drooling issue, just a few tips i have found useful before i go on to the LVR Kit. I use a neoprine chin strap to keep my mouth closed, play…[Read more]
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Stephen O'Neill replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 6 months, 3 weeks ago
Hi there,
I am in Australia and have been looking in to obtaining Albrioza in Canada.
I have been in touch directly with Amymlyx Pharmaceuticals and they expect the drug to be available late July in Cananda, Here is Australia we have a scheme where y doctor can import it, but i need to find an outlet to buy it from like some of you have…[Read more]
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Stephen O'Neill replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 7 months, 3 weeks ago
Hi Everyone, hope you are all well.
I am keen to try the Radicava Ors, but i live in Australia, and it is not approved here yet.
I have a script from my doctors and can import the drug myself under the personal importation scheme or the SAS scheme, but i’m struggling to find anywhere to buy it online, can anyone help at all please?
Regards,
Stephen
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Stephen O'Neill replied to the topic What's the latest news on AMX0035? in the forum Research Topics 8 months, 2 weeks ago
Hi Dagmar, hope you are well and still using your bubble machine?
I have an LVR kit now too which helps you pump air in to your lungs to expand them and stretch the muscles around the lungs and its helped enormously with my lung capacity, i just thought i would mention it as its easy to use and very helpful.
I am trying to find out if AMX0035 is…[Read more]
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Stephen O'Neill posted a new activity comment 1 year ago
Hi Dagmar, i wanted to thank you for your advice on the Bubble Bottle, i have made one and although just having started to use it, i can see how it can make my lungs work in a non stressful way to improve capacity and strength, and look forward to the results, thank you. xoxo
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Stephen O'Neill replied to the topic Has ALS changed your sleeping pattern? in the forum Living With ALS 1 year, 2 months ago
Hi Everyone, Stephen here from Melbourne Australia.
Firstly, thank you all for your posts and contributions, it has led me to try many different supplements and hopefully they are doing some good, might be a bit to early to say for me for now. I was diagnosed Jan this year but started getting symptoms mid last year.
I had been having a lot of…[Read more]
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Stephen O'Neill became a registered member 1 year, 2 months ago
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Hello Stephen,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
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Hi Dagmar, i wanted to thank you for your advice on the Bubble Bottle, i have made one and although just having started to use it, i can see how it can make my lungs work in a non stressful way to improve capacity and strength, and look forward to the results, thank you. xoxo
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Hurrah! It’s so good to know it’s helping you. Thank you for the positive feedback 🙂
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Hello Stephen,
I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with A…[Read more]
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Hurrah! It’s so good to know it’s helping you. Thank you for the positive feedback 🙂