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  1. Nikki J

    Importance of reading to your children

    The Million Word Gap Parents who take time to read aloud to their children are doing them a huge favor. Not only is it a memorable bonding activity, but it's also a way to jump-start a child's education and put them on the fast track to literacy. Many parents and caretakers know this...
  2. M

    I have real weakness - please help

    I haven’t been here in a while. Busy having kids and all that. I had a baby six months ago and have not really been paying attention to myself. I have noticed thought that I am unable to lift things with my right arm when it is extended I’m a certain way. I became curious so I tried lifting...
  3. T

    "Important information" template?

    Hi all, I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.) I know we should probably have compiled such a thing already given that my...
  4. T

    tricks against fears and anxiety

    Dear all. I've been caught into a depression spiral lately. I'm quite stable symptomwise as for now but I'm taking a heavy beating mentally. The most challenging moments are dusk and mornings just after waking up. There creep the worst thoughts of any day: anger, 'why me', mediations about my...
  5. S

    Edaravone feedback on its effectiveness

    Hi first time on this forum. Seamus from Ireland diagnosed1year but symptoms about 4 years, 49 married 4 kids. What I would like to ask people is about Edaravone. It has been in use in the US since 2017. It is not available in Europe yet but there is a large clinical trial this year on the oral...
  6. B

    My kids will be orphans 😕

    Hi. I’m 46 with a 9yr old daughter and identical twin boys who are 7yrs old. Their father died in 2016 and I’ve been diagnosed with MND (ALS) jan 2018. I’m from Australia and my mum passed away November 2018 from MND. I have the gene. I have 5 siblings. Only one other has had a gene check and...
  7. A

    Back after 5 years... still worried

    In 2012 fasciculations started. I also have pin and needles and some other little things. Went to the neurologist, he did some tests and diagnosed me with BFS. Slowly my worries disappeared and I went on with my live. I'm 42 years old now and a mum of 4 kids. But... since 2014 I got some...
  8. Kristina1

    update on me

    I haven't posted in a while so I wanted to update. One of the main reasons I haven't been on here is... I'm writing a book! Or trying to. It has nothing to do with ALS or anything autobiographical. It's a scifi/fantasy romance. I've long been an avid fantasy reader, and always had stories of...
  9. T

    Resources for teens with a parent with ALS?

    Being a teenager these days under normal circumstance is hard enough (for example, I have a senior and we are in the throes of college acceptances/rejections/etc.), but add having a parent with ALS to it.... Aside from therapy, what has worked for your kids? Does a forum like this exist for...
  10. T

    Slipping Away

    Hi all. I feel it wont be long until my husband is set free from the horrid disease. He's been in hospital now for 4 weeks with pneumonia and sepsis and is getting worse. I've no-one to talk to about it, I don't want to be so upset to my kids as they aren't coping at all with their dad's...

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