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    Hi, I’m not sure if you still come on here. I was reading your posts about Mestinon because my...

    Hi, I’m not sure if you still come on here. I was reading your posts about Mestinon because my Dad has ALS and is starting Mestinon tomorrow. I wanted to see how your Husband is doing and if you believe Mestinon continued to slow his progression? Thank you for any info you can share.
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    Feeding tube decision...

    My Dad had a Respirologist appt and his FVC is now at 51%. They are pushing more for him to consider a feeding tube in the spring at his next appt. He’s very down about this as he feels this is the start of the end. Other than his breathing and his right hand/arm his disease hasn’t...
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    Canadian pALS

    Accelerated access to life saving treatments and expanded clinical trial research for ALS is desperately needed in Canada. ALS Action Canada is a new patient-led initiative, formed in February 2020, that is advocating for urgent access to promising therapies for Canadians living with ALS. In...
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    New PALS

    I'm sorry to hear about your Husbands diagnosis. My Dad was diagnosed July 2018 and we did the same thing the first few months. Searching the internet, mostly this forum, for any possible treatments that could help slow or stop his progression. Today my Dad has progressed from where he was...
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    FVC Standing vs Laying down

    Thank you for your reply Nikki. He is on Bipap at night. Doesn’t need it in the day but can get out of breathe if he’s running around with the Grandkids. He says he can’t lay down at all anymore without feeling like he can’t breathe. He went to the dentist a month ago and said that was...
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    FVC Standing vs Laying down

    Hi everyone. I hope you're all staying safe during these uncertain times. I had a question regarding my Dad's recent visit to his respirologist and FVC test. His numbers standing have dropped from 66% 6 months ago to 62% but his laying down numbers have gone from 38% 6 months ago to 32%. My...
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    BiPap now needed...

    My Dad has his first Respirologists appt today and is now very down as his breathing is not what he was hoping. His FVC was 66%. He’s having some trouble getting a deep breath laying flat in bed and so she suggested a BiPap at night. My question for anyone that is willing to share is are...
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    SVC pulmonary function test

    And in April this year when they said his reading was 76% what does that mean vs 3.03 litres? sorry I’m so confused with these breathing tests
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    SVC pulmonary function test

    Actually I found a calculator online. Says he should be around 3.6. Does this mean we should now be talking to doctor about BiPap?
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    SVC pulmonary function test

    Thank you! Does anyone know what that calculation formula is?