1. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    1 person posted in the ALS/MND forum

    TipaCow in Daily Devotional

    Saturday, October 21, 2017 Singing through the Darkness But at midnight Paul and Silas were praying and singing hymns to God, and the prisoners were listening to them. —Acts 16:25 The world watches with great interest when a Christian faces...

  2. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    4 people posted in the ALS/MND forum

    Latest posts:
    jclement1971 in Sliding Down in Hospital Bed

    Does anyone have a remedy to keep from sliding down in a hospital bed? I am super comfortable when I go to bed between 9:30-10:00 PM. I have my head elevated and my legs too. But almost every morning, between 5:00-6:00 AM (likely due to my...

    MikeB60 in Stomach Issues

    I too have this. My wife massages my stomach. We watched a u tube video on how to do it. It is not a perfect solution but it helps.

    furtfurt in Sliding Down in Hospital Bed

    I have a memory foam topper 8" and sink into it quite deep so i don,t slide much. I don,t have much of a tilt on my bed yet so not sure if this would help you. The memory foam is very comfy

  3. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    9 people posted in the ALS/MND forum

    Latest posts:
    MikeB60 in What's the story with radicava??

    Yes I am on Medicare and I have a supplemental insurance. The only way they would cover it 100% was at a transfusion center. If the did it at home it would have been $400 per day.

    Nese11 in What's the story with radicava??

    LynetteG: call Searchlight again, but this time ask them for a nonprofit that provides grants for radicava/als. The foundation's name is Health Well Foundation. Searchlight has to give you their #; bc HealthWell will ask who referred you to them....

    rgerds in What's the story with radicava??

    @MikeB60 I'm glad you were able to give it a try and it is covered 100%! The next round will be easier, you can take 4 days off. I got a port 2 weeks ago and today I started round 2. The nurse will now come to our house only twice a month, on day...

  4. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    1 person posted in the ALS/MND forum

    TipaCow in Daily Devotional

    Thursday, October 12, 2017 A Better World Ahead For our present troubles are small and won't last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! —2 Corinthians 4:17 Deep inside us, there is a sense of...

  5. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    3 people posted in the ALS/MND forum

    Emma in Does PLM have an OCD Forum?

    @TipaCowHi Dale,In a sense yes, but not a condition specific forum - members with OCD are automatically joined to the mental health & behavior forum: https://www.patients... OCD condition page might be helpful if you would like to contact members...

    pattydd in What's the story with radicava??

    Day 2 of my infusions. A port would be nice but all is well.Can not talk.Can not walk. Right foot curls too much. Left leg too weak.I still eat and drink but everything keeps getting weaker:  arms, tongue,  Right hand showing drop foot...

    TipaCow in Daily Devotional

    Wednesday, October 11, 2017 A Reason Not to Fear People are born for trouble as readily as sparks fly up from a fire. —Job 5:7 In the months following September 11, 2001, as many as 400,000 New Yorkers suffered from post-traumatic stress disorder...

  6. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    1 person posted in the ALS/MND forum

    TipaCow in Daily Devotional

    Monday, October 9, 2017 The Secret to a Worry-Free Life "Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need." —Matthew 6:33 There are many things you can seek to live for in life. You can live...

    TipaCow in Does PLM have an OCD Forum?

    Does PLM have an OCD Forum?

    TipaCow in Daily Devotional

    Tuesday, October 10, 2017 Our Defense against Worry And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. —Philippians 4:7 We live in such a stress-filled society today. We could write...

  7. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    7 people posted in the ALS/MND forum

    Latest posts:
    Skigurl in Choking.

    My husband diagnosed with PMA last year. He chocked on a big bite of meat and we had to preform the Heimlich. He ended up with aspiration pneumonia. He had taken a swallow test previous to this incident and passed with flying colors. So maybe it...

    Skigurl in Any mattress recommendations?

    My husband can't turn in bed at all. I got him a hospital bed with a gel mattress. He was still uncomfortable and developed bed sores. He now has an air mattress that allows his body to shift a little and the mattress continuously adjusts the air...

    Skigurl in Preparing

    You all seem so on top of your disease. Our doctor tells us nothing and hasn't offered any drugs related to ALS or any clinics, etc. The only info I have is what I've been able to glean from the internet. There are no local support groups. We feel...

  8. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    4 people posted in the ALS/MND forum

    Latest posts:
    francis3 in Neck braces

    I really like the one Jason posted.Prior to trach we used this one - http://traccollar.comYou can get it in various places - including Amazon.

    TipaCow in Daily Devotional

    Thursday, September 28, 2017 Draw Your Sword The sword of the Spirit, which is the word of God. —Ephesians 6:17 The one piece of armor that is both offensive and defensive is the sword. When I go into battle, I don’t beat my enemy with my shield...

    Emma in Power wheelchairs: Your community weighs in

    @r9l13026I noticed your comment and asked our research team for more detail regarding the selection process.Who and how did you pick people for this evaluation?  Read the recap and nothing of value.PatientsLikeMe and Permobil entered into a...

  9. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    5 people posted in the ALS/MND forum

    Latest posts:
    melshark in What's the story with radicava??

    I am not sure. I have medicare and regence as supplement. Don't know who pays for what, but my cost is zero.

    McWmn in Advice on thick secretions please

    Foods that create phlegm : All Dairy Products, Bananas and Rice.

    rkntla in What's the story with radicava??

    If people taking edaravone (or any proven or unproven treatment for that matter) would track data over time in plm profiles, it would supply so much helpful data for those who follow.  We seem to have lost the tradition of sharing data in the last...

  10. 22637 thumb
    TipaCow
    Sex: F
    Data Quality: 2 stars
    Bulbar: moderate
    Arms: moderate
    Chest: moderate
    Legs: moderate
    I have:
    ALS

    5 people posted in the ALS/MND forum

    Latest posts:
    edwinm in Moaning or growling to stop coughing?

    my family notices that i do a low moan while i am eating. it may be subconsciously trying not to choke on the food? it works so far....

    mmsan66 in Upcoming NEALS Webinar of Interest

    The ALS Association/Northeast ALS Consortium PALS Webinar: Environmental Risk Factors for Amyotrophic Lateral Sclerosis Elijah Stommel, MD, PhD, Geisel School of Medicine at Dartmouth Thursday, November 2, 2017     1:00 - 2:00 PM EDT Amyotrophic...

    francis3 in What's the story with radicava??

    Skrogy - ow does BCBS come into play for you?  Are you on a medicare Advantage Plan, is it your Part D Medicare, or a private insurance?

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