Recent content by Thomas933

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    Adjustable Bed Advice?

    We ended up with a split king adjustable bed with 3 possible frame heights. The 0 gravity takes pressure off my pALS hips and joints. It’s semi-firm to make it easier for him to move. I hope we get to share this bed for many years.
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    Adjustable Bed Advice?

    Thank you everyone! We spoke with our in-home peeps today - they recommend the Beauty Rest adjustable bed. In New England it’s caljed the “Tom Brady bed” because he endorses it. (I asked if he comes with the bed cuz that would be cool). Thank you!
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    Adjustable Bed Advice?

    Hello: I hope that everyone is hanging in there. My husband and I have decided we need an adjustable bed. Hopefully one where he and I have separate control. It is important that it moves up and down as he is having more and more trouble getting up out of bed. Any advice or success stories...
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    Radicava Dosing Question

    Hi -- My husband is on Radicava right now. He thinks it is helping him. Are there any resources you know of where people with ALS are on Radicava all the time and not just the 10 day (per 14-day) dosing cycle approved for stroke patients? If the drug helps those with ALS, why can't people be...
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    How to stop people from sending articles...

    Thank you and we are really close which makes it hard because I know is hurting and just trying to help! She also helps out in so many other ways, I feel bad but I will send a note...thanks again!
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    How to stop people from sending articles...

    Hi. This is a small thing but I have a dear friend who keeps sending me articles about research and treatments. And, it’s driving me a little nuts. Not 1 single time have any of the articles been helpful or led to something we didn’t either 1)already know or 2) eliminate as an option. And, I...
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    Webinar by Merit Cudkowicz on Healey ALS Platform Trial initiative (link to register)

    Merit Cudkowicz, MD, the Director, Sean M. Healey and AMG Center for ALS at Mass General on Friday, August 9, 2019 12:00 - 1:00 PM EDT An update on targets and treatments in development will be shared. In addition, Dr. Cudkowicz will share information on the Healey ALS Platform Trial - the...
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    I AM ALS - Check it out!

    There is now officially a bi-partisian ALS Caucus in the US House of Representatives. The 4 Co-Chairs are Rep. Fitzpatrick from PA, Rep. Crow from CO, Rep. Sewell from LA and Rep.Calvert from CA. I AM ALS is working to get members of the House to become members of the ALS Caucus to join so...
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    I AM ALS - Check it out!

    I AM ALS is a a patient-led, patient centric community that reshapes public understanding of this disease, provides key resources to the community, and creates opportunities for patients to lead the fight against ALS and search for a cure.They are building a movement to cure ALS. Check out the...
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    How are you?

    Great job getting the chair -- he will use it and you are giving him options which is important. Hand in there -- hope you get your appointment soon!! This disease is for the birds!!
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    Pity Party - Please pull up a chair

    Yes it does. It. Sucks. I’m so sorry for everyone’s sadness.
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    Pity Party - Please pull up a chair

    Regina - I know I’ll miss the ramps!!! So sorry, hang in there. I’m glad you are still laughing.
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    Pity Party - Please pull up a chair

    So, yeah - pity party -- the room with our beautiful fireplace is now filled with an ugly mental ramp, I lost my garage to ramps -- they are ugly and I hate them. I have to rearrange my whole house just so my poor hubby can live here. I hate this stupid disease, it can go F itself..... and...
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    How to best help my pALS in early stages?

    Okay so here are some more tips: 1) The Pride GO CHAIR -- a local organization let us have one and it is great. My husband is in the process of getting his "souped" up w/c and until we get that, this is working well. Why? Because we can take it apart and put it in any car and carry it into any...
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    Pity Party - Please pull up a chair

    There is a lot of sorrow but it also takes up so much bandwidth, we just have less capacity to handle life’s other disasters. One is enough. And ALS is more than enough. I notice that I’m less able to handle the little bumps in the road. That’s when I’m trying to ask for help.
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