Recent content by AlDowns

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    Traveling with my ResMed Astral 150

    I now have a replacement Astral 150 with a functional internal battery. Yay!
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    Tiredness

    I admire each and every one of you that has replied. You have been dealing with this longer than me. my daily goal anymore is to be emotionally and spiritually strong. That is the best I can muster. Praying for the end. (he has caused us to be born again to a living hope through the...
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    Traveling with my ResMed Astral 150

    My Avaps, the Astral 150, is of the vintage 2018. That is an important detail, the internal battery is defective; it beeps consistently when not connected to electric. This has been authenticated by the Director of Quality Assurance at ResMed in a public email; sent to us December 2023. Our DME...
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    Tiredness

    Regarding the exercise, I am now down to range of motion done by my wife. I do use the walker to get around the house. I was not given the Use it or lose it, but instead don’t overdo. Thanks for the responses.
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    Tiredness

    Hello All. As my ALS has progressed, I am becoming very weak and every activity, no matter how menial, winds me so the exhaustion level just increases. I am not talking about a walk around the block but just between rooms in the house. I spend my days sitting in my recliners and wheelchair...
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    Earthing - Grounding

    Certainly ocean beach time would be great. But I live in MN, where the snow is still melting. 😏 My meditation is generally done as I read my Bible. I will check out what guided imagery is. Thanks
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    Earthing - Grounding

    wondering if anyone has benefited from the use of grounding mats or grounding products. It is generally used to deal with inflammatory issues or overuse conditions. Within the context of the book, the author lists ALS as a disease that can benefit from earthing. I have a friend that is looking...
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    Fasciculations are becoming ‘painful’

    Yes. It can be in my arm, my rib cage, and my abdominal muscles.
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    Fasciculations are becoming ‘painful’

    I am a bit surprised that my fasciculations are becoming painful. They might be a 3 or 4 on the pain scale, sometimes it can cause a gasp due to the surprising cramp that can persist for a minute or more. The standard twitching is just annoying. Is this pain an expected part of the...
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    The selling of Jesus....

    Yes God’s Grace is so very sufficient. That is the decal I recently put on one of my wheelchair fenders. And that certainly preaches clearly.
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    The selling of Jesus....

    Excellent replies to Clearwater Al. To Al from Al, I have been a Believer since the age of 12. I have every confidence in my faith in the Godhead and the evidences of their providence in my life as an individual, as the leader in our home, and every setting I have found myself. Have I had...
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    Suffering

    Excellent collection of material on this personal and emotional situation. When I shared my diagnosis with my grandchildren, I shared that I h ad no idea why I was inflicted with this disease, but that God wanted to accomplish something more powerful through h ow I deal with it. Can I give Him...
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    Shower buddy for shower over tub

    My local ALS Association stocks those SB units. The tilting feature will be important as I lose core strength to sit upright. I have one that we are currently only using the shower chair portion. I need to order a longer bridge unit for the rolling between toilet and shower. And yes, the only...
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    New drug selected for platform trial

    I am already participating in the Regimen E, trehalose, trial. And looking forward to the next opportunity. My local clinic is starting their efforts for activation of the Regimen F. Maybe I can do that trial?
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    New drug selected for platform trial

    This trial sounds like it will be quite limited due to the candidacy be qualified to the ALS experts from MGH. Is that inaccurate?
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