Recent content by CarolSue

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    Tube feeding side effects? Which Formula?

    I have a feeding tube that I currently use for my meds. I see the day approaching where I will need to start using it for nutrition. What are the side effects? Will it be diarrhea after every feed? What formulas are best to reduce diarrhea? Ive heard of gravity feeding and a pump....HELP...
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    Started Hospice and have questions

    Thank you all for your comments. CarolSue
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    Another Mistake...

    Hope you are doing better...saying a prayer for you, Pete. CarolSue
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    Started Hospice and have questions

    I went for my clinic visit a couple weeks ago and the neurologist suggested hospice. I've lost 18 lbs in 3 months. I knew I lost some weight but not that much. My FVC was 39, down from 41 three months ago. Both my husband question the accuracy of this reading as we've both noticed a...
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    coughing and difficulty breathing

    I agree about using the suction machine. I sometimes use the suction machine more than the cough assist. I get what feels like a glob of mucous in my throat and it will cover my airway. As soon as I feel it I go for the suction. It works for me. CarolSue
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    Thanks Tillie and Kim. I sleep in the living room with a lamp and TV on. I hate going to sleep so usually "stay up" till 1 or 2. Last Sunday night I decided to go without Ativan before "bed" and paid for dearly it. I was still awake worrying about everything under the sun at 5 am when my...
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    I have the same anxiety about not being able to move. At times I feel like I'm about to throw a child like temper tantrum. I can still just barely move my legs, if I'm in an upright position I can usually move them with the help of my hands. While lying down I cant really move my legs at...
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    Give it a caption...

    Agnes PLEASE! For the last time...No, the wheelchair does NOT make your butt look big!! CarolSue
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    Altering Pants?

    My alteration job was unsuccessful... I just don't know what to do. if I have any pants/shorts on (my husband has to put them on me)I cannot get them off or pulled down for a potty break. Right now I'm running around naked from the waist down, sitting on a hand towel, covered with a blanket...
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    What CBD Oil do you use?

    I went to Charlottes Web site. There are 3 choices... Everyday oil - 10 mg hemp per 1mL Everyday Plus oil - 25 mg hemp per 1mL Everyday Advanced oil - 50 mg per .06mL What have you all started with? Suggestions...
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    What CBD Oil do you use?

    I'm going to try CBD oil. I've looked online and there is no way to know which is best. I watched a video on Hempworks which claims theirs is gown in Kentucky, is the most pure, is 3rd party tested, and uses the entire plant minus the THC. Any thoughts or suggestions? Thank you, CarolSue
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    Bulbar onset - Internal tremor

    I never mentioned it to my Dr, but well before diagnosis, on occasion, I felt what I would describe as internal tremors or vibration type sensation. I have limb onset. CarolSue
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    Question about cough assist.

    Probably a dumb question... When using the cough assist, the machine sucks the air out so fast that its difficult to actually "cough". So do you muster a cough or just let it suck the air out?? Do you use it a set amount of times per day or as needed? If there is air blowing out around mask...
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    What Antidepressants are you taking?

    I take Buproprion one in the AM and one in the PM. The second was added after diagnosis.
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    Altering Pants?

    Oh boy, I checked it out and I was hoping for something simpler. Thanks for the link, but if anyone else has a simpler method, like for yoga type pants let me know! CarolSue