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  1. R

    Dry mouth as throat in bed help please

    A chin strap worked for me. I'm using a BiPap with a full face mask; the strap helps keep my mouth shut so my breathing is primarily through my nose. Every R T I talked to said it wouldn't help but as usual their answers were from a book as opposed to actual experience
  2. R

    Dynawrite is good and light

    Dyna Writer i have a re conditioned Dyna Writer (zero cost which works for me) and find it very useful as my speech is laboured and difficult to understand. One of the best features is the ability to adjust the volume. In a group setting one needs a higher volume than can be achieved with an Ipad.
  3. R

    Trouble chewing food

    Yes, chewing is a major problem. Once chewed, swallowing is OK. But having food hiding between my gums and my cheeks also make eating difficult.
  4. R

    First fall

    I've fallen so often that it's pointless trying to keep track.My only salvation is to use a rolling walker for stability. The foot braces don't do a great deal of good and my cane doesn't add sufficient stability. So here I am using a walker to navigate around a small apartment, primarily...
  5. R

    These DPS notices say news is good for over 50% of the newly diagnosed ALS patients

    Go look at the Patients Like Me forum. One fellow has posted a long description of the Diaphragm Pacing System together with photos and fairly comprehensive explanations.
  6. R

    Is it time for a Peg Tube?

    Get your PEG. My FVC had declined to 40 & it was a devil to overcome the surgical trauma but think what it would have been like if my FVC was in the 30 area. The higher your FVC when you have the procedure the more successful the end result in the longer run. Tube feeding is a nothing deal once...
  7. R

    Rilutek

    I'be been taking this drug fo r four months . The only significant side effect has been fatigue. Sometimes staying in bed all day seems an attractive option.
  8. R

    Braces or not?

    Have a photo but can't add it as an attachment. I'll send it to you if you can give me an e-mail address. [email protected]
  9. R

    Braces or not?

    Yes, get ankle/leg braces. The carbon fiber variety are feather light. They are not the whole answer but they do help especially if there is any thing except a short walk involved. Not all shoes accommodate braces but most do.
  10. R

    Sorry for the delay in answering. My voice started to go a full year before I was referred to a...

    Sorry for the delay in answering. My voice started to go a full year before I was referred to a neurologist. In the interval I was given 3 separate diagnosis for the problem, all incorrect. I kept being told things would improve. Instead they kept getting worse. It wasn't until my walking...
    • Ronc75
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