Recent content by Tofinodays

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    Respironics CoughAssist CA-3000 for Sale

    Our CoughAssist mechanical insufflation-exsufflation machine was used for approximately 3 weeks and is in perfect condition. It comes with a used adult small mask, two brand new filters and a wheeled stand. Asking $1500 obo. I am located just west of Toronto. If interested, please contact me at...
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    Moaning

    con't P.S. I don't know what the moaning is but my husband made a moaning sound for several months while he was able to communicate effectively and he said that it was involuntary when breathing. It was quite a distressing sound but not indicative of pain in his case.
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    Moaning

    I am so sorry that this is such a horrible disease and know the anxiety that you speak of. My husband did not wish support workers, canes, walker, ceiling lift, bi-pap, or medications for the most part. I tried to be as respectful of his wishes as possible but could not continue to function...
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    Caregiver options

    I have found it to be almost unbearably painful to bring in the support and assistive devices that my husband was not ready for emotionally. Finally after the canes, walker, power wheelchair, hospital bed and personal support workers, I started to tell myself the same thing that I did while...
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    Caregiver options

    I too am a planner and I have discovered a few things with ALS: it helps to plan, it is extremely difficult to navigate the world of ALS needs, and sometimes answers which we could never have predicted present themselves. I wish that I had connected with the ALS Society and our local ALS...
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    A little bit scared.

    I can't imagine anyone who wouldn't "fret" the night before a diagnostic visit and since you're concerned about living with "gratitute and grace", I imagine that that's exactly what you will do regardless of the diagnosis. I'll be thinking about you tomorrow.
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    swallowing

    My husband made the same decision as yours regarding the risks of aspiration. As long as we was able to eat solid foods, he did so with full knowledge of the risks and it was scary but felt okay to me as it was important to him. We gradually moved from small pieces of regular foods to softer...
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    To those with ALS, what do you think was the cause?

    I do not mean to be rude but I'm not entirely sure why you are gathering testimonials. What we "think" does no meet the rigors of scientific scrutiny so I cannot see how it informs the discussion of causes of ALS.
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    27 and just diagnosed with ALS

    Our ALS specialist in Toronto indicated that Riluetek is the only medication that has been clinically proven to slow the progression of the disease. He explained that, in my husband's case, this could mean another 2 or 3 months of eating, swallowing and, I might add, being able to operate his...
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    Getting a Shot

    I get facet block injections in the cervical area approximately three times a year. They reduce my migraines from approximately 4 - 5 times per week to only occasionally; I have a herniated disc, two bulging discs and degeneration of the facet joint. If it's the same thing that you are...
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    How to love the unloveable

    I think it's possible to grieve wholeheartedly for every loss while appreciating everthing that we still have and are able to do. I just don't think it's possible to truly accept what is happening without grieving deeply. I was encouraged to look for the gifts that ALS has to offer by an...
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    Happy Birthday?

    It sounds like a wonderful birthday in spite of the coughing and choking. One thing that has helped me to avoid the "I wonder if..." is to change it to "This is the only birthday/father's day/Christmas" we will have in 2012. It might be a bit of self-delusion but it allows me to focus on the...
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    How to love the unloveable

    I'm so sorry about your voice. I think it's natural to feel betrayed by your body. What I have noticed with my husband it that the hardest time for him is when he is in the process of losing something. Once it is gone, he is able to accept it because that battle is over and he is in a much...
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    I need advice

    I'm so sorry that you are going through this; it is such a cruel and overwhelming disease. I would recommend that you contact your local ALS Society to find out what support is available. It took us almost two years to connect with ours because my husband refused to go back to the ALS Clinic...
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    Symptoms are worse- please advice? Wright maybe?

    Tina, Dealing with uncertainty is so terribly difficult and I'm sorry that you have to be going through that. I agree with oscar1 that it is best to wait until the neuro appointment as hard as that is going to be. Your neurologist will then be in the best position to determine whether or not...
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