Recent content by laurel

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    Màking hospice decision

    az girl, just one more perspective with this difficult decision. I would seriously consider hospice. I am a retired RN. Families often are just not good at making decisions about when and how much medication to give--too many factors as you are close to their hearts. They fear doing the wrong...
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    Joanna I hope he feels much better in another few hours. Perhaps when he gets back to square one, you can talk to the doctor about him staying on Pimozide 1 mg since he seemed to do okay on that. Those medications are pretty potent. That is why so many mentally ill people don't want to take...
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    I worked as a RN in Emergency Psychiatry for most of my career. Some people are extremely sensitive to anti-psychotic medications such as Pimozide. They experience extrapyramidal side effects such as shuffling, stiffness, drooling. His doctor should be called to discuss those side effects...
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    New article on Pimozide

    Another article on Pimozide. Clinical trials in Calgary. I tried to find the old thread without luck. ALS patients take anti-psychotic drug in clinical trial led by Calgary researcher - Calgary - CBC News
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    Another Mistake...

    Pete I am so sorry to read that you are really exhausted after your outing. Slow it down lad, keep doing what you enjoy, but knock it back by half is my two cents. Hubby has CIDP and couldn't have coped with that marathon day that you had. Keep enjoying activities but really think about how...
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    Best bidet toilet seat?

    We have had bidet toilets since 2007 as husband has atrophied hand/arm. So we have had lots of experience with them. His favourite model was a top of the line Toto that had automatic flush, automatic seat up, etc. Very expensive but nice (I think around $1800). They may have discontinued the...
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    Thinking of you Chally! That must have been scary for you i.e. the bleeding and being in ICU. Take care. Laurel
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    No reason to feel like that. We all have different responses to medication. I take some pretty hefty doses of buffered aspirin for arthritis and yet my husband bleeds rectally very easily from taking small doses. What works for most can cause grief to another person. Don't be hard on yourself...
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    Bathroom remodeling question

    Karen we used to have a moderator named Joel. He put together a great blog of things like bathroom design, designing lifts, etc. in his ALS blog. The bathroom design is on page 2. He was a great fellow and I sure miss him. joelc's blog | ALS Support and Help Forum
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    My wife died of ALS last Monday, Nov 27,2017

    finiteguy, your words were hard to read and heartbreaking. I am so sorry. I wish you peace and healing in the weeks to come. Laurel
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    Is this really ALS?

    Mamalena, my neighbour who died, presented with many symptoms of what you describe and he was diagnosed with Lambert-Eaton Myasthenic Syndrome. I don't recall all the details, but I remember him having the weakness, laboured breathing, and in the end had trouble holding up his head. They went...
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    Do shizophrenia and ALS have same roots, so it can be treatead the same way?

    I worked as a nurse in emergency psychiatry most of my nursing career so Pimozide was in my bailiwick. The study sounds interesting. Lest anyone decide to dabble on their own and take their relative's stash of Pimozide, there are many many side effects to most of the anti-psychotic medications...
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    Melody's dad

    I am so sorry Melody. Saying prayers for your beloved Dad. Laurel
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    enduring well meaning friends, family, and strangers

    What a kind thing to say. Thank you Kim. I learned to reach out from my Christian good hearted neighbours. It didn't come naturally due to uncertainty about over stepping boundaries. Sending a big hug to you Kim.
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    enduring well meaning friends, family, and strangers

    I'm getting mixed up about what we friends of PALS should say on greeting/contact. I have always understood that many with terminal/life threatening conditions feel abandoned by friends and often family. I usually say "hi, how are things, is there something I can do for you? Like made a...