Old 10-22-2013, 12:17 AM #1 (permalink)
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Default sucking through straw/ smoking

Recently, my mother has been having trouble sipping through a straw or drawing smoke out of the end of a cigarette. Her doctors told her she can smoke if she wants to which consists of me holding it to her mouth. Has anyone had these problems before? I didn't expect changes this soon.
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Old 10-22-2013, 08:58 AM #2 (permalink)
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Default Re: sucking through straw/ smoking

Sipping through a straw is a pretty complicated manuever. Your tongue and lips have to hold this position, your cheeks suck in just so much, your soft palate and throat set up - a lot is happening there, and it has to be coordinated, too! It is like an early yoga posture, effortless for anyone who's practiced a bit and in good shape, but for a first timer or someone with less than full ability in all those little postural and instrinsic muscles, difficult and tiring.

Sipping through a straw is considered a bad idea with bulbar/pseudobulbar symptoms, anyway, because it increases the chance of aspirating the drink in a decent quantity.

That said, in terms of holding the cigarette in her mouth, it seems to me like a similar challenge to holding and using toothbrushes in quads. Normally they use foam to build up the handle to be big enough to require little coordination. I've never seen anything like this, but I'm imagining a larger, softer thing with a cylindrical hole through it for the cigarette, made of non-flammable material. It wouldn't be worth spending a lot of money on, because it will only last so long - she'd need some jaw strength to use it, but if you could figure out how to make it cheaply, it might work for the meantime.
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Old 10-22-2013, 09:26 AM #3 (permalink)
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Default Re: sucking through straw/ smoking

perhaps something similar to a pipe stem but a larger diameter
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Old 10-22-2013, 01:26 PM #4 (permalink)
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Default Re: sucking through straw/ smoking

We keep getting slimmer and slimmer straws - it seems to be easier for my PAL to suck the smaller the straw, as or cigarettes - he chose to quit smoking early on, thank goodness.
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Old 10-24-2013, 03:53 AM #5 (permalink)
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Default Re: sucking through straw/ smoking

This would be a great time to quit, as her lungs will deteriorate even w/o smoking and you'll have more than enough to do besides cigarette duty. Maybe see if she can tolerate an herbal version for some of her smoke breaks to start...I'm not trying to make light of a very tough habit to break, but things do get a lot worse.
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Old 11-06-2013, 12:04 AM #6 (permalink)
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Default Re: sucking through straw/ smoking

As I just logged on to see if I could find suggestions for my dad to be able to work a mouse on his computer, I am stunned to see what someone is requesting help to smoke. I guess everybody has a vice -- even if they require a support forum for tips. Sigh.
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Old 11-06-2013, 04:23 AM #7 (permalink)
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Default Re: sucking through straw/ smoking

no point judging someone on their vices

my PALS is of the opinion that giving up smoking after diagnosis was just another thing he was losing to the disease (bulbar onset), yeah it's not going to help his lungs, but he has lost so much in such a short time, well if he wants to smoke it's his decision

he uses a cigarette holder - he was getting terrible burns on his fingers as his hands don't work well at all. The holder (which he bought online for a few dollars) has a ridge at the end and since his jaw is good at clenching, he can actually hold it between his teeth and not have to use his hands so much, then lean over and ash it with it still in his mouth
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Old 11-06-2013, 06:38 AM #8 (permalink)
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Default Re: sucking through straw/ smoking

my view, this and similar diseases takes so many thing that we get pleasure from away from us that the few things we are still able to do and get pleasure from- well-go for it. who has the right to judge. at least he/she is getting some enjoyment
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Old 11-07-2013, 06:05 PM #9 (permalink)
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Default Re: sucking through straw/ smoking

I used to get upset that my mother smoked after her cancer diagnosis. She even tried to hide it from us. But, my dad and all of us came to accept the fact that it helped her relax and deal with all her stress. Smoking isn't going to help her health we all know. But, don't take away something she enjoys. You are a wonderful and loving daughter so don't let people judge you or your mother as to rather she smokes or not. Get her some cuban cigars so she can really live it up. lol Take care, Kim
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Old 11-18-2013, 12:33 AM #10 (permalink)
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Default Re: sucking through straw/ smoking

Nvogue. Anything that my mother wants to do to enjoy the life she has left I will do for her. She also loved playing on the computer, using a mouse. We now use an eye gaze and that enables her to select with her eyes. You and I know how terrible this disease is. I am not asking you to judge. She wishes to smoke, after 25 years of smoking, who am I to tell her to quit, especially with her knowing she will not be able to soon. Hell even the doctors told her to do whatever she wants. Including smoking.
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Old 11-18-2013, 12:40 AM #11 (permalink)
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Default Re: sucking through straw/ smoking

If you took the time to read my post maybe you could see that I was seeking more advice from people who experienced similar issues with deterioration of the muscles used that do the things like suck through a straw. Smoking is similar to this
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Old 11-21-2013, 02:01 PM #12 (permalink)
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Default Re: sucking through straw/ smoking

My wife has long since lost the ability to use a straw and nothing she tried helped.
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Old 11-25-2013, 06:58 AM #13 (permalink)
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Default Re: sucking through straw/ smoking

I apologize to you and everyone else for my response. I've chose to not delete it so anyone coming after this will realize the idiot remark I made.

My father lost much of his eye function due to having shingles just before being misdiagnosed with myasthenia gravis, so the eye gaze software would not be any value to his quality of life.

Again, I do apologize, and I understand (despite my previous comment and tone) wanting to make their life as comfortable as possible.

I hope you're able to remain strong as long as she is able to stay with you. Please accept my most sincere apology.
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Old 11-25-2013, 06:59 AM #14 (permalink)
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Default Re: sucking through straw/ smoking

I apologize to you and everyone else for my response. I've chose to not delete it so anyone coming after this will realize the idiot remark I made.

My father lost much of his eye function due to having shingles just before being misdiagnosed with myasthenia gravis, so the eye gaze software would not be any value to his quality of life.

Again, I do apologize, and I understand (despite my previous comment and tone) wanting to make their life as comfortable as possible.

I hope you're able to remain strong as long as she is able to stay with you. Please accept my most sincere apology.
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Old 11-27-2013, 04:43 AM #15 (permalink)
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Default Re: sucking through straw/ smoking

thanks for apologising

So sorry for how things went for your father, that makes things extra tough having that eye problem first. That must have been so terribly painful, shingles are awful.

Make sure now that you do join in maybe down in the CALS section start your own thread and do an introduction post so we can get to know you.

It's tough for all of us and this is a great place for support!
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