Old 10-05-2011, 04:34 PM #4231 (permalink)
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Default Re: Come For Tea

Susan, I think the trick is either A) take clarinet lessons for 4 years when you're a child; or B) Have 3 kids and a large house that you have to yell at them to be heard...

Other than that, luck of the draw as to where this disease hits you first... I can't walk for shit anymore, but I can still be heard... loudly I might add!

I think if you ever had Yoga training or any other breathing exercises, it may be easier as well.
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Old 10-05-2011, 04:35 PM #4232 (permalink)
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Are you talking about your breathing test Susan?
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Old 10-05-2011, 04:57 PM #4233 (permalink)
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Default Re: Come For Tea

Might add, Eddie was a long distance runner. Very healthy, no drinking, never smoked. Bulbar plays
no favorites. He was hit hard, lost his voice and one year till bi-pap, several months on that and then
the dreaded decision to vent. Christmas day if you can believe that.

Of course it is hard, but under those circumstances, he is doing pretty good. It is always day by day.

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Old 10-05-2011, 04:59 PM #4234 (permalink)
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My fvc went up to 135% due to walking and working when it became very hard work...I heaved for breath. Susan, it then dropped quickly to 99% soon after I began using a power chair. I'm not necessarily promoting this, as I may have hastened the other losses.
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Old 10-05-2011, 05:08 PM #4235 (permalink)
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Head's up--Don't ever take psyllium fiber in a small glass of liquid, without drinking lots more. Three hours ago that was my lunch. I began drinking water when pain hit an hour ago... so dumb.
Been there, done that -- got the "piles" to prove it. The ancient Egyptians should have given the Israelites psyllium instead of straw. Psyllium + insufficient water == bricks.

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Allen, I believe I do remember Sybil and the 6 in one, trying to wreak havoc. It helped keep me away from that part of the forums!
The aftermath of that drove me out of that forum and off the board for three months. Too many nattering nabobs complaining about confrontation and mistaking paternalistic and patronizing sympathy for "support". Lots of complaints about how other people did things. Actually getting in there and doing what they were preaching at other folks to do -- not so much.

Not to mention the twitcher who decided (with a little encouragement from old members who shall remain nameless) that he/she was going to stalk my posts and call in the Furies to berate me if I said anything they found objectionable. That person probably holds the board record for most posts deleted because of personal attacks and racked them all up in about a 60 day period.

Finally, there was the thread where a newbie demanded that I be expelled from the board. That's how I learned how the reputation system here on the board works. One longtime member went into painstaking detail about how the newbies could anonymously "ding" my reputation down whenever they wanted to. Also, how to use the "Report this post" icon to complain directly to the moderators with a convenient link to the offending post. Please note that this particular longtime member (and others in a certain clique of folks here) had hung my best friend on the board (at that time) out to dry when the Sybiline Sextet attacked that friend.

Not to mention all the other old members who weighed into that thread with solemn pronouncements about peace, harmony, brotherhood, etc., and how certain people (i.e., me) were disrupting the Force or something and keeping PALS and CALS from effectively dealing with this disease because of posts they never saw in a part of the board that they never read (and still don't). I could see myself as the next one whose stuffed head was being measured for a mount.

So I left before the moderators found it easier to appease the pitchfork wielders by booting me. Came back when it became clear that those folks liked the abstract idea of defending the "noble twitchers" much more than they did actually consorting with them. Besides, Aly and Joel and Sadiemae (and you too, Ann, as I recall) needed the help.

And, no, I'm not bitter in the least toward those members. Well, maybe a little.
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Old 10-05-2011, 05:31 PM #4236 (permalink)
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Default Re: Come For Tea

Thank goodness those folks aren't around anymore. Except for a couple of weirdos, It's pretty cozy here! I don't know what I'd do without all our friends here. I felt so alone before. *clink* of my tea cup to you all!
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Old 10-05-2011, 05:42 PM #4237 (permalink)
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So Allen I take it that you're Frankenstein? Or "Fraunkenstene" from the movie... I always loved the part when Igor (Marty Feldman?) stole the wrong brain and ended up with Abby Normal or something like that!

I think most of the stuff you're talking about happened way before I happened upon this forum, and I've very glad that you decided to come back... I find you to always be very informative, and I've learned alot from you and the others. And after lurking around for more than 9 months here, I joined about a year ago I guess. And I'm very grateful that this forum (and especially this crazy thread) exists... you all make me smile, make me think, and especially know that I'm not alone in all this.

And Marta, I don't think it was especially nice of you to call me a "weirdo"... maybe true, but not nice!
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Old 10-05-2011, 05:45 PM #4238 (permalink)
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I never lurk on the DIHA posts but found myself there today. Ugh, I usually can just walk away and chalk it up to people just being ignorant but today I couldn't help but tell this poster to seek out a different doctor than a neurologist. I told her to find a psychiatrist. I know it wasn't nice but nice hasn't worked in the past from what I have read. She is totally out of touch with reality. She needs Meds and rilutek isn't one of them. Oh dear, I am so mean.
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Old 10-05-2011, 05:45 PM #4239 (permalink)
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Jim, do you want to hear another irony with this disease? My daughter's voice teacher's husband had ALS for nine years... I found this out about 3 months before I got diagnosed. Not only that, he had a patent from his days at Digital Equipment (remember them?) for a voice activated software program that could type for people who were paralyzed. He was also a runner before ALS stopped him as well. I'm sure some of that technology was the precursor to some of today's programs.
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Old 10-05-2011, 05:45 PM #4240 (permalink)
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Thank goodness those folks aren't around anymore. Except for a couple of weirdos, It's pretty cozy here! I don't know what I'd do without all our friends here. I felt so alone before. *clink* of my tea cup to you all!
The Sybils and the stalker aren't here anymore. Neither are my former best friend and, of course, Joel (rest his soul). The nabobs -- very much still here and still nattering. And still dinging away at my reputation.

In the words of the immortal Tennessee Ernie Ford, bless their peapickin' li'l hearts.
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Old 10-05-2011, 05:48 PM #4241 (permalink)
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Linda, I thought I saw you over there! I go there sometimes when I need a chuckle...

Seriously, I lurked on those boards for many months AFTER my diagnosis, reading and learning... still thinking that of course I don't have this, the doc's are mistaken, and I have... Lyme disease... or anything else. Why would anyone keep going on that section to ask the same inane questions over and over again is beyond me, I avoided it like the plague!
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Old 10-05-2011, 05:50 PM #4242 (permalink)
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Al, when someone from Texas says "Bless Your Heart" do you know what they're really saying? I work with a few Texans and Oklahomans that say that and I let them know that I speak Bible Belt fluently!

I remember Ernie! 16 Tons and Wuddaya Get. Another Day Older and Deeper in Debt. I used to watch his show all the time! Thanks for the memories Toots!
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Old 10-05-2011, 05:52 PM #4243 (permalink)
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Linda, that's what I'm talking about and why I'm buying a round of Toasted Almonds made with ice cream!
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Old 10-05-2011, 05:54 PM #4244 (permalink)
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Dear Helen, you know I'm not talking about you and you probably know about whom I'm speaking to boot! xoxo!
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Old 10-05-2011, 06:00 PM #4245 (permalink)
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I know Helen! As I was on my two year journey to try to figure out what was wrong with me everything would come up with ALS. Well I would just skim over that because of course I didn't have ALS. I remember thinking oh thank you Jesus it isn't that! I was given a script for rilutek and laughed when I looked it up to see what it was. The Neurologist that prescribed it never mentioned ALS. I didn't fill the script because of course I didn't need it. One month later I am with the neurologist that did my EMG/NCS and he tells me it is ALS. I was shocked with disbelief. I asked him if he could be wrong? Why would anyone who was in their right mind go on this forum and argue that they have all the symptoms and the doctors don't care. Ugh. Get a life.
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