Old 07-14-2011, 06:54 PM #2491 (permalink)
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LOL! You guys are too funny. Who is Babinski anyway?
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Old 07-14-2011, 08:12 PM #2492 (permalink)
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The Babinski reflex test is when they scrape the bottom of your foot to see if your toes splay upward... if they do, then you could have UMN issues... funny thing is, my feet NEVER did this. Check it out on youtube for demos.
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Old 07-14-2011, 10:19 PM #2493 (permalink)
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I'll tell you Helen, neither of my Neuro's explained one blessed thing to me. If it wasn't for this site, I would know virtually nil. They never even mentioned Bulbar ALS. It really miffs me.
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Old 07-14-2011, 11:43 PM #2494 (permalink)
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Susan I so hear ya...I'm telling my current neuro what it's about it seems.....go figure!
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Old 07-15-2011, 07:20 AM #2495 (permalink)
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Susan they never told you about being bulbar? Going to be a rainy day here, just glad it is friday, maybe just maybe the blasted dogs will let me sleep a little late tomorrow. Think I will give them a sleeping pill..lolEveryone try to have a good day, Hugs to all!
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Old 07-15-2011, 08:03 AM #2496 (permalink)
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Nope, Not a thing. The ALS Neuro from USF said I believe it's ALS, I'm sorry, that's it. He didn't even mention Rilutek. I do like him, and I'm giving him benefit of the doubt because I was so upset.
Also, they can't tell me why half my face, palate and tongue are numb. That is not a symptom of ALS. Last week Bill called and asked why I wasn't offered Rilutek. They are very disorganized. If I go on now, I have to be on for 60 days, that means I'll probably lose my place in the Dexi trial.
If I didn't have this site for reference, I would be lost in the shuffle.
Anyhow, have a great day all!
Joni, Taylor, my maltese kept me up half the night trying to get comfy on my pillow.Plus, he had chicken last night that gives him gas. Lucky me.
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Old 07-15-2011, 09:45 AM #2497 (permalink)
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Hi Susan,
Might be a dumb question, but are you in contact with the ALS association in Florida? I traveled to Florida last year and contacted them to find a wheelchair van. They were very helpful
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Old 07-15-2011, 12:53 PM #2498 (permalink)
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Default Re: Come For Tea

I also found most of my information (good and bad info) online, this site was definitely better, as it is other people dealing with the same crap... MUCH more information than the "medical" sites. I also asked the neuro why they were doing this, why they were doing that, etc. so I could figure it all out... especially since they all seemed to want to scrape my foot and I didn't have a clue why! They also kept tapping my finger to see a response that wasn't there either.

I know part of it is the lack of time they have to do the exam, along with trying to educate the patient as well, but we should have time with a NP or someone along with the exam to explain it all.
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Old 07-15-2011, 03:01 PM #2499 (permalink)
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Tom,
They, ALSA, just called me today as I walked in the door from the Dex interview. She is coming on Aug 4th. I'm good now with everything except my speech, about 50% gone and my left index which is slightly contracted. It hasn't hit my upper arms or legs yet, just the finger.
It shows that we need to advocate and educate for ourselves when we see the Doctors.
I went armed today. The nurse even commented that I did my homework. (thanks to this site)
I'm going to have a nice cup of Chai tea and relax, It was a long time at the clinic.
Hugs to you all,
Susan
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Old 07-15-2011, 03:07 PM #2500 (permalink)
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Good Morning all, hope everyone is doing well today. Beautiful day here today.
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Old 07-15-2011, 03:13 PM #2501 (permalink)
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Hi Diane,
It's nice living in a paradise I just rented a movie from Netflix, Princess Kaulani I don't know if I spelled her name right. It was so interesting.
Have a wonderful day!
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Old 07-15-2011, 03:23 PM #2502 (permalink)
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I just saw that myself...so sad.....You have a great day also Susan....
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Old 07-15-2011, 03:26 PM #2503 (permalink)
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Yes, it was sad. The native Hawaiians were so persecuted by the British. The poor princess died so young too.
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Old 07-15-2011, 04:00 PM #2504 (permalink)
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I'll be having an abbreviated high tea this evening - finger foods and such instead of a nice wholesome meal. I'll be attending a handbag party for ladies that one of my daughters is hosting. My sil, 2 grandsons and future sil will be there also. We plan on hiding out in another room. Too bad there's not a manly den in the house where we could smoke big, fat stogies and sip brandy.
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Old 07-15-2011, 04:18 PM #2505 (permalink)
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Susan that is so funny. Bama my maltese usually sleeps by my tummy, sassy my dashund has to have the side of the bed next to the fan. Me I get whatever room is left over...lol And mine sometimes have gas too! Oh my gosh it is awful!Hey Diane, HelenTom
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