Old 04-16-2011, 03:52 PM #1066 (permalink)
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I can understand that tiredness. I hope you find a way forward. Sending a hug
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Old 04-16-2011, 04:03 PM #1067 (permalink)
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Kim, while I know it isn't sound advice, I understand why you don't want to pursue more useless testing. One thing I know about ALS is, the diagnosis cannot be made until the necessary test results are there, no matter how probable the ALS diagnosis is... and we all read about PLS, and the nightmare getting to that d.i.a.g.n.o.s.i.s. often is. So, if you can handle waiting longer, and feel it's best, you have my empathy. I also had a time of waiting between my first and second visits to the EMG dept...a longer than necessary time due to my being fed up with no clue and no information...which may, upon reflection, have been just as well. I was totally blindsided with ALS.

Hospice has not begun. I'm having a serene day after yesterday hearing that due to a total lack of communication at our three-physician Neuro office (one neuro, but no office workers have a clue about the clinic), and poor enunciation which told the hospice worker I wasn't ordered hospice by a combination name--using one real name hooked into the first syllable of a second doctor, neither of which is the Clinic doctor--it's on hold until Monday at least, when the ALSA worker who thought she'd arranged this, will be asked again. If you can follow this and it makes any sense, I'm impressed. If I hadn't been so dumbfounded, I'd have had the coordinating nurse at the clinic brought into the mix--she'd get it straightened out. Unfortunately, that idea came to me this morning...and our hospice isn't up for this kind of business on Saturday.
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Old 04-16-2011, 05:15 PM #1068 (permalink)
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Thank you so much fotr the warmest thoguhts and converns. Maybe thids time away, visitingf family will be what Ineed! Although I do nort want to answer questions aat this time. I kbbow thry will meanb well, it's jsut my faMIULY. My gfrandmother comes home fronm rehab a lort soonmer than anticiapted. She's one tought cookie! She shouldd be home right beffore Easter. I know thhis hastaken a toll on my fanily with her ahving dementia, someomne has had to stray with her 24/7. I always said if I could walkk avross tje floor and wipe my own butt at 85, thenn 75 , anbd now 65 I woulld be ha[py! She may not remembver what she ate 5 minb before but she remembeers me andf that is priceliss!
If I don't geet a chancve to get on the computrer durring the next week, I wish you all a Happuy Eastre and renwerd strength for the Season. (Oops I did forgrt some of us are goifn g intro the fall/wintrer season.)
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Old 04-16-2011, 05:17 PM #1069 (permalink)
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OMG, Do we hacve spell checxk in this?
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Old 04-16-2011, 06:53 PM #1070 (permalink)
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Default Re: Come For Tea

Only letting us know words are "off". Kim, your post is more interesting the way it is...[I'm laughing!] since it's not just a message but a built in puzzle. It's not hard to figure out...I figure you're reaching across or up to type. I'll be doing that myself one day, and you can get me back.
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Old 04-16-2011, 07:53 PM #1071 (permalink)
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Avril- I was telling my Mom about you and about how we named my Pukeko, Pookie.
She asked where you were from and when I told her Ireland, she said "ask her if she knows Bap Kennedy"

So do you know Bap Kennedy? He's a musician from there aparently...
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Old 04-16-2011, 10:17 PM #1072 (permalink)
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Ann, noow you knnow why I was letting Grayyson trype for me
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Old 04-16-2011, 10:18 PM #1073 (permalink)
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Liz,
II havbe missed you. Wherre have you beren hidding?
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Old 04-17-2011, 05:35 AM #1074 (permalink)
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Hi Liz, just seeing your post now as I'm munching on my porridge & tea. How's Pookie doing? Creating any mischief yet? At the risk of disappointing your mom, I have to admit to not knowing Bap Kennedy or his music. As one of my colleagues says: every day's a school day. So I looked Bap up & see he's from Belfast and has a younger brother Brian who is also a musician. Brian represented Ireland in one of the eurovision song contests. Ask her if she's heard of Brian Kennedy.

That's it, gotta scoot, time to get mum washed etc, see you later
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Old 04-17-2011, 08:48 AM #1075 (permalink)
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I will ask her, Avril. If she hasnt heard of him, Im sure she will be excited to hear of him now. she loves that sort of thing.
Hi Kim! Havent really been hiding, per se- just been keeping busy the last few days.
The girl who is supposed to cover for me at my PALS when I have a day "off" just up and quit. She didnt tell anyone though. she just didnt show up and wouldnt respond to our phone calls.
5 days later i get some text messages from her saying how sorry she is that its just too hard. i understand all of that- but my gosh, be an adult about it! Give us some notice!

Todays quote: "A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words."

have a good day ladies.
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Old 04-17-2011, 11:47 AM #1076 (permalink)
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Kim, I wish everyone in this country had decent health insurance, it's a travesty that we all don't. Having said that, I have my insurance through the state, and though it's paid for ALL my testing and doctor's and is very affordable, it's not paying for Rilutek, which someone else who has the same insurance said was wrong. I don't even know if I really feel like taking it, as I want to get in on the new ALS trial anyway.

I'm not sure what your insurance problem is, are they not paying for neuro visits? Or to get an EMG? I think you should start calling your Senator, and see what they'll do to help fix this problem! I'm totally serious, if you haven't done so yet, get online, find out the phone number and call the local and Washington offices. Keep calling until something happens... that's part of their job, to HELP people. TELL them that you have this disease, and can't get help! Tell them that you're going to start calling the TV stations if you don't get results (if they're not helpful)

Good luck, I'm praying for you!

Helen
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Old 04-17-2011, 03:50 PM #1077 (permalink)
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Oh, Liz. Thanks for the quote of the day, I needed that. I have one true friend who sings to me regularly these days
I was feeling sorry for myself and the estrangement from all the people who we used to connect with, but now I will finish my chores with a smile. Plus, my daughter saw that I was down and offered to make me some tea. That was the best damn cup of tea I have had in quite a while, too strong, just right for holding me up.
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Old 04-18-2011, 07:46 AM #1078 (permalink)
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Glad to have helped. Hope today is a better day for you, Toms support. Here is another one:

"Friends are kisses blown to us by Angels."

Have a good day everyone. And HEY! Where in the heck is everyone? Geez- getting perty lonely here....
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Old 04-18-2011, 10:42 AM #1079 (permalink)
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Hi Liz! I was outside on the deck yesterday afternoon! YeeeHaaa! The sky was perfectly blue, and without having leaves my overbearing oak tree didn't keep the sun from reaching me. For this area, where summers are very hot and humid, being outside in the spring is the absolute best.

My ALSA Coordinator emailed Saturday night saying she will call the Neuro office today and get Hospice back on track. Teri, the coordinator, is doing this on her vacation. I love her so much. She is more than dependable.

I hope everyone is having a very fine day....may WI and SD have warm breezes and sunny skies and off with winter's head.
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Old 04-18-2011, 01:27 PM #1080 (permalink)
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Ann, I don't know about WI but winter is still teasing us in the Black Hills of SD. Rained yuesterday - snow today.

I am glad to hear you got outside yesterday and hopefully with hospice's assistance you will be able to do it more often. I can hardly wait to spend time outside on our deck.

I tried to post last night on several threads and it kept popping up that I was not authorized -- did I offend someone? I have noticed this forum is slower than t use to be for navigating and am wondering if anyone else has problems or if it is a reason for me to call the computer geeks.?.
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