Old 07-06-2016, 09:26 AM #1 (permalink)
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Default CALS....Need some stories

Hi Everyone,

After a couple of months away from it, I've started again on my ALS document. My previous threads have been closed so I had to start another thread.

I have a few more PALS stories to edit but I only have a couple of CALS stories and I would like a few more.

This document will reach the offices of many physicians and other health care providers. It will be widely distributes as a vehicle to present ALS from the perspective of those you live it daily.

Please take a few minutes to read what I have so far (thank you Tillie for helping me do some of the preliminary editing) and, if you would like to share your story (all names have been changed) send me a personal message and we can communicate via e-mail.

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File Type: pdf ALS Revised July.pdf (418.7 KB, 122 views)
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Old 07-06-2016, 01:03 PM #2 (permalink)
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Default Re: CALS....Need some stories

You nailed it KIM....well done!
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Old 07-06-2016, 01:23 PM #3 (permalink)
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Default Re: CALS....Need some stories

Kim I think you are doing an excellent job. I need to think about what I would write, people tell me I could write a book, you're doing that, I need to condense. Not positive I will participate, but I will need to time to think. Thank you for doing this, it will be huge for others.

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Old 07-06-2016, 01:54 PM #4 (permalink)
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Default Re: CALS....Need some stories

I already have several doctors who will hand it out to their staff, some in other States. I have quite a few relatives who are in the medical profession (doctors, nurses, PTs, and a couple in med school.) Hopefully, some of them will get involved. I know the PALS and CALS at our Chapter meeting are excited about it getting into the right hands. My niece, who owns Buffalo Rehab, is flying down on the 18th. I'm hoping she will take it back with her and help in circulating it. That's why I'm pushing to have it done by July 18th. Of course, we can always add to it. I have three more PALS and two CALS ready for editing and I will work on it between now and Monday.

Thank you to anyone who would like to contribute.

I'd REALLY like to get a FALS story. There is a possibility of one guy in our group who is FALS. It would be strictly interview of his brother and him as he does not write.
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Old 07-06-2016, 03:35 PM #5 (permalink)
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Default Re: CALS....Need some stories

Nice piece,

Technical point: In the fourth paragraph, it says Bulbar ALS attacks the muscles that control... This gives the impression that ALS is a disease of the muscles.
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Old 07-06-2016, 03:57 PM #6 (permalink)
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Default Re: CALS....Need some stories

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Nice piece,

Technical point: In the fourth paragraph, it says Bulbar ALS attacks the muscles that control... This gives the impression that ALS is a disease of the muscles.
It is a Neuromuscular disease, so in that context I think it was fine.....ALS is all about muscle loss.

I think it is well written for people who want more than just a basic understanding of this disease process.
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Old 07-06-2016, 06:31 PM #7 (permalink)
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Default Re: CALS....Need some stories

Have you an interest in new CALs stories? I like to write do would gladly participate with our diagnosis experience but I may not have been at this long enough to be too interesting.
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Old 07-06-2016, 09:16 PM #8 (permalink)
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Default Re: CALS....Need some stories

Kim I'm feeling like I will leave mine until we get everything in, then as I work through the document with you I can throw in a bunch of stuff I feel hasn't been covered - is that ok?

Also if I think of some things I know others could put in, I can contact them. eg I know that Jim would have some wonderful things but he isn't here much now, so I can talk to him on fb.

In the meantime, CALS throw in anything and everything you think is worthwhile. Kim will go through it and then send it on to me for some final proofing and formatting work.

This is going to be a wonderful team effort and result in a document we can all use to hand out in so many ways.
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Old 07-06-2016, 10:01 PM #9 (permalink)
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Nice piece,

Technical point: In the fourth paragraph, it says Bulbar ALS attacks the muscles that control... This gives the impression that ALS is a disease of the muscles.
Thanks, Mike.
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Old 07-06-2016, 10:02 PM #10 (permalink)
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Have you an interest in new CALs stories? I like to write do would gladly participate with our diagnosis experience but I may not have been at this long enough to be too interesting.
Yes, I'd like to get stories from all stages.
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Old 07-06-2016, 10:06 PM #11 (permalink)
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Default Re: CALS....Need some stories

Tillie, That sounds like a plan. I just finished a telephone interview with a CALS and incorporated it into the document.
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Old 07-08-2016, 06:18 PM #12 (permalink)
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Great, let me know how I can help.
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Old 07-09-2016, 02:10 AM #13 (permalink)
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Default Re: CALS....Need some stories

Hey Lenore - have a look at the document Kim linked in the first post in this thread.

Then think about what YOU would want to say to health professionals - about this disease, about how to treat people who are being diagnosed, how they can best help - things like that.

Something that is really relevant to you after the diagnostic process you have just been through - something that stands out for you

Either pm it to Kim, or pm her for her email address and email it to her.
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