Team LISA 23

 

 

August 9

    Updated the site a little.  Added some pictures...obviously.  The rest are at the bottom of the page.

    Thanks to everyone for the prayers, donations, and wonderful support Lisa is receiving.  It has, and I'm sure, will continue to provide her with comfort and strength.  I'm also adding a few links.

    As many of you know, it has been difficult at times to reach Lisa on her phone.  Trust me.....I know.  However, with her new, much less hectic schedule, this is already improving.  Please continue with the Facebook posts and always feel free to text her.  I think she likes texting.  Also, feel free to contact us with any helpful suggestions or ideas of any kind at any time.

Lastly, I just have to get this off my chest.  The topic of the donations and the decision to solicit them is a difficult one for me.  I realize though that it is a common occurrence for many patients and families dealing with a chronic disease, and I probably just need to swallow the pride and get over it.  My idea and hope was that people could donate just a little each month.  I don't want to be or create a financial burden for anyone.  I know that these donations will help us now, and more importantly perhaps, give us some sort of buffer to assist us in the future with the significant anticipated expenses this terrible disease can create for it's victims.  It's such a crazy disease!
  1. No one knows what causes it.
  2. There are no treatments.  I should rephrase this as "no treatments in traditional medicine".  Clinics and researchers are doing clinical trials, but currently, there are no treatments, medicines, drug therapies, etc.  I don't count "Rilutek".  It's FDA approved, is believed to extend life for about 3-4 months, but is extremely expensive and can have significant side effects. 
  3. They are just now beginning to maybe understand it's evil process.
  4. People stricken by it frequently live for many years, while requiring expensive home healthcare (labor and equipment), most not covered by any insurance . 

Anyway, we just want to say that all are sincerely appreciated.  We are so grateful for you all.  We're trying to keep things as normal as possible around here, and so far, so good.  Our families are so wonderful, and she has SO MANY good, dear friends.  Some I've known for years, and many, it seems, I haven't even met....YET.  I want to eventually meet you all.  

I envisioned a small army coming together.  I already see it forming.  Thank you so much.

Alan

WHO DAT!!!

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August 7

    Lisa started noticing problems with her right hand in January 2011 (thankfully, she's left handed).  We/I wrote it off as job related, due to her job as a computer tech.  She went to her general practitioner, who barely raised his eyes from the file folder, and said, "you just have tendonitis".  However, this progressed slowly and by May 2011, her right hand was very atrophied.  She went to more doctors.  She was finally given a partial diagnosis at Emory in September, 2011.  She had as many tests done as possible by 3 different neurologists.  One was a special week trip to Washington DC for testing at the NIH.  Many, many thanks to Kathrin Czarnecki, Odell's girlfriend.  A brilliant neurologist at the NIH who made the trip possible, my brother Odell, and our good friend Steve Thompson for the accommodation assistance.  Also, thanks to Sandra, Grannie Raine and Kelly for helping with the girls.  Grannie and Sandra came up from Slidell and they all took great care of Emmy and Chloe.

    As there is no test for ALS, only tests for other things that get ruled out, Lisa experienced many tests, the worst being a spinal tap in December, that didn't seal correctly.  This resulted in a spinal fluid leak.  After a week of misery, she had to go back for another needle in the lower spine for a "blood patch".  Anyway, all that is over now.

    As of now, Lisa's left, good hand has also weakened.  On a positive note, her progression does seem to be fairly slow.  Our goal is to keep her as stress free as possible (difficult for someone living with my micro managing type-A personality, but I'm working on it), and give her time to concentrate on her well being, nutrition, etc....and hopefully keep the progression slow.

    My job for the last few years had been a lot of 60 hour weeks, mostly nights and weekends and some out of town work.  Lisa was by herself with the girls A LOT!!  I know it put a lot of stress on her.  In January, I told my bosses that I couldn't do it anymore.  They've been great.  Since February, I've worked a "regular" schedule. I hope it's helping her.

    After seeing so many news stories about Steve Gleason's fight against ALS, his website, and other fundraising activities, I figured it was time for me to start.

    For us, on the financial side, we are at the beginning of this battle and have a lot to learn.  As of now, we are not sure if she will receive any Social Security or Medicare.  She has started the process of disability claims this week through her employer, Fulton County Schools.  Right now, she qualifies for early retirement based on 12 years of service.  She should also be eligible for long term disability insurance coverage.

I know we haven't told everyone about this.  Just one of those things, didn't keep it from anyone for any reason other than you don't want people to worry.

This is only the beginning, and I have to say that the main thing I will ask ya'll for is prayers.

We are so thankful for all our wonderful friends, family and the prayers ya'll are sending.

Thanks,

Alan

teamlisa23@gmail.com

PS--WHO DAT!!