Old 06-30-2009, 12:28 AM #31 (permalink)
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Reminds me of the days when our boys were little, we went somewhere and thought we had taken everything but the kitchen sink!
...

now it's my turn!


Brenda, I really know what you mean! I think that ALS is our bodies un-learning how to do stuff, life in reverse I mean Benjamin Button's got nothing on me, I'm looking for one of those plastic bibs that has the trough at the bottom. I haven't found one that fits yet. AND I'm going to get my 6'2" son to carry all of my stuff around for me!

Have fun at the game!

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Old 06-30-2009, 04:29 AM #32 (permalink)
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I have sent a copy of the letter to the Winnipeg Goldeyes with the suggestion that they do the same thing. Here's hoping!
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Old 06-30-2009, 07:16 AM #33 (permalink)
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I am very happy to say that I am going to be at Yankee Stadium on the 4th. Going with my brother ,sister-in-law and sister. I feel very blessed to be able to be there for this celebration.
Lets hope ALS gets lots of donation from this effort.
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Old 07-02-2009, 02:40 PM #34 (permalink)
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I'll be at the Angels game on the 4th!
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Old 07-03-2009, 08:12 AM #35 (permalink)
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Hoping-

Well, it looks like we should have a great day to "take me out to the ballgame..."!
Weather forecast looks good- not the usual heat & humidity we experience on the 4th;
now, if the Phillies can just pick-up their game and break the losing streak they are on!?!

I hope you & your family/friends have a great day; maybe we'll see each other- look for me- I'll be the one in the red, Phillies T-shirt! LOL

Have a great 4th everyone!
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Old 07-03-2009, 04:13 PM #36 (permalink)
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You got it Mare, you will be easy to spot... Do you think the Phillies can pull one out for ALS on Saturday. We are really excited..
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Old 07-07-2009, 11:13 AM #37 (permalink)
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Hello everyone. It's been a while since I was on site. When I get depressed I lay off the computer. Anyways, Johnny was invited by the MDA to participate in the July 4th, 4ALS Awareness event held at AT&T Park, which is Giants (I thought it was still Candlestick Park lol).

It was a thrilling event and very inspiring. We met so many wonderful people afflicted with ALS, caregivers and representatives from various ALS support groups.

Here is a link to the video on my youtube site:
.

The young man Corey, next to Johnny on the field has an interesting story about his cane. Corey also flew down to participate in the event at the Angels staduim.

There were also two fairly well known ALS patients in the group. Jason Becker was apparently an up and coming rock n roller when he acquired ALS 20 years ago. He used eye movements intrepreted by his caregiver to communicate with Johnny. I've never seen that before and it was fascinating. He's continues writing music with eye recognition software and still puts out CDs. Carla was a well known comedian and singer when ALS came into her life. She had a film crew viding her and the events for a documentary on the impact of ALS on her's and her family's life.

Hope I can post that link here and that you enjoy it.

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Old 07-07-2009, 06:53 PM #38 (permalink)
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The ALS patient Matt who gave the short speech in my youtube vid was a real kick. He has invented many innovative work arounds as his ALS has progressed, including special golf shoes. One is his 'wedge' shoe and one is his 'club' shoe. He loves it when people playing with clubs are amazed to see him kicking the ball with his special golf shoes. He was extremely inspiring.
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Old 07-07-2009, 09:37 PM #39 (permalink)
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Thank you so much Valya, Johnny look's great, he is such a handsome young man. I was at the Phillie's game.. Amazing day for ALS.. We need more of this.. Thank you for sharing this loving tribute.
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Old 07-09-2009, 04:51 PM #40 (permalink)
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Thanks Hoping. It was an exciting, thrilling, bittersweet day. So hard to see my son out on the field with ALS patients, yet I was so proud he agreed to participate with an ALS awareness event. He keeps saying he wants to remain anonomous (SP) and 'just die in a corner someday'. This was like a first step out for him.

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Old 07-09-2009, 06:42 PM #41 (permalink)
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Valya,
I understand how Johnny feel's (totally), he did a great service for of us, he is a bright light and maybe if one person see's this fine young man stuck with this monster and they choose to react, we never know what could happen. I think at his age his reaction is completely normal, bless his heart for giving ALS a young and real face, if people do not react to Johnny, well I guess my hope for Humanity is shot..
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