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EGBAR

Distinguished member
Joined
Jun 8, 2011
Messages
173
Reason
PALS
Diagnosis
06/2011
Country
US
State
FL
City
Niceville
Hello everyone! Although I have been watching and reading your comments for a few months I didn’t actually join until yesterday. I wasn’t able to post anything yesterday due to my high anxiety of being diagnosed on June 7th the day before. As with many people I have been doing research and driving myself crazy trying to figure out what was going on. I think I realized I did have ALS when I discovered that I was born on Lou Gehrig’s birthday June 19th. That was 2 months ago I discovered that.

I had the most surreal day of my life yesterday. I woke up at 3 in a panic attack, my mind was racing. I haven’t told my aging parents who live miles and states away or our daughter who is in college in AZ. I run my wives physicians office so I went to work, the Electronic Medical Records system we use was down most of the day, which made it difficult for us to catch up from just returning from 2 days at the Mayo clinic in Jacksonville. I tried to stay busy; not very successful I was very anxious.

I headed home feeling very depressed, thinking about dying and how absolutely horrible this disease is and how I don’t want to put my wife through this, approaching a pretty low point and there was a very serious motor vehicle accident in the northbound lane, traffic stopped in both directions I was in the southbound lane. The life flight landed in the northbound lane across from my truck. Everyone was out of their vehicles watching this terrible scene. And it hit me, this person that was being taken unto the life flight probably woke up this morning thinking he or she was going to live another 30, 40, 50 or more years who knows. It got things into perspective very quick.

I then went to pick up the new medication I was prescribed at the Mayo clinic at CVS. I was told that the medication needs to have a pre-authorization from the insurance and should be about 2 days. I asked how much to pay for it and 30 tablets were $533.00. As I walked away from the Pharmacy empty handed I decided to buy a York Peppermint patty, I like them. As I was pulling out change the clerk asked me in a matter-of-fact way do you want to give a dollar to help support ALS research. I couldn’t believe it. I reached in my pocket and pulled out a $20 and said “yes I want to donate $20.00; believe it or not I was just diagnosed yesterday with ALS”. As she rang them up I looked and then noticed all the little gray paper squares where people have donated before me.

I don’t know where this horrible disease is going to take me, but I will not let it define me. I am very sorry that anyone ever has to join this community but I am here and I will do all I can to help anyone with what they need.

Thank you all for your unknowing support so far over the last few months.
 
Welcome EGBAR. That was a very nice introduction.
 
Hi Egbar. Your post was humbling and shows us your found strength in the midst of the rising storm. It is comforting to know you aren't alone.

**Ask your ALS clinic about the drug program that will help pay for the Rilutek.

Sending big hugs to you!
 
Welcome, EBGAR! You will find you are in excellent company on this forum.

Nice introduction, by the way!
 
Welcome. Like everyone else, I am so sorry you have to be here.

Living in Niceville, are you perhaps retired military? We know several families down in the area. My family has been going to Destin since I was 3 (back when it was just a small fishing village). This will be the first summer that we won't make it. Hopefully, I will be able to rent the eqiupment I need and get my husband back down there one more time in the fall. There is nothing like the Emerald Coast!
 
Welcome to the forum EGBAR! I'm sorry you're here too. It's good to meet you though! There are many loving caring knowledgable people here on this board that can answer any questions you might have, or just to say hi to from time to time. I hope you are doing well.
See you later!
 
EGBAR glad you found this site ,but I wish you didn't need it.We are all here to help each other with tips and tricks and expierences we have learned
Have you contacted the ALS association in your area yet? RIDGE is on here from Sea Grove Beach maybe he can steer you on who to contact.
 
Thank you all for your nice reception, EGBAR is an accronym for Everything is going to Be alright, I stole that from someone.
 
Welcome Egbar! Great first post!
Since I missed you yesterday, I got to see the explanation for your name and I love it. Just keep thinking of the acronym and it will help you through, just as all these amazing forum folks will help too. This is a wonderful group of people who really want to help. I can attest to that because they have already helped me immensely since April 2011 when I joined. I was diagnosed in Feb. 2011.
By the way, my name on here was born out of a staff meeting at work! I saw it on paper and it seemed to say exactly how I want to stay, hence "Be Happy"!
Again, Welcome!
 
Hello, EGBAR...So sorry you have need to join us, but your story and insight is wonderful. It really will "be alright", too. A day at a time is helpful, and I expect you already know that! I'm wishing you well as you get through the first waves--this is a wonderful, caring support site.
Ann
 
Welcome to the forum! I know that a positive attitude helps and the great help you find here is invaluable
 
Welcome Egbar, sorry you had to find your way here, but was a wonderful introduction. This is a wonderful site filled with loving and caring people, ready to help at all times.
 
Welcome Egbar, I am sorry you have to join but its a great support community. You might also want to say 'hello' under the PALS section (People with ALS) as you will find more of a strong community there instead of under the general tab. Welcome again, and know we are here to help you in whatever way possible.
 
Welcome. I love the name, great choice. Thanks for your thoughtful self introduction. This forum has been a wonderful place of support for me. I hope it will be for you too.
 
Hi EGBAR, I see you already have so many new friends....bet you're glad you introduced yourself! :)

Just wanted to share with you that my ring tone on my cell phone is Bob Marley's song titled "3 Little Birds" because my favorite verse in it is: "Don't worry about a thing, cuz every little thing is gonna be allright!" :)
 
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