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howerstephanie

Active member
Joined
Sep 27, 2010
Messages
35
Reason
Loved one DX
Country
US
State
PA
City
Mechanicsburg
Well it's about time I finally say hello to everyone on here. I have been looking at this forum for quite some time and boy have you guys been a wonderful wealth of knowledge. Thank you for that! Here is a little background on why I'm here...my step dad Pete was officially diagnosed with ALS Oct. 2010. What a ride it's been! He can still walk and use his hands/arms. He can still eat by mouth. His speech is slurred a little bit when he's tired and his breathing isn't the best because he was also diagnosed with COPD last year, but other than that, I'd say he's doing great! He does use a bipap in the evening to sleep and sometimes through out the day as needed. Pete sees Dr. Rothstein at Johns Hopkins and likes him a lot which makes the doctors visits pleasant!Pete saw his pulmonologist last week and his FVC went from 44 (is it %)? up to 51 in three months. We thought that was great news. So all in all, we're (myself, my mom, and my sister) trying to hang in there. It's a very devastating disease to swallow. Thanks for listening and it's nice to "meet" you all! :)
 
Sorry you have to be here but Welcome! I am very sorry for you step dad's diagnosis. It sounds as if given the circumstances he is doing well and he has some very caring and loving people around him for support. I agree there is a wealth of information here, you will find numerous helpful people. Keeping you and your family in my prayers.
 
Hi and welcome to the forum. I'm sorry your stepdad, Pete, has this diagnosis, but he is so fortunate to have a good doctor and supportive family. I hope you continue to post, and keep us up to date.
Ann
 
Hello and I wish it was under better circumstances that brings you here. My mom was also diagnosed in Oct 2010, I was told that ALS seems to come in pockets of time, all of a sudden there seems to be a surge of diagnosis, anyone else ever hear this? I found this forum and the people on it God sent, always willing to listen and advise! Know you are not alone and we are all thinking of and praying for you and your family!
 
Welcome Stephanie, I hope that is your name. Sorry about your stepdad. Just know we are here for encouragement, and for advice. Feel free to ask and the forum family will try our best to help.
 
Wow! Thank you all for the warm welcome! And Joni, yes my name is Stephanie. How'd you guess...LOL!
 
Hello and I wish it was under better circumstances that brings you here. My mom was also diagnosed in Oct 2010, I was told that ALS seems to come in pockets of time, all of a sudden there seems to be a surge of diagnosis, anyone else ever hear this?

I've never heard that, but I was diagnosed 9/28/10 so add another to the surge. Stephanie, sorry you had to join us but you came to the right place. Welcome!
 
Well hmmm Stephanie...lol just kidding
 
Hi! Sorry about Pete! Hang on to all you can, while you can! Good luck to y'all!
 
Hi, Welcome to the forum.. Sounds like you are a good support, and someone good to have in the corner of a loved one. Just take everyday as it comes, and be prepared and armed. Dr. R is said to be one of the best, so sound's like he is in good hands. He is on the cutting edge of research, and is mentioned very often for his opinion and research. Hope we can be both support and friends on this journey.
 
Hi hopingforcure! I love your member name! Thanks for your reply. Yes, I have heard that about Dr. Rothstein which is awesome! He is a great doctor. Where in Pa do you live? I noticed you are living in South Central PA. I am originally from Portland, Maine, but am now living in the Harrisburg, PA area. Have a great day!

Stephanie

By the way...how did you get a picture on your page of your cat?
 
Never mind hopingforcure...I figured out how to get a picture of myself on here. Thanks anyway!
 
Dear Stephanie,
Welcome to the forum. You will get answers, support and prayers from this forum.
I hope your stepdad continues on a very, very slow course.
blessings, Pat
 
Hi Stephanie. Welcome but sorry about your step dad. Hope we can be of some help.

AL.
 
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