New to ALS

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SusanSt

Active member
Joined
Oct 27, 2014
Messages
34
Reason
PALS
Diagnosis
10/2014
Country
US
State
Texas
City
Livingston
Hi, I was just diagnosed with ALS on 10/08/2014 after two years of incorrect diagnosis of C.I.D.P. :?: I am still trying to process the whole thing right now. I was forced to retire 2 years ago from nursing, moved to the country and am learning to appreciate sunrises and sunsets! And absolutely never to pass up an opportunity to laugh!:) I am very glad I found this forum.
 
Welcome to our world......sounds like you have a good handle on keeping cheerful and enjoying what time you have left.
That is difficult for most of us, keep it up!
 
Greetings, SusanST! I"m sorry that you have to find yourself here, but glad that you found these forums. My wife, Darcey, was also misdiagnosed with CIDP. Her neuro was adamant that she did NOT have ALS because she didn't present properly. Not until we went to Johns Hopkins for a 2nd opinion, a year later, was she re-diagnosed with spinal onset ALS. That diagnosis was both a shock and a relief. The shock was related to the fact that the hope of getting better had pretty much been taken away. The relief was from finally knowing what we were dealing with so that we could get back to living (albeit differently) again. Now, rather than waiting to get better and perpetually feeling behind with everything we were trying to do... we now know what to expect and make each and every day a new adventure full of smiles, love, laughter and appreciation for another day. I hope you find yourself as welcomed here as we've been made to be...

Jim
 
Susan, sorry you are here, but you will find much support, information and understanding by the good folks here. Enjoy the laughter and your sunrises/sunsets! ALS can't take that away from you!
 
Thanks for the "welcomes", I am sure I will have many questions in the days ahead. I go to my first clinic on 11/14/2014. I have made one discovery already...if you drop the electric toothbrush, you will absolutely have toothpaste on the ceiling! :)
 
Hi,welcome and sorry!
Please let us know if we can answer any questions for you and we look forward to getting to know you!
 
Susan, thanks for the laugh! A suggestion- be sure to take someone with you to take notes! That first clinic is overwhelming and you won't remember everything so...... I have pages of notes from my hubby's first one- and could check things out against what he thought he heard! ( like all men, he heard what he wanted to hear, not what they actually said! Lol). Glad you are here to lend a positive spirit and laughter! We need it every day with this monster!
 
Yes, welcome Susan! And you will meet many fellow Texans on this Forum. I bemoan the fact there are few Californians but my recruitment efforts have yet to bear fruit. Alex
 
>Hi, I was just diagnosed with ALS on 10/08/2014

:)

welcome! will you come by the alsa walk in the woodlands on Saturday? If so look for the red dogs :)

Are you in Appel's clinic at houston methodist?

more in my blog as a have trouble typing :-(



Max - Monday, October 27, 2014 6:57:43 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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Thanks, that is a great suggestion. Notes are great for referring back to!
 
I will be in Baylor-Dr Harati's clinic.
 
Welcome, Susan. If you must have this disease, these are the people to hang out with! Here you get to rant, cry, talk, and laugh...we'll do this together.
 
Welcome, Susan - even if we are sorry you are here. We definitely appreciate laughter and will do our best to keep you smiling.
 
Hi Susan,
I'll be at UT Medical in San Antonio on 11/19. My first clinic also.
This time, I'm recording everything so I don't forget anything.
Best of luck,
Marty
 
So sorry to be welcoming you to the best support forum you can join Susan.

At least we can offer you true understanding of everything you will go through and share more laughter with you as well as some tears.
 
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