Its Official I belong here

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jdever9

Member
Joined
Mar 25, 2012
Messages
24
Reason
PALS
Diagnosis
12/2011
Country
US
State
IL
City
Springfield
Just back from Chicago and my second opinion "I cant say it is and I cant say it isnt, but because I know of no other condition with these symptoms, It is ALS and see you in Aug if you wish to drive up to Chicago again"

Well, I am not in the dark anymore. Listening to the steps others have made and are yet to make, today I filed for disability, gave my husband my car keys (that really hurt), signed up for senior services, home help and shuttle service. Wow all in one day, if you guys hadn't of suggested all the options available in various threads and meriterous service annoucements (TR) I would probably be sitting here crying and wishing for some beer. Instead I feel like Iactually accomplished something valuable. I am better - the only thing I really regret, is calling a church and having them come over and pick up 19 boxes of books - I am and have always been a reader - and they were keepers! I still have 8 boxes to re sort. between them and a kindle I will survive. So maybe one day soon I will join the tea party. Have great day I intend to.

janelle
 
So very sorry Janelle, but Welcome to our family officially, one big loving and supportive group of people. Your attitude sounds good, I am happy for you for that. Keep enjoying your books and each and everyday, see you at tea, {{HUGS}}
 
hey you guys don't tell me your are sorry i am going to be in the comapny of so many people with spirit, gumption, honesty that if i have to be anywhere like this i am content that it is with so many of you thanks janelle ( i always loved e.e.cummings)
 
Okay, have it your way, I'll take it back! Just kidding with you my dear. I'll just say Welcome Janelle.
 
HI Janelle

Well, if that is ever the most 'non-answer' answer! It's ALS because I can't figure out anything else it could be? I think that's got to be a new one! Treatment options? (Drug trials or Rizalule (sp?) Bipap for the sats in the 60's at night?

Understand, I'm not doubting YOU at all, I'm doubting the competency of what they are...rather are not doing for you.

No reason to give up your books if you an still read them with the good arm and enjoy them! None at all. Keep your keepers! I understand not being able to hold books anymore--I can't either and use an ipad exclusively.

Please contact the ALSA and get some suggestions as to what to do now--other than what you've done. If you know that your husband care for you--consider perhaps a live-in caregiver that will exchange room and board for help?

Start the ball rolling for other assistive devices you might need, since your arms are appearing to go first. Learn to use them early if you can. There is much support here as you've seen--I'd feel a lot better if they could give you a definitive answer! It sounds more like they are just deciding it is possible and diagnosing it based on that, it doesn't seem like it's as clear-=cut as most are by the time they are officially diagnosed.

Either way--hopefully they can get you the help you need! Hugs and prayers.
 
Welcome officially to our family Dear One! Come to Tea and Whine and Cheese and also PZ's After Five a pub when the smoke clears! We'll be here...or there. ;)
 
Sorry to hear this news, Janelle. Sure is strange welcoming people to a club that no one wants to see expand.
 
Hi Janelle, I'm sorry that you have to be here. However the people here are great.

I have found it much easier to read on my Nook. I can't hold a paper book anymore. I am so glad that I have had a life long love of reading. It has really helped.
 
Hey Janelle,

Congratulations on leaving the Land of Limbo! Your doctor's answer sounds similar to the first one I received... they're so clueless.

Don't chuck every bit of your "old" life all at once! Sounds like you are givin' up and givin' in, and I doubt that's what you really want to do. Sure you got some lemons, make lemonade! Erm... well, since you're talking books, make a library ;)

~ Sarah
 
I will always respect my ALS neuro for not scaring the pants off me in 2009 with a tentative diagnosis, but waiting until he was without doubt to tell me. This is a club none of us volunteered for! But the ALS Assoc. folks in this area are great. This forum is full of caring, experienced people and can help you find any answer you need. Don't hesitate to ask...one of us has had the experience to help. This isn't the end of life, just a different one. And remember,each case is different. Mine took 3 years to disable my right hand and left ankle, so I am one of t he extremely lucky ones. One day at a time, and welcome!
 
Just back from Chicago and my second opinion "I cant say it is and I cant say it isnt, but because I know of no other condition with these symptoms, It is ALS and see you in Aug if you wish to drive up to Chicago again"


janelle


Yep, that's about the size of it.

Friends of mine gave me a shirt, it says "IT IS WHAT IT IS"

Welcome Janelle,
Sorry you're here, but, if it is what it is, then this is the place to be and the people to be with.

Hang in there, don't know you yet, but already love ya.

Cheers,
Casey
 
Welcome aboard Janelle. Sorry you're sad to see your paper books go, but then again less to dust which means more time for reading!
 
Welcome, Janelle. I need you to visit me for a while. You know how to get things done!
 
Welcome Janelle.....this forum has helped me so much.....hope it will you too!

Judy
 
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