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ronwv

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Oct 16, 2008
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Loved one DX
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US
State
WV
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Morgantown
Actually, 2nd opinion. Seems to be textbook accord to the Doc. Also alluded that it was moving rather quickly. I dont want to get down yet though.
Just trying to keep it together now.
Seeing parents this sad and scared is just horrible.

Ive looked around here some, seems like some awesome folks. Its a shame it takes a disease like this to bring good people together.

Im not a prolific poster on any boards Ive frequented, but Im sure I'll be counting on many here for some info/support.


Ron
 
Ron, I'm so sorry about your mother's diagnosed. I know how scared and shocked both your parents must be. (And you, too.) Lurk, ask questions, share your concerns ... however, the forum helps you best, we'll be here for you.
 
Thanks

not sure what to do first. Im visiting tomorrow to do some work on their house. I have a little bit of literature. She likes to read so Im looking at getting some books. I dont want to overwhelm with ALS stuff, but Im sure she would like some solid info.
They have no net access (typical non-computer folks) but I may take my laptop and go somewhre with wireless to see if she would like to get access at their house. I dont want to push that much because she already has lost much strength in her right arm/hand. I just dont want to make her feel bad for not being able to use it well.
Show her this site too.

I just dont know if its too soon to be pushing all this. I want to do everything NOW and know that might be the wrong direction. I just think it might take a while for her to come to terms with this and dont want her to be bombarded/reminded of the situation when she might just like to get her mind off it.
I guess asking her what she wants is the way to go.


I could ask a million questions but will just go day by day to see what happens.
 
Ron,

Yes, it is horrible. There's just no way around it. You want answers and help, and they come slow as molasses or not at all. As far as what your mom is ready for, I read "Tuesdays with Morrie" and recommended it to my dad, but he never really seemed enthusiastic, so I didn't push it. Now I don't know if it would have helped or not...people don't always want to know everything that's going to happen to them (although I do), and the disease's progression is so different in different people.

All I can say is, I'm sorry for her diagnosis, good luck and you are not alone. Hope it goes better than you fear,

Debbie
 
Hi Ron,
I'm sorry to hear about your mom's Dx of ALS. Be sure that she gets registered with the ALSA (ALS association) and the MDA. They will be able to provide literature as well as various types of support. The MDA will help financially with a powerchair and speech device as well.

Everyone is different, but most people seem to need a period of time for the DX to sink in. It took several months for me when my husband was DX.

Your mom will also be automatically approved for Social Security disability (as long as she has paid into the system) as well as for Medicare. Although the approval is automatic with an ALS DX, she will still have to wait 5 months for Medicare and 6 months for a SSDI check. Good luck. This is a great forum with wonderful caring people. We are here to help.
 
Ron,

I'm very sorry for the diagnosis given to your mother. With ALS, time is of the essence. As someone has previously suggested, please introduce her to he ALS organizations in her area. They are a tremendous source of information and support.

The more your folks know and understand the disease, the better they can prepare.

Zaphoon
 
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Ron, So Sorry

Ron,

I know all too well what this disease does to a Person and their Family. I hate this disease. There are some wonderful, supportive people here.

Lorie
 
Hi Ron,
I'm sorry to hear about your mom's Dx of ALS. Be sure that she gets registered with the ALSA (ALS association) and the MDA. They will be able to provide literature as well as various types of support. The MDA will help financially with a powerchair and speech device as well.

Everyone is different, but most people seem to need a period of time for the DX to sink in. It took several months for me when my husband was DX.

Your mom will also be automatically approved for Social Security disability (as long as she has paid into the system) as well as for Medicare. Although the approval is automatic with an ALS DX, she will still have to wait 5 months for Medicare and 6 months for a SSDI check. Good luck. This is a great forum with wonderful caring people. We are here to help.

She pays for Medicare now. I guess she gets a regular social security check too, although small.
Is this different from what you mention? Is SSI in lieu of reg. SS or something different?

Im sure this is going to be quite a change. I just hope she stays strong emotionally.
 
You sound like me Ron when we found out my husband had ALS, let's do what we need to do NOW! All the info I could gather, he wasn't ready for that. Everything is so over whelming for all involved. The clinics offer lots of help but I found the best was from these forums more blunt and more honest answers than we got from the Doctors. So I hope your Mother gets used to the lap top or with you helping her.

Take a deep breath... let it out slow, hang in there.
 
Ron,

Everybody is different in how they handle the diagnosed. I should think your Mom is in shock right now and needs some time. Then again, she may remain in denial and prefer not to delve into the nooks and crannies of this disease. Either way, I'm sure you will come to realize what her way of handling this is and you will come to terms with it.

You are a wonderful son for wanting to find out as much as you can to help her. At least you will be armed with knowledge, and you will be able to help her when the time comes.
 
Hello Ron and welcome to the forum, although I am sorry to hear about your Mom. As you can see, there is a wealth of information around here, and a bunch of fine and caring folks. CJ is right- the best support you can provide right now is to learn all you can. It speaks volumes about your concern and caring, and at some point your folks will really need the info. Cordially, Cindy
 
Hey Ron,
Welcome to the forum, so sorry you had to find us though. My thoughts and prayers are with your mom and you. Yes, it is a scary time, but you have found the best bunch of folks anywhere!
You can come here anytime to talk, rant, cry, laugh, read, I feel sure you will find a lot of support and friendship here.
Never give up,
Never let up,
Never lose faith,
brenda
 
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