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notme

Extremely helpful member
Joined
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Messages
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Reason
PALS
Diagnosis
08/2011
Country
US
State
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If you are newly diagnosed, feel free to hit that little start thread button at the tip left here on this section (or anywhere else on these forums) and all those with the answers you need will answer pretty quickly with the best of their abilities.

Please, don't feel like you will be questioned or told to 'ask yor doctor' all the time as those,on the Do I Have Section are very often.

David, I am sure, started this section so those new folks with their questions and concerns could be helped quickly and where we would all realize you've been diagnosed and are very likely processing amlotmof very difficult and often confusing information.

The vast majority of folks here are kind and knowledgable to PALS (people withnALS) and CALS (caregivers ofmthosemwith ALS)

Browse around. We have sections for caregivers, but caregivers can post anywhere, too.

There are general community areas for fun gatherings, Christian support, and various other things.

No question is stupid. While to many here, the answer may be known, it's not so for you, and the PALS and CALS do realize that.

While many answers can be found with the search feature, it doesn't mean that we do not understand that you may well want answers having to do with your unique situation, and if there is ome thing consistent about ALS, it's,that it seems that every presentation is a vit unique in its own way.

So,e of you may be awaiting a second opinion. Post here....at least in my opinion, if one doc has said those dreaded letters, you're allowed to post in this area.

We are here to offer support however we can.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
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Country
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State
MA
great posting notme!

Just wanted to add that you're welcome to ask anything, and we'll do our best to help out. Being newly diagnosed is the scariest, most traumatic event I ever had to go through... and it's nice to know that there is a lot of life after the diagnosis.

So welcome to the party that no one wants to be at...
 

LornaM

Member
Joined
Oct 5, 2012
Messages
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Reason
Friend was DX
Country
UK
State
*
Thank you for starting this thread. It gives someone like me with a friend who is newly diagnosed somewhere to go. It's somewhere between The Do I have, General Discussions and Cals threads . I'm still floundering at the diagnosis and hope to meet and speak to people like myself and those actually diagnosed. Where do we go, where do we turn to immediately after diagnosis, as it seems we have been left high and dry for 2 months until our next appointment.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
Your first stop, and your PALS, will want to be the ALS assoc. for information.

For the PAL, in many areas, they will come to the home and speak with the family and answer questions. Here, they were instrumental in getting me in to see a good clinic, and within 3 weeks to boot.

Hopefully, others will find their way over here.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
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Country
US
State
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The MDA, ALS division has a set of caregiver guides that are excellent resources.

For those in the US, please register with the CDC and take their surveys.
 

Grateful

Distinguished member
Joined
May 11, 2012
Messages
302
Reason
Learn about ALS
Country
Uk
State
Greater London
Hi, LornaM

I'm very sorry to hear of your friend's diagnosis.

The ALS assoc. which Notme refers to is based in the US; in the UK the Motor Neuron Disease Association fulfils much the same role. There's a helpline called MND Connect particularly for people who are newly diagnosed, and they will put your friend in touch with your local branch as well as exploring ways to help your friend as quickly as possible.
 

deerhuntert6

New member
Joined
Oct 21, 2012
Messages
9
Reason
Loved one DX
Country
US
State
ga
Thanks you for your kind and informative comments. It is a difficult time in our life - as with so many others.
 
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