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Old 12-07-2018, 10:42 AM #11 (permalink)
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Thomas933 Thomas933 is offline
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Join Date: 2018
City: Providence
State: RI
Country: Uni
Diagnosed: 12/2018
Interest: I am a caregiver for someone with ALS/MND.
Posts: 70
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Thomas933 Thomas933 is offline
New Member
Thomas933's Avatar
Join Date: 2018
City: Providence
State: RI
Country: Uni
Diagnosed: 12/2018
Interest: I am a caregiver for someone with ALS/MND.
Posts: 70
Thomas933 is on a very distinguished roadThomas933 is on a very distinguished road
Default Re: Just found out - please help.

Thank you. I am trying to focus on the fact that we need more information about how long he has. He started in his legs -- can't run anymore but can still walk. However, it was quick -- at the end of August he noticed a limp or dropped foot, not he has trouble in both legs.

The only arm they performed an arm emg on was abnormal. His chest, chin and neck emg were normal. His lungs are fine - he had a test yesterday.

What I need to hear from someone is that we are, at least, looking at years (like 3 - 5) not 1 - 2 (or less). Then, we can plan and pave a path to acceptance (whatever that means) for us and for our kids.

It's crazy that I am hoping that someone will tell me my husband will live for 3 more years. I need to think that we are going to be able to live with this disease for a little while before we die from it.

That's what I need....3 years to my youngest is a long time. So, if you can provide some reassurance about time left from where we are now, that may just get me throught today (my youngest child's birthday).

Peace to you today, thank you.
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