My mom passed away in January of 2017 after a year long battle with ALS. Her brain was autopsied and markers of the c9 mutation were found. Now that I know what to test for, I would like to have genetic testing done.
I know I need to obtain long term care insurance before the testing and would...
Can my daughter be paid for taking care of me?
She does not work, and I need help. I just got approval for Medicare, and I have secondary insurance through work (I am retired) too. I have long term care insurance, but they will not cover a family member.
I'm new here.
My Dad was diagnosed at the end of January, 2016. His progression seems to be rapid and he can't even make it to his first Clinic which would have been tomorrow. He'd have to go flat on his back in an ambulance. He is 83 and just arrived from independent to skilled...
Today mom had her clinic visit. Her fvc numbers were really low. She tested at 55 two months ago, and before that she had maintained a constant 60 since October of 2014. Today she tested at 17. I was unprepared to hear such a low number since she doesn't outwardly show such marked decline. When...
There appears to be considerable confusion among patients, doctors, caregivers, and regulators about the right of ALS patients to elect who will provide their care. The rule is actually very simple: an ALS patient should have the right to elect who will provide their care—licensed or...
Last week, Patti and I went to the clinic and also met with our regional ALSA rep. Some good and some bad has come of this.
The Good: People are cracking, and we're starting to get equipment and other needs fulfilled. Patti's power chair has finally been approved (only took 6 months of games...
I've been a member of the ALS Forums for a while and even posted a question or two. But this is the first time I've posted to this subforum.
I'm the primary caretaker of a good friend of mine, Patti. She was official diagnosed in November 2013, and she's been living with me since...
Frequently asked questions about Familial ALS (FALS)
My relative had ALS. Am I at risk?
If it was one relative the answer is generally "no". The exception to this is if you also have, in the same bloodline, a relative with unusual dementia, especially younger onset and especially frontal...
. . I have been not too active on the forum lately. It has become hard for me to type more than a sentence or two. I mostly find myself offering condolences when people have passed, which is always sad. But at one time I was pretty active here so I thought I'd post an update. Also I'm trying...
Anybody know of a company that offers ltc ins. that would also include nuero diseases.Just shopping around for ltc ins. and hoping someone here has some suggestions on a co. that they use.thx alot guys.