I would like to hear from any pALS or cALS who are living with a trach. I understand the medical and technical side of it, but I am interested in hearing the nitty-gritty ramifications of living with all of that at home. The real stuff. How do you staff, are there lay person family members...
Hi, yes I was doing better. Now, I’m so worried about the financial security of our family. Before this, we had a plan for retirement, college, etc.
My husband earns almost twice what I make. How are we going to survive when he can’t work? And, how will we make it once he is gone? He has life...
A cost question here. When they came out they told me my insurance is paying 85% and I'm paying 15%. My 15% comes out to 178/month. That means insurance is paying $1008/month, and together we pay $1186/month. I asked for how many months until we own it, and she said no, no chance to own only...
This is my first post. My father was diagnosed with ALS at the end of June. He is 73-years-old, and the whole family has been in shock because nobody had any clue something this devastating was going on with his health. This was truly a shock to the system.
Of course, we are still...
So, this is my first post here since Dave died. It is now 3 weeks since his death. We had a beautiful memorial service / "celebration of life". I know Dave would have been mortified at what a fuss I made. I just wanted to celebrate the life of the man I loved so much. Funerals & memorial...
My name is Julia, I have not been diagnosed with ALS, but have had these symptoms.
In Late April I started having clumsiness and heaviness in my legs where it felt like I had elephant feet. Initially I had some numbness from my chin to my knees ( I know this is not a typical symptoms...
Could you help us understand a Dr's responsibility to a patient when a drug like radicava is approved for treatment. We don't know if my husband- who has slow progression at this time - should begin treatment.
Thankfully -we have great medical insurance at this time- so finances aren't the...
(I questioned whether to post this or not. Some may take it wrong but it may
bring some conversation to this sub-forum. And… I’m not sure what
sub-forum it belongs. Mods… move it if need be.)
This is about decisions many of us face. First, I no seek of sympathy, Ann and
I have been very...
Hello All. I’ve thought long and hard before posting this as I’m very much aware of the daily struggles a lot of you here face. I am however finding myself on this site more and more frequently and feel untill I have my questions answered from people with real life experiences - only then will I...
I have looked into this study and had a fairly extensive discussion with the study coordinator at the San Francisco site. I am posting information about this study here in case anyone is interested.
Enrollment is still open for this phase 3 study. The study is sponsored by Brainstorm Cell...