posted on May, 12 2015 @ 07:00 PM
I could use some help from anyone. As some know, this past year I started having problems with fatigue, dysphagia and weakness. After some tests I was
told I could have ALS by a few physicians. After about 6 months of different tests and labs etc they ruled on Lupus and Crest Syndrome.
The experience really made me aware of ALS on a more personal level. As a paramedic we see all kinds of diseases and ailments, but ALS patients
always stand out to me. I always wanted to get involved and do an ALS walk to try and raise awareness and money for these victims. I know it sounds
strange, but I do feel a personal connection to these people.
Ive ran calls on many ALS patients, but a middle aged woman recently that I ran on really got to me. It has been about 2 months ago and I cannot and
won't go into details, but I had a conversation with this woman on a very personal level. A mother of 2 children, 14 years into her diagnosis, and she
is now paralyzed with a trach and feeding tube. I was still able to communicate with her and really talk with her about her ordeal, about my stupid
situation, and about our life in general. When I transferred care over to the hospital, I gave her a big hug and told her thank you for sharing her
life with me, and for listening to my stuff also.
I decided to sign up for a walk but athere are none in my state this year. I signed up ( at least I think I did), for a walk out of state that is this
year. The whole process for me was very confusing on how to do the fundraising etc. Does anyone have any experience? I tried contacting the liason
through muktiple methods but have not heard back.
They recommend walking in someones name if you are able and know someone. It would be an extreme honor to walk in this woman's name for me. I just
don't know with hipaa if I should even attempt to ask my management if it is feasible in asking her. Any thoughts?
edit on 12-5-2015 by
LoverBoy because: spelling on this tablet...