ALS Walk

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?

a reply to: LoverBoy

It may be helpful to contact the ALS Association. They should be able to guide you through the process, and advise you on where to find a walk in your state, or any other state for that matter.

Considering your job you are right in being cautious with HIPPA regulations. However if you get the okay from the woman, (or her family if she has passed.) I would think you would be good to go.

I do appreciate your efforts. I was diagnosed with fALS in February 2014. In my case it is an inherited gene.


ETA: Almost forgot to give you this. www.alsa.org...

a reply to: akaal
I'm so sorry to hear that diagnosis. I wish their was something more I could do. Is fALS a form of ALS? I don't think I've heard the term fALS.

I'm in NC but their were no more walks here posted for this year. I looked into the Maryland, DC, Virginia district and found one there that I took off work to attend. The person who's contacts were there for info still hasn't gotten back with me after email and voicemail, so I feel sort of at a loss. I did sign up for the Roanoke walk, but im not sure if I have to fulfill the donation amount to walk or what. I am trying, but unsure how to go about that process as well.

I would love to reach out to the woman, but unsure if that'd open up a can of worms with hipaa.

a reply to: LoverBoy

fALS is the term used for familial ALS. It is the inherited form of ALS rather than the more common sporadic form.

I used to work in a hospital, so I understand your concerns with HIPPA. You certainly would want to get permission from the woman or her family I should think. I don't know how well you know them, but that would seem the prudent thing to do.