I appreciate your responses/suggestions to my post. I notice on your signature that it says diagnosed with ALS but still checking for rare diseases. Are you still testing and did you ask the dr to do further testing or did he/she suggest it?
My wheelchair is manual but intend to get pwc soon...not sure what kind is the best. The AR ALS chapter will find this for me and this is at no cost to me. Ins pd for my AFO's...this stops the tripping! Have fun at Disneyland!
I had to get a second brace for my left leg but I am still walking with my walker and use a wheelchair for distance. The fatigue is awful with ALS but laying down and taking a power nap is good for this. How about you?
hi kel -- i put a post up recently looking to speak to ALS patients and you had replied (giving me direction on a better place to post to get in touch with people in the Vancouver area). I read through some of your posts on here and was struck by your youth and the health issues you have experienced at such a young age. was wondering if you would be up for chatting with me about it sometime? let me know.
kind of thought thats what was going on. thanks for letting mr know. if there is anything I can do to help you through your turmoil, please let me know. This is an easy for any of us and we all need someone to listen now and then. The forum is it a great place for support to bad the hugs are virtual.
is the ike button now gone for good, have you heard? i wasn't on much this wknd and now i don't see it in any threads, but as weird as the site has been i didn't know if it was just me or everyone. mp
Kel- Im really confused. How is it that you are alive right now? Any o2 level under 80 is an emergency which most times leads to artificial ventilation or intubation. How is it possible to be alive after having a level in the 30's, especially since youve never mentioned intubation or anything of the sorts. If your levels were that low, they wouldnt just get better by themselves. Not when its that drastic. Especially if it were from ALS.