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  1. Lilacs53

    A interview

    Good morning everyone :) I did a 45 minute phone interview this last Wednesday on ALS. I will be getting paid a $100 for it, but would have done it for nothing. The young man that interviewed me was very professional but yet compassionate. All I had to do was tell my story about how ALS has...
  2. Lilacs53

    Long time no see ...

    Hi everyone, It's been a while since I've checked in. We had computer problems and had stuff going on with our family that we required our full attention, but all of it seems to be taken care of for now. I hope everyone is doing all right here or as best as can be. The disease has spread...
  3. Lilacs53

    Carbon dioxide poisoning

    Hi everyone, Can anybody tell me if a person always has a headache if they are dealing with carbon dioxide poisoning? I ask this because for the last week or so I have been dealing with headaches off and on. I usually wake up with them in the mornings and a couple times during the night I...
  4. Lilacs53

    Went to the doctor today...

    for my back and hands, hoping the problems that I've been having with them wasn't ALS related, but something that would eventually go away. No such luck though. It is from the ALS.:( The doctor didn't even bother with a x-ray, said that all the symptoms are ALS symptoms & no sense in subjecting...
  5. Lilacs53

    Having back problems

    Hi everyone, For the last few days I have been having problems with my back and I'm not sure if it's ALS related or not. Maybe some of you would know and I would have more of an idea to make an appointment with the Dr or not. It's not the muscles of my back, but my spine, specially the...
  6. Lilacs53

    PALS and our skin

    Hi Everyone, I was wondering if ALS effects our skin or if not then maybe I need to see a Dermatologist? I have noticed some changes in mind. My right leg, which is my weak one, is starting to feel rough and has these little red bumps on it for below my calf to my ankle. The top of my...
  7. Lilacs53

    My & Gerard's oldest son...

    Rob, found out today that his girlfriend has Huntington's disease, which to me after studying about it, sounds worse than ALS. :( They have only been dating for a short time and today was his day off work, so his girlfriend took the day off so that they could spend the whole day together. She...
  8. Lilacs53

    MediciNova-MN-166/ALS Study

    Hi everyone, I received a email this morning from the CDC saying that a study is going to start on this drug called MediciNova-MN-166/ALS. The study is going to take place in Charlotte, NC., thought some from here who live near there might be interested. Here's a link that tells more about it...
  9. Lilacs53

    Question on AFO's

    Does anyone know of a good sandal that a AFO can be worn with? I know it's winter, but I'm hoping to be ready for when summer gets here. We live in Arizona and as I found out last summer, gym shoes can be awfully hot in our summers here and with the AFO makes it even more uncomfortable. :?
  10. Lilacs53

    Merry Christmas

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