Recent content by ralsip

  1. R

    Fvc and the end

    Sorry for the topic but curious about Fvc and life expectancy. My fvc held steady in the 60s for about a year but dropped from 64 to 44 from Feb to May. Started Trilogy in early June and use at night, but Fvc down to 31% at Clinic visit a couple of days ago. At this rate wondering how much time...
  2. R

    Rate your ALS on a scale of 1 to 10!

    I was diagnosed with type two diabetes five days before my ALS diagnosis. A couple of months later I got a voicemail from my health insurance company, Federal Blue Cross Blue Shield, that I qualified for additional benefits. I thought that was pretty neat and was excited when I called them back...
  3. R

    I am so sorry I never responded to your message. I just now saw it as I have never looked at my...

    I am so sorry I never responded to your message. I just now saw it as I have never looked at my profile or realized you can send messages like this. I appreciate the information. unfortunately, I have progressed quite a bit in my extremities though breathing seems to be okay. I hope you're...
  4. R

    Use it or lose it?

    Thanks to everyone for the replies. I go back to the clinic next week and expect to have more discussions about getting a feeding tube and also starting the paperwork on a power wheelchair. I've started using protein smoothies to up my calorie intake. I'm starting to agree eating is overrated...
  5. R

    Use it or lose it?

    Sorry I stole that from someone else's post but I couldn't think of a better description of what I wanted to ask. I was diagnosed in January 2014. I quit working in July. Once I quit working, I start spending more more time at home either sitting in the chair or laying down in bed using my iPad...
  6. R

    OMG what now!

    Shawn, I hope you get a different diagnosis from the MRI but if that is not the case, you will find a lot of support on this website. I am 42, happily married with two kids (12 and 7) and was diagnosed about 8 weeks ago. ALS never even occurred to me (frankly I did not know a lot about it)...
  7. R

    Positive ALS Support Group Experience

    I was recently diagnosed with ALS and am 42. I went to my first ALS support group in my hometown last night and met many wonderful people whose lives have been affected or touched by ALS. I was a little nervous about attending but I am so glad I did. I was the second person there and met a...
  8. R

    recently diagnosed - checking on ALS clinics for second opinion

    Thanks again for the information. We are going back to Emory one more time but will then find a clinic closer to us in Louisville. Paulette I appreciate keeping a sense of humor. At my job there was talk of putting me in an administrative leadership position that frankly I didn't want. I...
  9. R

    Back ache/pain with ALS

    Hi, was recently diagnosed with ALS in late January and had it confirmed by Dr. Glass at Emory earlier this month. So far symptoms include weakness in left hand, some light cramping in hands and legs, and just a touch of weakness in leg at times. Fasciculations started in mid December in left...
  10. R

    resources for telling young children about diagnosis

    Thanks again for the information. We told the oldest but wouldn't tell him the name to keep him from reading on internet. Going to see a psychologist he had been seeing for other things as he said he had other questions. Took it pretty but seems better after a coule do days. I am not a vet...
  11. R

    resources for telling young children about diagnosis

    Thanks so much for the information. My oldest has stared seeing a psychologist for anxiety issues before this so we spent some time with him discussing how to talk to them. So far they just know some weakness in hands but only because we've mentioned it.
  12. R

    resources for telling young children about diagnosis

    Was just curious if anyone had any resources or tips on how to handle telling small kids. Was diagnosed a little over two weeks ago and got confirmation this week. Have two boys, 12 and 7. Part of me wants to tell them about this as it will mean lots of changes (selling our house which is not...
  13. R

    recently diagnosed - checking on ALS clinics for second opinion

    Thanks to everyone. Went to Emory and saw Dr. Glass. He and his team were very good. Unfortunately they confirmed my original diagnosis. Hoping for a slow progression.
  14. R

    recently diagnosed - checking on ALS clinics for second opinion

    Thanks Max. Been a little better sleeping last couple of nights. Getting used to twitches at night. They go 24/7 but don't bother me as much during day. Hard at night time.
  15. R

    recently diagnosed - checking on ALS clinics for second opinion

    Thanks again for the help and suggestions.
Top