T
Reaction score
1

Profile posts Latest activity Postings Media Albums About

  • Thinking of you. Hope you are doing ok. I am anxious for spring to get here. I'm especially tired of ice. Take care, Kim
    Hello,
    my name is SONIA ABDUL,i am a young beautiful girl with a lovely heart . i saw your profile today and like to be your friend,You can write to me direct in my email( [email protected] ) so that i will send more of my photo to you and tell you more about me.
    ( [email protected] )
    Hi Tom,
    How are you doing lately? I see where you have been dealing with this for a long time. How is your progression now? My dad will be 79 on the 11th. He was diagnosed with limb onset in May of 2012. Drop me a line when you get the chance. Take care, Kim
    Hi Tom, I was diagnosed in 2011 with bulbar als. I still am mobile, but now having some hand weakness and legs are getting heavy. I cannot speak, use iPad to communicate and also have a PEG. My neuro has been after to me to get the pacer. I am on bipap but finding breathing getting worse. My neuro like to have patients use pacer and the bipap. I read all about your experience with the surgery. Which I must say scared me a little. I was just wondering how you like the pacer, how much has it changed your life, good or bad. I am so terrified of hospitals and surgeries, that I am pondering this. Any Input would help.
    Hello, I am new to this forum. I have ALS and if my insurance appeal goes through, I will be getting the diaphragm pacemaker very soon. I am fortunate that I am still able to work full time and live alone! They are suggesting that I will want to keep the cable connected 24/7. As my left hand is getting weak. Any suggestions on something I can make that would secure the cable from getting pulled?
    Had to postpone als clinic date. Fell and fractured three ribs. New date putme 15 days past three years since dx , so they refused to enroll me in new trial, still very disappointed
    Hey Tom- Can you check out Miss thread about DPS? She is looking for info from thise that have it.
    Hugs, MK
    met last year in dc. i plan to be there this year and expect to see you again. finishing up up year long drug trial (rasagiline) this month, did it help, not sure as i also do a supplement routine since day one. will enroll in third drug trial as soon as i get flushed out. still walk, talk, eat, breath, drive on my own. left hand is bone and right hand weaker so driving may discontinue in near future. still exercise regularly but with minimum weights. attended als ambassador traianing last oct in fl gives you a much better understanding of drug trials take care
  • Loading…
  • Loading…
  • Loading…
  • Loading…
  • Loading…
Top