notme
Reaction score
11

Profile posts Latest activity Postings Media Albums About

  • hi,was reading some past posts and read of a incident you had with someone.
    i know you have never said you were diagnosed,quite the opposite.
    the thing with your legs does sound like myoclonus/umn,i know because i get this....not as bad as it used to be and baclofen helps.
    and yes if your umn dominant with a als diagnosis you can get myoclonus.......h4c is umn dominant als and she gets it.
    sorry to read of your sleeping problems,i sleep with 5/6 pillows if not i can not breathe properly.
    have woken up suddenly in the night off my pillows and realised i was not breathing and start to panick.....very scarey.
    you take real good care (((hugs)))caroline
    I use a cane most of the time now which is a big help. Last time I fell (last week) I didn't have it. I was in our closet trying to hang something up. My ankle just caved and my foot is all black and blue and a little swollen still. I'm being less confident and more careful now. It was quite humbling lemme tell ya!
    I've been doing pretty well all things considered! Just the usual aches and pains that I've been dealing with for many years (arthritis). I walk funny and can't grasp anything in a graceful manner. My typing is starting to suffer. My ring finger on my right hand hardly works at all so I miss "o"s on the keyboard quite frequently. Tripping or being off balance or dropping, spilling, knocking stuff over is par for me. Brad just checks on me a lot. He came home from work yesterday and I was downstairs doing something. He yells down "You alright?" LOL! God bless him. He picks me up when I hit the deck and thought I may have fallen down the stairs. I worry about him and his state of mind most of all. He's not used to this much reality. My family will help him through this. We're all quite used to reality. :)
    I've had some doctors recently that I couldn't make any kind of connection with. Very frustrating for us both. Finally we have a Neuro that we really like. He's a great guy and also has MS. I found that out after our initial appointment!

    Well, I hope it's something managable Sweets! I remember thinking that I wanted it to be anything other than ALS. Oh well, it's mine now and I'm going to take care of it as best I can.

    Sending good and loving thoughts your way Patty!

    Love,

    Marta
    Meh, I feel okay, just not perfect, ya know? I think I'll stay pretty quiet this weekend just to mend. How are you?
    I've got a little bit of a sore throat but good otherwise. Sometimes whiny is good! Releases pressure. I hope you're having a good day today!! ;)
    Whatever is going on, Ms. Pie-- I feel like crap. I have no idea why. That's half the issue--body wise, I have no idea what they'll find--but I'm tired of being sick. Cooking dinner wipes me out. Easy, normal things people do exhaust me--and I KNOW that's not normal. I'm 50-- not 90. I'm tired of waking up with headaches that make me nauseated to lift my head. Just sick of it all. But--you're a sweetheart.
    Just read you blog and enjoyed it! ; ) Personally, I don't feel sick so I don't think of myself as being sick. I don't say I have ALS, I say I've been diagnosed as having ALS. I don't hurt anywhere except where I have a little arthritis here and there. I just walk funny and drop things and can't button my pants or put my watch on half the time. But I feel pretty good for the most part. I hope this message finds you in good cheer! There is much to be grateful for regardless of what's going on. Keep that chin up girl! It will be easier when you find out exactly what's after you. xoxoxoxo!!!! I'm thinking of ya!
    Hi Dear! Happy Easter Weekend!! I hope you're doing well. I'll talk to you later!!
  • Loading…
  • Loading…
  • Loading…
  • Loading…
  • Loading…
Top