motor neuron disease

  1. J

    Amazing how 48 hours can seem like 48 days

    Hi there, My dad was diagnosed with motor neuron disease 48 hours ago! After I day of shock and crying I decided surf the net to find out more about this and it lead me here. I have read through pages and pages trying to see if all the symptoms match. And I have concluded that everyone is...
  2. E

    About Brentonjb

    It seems almost unreal that almost three weeks ago "ALS" was not even in my vocabulary. Not I am, admittedly, frantic and desperate for answers. Yes, I know we should be asking the doctor. However, I feel like the time until the next appointment is almost too much to bare. I feel like I am...
  3. C

    New Member / Multiple Symptoms / Limb Onset? / Tongue Problems / Help Appreciated!

    New member requesting help and direction. Here's a rundown of my current symptoms and the last 5-6 months. I'll do my best to summarize. My current symptoms are: Subjective weekness in all four limbs, chest, shoulders, back, face, jaws. The weakness in my legs has spread up my legs from my...
  4. Jason's Dream

    A Year Ago Today..

    Wow, .. Its soo hard to believe that 1 year ago today our lives were forever changed. I can still remember that day like it just happened. Going into that office, searching for answers, wanting to get help for Jason. I can still remember the colors of that room, how small that room felt, even...
  5. T

    When should he go to hospice?

    Hi everyone, Longtime lurker, first time poster :-) My father was diagnosed with motor neuron disease in 2009. He's now 35, has very limited control of his body including his neck. He has problems with breathing [he's forced vital capacity is under 50%]. He can still eat and talk though. He...
  6. F

    My speech at my father's funeral

    My father was born July 7th 1947 and died Febuary ninth 2011. Today, Febuary 21st 2011, we gather here at his funeral to say goodbye. Let me present to you the programme: First, I will say a couple of things. We will sing a psalm. We will hear the Prelude to Bach’s Air — played by the orchestra...
  7. F

    My speech at my father's funeral

    My father was born July 7th 1947 and died Febuary ninth 2011. Today, Febuary 21st 2011, we gather here at his funeral to say goodbye. Let me present to you the programme: First, I will say a couple of things. We will sing a psalm. We will hear the Prelude to Bach’s Air — played by the orchestra...
  8. jaws

    Recently diagnosed

    Hi, I've been lurking for some time, and set up an account last month. Though I'd hoped to be able to leave this forum as a scary side note in my life, as of this morning, that's unfortunately not an option for me. :sad: Backing up a bit: last summer, I found myself unable to clip my nails...
  9. M

    Financial disaster and FTD/ALS patients

    I'm a new member with a husband who, after 12 years of confusing symptoms and visits to doctors all over the country, was finally diagnosed in 2009 by the NIH as having frontotemporal dementia (FTD) with ALS-type motor neuron disease. Every day brings a new problem and I appreciate finding a...
  10. M

    ALS with FTD - help!

    Since 1997 my husband (now 70 yrs. old) battled a series of strange symptoms which weren't definitively diagnosed until he became a patient in the Undiagnosed Diseases program at the NIH in Nov. 2009. The diagnosis is frontotemporal dementia with motor neuron disease closely related to ALS...
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