legacy

  1. affected

    Fly free Tripete

    I spoke briefly with Pete earlier this month and he said it was too hard to type. I asked if I could let you all know this, but he did not manage to reply. This morning I received an email from Carey to let me know that Pete has passed away. We all knew Pete deeply through the sharing here...
  2. N

    Need help with Avap setting

    I got best friend in Russia with ALS 60 years old guy and send him Respironics Legacy Series BIPAP last year (thank you for advise from forum). They had doctor who recommended setting. Everything was great. Than recently doctor change settings (increased) and quit the job. My friend realize in...
  3. B

    Looking back - giving forward

    As the last of my birth family, I am writing a Memoir of stories and history no one living knows. I consider it a Legacy to future family. I am not a "writer", nor eloquent, that's not important in a first draft. Only the information. Is anyone else writing one or interested in doing so? May...
  4. S

    I'm Hoping to help veterans with ALS

    My dad recently passed after a 2 year battle with ALS. I was his only relative, so by default became a caretaker. I spent hundreds of hours on VA benefits and my Dad's wish was for me to help others. I found PVA and DAV in my area to be of very limited help. They basically got me started and...
  5. C

    Touching Base

    It's been 5 and a half weeks since Mom passed and it has been such a whirlwind, but I've been thinking about the folks here with such gratitude. (I've typed five summaries of these last weeks and keep deleting them. Suffice it to say that they've been busy and good and sad and maybe I'm...
  6. rose

    A petition you should be aware of

    I don't know how many of you are familiar with the ENFit connector for tube feeding, (and the behind the scenes maneuvering by GEDSA). I cannot even imagine what some of you must go through trying to screw the darned parts of the ENFIT connectors together. I've never used ENFit, and have a...
  7. F

    Video Legacy.

    Hi everyone, I'm working on a short film about people with ALS recording legacy videos with messages for friends and family. I was wondering if anyone would be interested in collaborating. Ideally I would like to feature some clips to show the range of video types people have made. Alternatively...
  8. L

    The universe keeps dishing it out.

    We recognized the first anniversary of Kathy's death on December 20. On january 23, the anniversary of her memorial, my father was admitted to the ER with internal bleeding. It was harrowing, as ER admissions can be. He lost half his blood volume. It's possible he had a stroke at that time. My...
  9. P

    4 years

    9/12/2012 A day that changed my life. Turned it upside Down. A day that changed the ones I love. Brought challenges I was not sure I could face. Looking back on that day. I have learned that living with ALS. Has not weakened my spirit, but made it stronger. I have made many new friends. And...
  10. affected

    balancing on the other side

    Yesterday I helped run a conference with MND NSW titled "Living well with MND". I did the registration desk, so got to greet everyone which is a busy job. It was a jam packed day with speakers in order: Speech pathologist Dietician Stoma nurse Pulmonologist Palliative care director...
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