Send me a message

What has made your life easier? Meds, transfers, groups, vehicles… I’d like to know about it!

I often say that I would have been so lost if my life had occurred ten years earlier. When Katie was diagnosed, I was just getting the hang of the internet. Finding people with similar conditions, talking with parents, and finding a variety of information that would have been almost impossible to access prior to this medium… well, I think it probably saved my life.

That said, I also have learned about and tried any number of things that didn’t help us one whit. Vitamins. Hippotherapy. Craniosacral therapy. Hyperbaric therapy. And on, and on. I do know families that have had gains from each of those treatments, and I’m not saying they’re without value, but in our case, they were mostly just expensive, time consuming and tortuous.

So, what has worked for you? What do you swear by? What hasn’t worked? I would love to hear about your experiences.

2 thoughts on “Send me a message”

  1. I am a neurologist writing a book for patients about ALS which includes a chapter on gastric feeding tubes. I would like to use your figure of a low profile tube (figure with caption “There and back again”). Can you give me permission (I will acknowledge you; please indicate the wording of the acknowledgement). Thank you.
    MBromberg

    1. Hello!
      You are welcome to use There and Back Again in your book. I would ask that you acknowledge the source: -Stacy Seigfred, SmartCP.org

      I would also love a copy of your book when it’s complete. Just let me know when it’s done, and I will give you an address to send one. Have a great day!

      Stacy

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Saying you shouldn't be unhappy because someone else has it worse is about as smart as saying you shouldn't be happy because someone else has it better.