Recent content by Turtals

  1. T

    Animal companions- share your pictures!

    Here's Kona!! Our funny-looking, but super sweet designer mutt ("mini-doodle" aka toy poodle/golden retriever). She is a faithful companion to her dad/PALS and like Nikki's cat, she thinks that every one of his visitors is here to to see her. The first photo was taken just now on the couch...
  2. T

    "Important information" template?

    Hi all, I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.) I know we should probably have compiled such a thing already given that my...
  3. T

    Sleeping all the time...early stages

    Also wanted to share my and my husband’s two cents for the Spring Training trip: Highly recommend it. Shortly after his diagnosis, my husband took my older daughter to his alma mater (trip had been planned before diagnosis). It was a really important bonding time for them. Its too bad that...
  4. T

    Sleeping all the time...early stages

    My husband was diagnosed two years before yours in December 2016 (and we also have teens). He kept working (and driving) until the summer, but with gradually reduced hours. His was bulbar onset which was particularly hard for him given that most of what he did at work was meeting/talking with...
  5. T

    Radiation therapy for secretion management

    Was hoping for feedback from this useful group on their experience with radiation therapy for secretion management. To date, we have been managing my PALS secretions with a combination of scopolamine patches, glyco subQ injections (pills were not effective and he now takes injections every 4...
  6. T

    The Lonely Burden of Not Dumping In.

    Hi Thomas, Though we received my husband’s diagnosis two years before yours, every time I read one of your posts, they hit so close to home and touch on exactly what I have felt or been feeling. Shortly after my husband's diagnosis, his cousin shared the same Ring Theory article (also this...
  7. T

    Hi Greg - I was just looking at the thread referencing your magnum opus. Could you send me a...

    Hi Greg - I was just looking at the thread referencing your magnum opus. Could you send me a copy/link to it since you removed it from the forum? Thanks so much!!!
  8. T

    Portable shower for downstairs

    Hi Tillie, Great idea about the rolling drawers. If one googles the shower, there are some photos/graphics about how it works. The vinyl pan is velcroed to the sides. To get the chair in and out, one simply lowers the front bar, rolls the chair and then raises the bar back up. As far as...
  9. T

    Portable shower for downstairs

    Note that the water stays completely within the shower. Outside the shower is one of those plastic mats that you would use under a desk so a rolling chair could move easily (I realized that someone looking at the photo may have thought the rug was soaking wet so wanted to clarify that it is dry...
  10. T

    Portable shower for downstairs

    The shower we bought was the SS4040 from Fawssit: I think it was around $2800 including shipping. Great customer service. Really care about their product and helping others. I've attempted to attach 5 photos to give an idea of the room set-up we have (dimensions are ~ 8-9 ft x 14.5 ft). The...
  11. T

    Portable shower for downstairs

    When my husband could no longer do the stairs, we considered the stairlift option (ruled out for reasons others have said), remodeling our downstairs (also ruled out due to disruption, timing, cost) and went with a portable shower. It works really well. It works off a regular faucet and sink...
  12. T

    preparing for first clinic

    I agree with the suggestions of the other posters who know the clinic. That visit was such a blur that I cannot remember specifics. There is definitely a lot of information covered. Everyone on the team is really approachable and compassionate. Don't be afraid to ask...
  13. T

    Wanted to share my blog.

    Just checked out (and subscribed to) your blog. Love your tone and the way you capture what its like living with ALS. Sounds very similar to my pALS. Hoping to direct some friends to it so they get an understanding of what we are going through.
  14. T

    Resources for teens with a parent with ALS?

    Being a teenager these days under normal circumstance is hard enough (for example, I have a senior and we are in the throes of college acceptances/rejections/etc.), but add having a parent with ALS to it.... Aside from therapy, what has worked for your kids? Does a forum like this exist for...
  15. T

    Just found out - please help.

    Thomas933 I am so sorry if I came across as being didactic and implying that my way was the right way (please disregard any badly communicated thoughts or tone and chalk them up to sleep deprivation) There is definitely "no right way". Just what is right for you. You know yourself and...