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  1. ReginaS

    Worried my symptoms could be ALS.

    Hi Lucie, "After 3 assessments by the doctor assessing my strength and reflexes should I let go of this ALS concern?" - It would seem like a wise choice to do so. Time is too precious to spend it worrying. I used to worry a lot and found what Mark Twain says is really true: "I've had a lot...
  2. ReginaS

    Longtime left foot drop

    "My neurologist said it wasn’t ALS because of how long I’ve had this problem." This is true. Believe them. "It actually started with a lot of pain in the front of my left foot" ALS does not start with pain. With ALS, foot drop can develop but once it's there it does not go away. It's not...
  3. ReginaS

    PALS opposed to feeding tube

    My PALS chose "no feeding tube". He was diagnosed w/ limb onset but honestly, bulbar either developed parallel or right after. He progressed fast. 16 months after diagnosis he died. He did was very slender. Nurses, physicians, nutritionists and then palliative care advised/urged him to get...
  4. ReginaS

    Hospice pros and cons

    You might read this in other posts: we had all our DME in place before contacting hospice. Then called hospice organizations (there might be 3 in town) and negotiated with them that we could keep using the equipment. They did not let us use the same but wanted for us to give them back and...
  5. ReginaS

    Introducing Myself - And Question about Guilt Over Delayed Diagnosis

    Have been thinking about regrets: When it's something like a diagnosis and I have strong regrets - I might be trying to open a back door out of feeling so very helplessness towards the present situation - i.e. that I really cannot change it but deep in my heart I would love to do exactly...
  6. ReginaS

    50 ways to leave your clinic

    For the sliding: have you tried to cut up a yoga mat and put the piece(s) on the recliner to prevent sliding? I used to do that for areas that were too slippery. Our recliner was too deep. We made a construction out of pillows and sewed a cover over the pillows that we fastened to the...
  7. ReginaS

    Beginning diagnostic journey, pretty sure it is ALS, crippled with sadness and fear, general advice please

    Hello Marnes, ALS is a tragedy - it was one for me too. I could not believe it until Tom was diagnosed. I think he was diagnosed early - much less signs yet. It must be extra hard right now with an 11 year old. My daughters were grown... and just out of the house so I could cry all I wanted...
  8. ReginaS

    Shower buddy for shower over tub

    I do not know what company Team Gleason went through but the company asked for measurements (many) and used software to figure out what would fit in our bathroom. I was impressed. If Team Gleason does not have the money they might be able to volunteer the name of the company who they use(d)...
  9. ReginaS

    Shower buddy for shower over tub

    If you are really interested and want to talk to them - they gave us a "youth" chair - Tom was rather slender and that helped as well. In our case there was not enough space between sink - toilet and bathtub. So that bathroom did not work. In the other bathroom there was barely enough space...
  10. ReginaS

    Shower buddy for shower over tub

    I just found the name of the manufacturer that we used: Nuprodx. Our bathroom was too small for showerbuddy and they had more variations.
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