Recent content by djbailey

  1. djbailey

    Sleep Number bed or other adjustable option?

    My wife and I purchased a split King numbers bed with all the bells and whistles. And it was a good selection for us and we used thought out her journey. Hospice, got us a air topper for it towards the end when my PALS started to get a sore at the base of her back bone (right where the bed...
  2. djbailey

    go,go,go

    I can relate. It has now been 6 weeks and all the kids have been gone for a some time. I have cleaned the house and started getting rid of things, how can one woman have so many cloths? If ALS did not break the bank than maybe post ALS will. I bought a new pickup truck after selling the Van...
  3. djbailey

    social security

    I suggest you talk to an attorney who specializes in social security. An initial consultation is usually at no cost.
  4. djbailey

    PALS Micky has departed

    At 10:29PM March 9, 2016 my wife breathed her last breath while in my embrace. May she fly free, and eventually return my hart. She received her diagnosis March 10th 2014, and passed the day before her 2nd anniversary.
  5. djbailey

    CALS Roll call

    Still here and checking in. This week I believe we have made one of those advancements that you do not want to make. My PALS eyes have started to be affected to the point she is not able to move them very far side to side or up and down and her ability to communicate with her tobii has been...
  6. djbailey

    My husband has died

    Our harts are with you and your family.
  7. djbailey

    Still working on ALS Clinic

    MUSC is certified by MDA. We have attended a couple very good clinics that were certified by both MDA & ALSA. I am sure that there are good clinics out there that are not certified by anyone. I will say that MUSC is working to improve there clinic, just not sure they are there yet.
  8. djbailey

    Still working on ALS Clinic

    We went to the MUSC clinic because it is 15 minutes from our house. At the beginning when we could travel we went to Mayo. At the current stage we are in, clinic visits are just to hard for my PALS to attend. If I was going for a confirmation of Diagnosis in this area I would head to Mayo...
  9. djbailey

    CALS Roll call

    I'm still here as well. Not one of our best days but then not one of our worst either.
  10. djbailey

    CALS Roll call

    Just checking in. Still around but eyes are tired this morning. Was up 13 times, according to my Fitbit, during the night trying to keep PALS settled in. Just about the time I start to go back to sleep, up I go again. Then my three dogs do not let me forget when it is time to eat. I swear...
  11. djbailey

    CALS Roll call

    Still here!
  12. djbailey

    Question about MicKey/PEG tube

    my wife had this done. The Doc popped the G-tube out in the office. It took 5 seconds. She said it really was over so fast that it did not hurt. They stick the Mic-Key in and inflate the donut with water and the whole thing last about 5 minutes and you are out of there. She has had the...
  13. djbailey

    Start hospice tomorrow

    Neal - My wife was having a lot of very bad days last September. We did not feel that we got the support from our clinic docs and such. I figured the end was with in a week or so. We started hospice the last week of September, things got better and they brought in the medication and support...
  14. djbailey

    CALS Roll call

    Still here, bad morning today but last few weeks were ok. Using more morphine lately, mostly in the evenings or before I put her in the shower. Wasn't up more than an hour this morning before she needed it. We don't leave the house much anymore but still have good moments. Marry Christmas...
  15. djbailey

    CALS Self Care

    I have continued my work out by moving 110lb, 5 or 6 times a day. In stead of "sit ups" I have adapted to "get ups and get or do". My "fit-bit" shows that I have anywhere from 9,000 to 13,000 steps a day. If I could stop the constant snacking all day I would quickly go back down to 170 lbs...
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