Recent content by 10steps

  1. 1

    home healthcare?

    I asked friends if they could think of anyone who might be interested. the 2 that worked best both worked in nursing homes. I paid them $12/hr which was $2/hr more that they made at the nursing home with much easier work. No matter who you get you need to train them on what to do and how to...
  2. 1

    Incontinence

    As others have mentioned, I'd highly recommend the texas/condom cathedar . If you use them, try to convince your PALS to drink cranberry juice just to ward off UTIs. My husband wouldn't drink the cranberry until after his first uti...then he was always determined to finish his cranberry juice...
  3. 1

    Choosing not to get feeeding tube?

    My husband declined a feeding tube. It was his choice. He was not bulbar onset. From the first day of symptoms til the day he died was almost exactly 2 years. It came down to starving or suffocating - as someone else stated. He briefly considered the peg for me, if only to get his marinol...
  4. 1

    Reflection

    Miss, thanks for sharing. I am in the exact situation - my youngest is also graduating. It's an exciting time and at the same time I feel overwhelmed. The calendar is full and trying to adjust my work schedule to attend everything is a challenge but i don't want ot miss a thing! We do miss...
  5. 1

    Scholarships

    I don't know but i imagine the necessary follow up applies across the board. finding the scholarships isn't simple in fact I only found out about them through an ALS social worker. Even when you go to web sites ya have to search around a bit.
  6. 1

    Hospice or No Hospice

    Call the various hospice agencies in your area. Find out what each one is willing to offer service-wise. Also find out what the procedure is for going on/off hospice and then on again especially if you need equipment. Another good place to get a recommendation about the hospice agencies in...
  7. 1

    Scholarships

    There are scholarships out there for children or family members of PALS and deceased PALS. I'm just recommending that if you apply and send in all the necessary paperwork, you should also follow up regarding their decisions or appropriations. The various organizations have staff turnover and...
  8. 1

    I wasnt ready for

    I hear ya.
  9. 1

    Frustrated and sad

    Hey CR, i'm going to start with I'm also a transplant from the West coast to the East coast. The last time I was home for X-mas, I was 21. I'm now 43. This will be the 1st x-mas my daughters spend with my parents - they are 19 and 17. We didn't avoid x-mas with them, it just didn't work out...
  10. 1

    Fewer Good Days

    I'm very sorry, there isn't really a way to be prepared. Sending warm thoughts - cyber hug
  11. 1

    Hard Day Tomorrow

    I'm sorry Miss. i don't have any great words other than I wish it wasn't like this.
  12. 1

    Sadly, Joni's husband has left us...

    Thinking of you, I'm so sorry. hugs
  13. 1

    ALS, the only thing not ruled out?

    I know its hard to wait but just be straight forward with the specialist (is the specialist for ALS?). Lymes disease isn't uncommon here. When my husband saw the doctor that was the head of the ALS clinic he asked about the possibility of Lymes. At that time he had the results of 4 lymes...
  14. 1

    Home again

    awesome!
  15. 1

    Another Holiday Alone

    Well, I didn't have any plans until last wednesday when I was at the town dump and got an invite LOL - very formal around here! As far as family goes, I got the invite from the jackass last friday and my MIL only asked me to a family party this afternoon around 4:30. She was listing what...
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