Recent content by Rhonda J

  1. Rhonda J

    So many mixed emotions....I am a horrible person

    My husband has had this horrible disease for 6 years. He is 57 and I am 50. We have been married 11 years. He is a 25 year Retired Veteran of the Air Force. It came on fast, it took his voice and his walking first...then gradually he has declined to the point of being in a wheelchair 12-14...
  2. Rhonda J

    Just getting started as a CALS

    Hello and so sorry for the reason you are here.. but Welcome! In reading your post your husband is in the early stages, which my husband tried and tried to ignore symptoms, such as the walking and falling. He would not relent and admit he needed assistance, therefore making it harder than it...
  3. Rhonda J

    Toileting and underwear problem

    We get all of our equipment from the VA...
  4. Rhonda J

    Pity Party coming on!

    My husband has one of those talking boxes.. his speech was getting bad and to the point I could not understand him and he would not try to use the box.. you have to listen too hard to understand what the PALS is saying and it got frustrating to the point that I refused to talk to him unless he...
  5. Rhonda J

    Just me again.

    Hello.. so sorry for the problems you are having that this disease has caused. My husband has a hospital bed but before he got that bed, he has been using silk sheets, it makes it easier to move him and turn him. He has an air mattress on the bed.. it is an alternating bed..and can be changed to...
  6. Rhonda J

    Hubs is wasting away

    I am sorry to hear this is happening.. you could talk to his Dr. and have a peg tube put in. even if he is able to eat, it can be used to supplements. My husband was wasting away looking scary skinny and the Dietitian at the VA put him on Jevity...we also use it for meds. He gets 3 cans a...
  7. Rhonda J

    Pity Party coming on!

    Please don't feel sad or like you are a bad person... you are a wonderful, strong person....it takes a lot to deal with what we are dealing with. I feel sad too for my PALS..he isn't on a vent yet but that is where we are headed because he wants a full code if anything happens. I don't want to...
  8. Rhonda J

    Pity Party coming on!

    OMGoodness.. fell out of the sling? Been there.. almost like that...last year.. hubby got a new chair..we have a stand assist lift. His first chair let the lift get in farther so I didn't have to lift him back into the seat by myself. So.. we do the bathroom thing..I am putting him in his new...
  9. Rhonda J

    Pity Party coming on!

    Good afternoon... Talking about "automatic" washer dryer.. I agree. Lies, all lies... and they should make a folder.. and a put-away-er....and then .. I have this "non cooking sink"...I put something frozen in it in the am and it is still not cooked at dinner time.. What the heck? My husbands...
  10. Rhonda J

    Palliative Care

    My understanding of palliative care is comfort care...usually done by hospice. My husband is not in the final stages diagnosed in 09...says he will live to be 100...he has hospice care because his Dr. said he could get things you need faster.. they aren't just for end of life.. it is to make the...
  11. Rhonda J

    Traveling

    We have traveled quite a few places since my husband is in the wheelchair. The chain hotels are usually very good for room size.... we have to take the stand assist lift and it helps me get him in and out of bed..but the problem I have with hotels that even are accessible.. the beds sit on a...
  12. Rhonda J

    Hard questions

    Hello.. my husband went to numerous Dr's as his Neurologist at Wright Patterson AFB Fairborn Ohio, wanted a 2nd and 3rd opinion.. we went to one in Centerville, Ohio that.. (and I am not even kidding).. whatever poster was on the back of the door that day.. that's what he had...finally he got...
  13. Rhonda J

    Saliva drugs

    Hello.. my husband is 5 years in this... he takes Robinal for drooling.. he said one of the side effects is it dries up the bottom side too.. meaning constipation. he also gets Botox 3-4 times a year in the salivary glands...
  14. Rhonda J

    Pity Party coming on!

    Good morning ... Well.. one big drama..GONE! Gave the dog to another veteran that has 2 others... WHEW! feel better today! I got up and didn't have to worry about what he tore up and took outside. So you are talking food...my husband can still eat, I do have to cut his food up.. but he loves...
  15. Rhonda J

    PLS and VA Disability #2......

    Hello Andy... My husband was diagnosed with ALS in 2009.. he is a Retired Vet of AF. His neurologist at the base (and the VA) diagnosed him with ALS as opposed to PLS because PLS is not service connected. He gets more benefits with that diagnosis (my husband says it is PLS because the disease...
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