Recent content by hangingon1

  1. hangingon1

    Do all ALS people have to get a PEG?

    I went through this last year with my late wife. No one can empathize with you like someone who has been there. It was by far the hardest thing I have ever been through. My heart and prayers go out to you.
  2. hangingon1

    Getting Dressed

    I can only tell you of my experience with my wife, who was diagnosed in 08 and died last year. She started dropping objects in 08 and her writing got almost illegible. This led to the diagnoses. By the end of 10 she was increasingly having trouble getting dressed and got stranded several times...
  3. hangingon1

    My angel's suffering has ended

    I empathize with you since my wife died of ALS August of 12. I too could not sleep for awhile. It will take awhile to get your bearings back, so do not rush it. God be with you in your new life.
  4. hangingon1

    My love is gone and now my suffering begins......

    I went through the same thing last August. It has been a year since my wife of 39 years passed on. A year filled with pain, but with hope also. I keep thinking of seeing her paralyzed and now she is free. That is about all that gets me through. It has been one of the hardest things I have ever...
  5. hangingon1

    what to do with my arms while sleeping

    My wife had a similar problem. I know that pillows helped and changing positions helped. She wore one of those finger separators that eased her also.
  6. hangingon1

    Totally different person

    Maria, I so identify with your predicament. I felt also that I lost my wife at least a year before she died. She would watch tv with this dull look on her face, when at one time she would be quite animated. Was very testy and totally a slave to OCD. Said things to me she never would have had she...
  7. hangingon1

    Choosing not to get feeeding tube?

    My wife declined, and she really did herself and me a favor. She could have been trapped in a lifeless body for a lot longer. As it was she was almost 70 and had enjoyed a good life before ALS. She was brave and wanted to be with the Lord and free of this monster. She was a rock of faith and...
  8. hangingon1

    Frontaltemporal Dementia

    Your express it very well. Exactly what I endured for almost two years. So frustrating. No one knows until they do it.
  9. hangingon1

    Like a HUGE smack in the face all over again

    The doctor gave my wife 2 to 5 yrs. she went in 3. I do not see knee replacement as a viable option to him If he is bedridden with ALS (and most people are in time)what good would better knees be? Do not put him through such pain and temporary gain for long term futility.
  10. hangingon1

    Anger and ALS

    I empathize with you so much. My wife, before ALS never showed a mean bone in her body. After she got it, her whole personality changed. It was not because she was bitter with the disease, it was because the disease had affected her frontal lobe. For years, Als was though to only affect the...
  11. hangingon1

    Diagnosed-how to tell my kids?!

    I am so sorry for your sorrow. I would always interject hope with children. Tell them that there could be a cure soon. Some of the smartest people are working to make that happen. It has been a mammoth task. Act as normal as possible, of not for them, for your caregiver. I took care of my lovely...
  12. hangingon1

    Miracle cure for bedsores or ulcers

    Being a pharmacist, I was skeptical about finding a product that would heal some quite deep ulcers on my legs. I was worried enough to order it. The product is Terrasil. Can be ordered on the net. Within a couple of days, my deep ulcer had stopped weeping. withing 10 days, it was healed. I do...
  13. hangingon1

    Father ALS with FTD Caregiving dilemma

    Hospice was a lifesaver for me when my wife became totally paralyzed. I hope he has good insurance, she had medicare. They came daily to clean and all of her diapers, and prescriptions and checkups were covered. She did not last long, 9 months, after she became bedridden. I suggest Hospice for...
  14. hangingon1

    Mum ready to die... how do I let her go?

    Some people handle adversity better than others. ALS is such a monster, that it really puts you through the ringer.The fact that it lingers so long wears you out. The fact that at times you have hopes dash wears you out. The fact that no matter what you do,your loved one is on the slippery slope...
  15. hangingon1

    Concerned that I might have ALS, or another motor neuron disorder

    ALS affects very few people,about 30K a yr. in the US.It is so horrid a disease that it gets a lot of attention. Your odds of having it are smaller than being struck by lightning. It takes a lot even to diagnose it. I would not worry.