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Showing Visitor Messages 1 to 10 of 46
  1. skipper66
    07-04-2015 07:59 PM - permalink
    I am so sorry to hear about Tom. You are in my thoughts and prayers, Hugs, Kim
  2. Scared321
    03-02-2015 08:19 AM - permalink
    Hello. I was wondering if I could please ask you a few questions.
  3. skipper66
    01-24-2015 06:33 PM - permalink
    Hi Nancy,
    I didn't want to hijack the thread you started called I hate this. I just wanted to send you a hug. Take care, Kim
  4. HeatherFeather
    12-12-2014 06:18 AM - permalink
    Hey Nancy - nice to hear from you! So happy you still take your Zumba lessons. I love to dance...well, not really in the mood any more - hopefully I will get back into the mood to Zumba by myself now that I've stopped teaching. LOVE salsa :D So sorry about your hubs too. yes, so different they are with your hubs starting with bulbar symptoms and mine with limb onset. Ron is starting to have breathing problems here and there - some smells choke him, heat chokes him etc. but he's sleeping soundly so far. Our next appointment at the Montreal Neurological Center is right after New Years - I betcha they are going to start him on a biPap. Well, have a beautiful day and keep Zumba-ing ;-) Heather
  5. HeatherFeather
    12-07-2014 08:08 PM - permalink
    just a little hi from me ... My hubby was diagnosed in November after starting symptoms in his left leg in June. I noticed you enjoy Zumba? I taught it for six years and stopped last April, now taking care of hubby full time. He's in a wheelchair ... Slight breathing problems except at night, and he's been losing weight since he has no appetite. Try to have him take Ensure Plus though along with what he feels like eating. Always a struggle 😞 Anyway, have a great evening ... Hope you can rest some... Huggs from Heather
  6. skipper66
    05-12-2014 05:26 PM - permalink
    Hi Nancy,
    Dad is still participating in the trial. But, he is pretty convinced that it isn't really making any difference one way or the other. He went to the clinic about a week ago and they want him to start using a bi-pap at night. One of his breathing tests was showing around a 67% but I don't know which one for sure. He still is able to eat and even though he sounds winded at times his speech is pretty clear unless he's tired. He is losing almost all use of his hands now. The kids and I are planning on going to see him the first or second week in June. Take care, Kim
  7. bigmark1954
    05-12-2014 03:53 PM - permalink
    Hi Nancy...Thanks for the note. This ALS is so different between each person, it sounds to me that Tom is mostly bulbar. I have a little more of a mixed bag....started with balance issues and foot drag about 2 years ago. Evolved to speech issues about a year my speech is so bad many can't make out what I am saying....right now I am noticing more atrophy and clonus in my arms and legs. I am in a bit of denial because I force myself to work out(weight train) 3 times per week and I do treadmill and recumbent bike for 40 minutes 6 times per is really getting progressively more difficult, but I feel like when I have to give it up...I will be done. Keep Tom golfing and hunting, with me it is riding....I feel like as long as I can keep interested in things it will keep me somewhat active. This disease takes so much away from us that it is easy to get depressed and just do nothing.
  8. affected
    05-06-2014 04:55 PM - permalink
    thank you so much Nancy for your words of support, such a beast, but he is free xxxx Katrina
  9. skipper66
    02-08-2014 11:42 PM - permalink
    Hi Nancy,
    How is Tom doing? Is he still in the trial. My dad is but we really haven't noticed any changes. But, he hasn't got any worse either. I got to go see him for a few days the first of the year. He looked pretty good. He lives at a assistant living facility about five miles from my brother's house in Dallas. It's really plush but very expensive. Thank Goodness dad gets some benefits since he's a veteran. Take care, Kim
  10. skipper66
    12-11-2013 02:00 PM - permalink
    Hi Nancy,
    How is Tom doing with the trial. Dad really hasn't noticed any difference one way or another. He is on the lowest dosage of it that he gets twice weekly. I thought he said that it was 0.7 or something like that. He goes to the clinic tomorrow for a long checkup. Take care, Kim

About Me

  • About ECpara
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
    If diagnosed, when was the diagnosis?
    State or Province
    Grandmother of 3, enjoy the beach, Zumba
    Retired para educator for special needs children
    Zumba, gardening, decorating, reading, sudoku, words with friends


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  • Last Activity: 07-31-2017 11:04 PM
  • Join Date: 01-07-2012


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