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Showing Visitor Messages 1 to 10 of 17
  1. twinmommie72
    07-07-2011 07:53 PM - permalink
    I am thinking of you and wanted to thank you for being so strong. What a treasure you are. I got my diagnosis last year, and I believe it was you all I saw waiting to see Dr. Bedlack in an exam room when I passed by. That was the day he walked in with his purple skin tight suit and black bag, then without pause he branded me with those 3 letters. I closed my eyes and wanted to run in each exam room and hug everyone. I should have...
    Please accept all my hugs and love. You all will be in my heart forever. xoxo
  2. joni51
    06-22-2011 08:48 PM - permalink
    Stephanie checking in to see how things are going, I remember the long days after my first husband passed away. I have already lived through losing one husband so if you ever need to talk just please let me know..
  3. loralie
    06-14-2011 09:20 PM - permalink
    It was exciting to see you and a couple of others on here who have spouses with both ALS and FTD. I don't get on here very often but I'm always impressed by what an informative, loving forum it is ... people bonded together because of illness, hope, determination, fear ... The combination of ALS and FTD makes this an even more unique/lonely experience. As you say, every case is so different. I would be so interested in communicating about this combination disease (or this same disease with a different strand ...). thanks for your posts.
  4. SCarolinaDeborah
    06-11-2011 07:22 PM - permalink
    i tried to send a yahoo message to al not sure if he will get it or not
    my email is would you mind trying to email me again.
  5. SCarolinaDeborah
    06-09-2011 12:36 PM - permalink
    Can u email me at ljpmns @ and I will give u my address
  6. Chase_Corin
    05-17-2011 12:20 PM - permalink
    I called out the program director of Walton and Johnson about deleating our comments and banning us from the facebook site. He has yet to get back to me about this.
  7. jtryhorn
    05-16-2011 11:02 AM - permalink
    Well, dad refused all treatment at first. Now he'll accept some. He's refusing and MRI but is accepting a CT scan but that will take a few weeks.
    Now also he's going to an assessment at a clinic for all the testing but that will take months before he can even be seen. And he's so stubborn he'll probably walk out halfway through. I've been reading around the clock. It's been 9 months since his assumed stroke and Mom says he's getting worse.
    His speech is deteriorating and just his behavior is not normal. Could be vascular dementia could be FTD or primary progressive aphasia or damage to the brain stem from the actual stroke. It just feels like a bit from all diseases. The yawning is killing him. Without fail he yawns every evening and he yawns while he's sleeping sometimes too. It's making him crazy. I'll ask my mom about the twitching. the swallowing is minor my mom said, it just depends on what he's eating. Thanks for responding.
  8. Phil's wife
    05-15-2011 01:59 PM - permalink
    Phil's wife
    Oh, I didn't answer your question of did this sound like my husband's story. His ALS started as slurring and twitches on shoulder and face. We didn't think too much of it for a year or so. Doctors said it was possible to be a side effect of other medication and it progressed extremely slow at that point. The FTD started as mood changes - lack of empathy, loss of logically sound decisions off and on and forgetting words. About the time of diagnosis is when his progression began to get very fast and went to all limbs at about the same time. It is so hard to compare patients or stories too much because everyone is so different. I sure hope your dad doesn't have ALS or FTD. Both are very difficult.
  9. jtryhorn
    05-13-2011 05:48 PM - permalink
    Does this sound similar to your husbands story? It could be primary progressive aphasia or frontotemporal dementia.... I don't know. What's scared me though is the yawning and the apathy and inflexible personality and the speech issues. I'm sorry about your husband. I cannot imagine what you are going through.
  10. jtryhorn
    05-13-2011 05:47 PM - permalink
    Continued! Some words are not there and some are mispronounced. No slurring at all. This brings us to late autumn and his friends are starting to notice his speech etc... then to Christmas, he's really tired, going to bed at 7:30 pm. Now he's lost about 15lbs and that never happens. Also more than anything it's the chronic yawning. Mom says that he's so frustrated, he cries about it. then it was throat clearing and that's gone but popcorn gets stuck etc...but the yawning have never ever stopped. That's the scary part. And the rudeness and crying or laughing at weird times. Sometimes he acts like a child. But there are no muscular issues at this point. No twitching or anything. Mom cried the other day and says she know in her heart that something is really wrong. She says he gets this blank look in his eyes like he's not there. She recognizes it from when her mother went off the deep end. It's so early, it's months away from diagnosis. We are just waiting.

About Me

  • About Phil's wife
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
    If diagnosed, when was the diagnosis?
    Wake Forest
    State or Province


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  • Last Activity: 08-15-2012 07:40 PM
  • Join Date: 04-19-2010


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