Recent content by pfd161

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    Lost my Sharon.....😪

    Dee Dee thank you for your words. So kind of you.
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    Lost my Sharon.....😪

    Thank you all ❤
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    Lost my Sharon.....😪

    She died at a hospice house Thursday night. I'm so sad and mad at ALS. She had dropped a lot of weight and stopped eating/drinking day before Thanksgiving. She lived 8 days. Diagnosed 1/19. Beyond heartbroken. Dennis
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    Time for a wheelchair?

    Thanks Nikki... I think she could transfer her with a hoyer. MGH is on board with starting the process for a chair. For now we have a transport chair that she could sit in... Mostly I have her sit on her rollator walker. thanks for the response. Dennis
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    Time for a wheelchair?

    So my PALS is my partner. She was diagnosed in January and is going down hill fast. She needs assistance with her rollator walker and without her foot drop braces on she is very slow and to be honest it feels dangerous. At some point soon we will be needing a wheelchair. Her doctor is on...
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    The journey continues... 8 months in.. Couple? 's

    Sharon was diagnosed officially in January. She has the C9 abnormality. Her dad developed FTD 3 years ago so that led the team to genetic testing. Her 2 brothers have decided not to get tested, which I'm conflicted about as they have children. I think I would want to know but it's one...
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    One week since diagnosis...

    My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation. The first few days were spent crying/ holding her. She now...
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    Girlfriend diagnosed yesterday...

    Thanks everyone... Nikki thanks for the PM...it's gone now I can't see it. I'm sure as I post more i will be able to privately message. We don't have the Doctors name yet at MGH....I just know it's a very long name.... How do we deal with this terrible news? Do I seek counseling for her and...
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    Girlfriend diagnosed yesterday...

    I've known in my heart that this was als. 1 year ago she and I were snowmobiling. Symptoms first started around June. She needs help getting into my truck now, has slurred speech. And can not swallow a pill, but she can't open the pill bottle anyhow. We are referred to mass general. I...
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    Scared and sad...

    Emg was abnormal. He referred her to mass general... Didn't outright tell her she has it but on her paperwork motor neuron disease is the diagnosis. Im lost.
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    Scared and sad...

    Tomorrow is the testing. I thought it was just a ncs but the paperwork she got said emgs. So I think we should have answers tomorrow. The neurologist rescheduled it earlier so he could do the test himself. Praying!
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    Scared and sad...

    Thank you all... i will keep you guys updated. It's nice to have some support finally. God Bless. Dennis
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    Scared and sad...

    First off, thanks to everyone on these forums. I have been visiting a bit as I'm quite convinced my girlfriend of 10 years has developed this terrible disease. A year ago today we were on our snowmobiles in northern Maine... it seems impossible that we are where we are right now. Sharon...
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