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Feeling down - I am so angry with EVERYTHING! I feel so bad - Jim is having a hard time and I feel angry with him. He is saying he is having problems opening and closing his eyes (okay not angry on that one.) He is back to getting up several times a night - but having problems getting in and...

Tonight Jim came down stairs and our six year old was crying. I asked him why she was crying (he was just up there) he said no reason. Minutes later she came downstairs crying - daddy kicked her in the face (she is sleeping in a tent in the living room.) When I asked what happened he said she...

Had a good day today. Jim was a bit wiped out - he spent most of the day alone with the kids yesterday due to a sleep study that I had (which went awful - another story all together!) Despite both being tired we went to a friends childrens bday party. I met her less then 1 yr ago in the PTA...

Just wanted to share a happy story! Yesterday we celebrated Jim's 40th birthday (His actual Bday is tomorrow.) This was a day I was told he probably wouldn't make it to! (He was diagnosed with FTD and MND 7/2/09, with ALS 12/7/09 - we were told average life expectancy is 18-36 months - here we...

Hello everybody - I am hoping you can help us out by sending a quick email! For Christmas I got Jim tickets to see Jeff Dunham - the ventriloquist comic. He is one of Jim's favorites. He still laughs at him - something VERY rare! I would like to try to get Jeff to meet Jim at the show. Can...

I apologize - it has been so long since I last have been on here I almost forgot how to post! Life has been a lot of the same old same old. Jim is progressing slowly, though some of his ALS symtoms have been coming up. He has lost weight yet again. His breathing is stable but he has lost a lot...

Just wondering if anyone from here was attending the ALS advocacy event in DC next weekend?

Hello Everybody ~~ I have been lurking in and out of the forum lately - just wanted to check in. The last couple weeks I have finally committed to our next big change - separate bedrooms. It has been an idea I have been chewing on for months - even buying myself a new comforter on Black...

Jim went for his tilt table test - which was of course abnormal. He does have ortheostatic hypertension (he is hypertensive when lying down and hypotensive when standing up.) And the tests showed he has autonomic neuropathy. The neuro had suspected this before sending him for the test and had...

Jim has been having what he calls really bad mornings. He is really shaky, kinda dizzy and all around "cloudy." Though these symptoms decrease during the day and he can have them throughout the day he is having the worse time during the morning. We have been tring to hydrate him, give him...