Katie C

Katie, my husband almost died because he was choking on bacon. He vowed never to do such a thing again. I told him we would Vitamix everything, except the melt in the mouth candies or shakes. He was fine with that and grateful to be alive. Now he has choked on soup that I Vitamixed and I told him that was it and he need to tube feed only. He sat down and wanted cream puffs. He was not joking. If I don't give him what he wants he becomes so angry and it affects my son badly. He can still walk, so that is a problem. He can barely talk so that we can understand him, but he DOES make himself understood if he wants you to know what he' talking about for sure! He still seems to be there and he's very, very smart. Maybe he has mild FTD? I know FTD has nothing to do with intelligence, but his decision making skills seem intact, except for eating and empathy for me, my son, his best friend and perhaps my family that help us from time to time.

No you went on to post how my mother was able to respond and stuff you know nothing about.If your responses include my name in them or the mention of my mother then YES it is going to bother me so stop now. You post whatever you want about your dementia or Connies but when it comes to me and my mother stay away period. I dont want nor need your unprofessional opinion of anything. You didn't work with it long enough to claim to know as much as you do especially regarding my mother that makes me angry. And I have every right to be.

Fortunatly not all PALS is going to have dementia as you post. This is the second time you have done this, first time was on my post saying my mom was home and now on this post. You don't know my mom's history, to know what all has occurred so stop stating what my mom is or isn't because you haven't a clue and it really hits a nerve with me for you to assume the crap you do. Had this woman of posted the second comment first I may not have responded and I know not responded in the way I did. Mike also responded, saying it was only 12 weeks into it. A doctor can not dx dementia in passing nor can you in a thread on the internet.

Katie
I want to thank you for your later post. It never occured to me or more so I did not want to acknowldge it that I will have to make many decisions for him, some even now. Thank you for letting me hear that and even with tears know in my heart I will do what is best for him and according to his wishes that he had talked about all through our time together not just since this ALS mess.
In the mean time I just look forward to his giggle burst since he has the sweetest laugh, and do things one little bit at a time. I am calling the Pallative group tomorrow afternoon after a funeral for my great aunt who passed away a week ago at 101.5 yrs old and sharp as a tack.. I decided to do a journal of this ALS but the start of the journal is going to be about how me met and all the wonderful things about him....
Thanks again....
Connie

katie
I wanted to personally thank you for your response. I did have a hard time with Dian na's response. Just can't say more than Thank you so much,,

OK Thanks!

HI
You don't know me, but I've read many, many of your posts. You offer so much support to those here despite your own recent loss. That shows your caring nature and empathy. There is no doubt your decision with Glen was the right decision for you both. I hope my post didn't seem to imply otherwise

Just tried to find you on fb. No luck. NEVERMIND.

The most frustrating & almost hardest thIng is when he demands something when it's time to put boys to bed. Here it is 9:15pm, their bedtime is 8 but they are usually up until 8:30. All three are still awake.

Thank you for your message- it was very helpful. Sad but helpful.

Hi there. I believe my PALS has FTD- he often has the blank stares, the grins- well I call them smirks- URGH. The more frustrated I become the more he smirks & eventually laughs. Did your PALS have a difficult time making decisions? Esp. When there were a lot of choices? Were there other symptoms that lead dr. to diagnosis FTD? Thank you! Ernesta

Katie, am hoping you can give me advice. Physical demands of ALS are nothing compared to dealing with the FTD. yesterday/today are perfect examples. I was so upset. Took a prescription pill for anxiety. It conked me out. My husband came to the bedroom twice. Both times he needed his tube feedings. Claimed it was to check on me. Today told him if he wanted to check on me, to bring me a cup of tea. The cup & tea were on the counter and all he had to do was get ice from dispenser in fridge door & pour tea. these things he can do. there is no cup of tea. claimed he forgot because he was thinking about the OT visit. I cry for hours. he just looks at me with blank stare and/or a stupid grin. he seems to be enjoying the pain he is putting me through. Needs total care and it's becoming so hard for me. There are times when I would like to pound some sense into him. Talking changes nothing. does this get worse or does it stay pretty steady through the progression?
Thanks,
Janis

Hi Katie,
I've asked you a couple of questions under the, "FTD or depression?" thread, but it went straight to moderation. I'm just trying to give you the heads up cuz your online right now, and may not see it later. Thanks,
Laura

Hi Katie,
I would love to have a phone conversation with you sometime. My phone number is 650-851-2245. My husband David was diagnosed in 2008 and I live close to you in Portola Valley. Bev

I will do that! I was so impressed with his demeanor and how much time he spent with my husband and I. We live about 2 hours away from Hayward, so wish he was closer to us. Especially for the support groups.