epkennedy

Hello friend. Sorry you are here, but happy to share the journey with you. I hope you are having a good day.

Happy Labor Day Ernesta! I hope your day is peaceful.
Take care Toots!
Marta

Yep. Tobii. The Tampa VA SCI Clinic showed us several types, and Krissy selected Tobii. Forbes Rehab Service shipped it to us along with a bunch of home controller stuff. Then a tech showed up and attached it to the TV, radio, front door, bed, etc. It's a souped on Windows computer, with speaking software, so it can talk, email, go on the internet, etc.

In regards to itching, my husband takes Gabapentin (Neurontin) He only take 1 - 300 mg tab a day.

I don't even begin to know how you do it with youngsters! It was hard enough with my adult son here to help me! Honestly... I learned to just say no. Did it make him angry? Yeah.. but ya know what... they're going to get angry about something anyway! You have to remember that it's ok to take care of yourself and the boys too! So if he demands something it's ok to say "I'm putting the boys to bed now. I will take care of that next." Make sure you've "baby-proofed" the house so he can't do anything dangerous and then just let him wait.

I was also going to tell you.. feel free to e-mail me or contact me on facebook.. sometimes this forum messaging can get a little hard to deal with. E-mail is: [email protected] Facebook: katie mclaughlin campagna

Hope your day goes smoothly.
Katie

Yeah... I understand the "sad but..." part. But I've come to accept that there's just no easy way to get the information out there. I remember kind of breaking down while talking to my son when I finally accepted that "real Glen" just wasn't coming back to us. That was at least a year before Glen died. Sigh.

Oh, Ernesta... sounds like you may indeed be facing FTD. Yes.. they ARE smirks.. hugely annoying! If you go to webMD and look up "dementia with ALS" they have a wonderful article with common behavior. Decision making (or "executive behavior") is hugely effected. Ranging from poor financial decisions (Glen had maxed all of our credit cards because he was making the minimum payment every month when we thought he was paying them!) to putting food in his mouth WHILE he was choking!

Glen's dementia was pretty advanced by the time he was diagnosed, and the doctor picked up on things like Glen looking to me to answer questions. You can always try to mention it to your neuro when your husband is out of earshot.

Good luck... and please keep in touch!
Katie

So sorry I have not talked to you before. I hate that you have so much to deal with! I am sure you feel torn in all directions. Just do what you can, sorry the kids are so little too, at least my kids are grown.:0

You are very welcome, ep! I was teaching my husband, and had earlier taught my father so it dawned on me that there might be a need. I hope your husband and you are finding a lot of support here, and welcome to the community/forum--a bit backwards, I realize. The caregivers here have so much experience to share. Hugs, Ann

Oooo! Thanks. I shall, indeed, look into more benefits. As this thing gets worse, we're gonna need more support. Do you know how to handle the "itching" problem? I can only think that I should require the family to all sit together all evening so we can take turns scratching her.

Sleep well and pleasant dreams!