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www.justanswer.com/neurology/80niz-husband-58-mental-changes-affected-work-6-13.html?al=1 Dr Sathyashankar Subbanna is who I had emailed with about my husband having FTD dx on Jan 2014. I just wanted to do a follow up for him that my husband is continuing to get progressively worse. He was dx as behavioral FTD but also aphasic. He doesn't talk now but does repeat a few words that I say. He is incontinent so wearing attends all the time since April 2015. Otherwise about the same as is still walking the mall with the caregiver, he doesn't know the date, month, year. Can not manage with out me for his AM cares, food, toileting, etc. You suggested to try citicoline (brand SWANSON's Cognizin Citicoline) and he takes 2 tabs a day and I have seen a bit of emotional changes in him only. I have kept him on the other supplements NAC, acetyl L-carnitinine, Alpha lipoic acid, phosphatidylcholine, phosphatidylserine. The neurologist said that it doesn't hurt to have him on these but it is a waste of money. I just wanted to let you that it does seem to help. Now we do have some worse days than others but I will continue to use these supplements, concerned he could be continually worse without. He has had 2 positive beryllium testings, which was done from the the US Dept of Labor. He did not work directly with beryllium but was exposed to it when working for the DOE. Usually the effects seen with beryllium is respiratory which he has not had. He is now having a couple wks of what I am calling Sundowners. Anything he can take so that he sleeps at night? I am a RN and know that some sleeping pills can cause more confusion. I have tried 25mg of Benadryl which did help until lately. The neurologist at Loyola let us try Exelon patch which I did not see any help from. His sister did get some help for a couple yrs from it so we thought we could try it. His sister has the dx of AD. Thank you for all the help mid 2013 to 2014.
I was hoping I could get this to Dr Subbanna, a neurologist in NY incase he has other pts with FTD to try it as I do think the citicoline did help a bit. With this disease everything that shows a bit of help is worth it. (I have been corresponding with a neurologist in past)