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After years of misdiagnosis and living hell about five weeks ago a team of great doctors came up with a final diagnosis of Frontal Lobe Dementia with Parkinson like behaviors. He was started on memory patch and the change is unbelievable. How long does this last before disease takes over?

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Is it the Excelon patch? If so, my mom was on it. She had Lewy Body Dementia. Diagnosed and tested over years at gerontology dept within a university / medical school teaching hospital system. Lewy & Parkinson’s have cross overs in behaviors. I was under the impression that Excelon was / is more about helpIng keeping the Parkinson’s / Lewy symptoms at bay rather than the FLD.

My experience is it helps extends them to be more cognitive and competent for 2 maybe 3 years. Kinda depends on what phase they were in when finally diagnosed & Excelon started. My mom was probably edge of phase 1 or start of phase 2 Lewy when she went on it. She still had hallucinations (animals but not threatening), but for her changes in lighting helped immeasurably to decrease these.

Enjoy each day. Try to really get on a pretty exacting routine too as it imho does help them stay on autopilot once Excelon can’t help.

As an aside on this, application of the patch can be considered to be “skilled nursing care”. It’s like prescriptions that need to be daily compounded to be taken. These are higher levels of care that require skill to be done. It’s more than just needing “medication management”. Needing medication management in & of itself doesn’t make them “at need” for LTC in a NH. Something to keep in mind should his care needs get to be beyond your capabilities.
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PandabearAUS Apr 3, 2019
Thanks for your answer. It is the Exelon patch 10. He responded very well very quickly to the 5. He has frontal lobe with parkinisms so being treated on both fronts the strange thing is now that he is more switched on and communicating all the weird logic is coming out
his elder psych will see him in 4 weeks and if he is going well will be able to go see his mother (91) and visit our old friends. He is 63. He was clearly mid range when we finally got it sorted. Want to try and do some things before it returns. He was on the cusp of respite then permanent care before this breakthrough. Great team of highly experienced and caring doctors
hopefully by the time it returns he will be over 65 and access to care will be so much easier
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Just enjoy the change and cherish every moment of sanity while you can. The disease does not punch a time clock. It is on IT's schedule and could lst a few days or a several years.
As with most of those meds, it may just slow the progress until the disease gets too bad and will eventually take the life of your loved one.
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I am bumping you up. Someone will answer your question.
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