Hello. My mom was diagnosed with Parkinson's last February. She also showed evidence of white matter disease on her MRI. She stated "it might cause some memory problems down the line" but did not mention dementia. At the time my mom's memory was not so affected. Lately she has deteriorated cognitively so much that her neurologist prescribed rivastigmine pill twice a day, it had to be changed to the patch because of severe abdominal pain, she has a hx of chronic gastritis so took her GI doc who stated it was due to the new med, neurologist changed to patch. Her main issue now is the nausea, usually very early in the mornings but occasionally also in the afternoon. She refuses the meds ordered by gastro (pepcid nexium & carafate) as states they cause constipation. I have tried ginger ale and saltine crackers which helped for a while. I don't know how else to help her with the nausea. Getting a hold of the neurologist until next appointment is very difficult, they have an answering machine and never call back. Over the past couple of months she has become very distrustful of new meds and they can be sitting in the counter for weeks before I can get her to try them as ordered.
Sorry--it's a trial and error thing, isn't it?
My Mom probably had Lewy Body Dementia, she had a lot of testing done as part of a geriatric study, her “executive function” ability seemed to point to her dementia being Lewy. For Lewy, Execelon seems to be the RX to use as Aricept & Namendia seem of no effect for Lewy. For her Excelon was great for beginning & middle stages as she stayed pretty perky and cognitive for longer than anyone expected. She did have the Lewy shuffle and visual distortions that accompany Lewy & seem to be part of Parkinson’s as well as they affect same part of the brain. But after a certain point, the patch made zero difference. It wasn’t a slow eroding either, it was as if a switch flipped and she was less “there” cognitively.
If you cannot be there to make sure she is using the patch and taking all her meds as directed, and you can’t rely on her to do this, your choices are stark…. either you hire someone to come by for medication management or she goes into a facility that will do this OR she goes off all her medications (& some she may need to be weaned off of). Id be concerned that she will in a panic (as your coming by and she knows your gonna look at those pill bottles) take 2 days of meds or hides pills so you think she’s taking them. My mom did both, it was what it was. Medication management is a big reason why they need a facility.
You mentioned LB dementia. I am new to Parkinson's and dementia, does it make a difference with kind regarding treatment?, we were never given a precise dx, MD just stared with echelon and stated would changed to 2 other meds that are given at the same time if not working. She also went in for a "memory test" that was very long last month, I am waiting to ask on the 21st as I was to allowed in at the time and she only remembered they asked her a lot of questions.
I think your approaching the dosage time right. IMO It’s all abt doing it consistently and in a way that she expects it to happen & kinda cooperates. Yeah they love pulling the patch off. So it’s good you’ve got it on her back.
on the “light switch off, here’s my totally not a MD take, I think it’s tied into a section of the dementia causing plaque on their brain breaking off. It giggles thier brain and something gets broken… that switch turns off. For my mom a noticeable loss of cognition was followed by a TIA (transient ischemic attack). Like within couple of days. On retrospect, mom likely had a couple of TIAs when still in IL but mild and she rested a day or two and bounced back just a bit of confusion but then recollected. When she went into a NH (she bypassed AL stay), she supposedly had like 3 TIAs in her first NH and each time there was noticeable confusion / memory issues prior. Each TIA meant a run to the ER and then an observation of a day or so at the hospital then back to the NH. I moved her to another NH in her first year due to this plus some horrendous bookkeeping issues and loss of SW & activities director. But I digress, each time a TIA happened her cognition decreased & it was noticeable. Her second NH did NOT take the ER run approach but instead gave her extra fluids & electrolytes and put a schrim on the curtains so loads less light and she was up and going to meals after a day or two. Those ER / hospital runs were stressful.
Lewy seems to have visual / spatial issues, more than Alz. so how light is makes a difference. Clear even light is better than bright light as less shadows.
is your mom doing the Lewy shuffle? Like she walks with her feet flat or more planted on the ground. Rather than doing a full range of motion knee movement.
I’ve got to ask, the TRoxanne, r u a Mark Bolan fan?