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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.

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TRox, I think you’ll find it useful to read up on Lewy. A lot of articles will be out of the UK as the Lewy groups are way more organized and active across the pond. The US tends to be all abt Alzheimer’s even tho a Lewy is the 2nd most common type of dementia. Lewy & Parkinsons seem to dovetail so lots of what out there for Lewy will also hold tru for Park.

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?
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She already suffers from constipation and neurologist is aware of it, so maybe this is why he did not order it. I found an untouched bottle with reglan in her med cabinet that another MD prescribed for her last year but I have not offered it to her because I have not been able to ask neurologist first. I will ask about comparing, thank you very much.
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I agree, the meds used to help with cognitively will not work after a period of time. If they are causing problems then discontinue them. All they do is prolong they don't cure. Dementia goes hand in hand with Parkinsons.
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My mom was on the patch. To me, if it’s not being used really really consistently, in both timing and placements, the side effects like nausea just won’t settle down. It was this part of “medication management” that was a part of the reasons for my mom to move out of IL & onto needing skilled care. Mom would either not use it (I forgot!) or would place it and then move it to another spot as it was itchy/sticky/you could see it thru her blouse…. Nursing staff put it on her backside and w in 4 weeks of consistently using it, no more side effects and her cognition was better.

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.
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TRoxannaM7437 Jun 2021
Hello. With my mom it was exactly like flipping a switch which is probably why I was thrown so off balance, I thought it would be very gradual as neurologist just mentioned she could have memory issues, almost as an after thought and this had not been so pronounced, or maybe I didn't see it as I was the primary caregiver for her husband until he passed as well. I try to be as consisten with the timing of placement. I did forget to put it on her one day and had near a panic attack when I remembered, so now her routine is like this: she got the 1st one at 10 am after it was picked from pharmacy, we wait until she wakes up, has breakfast and showers to put the new one on between 10 and 1030 am, Should I place it earlier than this?, or would it be more helpful to not have a 30 minute window and do it always at 10 am?, I pick a different spot on her back only, because I noticed if it is within her reach in the front she will scratch it off. I quit my job and moved with her, so I can help her with everything right now since I am on summer brake, once I start clases in august, I have hired someone to be with her for those hrs, she understands that the timing of the meds is very important and will help with playing board games/cards, cooking for her and doing some exercises the speech therapist left her, the lady stated she would be willing to walk with her and take her on outings if well enough and approved by MD. I will also be installing cameras in the house to monitor her thru the day for my peace of mind. I did speak to my 2 siblings regarding placement for her, one does not help at all, the other helps as much as he is able to, which is not much considering we are not even on the same country, but they still want to know, and I just cannot emotionally handle her moving to a facility full time, I am looking into probably an adult daycare, might they allow her a companion.
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.
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Since this isn't a life saving medication I would seriously consider discontinuing it, daily stomach upset and nausea are miserable side effects to have to live with, especially for limited benefit. When you see the neurologist you can ask about trying a different medication.
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TRoxannaM7437 Jun 2021
Yes she is very miserable, and I will ask MD on next appointment as I am also concerned that she will start loosing weight again, because she is starting to either skip meals stating she is not hungry or eating less a than half as to not upset her stomach. So now I am giving her 20 cc megace with lunch again. It had been approved by neurologist, she just stopped taking it, and today she look at me with a pouting face worthy of my 7 year old nephew and stated "now I am hungry again because you gave me that thing". I just had to laugh because I felt the tables had turn and she is the child and I am the mother, which I am so not cut out for.
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Dementia symptoms can be a complication of Parkinson's. According to drugs,com, long term use of Nexium can cause a vitamin B12 deficiency. Lack of B12, by itself, can cause dementia symptoms. The site also lists vomiting as a side effect of the Exelon patch. The other two commonly prescribed dementia drugs, Aricept and Namenda, also have their own side effects. All of the dementia drugs only have a temporary benefit, if any. You might speak to both the GI dr and the neurologist regarding the use of your mom's meds. Could both treatments actually be contributing to her problems? You say some of her meds sit on the counter for weeks, what does she experience when she doesn't take the meds?
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TRoxannaM7437 Jun 2021
I did not know that of Nexium, she has been taking it on and off for a few months now, some days she refuses it. I will try to get an appointment runner than the one for September with GI and ask if they can at least have her labs checked. Thank you very much.
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There is a prescription anti-emetic pill that dissolves under the tongue (Ondansetron aka Zofran) and it works well. I'm surprised her doc did not suggest this but maybe there was a reason.
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Midkid58 Jun 2021
Zofran is noted for its ability to cause severe consitpation. So--seems most drugs that help with nausea also cause constipation. Perhaps Compazine? That seemed better for me when I was doing chemo.

Sorry--it's a trial and error thing, isn't it?
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