Dementia and Parkinsons: my sister who is... - Cure Parkinson's

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Dementia and Parkinsons

aloha24 profile image
15 Replies

my sister who is now 61, diagnosed 3-4 years ago is now suffering terrible memory loss and possible mild dementia. Does anyone have any experience with this? We live in Florida and does anyone know of dual diagnosis doctor? Neurologist/Psychopharmacologist? What can be done besides trying to sleep more and play brain games? Anyone?

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aloha24 profile image
aloha24
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parkie13 profile image
parkie13

What drugs is she on? Azilect made me forget things something horrible. I thought I was losing my mind.

aloha24 profile image
aloha24 in reply to parkie13

Hi, thanks for replying. Sorry took so long to answer. Well all I know for sure is Sinnemet,

some memory patch, Klonipin, etc. She's very secretive and acting more and more weird. Has car accidents. Won't let me come with her to the neurologist. Doesn't go to PT anymore.. Doesn't go to the PD center any more. She's become very bitter and mean. I am sick too and frankly I just can't take it anymore.

I've found out that up in Jacksonville Fl in the Mayo Clinic they treat all things Parkinsons and dementia. They work with family and have motels for family to stay at while the patient is undergoing testing with the team. Does she want to go? NO! I should mind my own business and stay out of her medical business. I'm very angry as you can tell. I feel like moving very far away. I feel like I'm done! I better meditate some more! Thank God for Deepak Chopra.

parkie13 profile image
parkie13 in reply to aloha24

Hi, I have no idea. Do you have another family member that can join you in trying to get your sister some help? From what you are writing your sister is also in a very bad place. All I can say I'm wishing you all the best and also all the best to your sister. If you have a specific question I will try to answer it and I'm sure everybody else on this list will try also. Life is very hard. Mary

parkie13 profile image
parkie13 in reply to parkie13

askapatient.com/mobile/view...

You can look through some of the comments about the drug and see if they match your sister's bad side effects

aloha24 profile image
aloha24 in reply to parkie13

Thanks so much.

rhyspeace12 profile image
rhyspeace12

Read the whole long subject i started here on, "How my husband improved with the VieLIght 810 "or a title something like that. My husband has Parkinson's dementia and it brought his brain back. It is a nasal devise that delivers ultra red light to the base of the brain. Just type in "VieLight 810" in this site and you will find lots of information. If you want more information from me, i will be happy to give it. Alzheimers and Parkinson's dementia are what it works best for. You can also look it up on the VieLight site that sells it.

Dee1980 profile image
Dee1980

I'll echo parkie13, kemadrin (anti-cholinergic) was most likely causing my dad's. Took him off it, and also use a vielight, he no longer has dementia.

PaulGGriffiths profile image
PaulGGriffiths

Check for gas carbon monoxide, stoves, fireplaces, central heating system etc.

Also, fresh air, so keep a fan blowing near where sitting and sleeping, and good ventilation, blow against possible close transport trafic.

I am guessing this.

Portable gas fires...

Burlingtongal profile image
Burlingtongal

I’ve started on Exelon for memory loss. It ‘s brought me back to my old self. I feel great. A part of me is wondering how long this will last. I will check out the vielight.

Cindyf profile image
Cindyf

There are many things that can be done. My hubby has pd/dementia. First off she needs a movement disorder specialist. There are good ones in Gainsville. Some Alzheimer meds work well . Diet change, low sugar, low intake of white flour. Good fats ( olive, coconut, nut oils, avacado). These aren't cures as pd is a progressive neurological disease, but we have noticed improvements. Best of luck, I will keep you in my prayers.

aloha24 profile image
aloha24 in reply to Cindyf

Thanks cindy

It may be Lewy Body Dementia. mayoclinic.org/diseases-con...

aloha24 profile image
aloha24 in reply to

That was one thing that thank God was ruled out. Thanks

NancyJHP profile image
NancyJHP in reply to aloha24

How did they rule out Lewy Body Dementia? My memory loss is pretty severe and I'm only 52.

brills profile image
brills in reply to NancyJHP

Our PWP was diagnosed with Lewy Body dementia - as "probable" . The diagnostic criteria for probable DLB require:

The presence of dementia

At least two of three core features:

fluctuating attention and concentration,

recurrent well-formed visual hallucinations, and

spontaneous parkinsonian motor signs.

Suggestive clinical features include:

Rapid eye movement (REM) sleep behavior disorder

Severe neuroleptic sensitivity

Low dopamine transporter uptake in basal ganglia demonstrated by SPECT or PET imaging

In the absence of two core features, the diagnosis of probable DLB can also be made if dementia plus at least one suggestive feature is present with one core feature.

Possible DLB can be diagnosed with the presence of dementia plus one core or suggestive feature.

This comes from the website - lbda.org/content/dlb-and-pd... ...

I often think the meds could increase dementia - seems like it's only worsened since we got on them..but that's my opinion. Hope this is a good resource for you!

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