if i as a caregiver have concerns that my... - Cure Parkinson's

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if i as a caregiver have concerns that my partner is showing signs for LBD should the gps do somethink about it

leepursall profile image
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befor my partner was dx i spent many years telling gps and neuros that sue was acting very strange which was getting worse she changed personalities in so many ways could,nt control moneythe neuro,s said it looked differant to pd now i,m asking the question on LBD they told me to put it on the back burner for now , for the first 2 years after her dx she was on requip and she went even worse what should i do

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leepursall
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alllowercase profile image
alllowercase

I'm not usually into giving advice about things of this importance, but I have had that kind of treatment from medical professionals in the past, and I have always found it pays to insist that your GP refers you for a second opinion. If he will not, then it is probably due to lack of money with your Primary Care Trust. But I have "offered" to transfer to another GP more than once. It has always worked for me, probably because they are paid considerably more for patients like us under Government rules, and that is just for having us on his list. They also get enhanced pay every time they treat us.

Do you live anywhere in travelling distance of University College London Hospitals in London? That's where I go (I was there yesterday for my 6 monthly MOT

Good luck

Adrian

I suspect that the Doctors are unable to make a proper Diagnosis, because I think there are no tests as such they can do.

I think they usually decide it is Lewy Body Dementia after a few years when it can be seen as fairly distinct from just Altzheimers/Parkinsons. But still suspect that diagnosis will be a lot of guess work.

The treatment they give with PD drugs can often have bad side effects, and so they might prescribe drugs used in severe mental conditions which again can cause disastrous side effects. I think the diagnosis of LBD is purely circumstantial on evidence, and a clever neurologist who has seen the condition previously and is well up on it's progression.

My Best wishes to you both

wifeofparky profile image
wifeofparky

A friend's MIL shows signs of Lewy Body Dementia and their Movement Disorder Specialist put her on the Exelon patch. This has helped a lot.

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