Lewy Body Dementia


#1

Been dx with parky since june  2014 symptoms 5 years priore to dx have had memory assessment today and it seems like i have lewy body dementia to add to the list ,

It seems at 58 this is quite rare so would like to hear from anyone in the same boat , i am reading all the info about it but as part of the problem is understanding new tecnical info it dose not sink in so any first hand acounts would be usefull, So far most pd meds only work for a short time and not any good at all for the cognative problems ,

      Live  well   Cc


#2

 

not got this but wanted to say really sorry to hear your news.     so hard.      

i hope someone else can answer with better words for it all. 

I don't know much but think some people with DLB have used cholinesterase inhibitors,( rivastigmine, donezipil, galantamine, might not have the spelling right).  helped some with the cognitive problems, sleep, hallucinations and shifts in consciousness through the day. I haven't looked if these are licenced and OK'd by NICE for DLB but not very expensive drugs, and some doctors are happy to try something that could help.  

Think Memantine (NMDA antagonist?) helped some people with DLB with some of the cognitive problems.

 

I hope you can find something good CC 

 

 

 

 

 


#3

Thanks for the reply Rhubarb

The doctor at the memory clinic did mention differant drugs but thay all have an effect on the hart, slowing the hart beat mainly , and as i have a hart problem thay have to check with the cardeiolagest before i take them ,

Bit of a catch 22 really

 Thanks again   live well     Cc


#4

Hi cc really sorry to hear your news . I know I'm only a forum friend but im thinkIng about you .An added blow . I hope someone replys soon thats in a similar positIon as that will help .I do recall previous posts on here - try the search button at top of page and put in dementia . You may have to search through previous posts but you may well find an old thread you can bring up on forum or be able to private message someone…

Google dementia support for your area . I know for my area their is a lot of support for the person with the illness and their family . I'm sure you would meet people In similar positIon that You could talk to.

Can PUK advise ?

None Of us know what the future holds CC. They have never Invested as much time and money into this area of research as they are now . Hopefully they Will find a drug to suit You and Your heart problem to slow progressIon.

Just a thought - may be worth looking at alternatve meds too .Meds like Ginkgo biloba - improves memory may help treat dementia according to some studies

Very best wishes xx


#5

 

Hi Cc

I was quite saddened to hear your news, I don't know much about this either but I intend to look it up for reference for the future. It comes as a bit of a shock all the things you don't expect to have thrown at you when you have parkinsons, then when it happens you have to contend with it without it being fully explained to you. Hope you find what you need to know and how to hopefully 'control' it to a certain extent. 

Take care Cc, keep your chin up - Sheffy x


#6

Hi CC,

Sorry to hear this news as well. You might already know about these - on our website there's an info sheet about Lewy Body Dementia and a Q & A  that might be helpful. You can always call our helpline as well 0808 800 0303.

Best wishes,
Alethea
Digital Team


#7

CC

sorry those drugs not safe for you.   hard to be told this diagnosis, and be in limbo over treatments. I hope the docs think fast and come up with something good for you.

all best

rhubarb

 


#8

Thank you all for your support and advice ,it's a bit of a shock to be told you have it as i had just got used to the idea of having parky , 

I have been looking at the dementia sites and finding out what's in store for me and it's not looking great but hay ho thats life , and at least my symptoms now make more sense , 

All i can do now is keep busy and active n live as normal as i can ,  

Alethea one of the symptomes of lewy body is a tendancy to over react to small issues and i'm sorry if i was pedantic the other day, it's not who i am though my wife might disagree lol

anyway thanks again live well    Cc


#9

sorry to hear that cc , live life to the full


#10

Thanks gus mr green

Fully intend to do as much as i can for as long as i can then go out with a bang,before i'm a total wreck 

But thats in the future as for now i will fight with every thing i'v got 

live well   Cc


#11

Thank you CC, that's thoughtful of you to say.

Best wishes,
Alethea


#12

Hi CC

Sorry you`ve had a diagnosis of Lewey Bodies.  OH had the same diagnosis and progress of the dementia was very slow.  He was given Aricept to help with his memory and it did help.  As soon as we got the diagnosis we started making routines to help his memory eg always writing appointments etc in the diary and checking the diary every morning,keeping the diary in the same place,  putting the keys in the same place, a routine at bedtime, anything he did regularly we tried to put into some sort of order.  Later we were glad we`d done this because it definitely helped although, as I say, the dementia did progress slowly so don`t let it frighten you.  There`s lots of good times still ahead.

Hattie


#13

Hi Hatkniter

 Thanks for the tips i already write every thing down and my oh double checks i have done every thing i need to ,

Its good to see you here again and hope things are going well for you,  have often thought of you and how you were ,

The doctors are looking into what meds if any to give me as many have an effect on the hart and i have a slow hart rate and low bp , pluss i'v had 2 hart attacks so bit of a problem there.

i seem to have an emosinal detachment from my dx which is one symptom of lewy body so i'v found out so have no real fear about the whole thing , my oh has got the worst part of it as she will have to deal with whats to come,

its good to hear from you again and thanks again live well   Cc


#14

Thanks again to everyone for your support mr green

Just thought I'd update, well been off the rails a bit for a few weeks but I'm back on track now, stopped taking my meds n nearly ended up a complete wreck quickly realised I was being a bit of a tw@t and needed to pull my finger out n start getting on with life.

so I've changed my avatar for now at least ......still no drugs so avatar is ironic,,,,,,,,,,,,,,,,,, and fully intend to have fun  hee hee hee

Live well      Cc


#15

CC

i wish i could make this go away for you without being dis respectful to your good lady i would wrap my arms around you if felt it would really help nothing untoward off course just to show you as a fellow PWP that I care.

your seance of humour and wit has always brought a smile to my face and you will always stay in my heart.


#16

Thanks for that bb I felt the hug an was comforted by it:-)) and a platonic hug is never untoward and always reciprocated warmly, 

live well and ride free.  Cc x


#17

your very welcome my friend respect always to you and your lovely lady any time you want a hug just let me know.

keep riding free we will be in Sept at the Ace cafe Brighton burn up. On our Triumph sprint.

 

BB x