Any others with LBD diagnosis out there ?

The Engineer

New member
Jun 8, 2018
5
0
RETURNING MEMBER

Hello. I joined in 2018, very scared and confused, awaiting diagnosis. Two and a half years later, specialist says Fronto-Temporal Dementia (FTD) but symptoms are Lewy Body Dementia (LBD). I always have to make things complicated!!

I have got to (and gone past) the point where I can manage my affairs, so we've already got the Manx Enduring Power of Attorney (EPA) so my wife manages our affairs. I remain at home, my wife is my sole carer.

My condition is physically disabled by ME, taking a lot of painkillers to overcome head and muscular pain. Physically, limited in mobility. Having terrible Lewy Body nightmares, mentally very tired and confused through most of the day. No incontinence, have swallowing problems, digestive problems, glaucoma, tremors, speech issues.

So, any fellow LBD sufferers out there??
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
RETURNING MEMBER

Hello. I joined in 2018, very scared and confused, awaiting diagnosis. Two and a half years later, specialist says Fronto-Temporal Dementia (FTD) but symptoms are Lewy Body Dementia (LBD). I always have to make things complicated!!

I have got to (and gone past) the point where I can manage my affairs, so we've already got the Manx Enduring Power of Attorney (EPA) so my wife manages our affairs. I remain at home, my wife is my sole carer.

My condition is physically disabled by ME, taking a lot of painkillers to overcome head and muscular pain. Physically, limited in mobility. Having terrible Lewy Body nightmares, mentally very tired and confused through most of the day. No incontinence, have swallowing problems, digestive problems, glaucoma, tremors, speech issues.

So, any fellow LBD sufferers out there??
Welcome back, Engineer. Sorry you have so much on your plate.
 

Andya

New member
Sep 15, 2022
2
0
Hi Engineer. I was diagnosed with lbd with Parkinson’s syndrome a year ago but I was told after an injury 5 years ago that I would be getting a dementia after a front temporal scan five years ago . I too gave most of my active boating hobby and driving at the request of my consultant who I see every three months on a regular basis and any changes his secratary is rang. I only see one regular doctor who has joint responsibility with my consultant. I have also what you call nightmares but mine are of no harm to me more like movie with no sound usually of old people talking at the table and as an engineer as well I think it may be a vision from the past what has been locked in my brain I have had several visions of people who I have known and have got near to talking to them , I also have my problems with swallowing food but my wife and I have regulated my diet so everything is chopped or cut finely and it solved it for me . I know I am lucky having a wonderful wife and lots of family support. I also am lucky enough to be able to have a weeks holiday every month until I cannot walk altogether . At present I need a stick to get about but as I don’t know how long it will last I will continue to go on and making sure my wife gets all my support as she bears most of my ilness
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @Andya
a warm welcome to DTP

I'm glad you have support from the medics and your wonderful wife

I'm afraid The Engineer hasn't been back to DTP for over a year so may not reply to your post

I see you have also started a thread of your own
 

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