Devastated - Im new to this forum.

[Myhubbymyworld]

Hi Everyone, My husband has been diagnosed with Bodies Lewy Dementia. Totally devastated as he’s such a wonderful person. He’s worked hard all his life, retired at 66, starting to show signs that wasn’t him, at 68 his diagnosis was confirmed after a long road. He’s doing well, we keep busy. His memory has good and bad days, we can have a great conversation… but another day I’ll ask him something, he says I don’t know? quite a lot. Is that part of the dementia? Parkinson symptoms are showing more so… He’s not on meds at the moment as the cardiologist has said he can’t have what the neurologist wanted to prescribe.
We are leading a normal life as possible until he can’t. Quietly though I’m broken inside😢

 

[Kevinl]

Hello and welcome, usually it's Lewy Bodies syndrome, might help in a search.
Doesn't matter (to me at any rate) what the specific diagnosis is we're all just here and support each other where we can.
My (now late) wife had early onset, mixed, atypical Alzheimer's, been on here over12 years, where practical help is available condition specific isn't what you need is practical help.
Just keep posting. K

 

[Louise7]

Hello @Myhubbymyworld and welcome to the Dementia Support Forum, although sorry to hear about your husband, such a difficult time for you both. Even if expected, a diagnosis can be a real shock, but you will find lots of support and advice here from people who understand, and we have quite a few members who are also dealing with Lewy Bodies so hopefully someone will be along who can answer your question. I don't want to bombard you with too much information but you may find the links below helpful in learning more about Lewy bodies, plus on a practical note it's a good idea to get Lasting Power of Attorney in place if you haven't already done so as this is something that can be really helpful further down the line. Hope this helps, there is always someone here to listen and people here are happy to help if they can.

Dementia with Lewy bodies (DLB): what is it and what causes it?

Dementia with Lewy bodies (DLB) is a type of dementia caused by Lewy bodies, which are clumps of protein in the cells of the brain. Read more about what DLB is, and who gets the condition.

www.alzheimers.org.uk

Lewy body dementia (LBD) – Rare Dementia Support

www.raredementiasupport.org

Lasting power of attorney for people with dementia

A Lasting power of attorney (LPA) is a legal tool that lets you choose someone you trust to make decisions for you. There are two different types of LPA: property and affairs LPA and health and welfare LPA. LPAs can make things easier for you and the people you are close to as your dementia...

www.alzheimers.org.uk

 

[maisiecat]

Hi @Myhubbymyworld ,my husband has late stage parkinsons and parkinsons dementia not lewy body dementia. Lots of our Parkinson friends have lewy body dementia as its pretty common in combination with Parkinsons.
Lewy body dementia tends to show hallucinations and short term memory loss but people are unique with their symptons.
You are doing exactly the right thing with keeping busy. Parkinsons must be kept moving. Try and see if there is a Parkinsons group in your area as they will have activities. Exercise has to be of a particular type so while walking is great the classes do exercises that challenge the body against the brain. Sounds complicated but isn't. Its things like walking round cones but shouting out names of countrys beginning with B. This challenges the Parkinsons brain.
Won't overload you with anymore but Im often on here so will look out for posts.
And yes its b....y hard I love my husband to bits and have had 18 years of it but there is nothing better you can do than encourage and support