Hi


#1

Hi,
My name is Paddi and I am 56 years old...I have been married for 31 years, we have 3 children, 1 boy 2 girls, 5 grandchildren, 4 boys 1 girl, and another boy due in April..
My husband was diagnosed with possible Lewy bodies dementia with Parkinson's..he is 54, was only 52 when we got that bombshell..
He has the most awful nightmares and lashes out, kicks out and screams out..the kicking out has been going on for a number of years, we put it down to stress ..he kicked out one night so hard that he managed to kick the chest of drawers and broke several bones in his toes, but he never woke up and only discovered the next morning when he woke..I thought maybe I had dreamt it as he didn't react..then he started punching out and managed to give me a huge shiner..we had our 15 month old grandson in bed with us and I had just put him back into his cot ...doesnt bear thinking about what might have happened if he got him instead of me......
Anyway the reason he finally saw the Dr is because he started to forget the words to songs ..he is in several choirs so this was a cause of concern..we had put everything including this down to stress..
He is in a military job with military doctors so its not like I can go along and have a chat..but I really am at a loss..I don't know where to go for support or help...I don't even know what help or support I need...how daft is that!!
I'm hoping by joining here I can get some of it off my chest...


#2

Hi Paddi,

Welcome to the forum! :slight_smile:

Thanks for giving us such detailed information on your situation. The forum is a great place to speak to other people that are affected by Parkinson's so I'm sure you'll receive a lot of help and support from the forum community.

Along with the support of the community, we also have a lot of information on the website regarding relationships and family life that you may find helpful to your situation. We also have a helpline if you need to speak to a Parkinson's specialist if you'd prefer to speak to someone over the phone, they are always happy to help with any queries. The information on the website can be found here and you can contact our helpline on 0808 800 0303.

I hope you find the forum useful and engaging.

Many thanks,
Reah


#3

Hi Paddy,
Your husband is likely to become very dependent upon your support.So I think I would also ask to see your own GP to seek advice on how to ensure your own health, and what to expect.
The actor Robin Williams had an extremely aggressive form of DwLB. His story is here, but you will need fortitude to read it:
https://www.scientificamerican.com/article/how-lewy-body-dementia-gripped-robin-williams1/
Maybe knowing the worst outcome will help you and your family plan ahead.
Peter


#4

Hi Paddi
I have been Dx with Lewy body with Parkinson’s 2years myself, but had symptoms for a long time before, my wife has found Alzheimer’s society to be helpful for her as a dementia carere we live in the south west of the uk and she has found there support invaluable, we have also had tremendous support from Parkinson’s uk especially our local support worker who has helped with my pip application twice now very successfully .
Live well. Cc