Lewy Body Dementia Prepare For Rapid Decline In Condition.

Lewy Body Journal

Hi all.

I was so pleased to find this site and I would like to share our experience with you. On the 21st of April In 2010 I decided to give my husband a surprise 70th birthday party and this was the first time I had noticed anything odd about his actions.

(Although on reflection I had noticed he was a bit stooped and walked with a slight shuffle and was, I thought, a little bit depressed.)

My friend and I came up with the idea that she was going to treat him to an Abba concert at the venue we were having the party.

My hubby loves Abba and was not suspicious, although he said he hadn’t seen it advertised. We were to be out for dinner at seven and were being picked up at six thirty.

I went to the venue in the afternoon to put some final touches to tables and at about three thirty I received a call from him in an agitated state to see where I was.

This was not unusual as he is a quite possessive man and liked to know where I was most of the time anyway and I took no notice.

I arrived home by four and he was in a state, wanting to get ready or we would be late. (He always has to be anywhere a half hour early.)

He said he would get dressed and I persuaded him to wait a while as he was bound to pick up his little dog or spill something on his clothes. However he couldn’t wait and I came in from outside to find him in the bedroom dressed except for his belt.

He was holding it and looking at it as though he didn’t know what to do with it. I might say this really scared me as I thought he may have had a mini-stroke or something.

I went to him and took it and said can’t you find the right side and he said no and I showed him and he asked me to put it on.

This put a bit of a damper on the evening and I dare say the shock of seventy people screaming HAPPY BIRTHDAY may not have helped either.

My husband is a handsome man and was an electrician by trade and very clever.

I could not help but notice that night he looked older than his seventy years and sometimes seemed a bit vague and insecure and kept coming up to me as though he needed me near him.

After all of our family and guests had left to go home over the next two days, I really kept a closer eye on him. I noticed a slight tremor in his hands. I asked him about this and he said he had noticed it too. I also asked him if he felt depressed and he said yes.

My husband had a fall from a ladder about five years ago and shattered his heel.

At the time he used to breed and show budgerigars very successfully and loved his birds. He had to sell them as I worked and couldn’t look after our large lawns, garden and the birds as well.

I loved them too and we were both extremely sad to see them go but he had to have lots of operations on his foot.) My hubby loved fishing and golf and had to give them all up as he lost confidence and I put his depression down to losing all of his pastimes.

I know when I gave up work I found myself depressed but I found things to occupy my time whereas he was happy to sit around.

Getting back to his depression, we went to his GP who prescribed antidepressants.

These in fact made him quite ill. I asked his GP if it could be Parkinson’s Disease as I had looked it up and read a lot and he quickly told me it wasn’t, it was just depression and he needed to get out and do things.

I partially agreed with the making himself busy bit but my gut feeling was telling me there was something else wrong. We had been married for almost fifty years and I know him very well.

For twelve months we kept on but the GP was relentless that it was depression.

We were visiting him at least twice a week and my husband wouldn’t change. Suddenly one day the GP out of the blue said I think you have Parkinson’s.

I was gob smacked and never felt more like slapping someone than I did then.

It took nine months for us to be able to see a neurologist and he confirmed Parkinson’s Disease.

He said that some people also developed Dementia and I knew deep in my heart that my man was going to be one of them.

It wasn’t until April 2013 that we received the news that he had Lewy Bodies and were told to  – (prepare for a rapid decline in his condition).

I was shattered as the father of a friend of mine had passed away in June 2012 with this dreadful disease.

He too was diagnosed with Parkinson’s five years earlier and then Lewy Bodies three years later.

It is true the decline has been rapid with hallucinations and anxiety among the many changes.

Obsession with our little dog who he can’t bear to be away from.

I have had to give up my part time job (which happened to be at a funeral home) mainly because he didn’t like me out of his sight, and also I volunteered at the local hospital. I loved both of these jobs and miss them, but I felt his self security was more important.

He is obsessed with money and is afraid of not having enough for when we are older. He doesn’t understand his prognosis is not good.

He is always pulling cotton out of his food and sees it coming out of the heater.

We have ants and spiders crawling all over the floor and people in the room with us but he doesn’t talk to them. He can not count money, use the remote controls or the telephone.

He was once a beautiful hand writer but alas that has gone — now his writing is legible but just. I, like many others who have written in, believe his symptoms started as far back as twenty years ago — that was when the nightmares were happening.

Thank you for giving me the chance to talk about our life as it is, as my family are finding it hard to deal with and tell me “I am exaggerating, he is not as bad as I’m making out.”

I understand they are probably in denial as it is all so sad.

KIND REGARDS AND THOUGHTS OF EVERYONE WHO HAS WRITTEN IN, JVS