Nothing wrong

[KenC]

Hi everyone,
After appearing on TV with the NICE decision, my wife was asked a few times by people who knew us, how long I had been ill because I don't look as if I have Dementia. These people obviously do not know that there are various stages of the disease, and must expect everyone with it to be in a home or hospital.
I often look around when we go out shopping and wonder how many people around us have this disease and yet no one realises. We all look ok on the outside and yet the brain is slowly closing down. I often look back to when I was an engineer, and had to set up budgets and work out wiring diagrams, now they do not make sense. One thing I am asked on a regular basis is how did I get Dementia? as it I had picked up an infection.
Perhaps it is time to teach people about the disease, so that the public can get a grasp of the situation as it is and not as it used to be in the dark ages.
I know I am in the early stages of this and to be honest the rest scares me like many others, but while I can do things to help myself and others I would like to do so, in the hope that life can be made better for those who follow us.

Best wishes

kenc

 

[Brucie]

Hi KenC

Perhaps it is time to teach people about the desease, so that the public can get a grasp of the situation as it is and not as it used to be in the dark ages.

Spot on, Ken! While the AS does this all the time, the fact is that until we come into contact with dementia - ourselves, or with family or friends - it stays something we tend not to think about. Particularly to think it will ever happen to us or anyone we know.

Just how to break out more widely is the challenge, I guess. We all try to help in some way, but it needs to be broadened.

As usual, you are an inspiration to us all!

 

[Lucille]

Hi everyone,

I often look around when we go out shopping and wonder how many people around us have this disease and yet no one realises. We all look ok on the outside and yet the brain is slowly closing down. I
kenc

Hi KenC

Thanks for your post. What you wrote above, is something I've started doing when I'm with (and without) my mum. Also, now, I find myself scanning face of people who aren't elderly. If visiting this site has taught me one thing, it's that dementia is not only a disease of those of advancing years. I hope you and your wife's TV appearance helped to get the message across. Brilliant!

 

[bel]

dear ken c
i know where you are comming from they ask me how is hubby he looks fine and thank god has a daft sence of humor --but how do you look with dementia --
like you say and brucie we need to teach people
inform them more i like a lot of the public thought it was an age thing --as we all know its much more
good on you for keeping on ken with life and computor its the only way to go if my hubby was up for it i would help him spell and talk to you on tp he is also dylexic but loves a laugh
love bel x

 

[KenC]

Hi All,
I think everyone should by re educated as far as this illness in concerned, because every where you go its the same old story.
I'm too young to get that because I'm in my thirty's or fourty's, everyone thinks its still something the elderly get.
I think the society needs to re educate school children, because after that they all think they are imune to the illness regardless of age etc.
I also think that at that age, they take more on board about Gran or Gran Dad, usually because they are figure heads, someone to look up to, and sometimes, someone who seems to be around when we need comforting or help.

Perhaps if we started early enough we may in future be able in influence the way Governments think, about the disease, so that we are no longer the cinderella's of society.

I was collecting for the society in Durham a few weeks ago, and wished afterwards that I had had my dictaphone with me, the comments were so surprising.

The number of times I was told that it was a horrible disease, is amazing.
I'm far too young to get that.
Look after your self I hope you never get it when you're older. If only they knew.


Best wishes

kenc

 

[Kayla]

I do agree with Ken that the public need to be much better informed about dementia. Mum had over 25 friends and family to her 80th Birthday Partyin 2005, while she was still living in her own home. Since she has been in the Nursing Home and it is known that she has become confused, I seem to be just about her only visitor.
The line of distinction between an elderly person who is a little confused and someone who has vascular dementia can seem hard to define. Mum varies from day to day, but obviously her fall has hastened her decline. If only I had known more about dementia a few years ago, I could have understood her problems so much better. I do wonder if some people actually think dementia is catching!
Mum was probably having problems remembering words and muddling things up for years before anyone really noticed. If she hadn't had rheumatoid arthritis, she may have coped with living in her own home for a little longer. There must be many people in the early stages of dementia who can carry on with life as normal and remain undetected by those outside their family.
Kayla

 

[jenniferpa]

There must be many people in the early stages of dementia who can carry on with life as normal and remain undetected by those outside their family.
Kayla

Millions I would think (well, at leasthundreds of thousands), particularly as doctors persist in saying memory loss is a normal part of aging. It may not be fixable, it may not be progressive, but it isn't normal (as in inevitable), according to all the research I have read.

Jennifer

 

[ann60]

Hi Ken I guess I was ignorant to how many people are affected in some way with ad until my mum was diagnosed in her 50's. It's one of those things that affects other people not you, until it becomes a way of life. It has been for us for the last 11 years. I was still unaware how many people are affected at a young age until I joined this site. I thought mum was just one of the minority but no she's not and you're right, people do need to be educated and have to realize that this can happen to anyone of us. I hope your tv appearance helped you're an inspiration to all who read your posts. love ann

 

[MrsP]

Hi Ken

I work on a Medical Ward at the local hospital, and recently had a patient in her 40's who was showing some of the early signs of AD - spatial awareness problems, short term memory loss, inability to co-ordinate tasks such as dressing etc. Having seen Dad go through this, I mentioned to the Doctors that AD could be a possibility, to which I was horrified to be told 'she's too young'. Despite telling Dad's 'story' they still refused to look into it, instead sending her to see a psychiatrist.

Obviously it could also have been any number of other things, but the fact that it was dismissed so easily was disturbing. I think better education needs to encompass those in the medical profession as well as the general public, and I'm sure many people have had the comment '(s)he's very young for that'.

Kate x.

 

[KenC]

Hi MrsP,

Thats a very sad story and one I have heard many times through the society. You said she is being sent to see a Psychiatrist. In some parts of this country, it is these people who decide whether some one has the disease and not the Neurosurgeon.
It is possible that the young lady will be diagnosed correctly by the psychiatrist. We will just have to hope that this happens here.

Best wishes

kenc

 

[MrsP]

Dear Ken

I hope that's the case- the ward docs thought that it was being put on due to previous mental health problems. They may be right but I found them a little narrow minded.

Merry Christmas, love Kate x.

 

[Margarita]

My daughter is 23 & has partial epilepsies that , is not like normal epilepsies as its very Complex , because its effects her memory only , they do not no if its effecting the long team or short memory, or what will happen in the future , its control with medication she at university and gets a Dictaphone , lots of technical assistant for her memory. All I can think of is she more likely to get Dementia / AZ in the future, its so scary that I do not want to think talk about it with her, what could happen to her with her memory when she gets to the age of 40, also I don’t want to worry/ stress her

I wonder if people do not like to talk about getting dementia under the age of 60 because they are scared, so would rather go in to denial and say it will not happen to me.



If only NICE would show more respect in giving people medication for the slowing the Dementia / AZ down , Giving the person a good quality of life maybe people would stand up and take notice that its not an old age disease

 

[KenC]

Hi Margaita,
As you say people under a certain age,do not like to say they have Dementia because like it or not there is still a certain amount of stigma attached these days.
Many people still think that this is an illness that only the elderly get. where as anyone no matter what age can get it these days. I have used the word for my illness from the start, because I was told I had Dementia with Lewy Bodies, and took it from there.
I admit I have had a few odd looks from people, and I think some get confused between Senile Dementia and the other types, but as they say "Thats life".
I have been out to speak at Alzheimers Society functions at times, and people have looked at me at times as if to say, (What do you know about it). If only they knew that its the only way I and some others can cope. It really helps at times talking about Dementia and using its full name. I must admit that it must be harder for those who are younger than me, when they are diagnosed.

Best Wishes.

kenc

 

[Margarita]

Hi ken

I must admit that I had never heard of Dementia with Lewy Bodies , before mum got AZ and can’t still understand what lewy body is ? Meaning the different from Dementia AZ . to Dementia lewy body .

I bet it’s the word

dementia

that bring up the thought of senile dementia in people.

If I say to people mum got AZ , they reaction is different then if I said just dementia .

your confuse them if you just said Lewy body disease of the brain, but then is lewy body, a disease like AZ? Sorry for my ignorant

 

[KenC]

Hi Margarita,
Dementia with Lewy Bodies is just a variant of Dementia. They all have different effects on different people. I used to get horrendous nightmares before the Medication kicked in. These were so bad that even when I woke up they carried on and could last a long time. Now they have gone.
One of the side effects at present is that sometimes certain noises are exagerated at times, to the extent that they become unbearable. The other day my wife and I were on a train and I could hear someone opening a bag of crisps. The problem was that we were sat at one end of a busy coach, and the person with the crisps was seated at the far end of the coach. My wife often wonders how it happens, but as the consultant says it is normal in that condition, because the brain has become more sensitive to noise.
The sound of our two Grand children can also do the same thing, which is very distressing as I love them both dearly, but its something I can do nothing about.
In that case I have to leave the room and go somewhere else for a while, and then go back when I am feeling better. Its not there all the time but it causes a lot of problems when it is. My wife bought a bag of Ear plugs, so that when things get rough I can use them. I never realised that there were so many forms of this illness, until I go it.
Still as I keep saying to myself on a daily basis, There is always someone somewhere in a worse condition than myself. Its not much but it helps.


Best wishes

kenc

 

[connie]

Gosh Ken, thats the first time someone has been able to explain Lionel's heightened sense of noise, especially the eating of crisps.

I realise it takes somebody who is going through it to put it into words.

Wishing you and your wife all the best for 2007.

 

[mel]

Ken.....that has really helped me too! Mum is quite deaf but now refuses to wear a hearing aid (and has done for a couple of years) and she gets very annoyed when people are eating crisps/rustling papers. I had no idea......
As Connie says it helps us, the carers, understand more when a sufferer can explain it to us.
Thank you for that
xx

 

[KenC]

Hello connie and mel,
The problem with the hearing was spotted because my consultant, who is also a psychiatrist, is a medical lecturer and knew all about this problem.
She also spotted another problem I had, when I am in a group of people who are speaking at the same time. I can look at the person in front of me, but all the voices are jumbled up. This gives a me a problem at times because I am trying to concerntrate on one voice and it does not work that way. I was terrified when I was told that I was being past from a neurologist to a psychiatrist, but that is the way it is done in a lot of hospitals these days. It also meant that I was treated as a person, instead of a complete idiot, which helped to make me, and I am sure many others more relaxed.
When I first came across the problem with the crisps I really thought I was going mad, because it happened on a bus from Milton Keynes to Durham. It seemed a life time before the crisp bag was opened, and after that the dear lady crunched her way through what seemed to be a sack of crisps, I think it took her about 20 mins, by which time I was close to screeming.
This does not happen all the time, in fact I like crisps, but on a really bad day I leave the room when someone is having them.

Best Wishes

kenc

 

[Margarita]

Ken thank-you for explaining what Lewy Bodies is

She also spotted another problem I had, when I am in a group of people who are speaking at the same time. I can look at the person in front of me, but all the voices are jumbled up.

Now that really give me an insight , as that is what happen to my mother , as on a one to one conversation with my mother looking at her face she can understand me so much better ( I always wonder what was happeing ) then when they is a group of us talking to her

used to get horrendous nightmares before the Medication kicked in. These were so bad that even when I woke up they carried on and could last a long time. Now they have gone.

That could explain why when mum go to sleep or has a nap and dreams (does not have nightmares) so much so, that she think its real (like a lucid dream) sadly she can’t understand what lucid dreams are . her medication does not stop it , she keeps asking why she dreams so much , why she keeps having so many memorys from the past so long ago and she does not like it , I don’t know if its the right thing to say to her , but I ask her to tell me about them and how nice that she can remember them , she told me some wonderful memories from my past that I would never of know about , if I had not ask & just dismiss it


Do you get like that ? What I can only explain now , is like a flash back of memories from your past ?
I know its different for every one , but am just wondering , please tell me to stop if I get on your nerves asking Questions

 

[KenC]

Hi Margarita,

The nightmares were at times horrrific, but even when I woke up I knew what they were about which was weired, unlike a lot of dreams which you forget about once awake. They were certainly nothing from the past, but when I spoke to the consultant she said that, they sounded the type of thing people with the illness often spoke about.
Beleived it or not if I sleep during the day, which happens quite a lot, I go out for the count, and even if the telephone rings next to my chair I will never hear it.
The day time sleeping can happen so fast at times that I can not stop it. The first time it happened was when I was working one day. I had taken some sandwiches with me because the College Dining room was closed for the holidays. I can remember sitting down in my chair in front of the computer at lunch time, approx 12-30 and woke up at 2-30 with a cup of coffee in one hand and a half eaten sandwich in the other. The only thing that kept the coffee upright was the armrests on the chair.

During the bad times I was told to try to stop sleeping during the day, then I would get a good nights sleep, but that never works.

Thank you for all your interest, beleive it or not it helps me to talk about it and if it helps others then its not a bad thing.

Best Wishes

kenc