Visual Problems

Over the last few years I confess to struggling with seeing things that were either not there or I simply did not recognise them properly

This can lead to many different problems, some of which can be distressing, if you do not understand what is going on.

I often have problems writing documents down now, because I often repeat complete sentences etc, and never see this until it is checked and pointed out by either my wife or someone else.

On a few occasions it's been too late to spot mistakes and if I have been giving a talk, I obviously repeat these things.

I suppose that while I was working, I never had this problem, but now it's one thing which can be upsetting.

I also have visual problems these days, because when I am out I sometimes see people walking towards me, but I do not always see their faces, and that feels very odd. It also causes problems if it's a friend walking towards you, and then it's embarrassing not being able to recognise them from a short distance.

Or walking towards a doorway can cause problems because I either hit the doorframe or the door handles causing bruises to the arms.

Things like walking through a doorframe is something we all take for granted, until one day when you hit the side and find people looking at you as if you are drunk or stupid

I often sit at the table and forget which hand is used to hold what when eating and this makes me feel and look clumsy. I guess this is because I now struggle to understand which is left and which is right, so I end up putting one hand out hoping it is correct

These days coping with fast moving people and trollies in supermarkets can be horrendous on some days. On some days I find it hard when children come up from behind of in front of my on these shoes with wheels on there heels etc. I suppose it's because they move so fast and my brain cannot keep up with things anymore.

However eyesight or visual perception has caused many other concerns over the years because, I cannot read something like an email, and get the true meaning each time. Some times my brain tells me one thing, while in all honesty the email is saying something else. This means that unless my wife checks it, I can sometimes send back the wrong reply.

So these days all documents are read by my wife, and then she explains them to me. I can see the time coming when things like the blog, Twitter and Facebook etc, will be closed down, because they will be too difficult to use.

I admit that this will be very hard, but I would rather give up than end up looking silly

I remember using lots of big words while I was working, now I simply don't understand what they mean, and end up asking my wife. It's hard to imagine that one word can cause so many problems, because the brain tells me that it's one thing, then when I look at it again, I see something else.

Even listening to the radio or television, I have to ask what something means.

Does the NHS really understand Dementia

Many people struggle with daily problems, while trying to manage the ever changing, things in life like technology which they may or may not understand.

While many people with dementia have someone to look after their needs and explain things to them, I do wonder how many of them really understand technology, or things like computers and the internet. Many people with dementia don't have full time or live in carers, so they at a disadvantage to others, but how many doctors take this on board.

This is also largely disregarded by many officials within the NHS and other services, but we are being forced to do everything on line, whether you are competent to do it or not, and now we hear, that we are going to be forced to do online consultations with doctors rather than getting an appointment  at the doctors surgery.

I don't understand this, and in all honesty I can't see this saving a doctors time at all, because it still takes time to talk to a doctor in the surgery, but surely it is better  to do this face to face, where a doctor can see your problems.

Many people don't understand how to use things like web-chat etc or skype, but we are now being asked to do this rather than getting an appointment. I confess that I don't like it neither does my wife, and we have tried this at times when trying to talk to our family at Christmas.

On top of this we are being forced to do on line prescriptions etc, something I don't do because I don't understand what medications I am on or what they are for, so it's no good me doing this.

However recently we have noticed that there seems to be a lack of doctors around the surgeries and more of these are using nurse practitioners rather than doctors. While some of these may be good at their job, I find them to be rather stressful as they don't seem to understand or take on board your problems. We used to have one who was brilliant, but she sadly left.

Sooner or later NHS England and the NHS have to realise that going on line is not the answer to the problem, it may end up with more people going to A&E to get the support they need.
There are too many people using A&E these days and I do feel that this can only make matters much worse.

Not too long ago we used to have a lot of brilliant officials working within the NHS, who knew all about Dementia etc, but as with everything else these days, they were lost or made redundant, to be replaced by people trying to reinvent the wheel.

Let us hope things change before it's too late.

Raising awareness of Lewy Body Dementia

Like many other  people, I am doing my best to raise awareness of Lewy Body Demenntia , which is a terrible illness, and we are encouraging everyone to wear something to represent this 

I am seen here wearing my Lewy Body Dementia tie, something I am proud to wear when ever I am out at an event.

I am very proud to represent the Lewy Body Society and usually wear my Lewy Body Tie, as a mark of respect when ever I can, although tying it can be stressful these days

Many people have never heard of this illness, and as it's difficult to describe properly I have used some information from other websites to describe it properly.

Lewy Body Dementia is not an easy illness to diagnosis, and like other illnesses like Parkinson's disease etc, it can only be really confirmed after death.

So Doctors have to diagnose Lewy Body Dementia, based on the range if symptoms a person shows, and thus usually requires an ongoing decline in the following,

Thinking skills

Planning

Along with two of the following:

Visual hallucinations,

Parkinsonism or

Fluctuating alertness.
Some people may experience a condition known as REM sleep behavior disorder, in which people act out their dreams while they sleep.

This can be difficult for both the patient and anyone sleeping near by, and it's possible for someone to get hurt in the process, as my wife once found out when she tried to bring me out of this dream but got hurt in the process

If a person acts out dreams, that is strong evidence that he or she has synuclein protein in the brain.

This protein is found only in Lewy body dementia, Parkinson's disease and a rare disease called multiple system atrophy. Acting out one's dreams is a feature in all of these diseases.

They also may have instability in their blood pressure and heart rate, and the body may have difficulty controlling body temperature and sweating.

Because Lewy body dementia diagnosis and treatment needs to be managed properly to get the most effective results, people who have this disease should be monitored by a physician with expertise and experience with Lewy body dementia — usually a neurologist

A brain disease that gets worse over time, Lewy body dementia is caused by an abnormal protein, called synuclein, which is deposited in certain nerve cells and nerve processes.

These deposits are called Lewy bodies — named after the physician who first identified them. In Lewy body dementia, Lewy bodies are found in the deep structures of the brain that control movement, as well as in the middle and outer structures involved in emotion, behavior, judgment and awareness.

Many patients with Lewy body dementia also have overlapping Alzheimer's disease. About half of Lewy body dementia patients have significant Alzheimer's disease, as well.

This, it is not surprising that those diagnosed with Lewy body dementia have symptoms associated with Alzheimer disease, such as memory loss and naming difficulty.

However, when doctors who have expertise and experience with the disease make a Lewy body dementia diagnosis, that diagnosis is often correct — as confirmed later during an autopsy.

An accurate diagnosis is important, because Lewy body dementia responds differently than Alzheimer's disease to commonly prescribed dementia medications.

Lewy body dementia usually progresses gradually over several years, but the way it progresses can vary significantly from person to person.

For example, Lewy body dementia may begin with signs of dementia, and Parkinsonism appears later. Or the disease may start with movement difficulties, and signs of dementia don't emerge for some time.

Most people with Lewy body dementia experience the onset of Parkinsonism and dementia within one year. As Lewy body dementia progresses, all symptoms usually become more severe.

Hallucinations occur early in Lewy body dementia but only after about four years in Alzheimer's disease.

Lewy body dementia is a complex disease, and it can be difficult to control. Currently, there's no cure. But, when treatment is carefully managed, symptoms may be reduced, so they have less effect on a person's daily functioning and quality of life.

Some people diagnosed with Lewy body dementia respond positively to medications called cholinesterase inhibitors.

They boost the level of a chemical messenger in the brain called acetylcholine that's important for memory and other cognitive functions. These drugs may help improve alertness and reduce hallucinations and signs of dementia.

Other medications are available to help decrease the Parkinsonism, hallucinations and other Lewy body dementia symptoms.

These medications must be closely monitored by a health care provider. In people who have Lewy body dementia, medications to improve motor function may make symptoms such as hallucinations worse, and medications used to combat dementia may increase Parkinsonism.

Please accept my apologies because my tablet is playing up, so some of the writing is a different size to the original

If you considering a charity fundraising event in the future, or considering doing something positive as a New Years Resolution, if so why not consider supporting the Lewy Body Society.

Charity events run through out the year, and range from small family events, to large local or national events, so please think of this wonderful charity if you want to do a charity run etc.

As an Ambassador with the Lewy Body Society, I would like to encourage people to support us in any way they can

This is a small charity which is totally dedicated to those living with, or caring for someone with Lewy Body Dementia in the United Kingdom

We need all of the support we can get, so we can promote the charity, in the hope that we can get a higher profile for Lewy Body Dementia, and also for those living with this form of Dementia and their carers, within the UK.

So if you are considering doing a sponsored event for a wonderful caring charity, please come and support this wonderful charity, which does so much to help those with this form of Dementia, within the UK

If you are unsure what the illness is, or need to know more about it, why not look at our new video about Lewy Body Dementia, which is on our website. This was filmed this year and it's now doing it's rounds on Social Media under Lewy Body Society. Org. UK

The more people Who Know, The Fewer People Who Suffer

The Lewy Body Society
Hudson House
8 Albany Street
Edinburgh
EH1 3QB
Telephone 0131 473 2385
Email : info@lewybody.org
Press enquiries lewybodypress@gmail.com

Remembering the dream

The photograph at the bottom was taken around 2007 when I did the Coast 2 Coast with my son.

What would you like to do, while you still have the chance

This was a question I was asked around 2005, after my diagnosis, when I was unsure about what life had in store for me.

So this copy of the blog was written then although I am unsure of the correct date.

A few weeks ago someone who was a doctor, asked if there was anything I would like to do, if I had the chance to do it, while I am able and get the chance.

She was a bit shocked at my answer, but as I said to her, what have I got to loose, I have had a good life, and although I did not ask for this illness, I would really like to do something positive for a charity, as some of these people have helped me so much since being diagnosed with Lewy Body Dementia.

Apart from seeing parts of the world which look fascinating, like Singapore where we went with the Alzheimer's Society to the Alzheimer's Disease International Conference, but then I am unsure as to where I would go because long journey's cause a lot of stress.

There are parts of the world which fascinate me and would love to go but would never be able to afford the costs.

However I would love to do something stupid like a parachute jump, or wing walk for charity, providing of course that someone paid for it,, and also paid a large sum of money to my chosen charity.

Am I stupid, I don't know, certainly my wife thinks I am, but I would never have even considered this years ago before my diagnosis, so perhaps I must have lost my fear of things like this, or I just want to do something like this before the illness gets any worse.

I could never do a bungee jump, as I would be terrified of the rope snapping, but why am I not frightened of the other two, I really don't know.

I suppose with these two you are strapped on to something, which is a form of security.

In 2007 my son decided to do the Coast to Coast cycle ride,but as things turned out he could not get anyone to join him, and one day suggested that I should join him, but I don't think either he or my dear wife expected me to take him up and do it. I still don't know what made me agree to do it.

It took over six months of training to get fit enough, and get used to the bicycle, which in the end was part of me, and I got so relaxed I would do parts of the journey on my own, as it was away from traffic.

When we started it was difficult to stay up right and stable on the tracks, and I had problems at times with sharp corners, as I could not always judge them.
However after a while I felt as if I had never been away from a bicycle.

I used too cycle to work each day before I became unstable and stopped, and confess that I never ever expected to get back to it.

Yet once I got past the first month I got less and less stiff, in myself, and enjoyed it. After the big event I felt as it I had wrecked my right knee and hip, and had problems for quite a while, and still do on cold days or after a bad night.

Although it was hard work, and brain draining at times, I really enjoyed it, as it was an experience that I never thought I would ever try let alone complete.

The second day was hell as I kept forgetting which gears were which, and felt like throwing the bike into a stream on two occasions.

However the fundraising side of this took its tole on my family, and we all agreed we could never do it again, as it was all down to family and friends, although we did raise around £3,000 for our local branch of the Alzheimer's Society. This was before I had heard about the Lewy Body Society, otherwise we would have raised the money for them

But I don't think I could get insurance for this anyway, as travel insurance is well out of my league, so much so that last year we went to Malta and my insurance cost just as much as the holiday, all because of this illness Lewy Body Dementia.

So perhaps I will have to just think about this and imagine what it would be like to do it.

If I ever do anything in the future God willing, it will be for the Lewy Body Society, because they have done so much to help me, so this will help to pay them back for all of the support and help they gave us.

This illness makes you think of all sorts of stupid things at times, but I guess its because we feel as if time is running out, so perhaps I should just take it easy and behave myself.