Dementia and photography

 I one main hobby which I really enjoy these days, and that is photography something which gives me a lot of satisfaction, on good and bad days as it is so relaxing, to look at without doing much.

The second is photography, a hobby that I always enjoyed, even before the diagnosis, but now there are problems remembering the settings, etc.

The pleasure I get from this hobby is quite something, and yes things can and will go wrong but with digital photography, life is sometimes that bit easier, as the bad pictures can be removed rather than expensive processing only to find the photographs failed to come out or are blurred.

I have tried a few things to try to remember the settings, but I always get somewhere and either can not remember them or can not find the paper with them on. This gets distressing, but I have to fight this as I get so much out of the hobby that I can not give up,

I have a few friends who also have dementia, who are very keen photographers and they seem to have similar problems, so I am not alone.

I love taking pictures of wildlife, but as will all small things whether it is wildlife or children they never stay in the same place for very long, so patience has to be used, or you need somewhere comfortable to sit.

These days with the help of assistive technology things are slightly easier, because once I have got myself set up with the camera tripod and my remote camera switch, I can sit back and wait.

This photograph was taken early in the morning down at our local park, and it was a great thrill getting close to this bird which is normally shy, but there was no one else around at the time.

Being able to catch this otter was a wonderful experience to me as it was a very cold and damp day out in a boat, but it worked and is my pride and joy. I took this when we were on holiday in Scotland

Wildlife photography is very relaxing because it means that you have to sit still and be patient, and it can very thrilling when the shot comes outright.

I could not get very close with the shots above so I had to use a cheap zoom lens, but I did enjoy the pictures when I loaded them onto my computer.

There are many photography books, but none for those with this illness, so it's a case of trial and error, and I guess that many professionals don't think that people like me are worth helping. It's up to us to change that and prove them wrong because we are still active even though our memories and brains are doing their own thing

Of cause, we must always remember, that any pictures of people taken can never be shown on the Internet without permission, otherwise we can risk prosecution, whether we have this illness or not.

Recently I found that I had lost a lot of control when trying to use manual settings, and although that is upsetting, I can still use the automatic settings.

Dementia and hobbies

 Many people have hobbies to keep them going, but like me many hobby’s are left behind, either because we cannot remember how to do them, or they become too difficult and unsafe to keep up.

I used to love wood turning until it became too dangerous to carry on doing. Even with the emergency stop buttons, I simply tried to stop the machine in other ways, often ending up with injuries.

So my son took it apart to stop me using it. It was sad, but I realised that it was needed to stop me hurting myself badly

During this time I used to love photography, a relaxing hobby, and something I really enjoyed doing.

However this became difficult when I started to forget the settings. I always loved the manual settings, but realised that I had to forget that and move to automatic settings. Been that can be hard on the wrong day, but that’s life.

On the odd days I would carry a camera around with me, but would just not be able to set it up, this would lead to me getting upset and depressed, but I knew the next day, things my be different and they may work, so it was a case of trying to keep going.

A friend of mine was the same, and got close to giving up but was advised to try an exhibition. This was set up for him and the response was amazing.

The reason being that people with dementia look at topics in different ways to professionals, who need everything in the correct place.

This proved a point to me so I carried on. It’s my view that we all look for different things in a photograph, and it’s down to your own view, and no one else’s. I guess it’s a bit like art, some people like traditional art, while others like modern art etc.

A few years ago I was at a dementia meeting, and a local artist came in with some pictures which were very modern. I vaguely remember looking and thinking something like, what on earth is that.

After a while people started looking at them and then commenting about them, things like I can see a door or window.

After looking again I too could see these things, so I guess it’s what your eyes can see in everything. Never judge a book by its cover comes to mind.

Sign of the times

 Recently I took the decision to step back, and retire from doing presentations and talks, because of ongoing medical problems. 

This was not taken lightly, because as well as talking about Lewy Body Dementia etc, I got quite a lot out of it, and met many new friends on the way.

 But over the last few months, I knew that things were changing and that included my health, so after talking to my wife, it was decided that I should retire, and try to take things easy, while I try to get my back, hip and gait sorted out.  

The Orthopaedic consultant said that I was walking with a very odd gait, and wanted to work out what is causing it, as it could be related to either my brain or spine. 

My walking has got a lot worse, and find it difficult to sit properly or stand upright for any length of time, so I guess I realised it was time to change things before I caused an accident  

My daughter is a biologist, so she is often involved in any decisions we make like this because she understands things better than I do. I am blessed to have such a lovely wife "Janice", and Daughter "Claire", along with our son "Mark", who helps us out, as and when needed. 

 I am so very proud of my family and Grandchildren, and would be lost without them all   Mark is also training to do the Great North Run, and if successful the London Marathon, something I knew nothing about until recently when I understood a post on facebook I say this because these days, I read something and don't always understand it, or get the true meaning, but that's all down to my brain.  

It feels odd that I am struggling to walk far, yet Mark is running in marathons? However, I am very proud to have such a wonderful family, including 5 wonderful Grandchildren, who could ask for more. 

During this time I have been honoured to be an Ambassador with the Lewy Body Society, which are doing a wonderful job raising awareness, and the profile of this illness within the UK, while also helping those living with this illness and their carers.

 This is a small charity, which does not have the vast resources available to the larger charities, but I do believe that they do a better job, because they focus only on Lewy Body Dementia, and are backed up by high profile people within the medical profession. 

While I am cutting back, I will still do what I can to promote the Lewy Body Society, because it feels like a big part of my family. 

I am not sure whether I will carry on with this blog because it's taken nearly three weeks to write this blog post. Over the years this blog has been read by over 342- 300 people, something I am very proud of, even though it all started as a complete mistake, but it helped to keep my brain active, so that must prove something 

 Ken

Trying times

 As we are all aware, things are difficult at present with this corona virus going around, but we have to try to remain active, which can be difficult when you are told to stay at home and not go out.

I got to the stage where my legs were giving way, so my wife suggested that we went out early, so we could get round our local park which is 500 yards away.

But that is difficult at times because of runners and cyclists who will not keep their distance from everyone else.

These people are all young 20-30 year olds who don’t seem to care about anyone else. Many of these people spread out across the footpath, and will not move to allow you to pass.

I have a walking stick, for my balance, but they even ignore this, and barge through. In the first lockdown in March people seemed to have more respect, but that seems to have gone out of the window now, but I guess this is because we have a Prime Minister, who does not have a clue, and seems to be ignoring the scientists.

However we changed our routes and things went well until the snow and ice arrived, so we had to stay in.

I do have exercises which I got for my pulmonary rehabilitation, and these are still done at home, along with my exercise bike.

The bike may at times be slow work, but it all helps to keep my legs going, which has to be a good thing.

Trying to stay fit and active also helps keep my brain going, and although it’s difficult at times, it does help.

It would be so easy to sit down and give up, but I have a strong willed wife, and daughter who rings up and keeps me on my toes.

As a Biologist she understands the body etc and will not let me give up.

Are our carers looked after by this Government

Over the years carers of people with any illness, especially dementia, have had a raw deal from the British Government, and many people say that carers are being left to get on with their role, with out any support or care from social services or officials within the Government 

This is something that we all think is wrong because carers are doing an unpaid job which they did not sign up for, neither were they given any training. Caring does not stop when the carers allowance stops, it carry’s on until the person with the illness either goes into a care home or dies.

Having said that, once you reach the age of 65 the carers allowance stops, so what is wrong with this Government, or any other Government who stops supporting carers at this age, apart from the obvious fact that they simply don’t care about anyone but themselves.   

This also has a knock on effect with the Corona Virus vaccination where those who are not on allowances or benefits, do not get the vaccination until much later, yet we have to stay at home while they do the shopping. 

It appears that family doctors are ignoring the carers over 65, because here again they don’t care less. But these people support us 24 hours of the day, and have to do their own shopping. Because we simply cannot rely on supermarkets delivering food which is well inside its sell by date.

I say this because, these shops send out food which is out of date or lasts two days before it’s out of date. This proves that these company’s in the U.K. simply don’t care about those who need to stay at home, as long as they get the money.

It’s amazing to think that these carers save this Government millions of pounds a year, yet they treat them with utter contempt 

Carers are our rock, and without their constant support and care we would be in real trouble, and that would have extra costs all round. 

Repurposed drug enters clinical trials for Lewy Body dementia

Researchers in the US have launched a clinical trial to test a drug with the potential to slow the progression of Lewy body dementia.

The drug treatment, bosutinib, is currently used to treat a type of blood cancer called chronic myeloid leukaemia, but is now being repurposed in this new phase II, placebo-controlled trial. 30 people with Lewy body dementia will be recruited to the study, happening at Georgetown University Medical Center in Washington DC, US.

The connection between Lewy body dementia and Parkinson's

Lewy body dementia is the second most common type of dementia (after Alzheimer's) and is estimated to affect more than 100,000 people in the UK. As with Parkinson's, Lewy body dementia is linked to the presence of Lewy bodies - small clumps of protein (mainly alpha-synuclein) that form within brain cells.

Lewy body dementia and Parkinson's share similar symptoms but differ in how common and severe these symptoms are. For example, people with Lewy body dementia don't always experience the motor symptoms associated with Parkinson's. But for both conditions, it's hoped that targeting alpha-synuclein clumping will help to slow, or maybe even stop, progression.

Potential benefits of cancer treatments

Certain cancer treatments have attracted interest in recent years. In 2017, the leukaemia drug, nilotinib, entered a year-long phase II trial in people with Parkinson's after early research suggested it could reduce the levels of alpha-synuclein. And similar to nilotinib, bosutinib is believed to work by targeting the protein clumps that form in the brain, restoring dopamine levels, and reducing inflammation.

Dr Lynn Duffy, Senior Scientific Copy Writer at Parkinson's UK said:

"This new trial will be the first time that bosutinib has been tested in either Lewy body dementia or Parkinson's. The researchers will mainly be focusing on the safety of the drug, as well as looking at whether the treatment can change the levels of alpha-synuclein and dopamine in the blood and spinal fluid of the volunteers.

"There are currently no disease-modifying treatments available for these conditions. Trials such as this are vital if we are to find drugs that could help the many people across the world living with Lewy body dementia or Parkinson's. We'll be keeping a close eye on progress and reporting any developments."

Learning to live with this virus

 Thanks to Speech notes, for allowing my to do this blog.

It’s been very hard trying to change my life with this horrible virus, and it’s starting to get more difficult thanks to all of the idiots, who will not keep a safe distance from everyone else. The first lockdown made people think and be more caring about others, but this time round, it feels as if no one cares. 

Seeing all of the reports of full hospitals through the virus and all of the deaths, I would have thought that people would have started to realise just how bad things have become, but it appears that many simply don’t care, it’s as if everyone else will catch the virus, “but not them”.

There is also a rise in illegal raves and party’s which involve hundreds of people, who simply don’t want to conform with regulation, but I think this is because we don’t have enough police in this country and the fines are far too low. The Isle of Man arrested people like this and put them in prison and now they are free of the virus, yet we seem unable to listen to the scientists here who wanted the borders closed, and longer lock downs,

I had my vaccination on Saturday, although my wife is not getting hers for a few weeks or so. It’s a start, but I guess it’s going to be the summer at least before we see any improvements to this horror we are living through.

However W have the most incompetent Government in the U.K., where they refused to close our borders thereby allowing people to bring the South African variant of the virus, ad this is now causing extra problems. We had enough problem when people in early twenty’s etc, decided to do there own thing and ignore the rules, so they were spreading the virus around the country. 

We are also seeing a rise in people denying that there is a corona virus in this country, and a rise in hatred being spread by far right organisations.

I don’t understand anyone saying that the virus doesn’t exist, because there have been so many deaths through it. But I think this country turned nasty during the Brexit elections, with racism, and the nastiness has continued, so it’s carrying on with the virus. 

It’s time for the Government to man up and change this country back to where it was 10 years ago, stop the racist people from causing problems etc, then we might all get our lives back again.