Monday 20 November 2017

What would you do to stop Alzheimers

The other day some one asked this question on social media 


If you thought you were going to get an illness like  Alzheimer's disease, or Dementia  what would you do, or would you want to know what was coming.

I guess many like myself would be utterly terrified of the thought of getting one of these illnesses, but in all honesty, there really is nothing we can do to stop it.



I thought my life was coming to an end, when I was given the diagnosis of early onset Lewy body dementia, but my wife and daughter had other ideas, and without their support I would surely have given in altogether

This was before my second diagnosis  after we had moved  home, after losing my job. 

It was then we found out that my original notes had been lost by the first hospital

So I had to be diagnosed all over again, but after this diagnosis was confirmed again, I got more support and help than the original hospital had given me

I was told there and then to "REMAIN ACTIVE " and not to think of what was around the corner, and it helped me.

But my daughter was a biologist and had read about this problem at University, and she kept me going

I was then given this advice by the consultant. 

If a hobby or job you have done for years, and you find that it can not be done on one day, leave it and try it on another day

If it fails on the second day, leave it and try on a third day 

If it fails on the third day, leave well alone, and go on to try something new, otherwise you will end up being stressed and depressed, at losing the ability to do something

This will have a knock on effect on your family and friends

This was good advice and helped me to move on. 

Sadly this consultant left, to spend her time climbing the Himalayan mountains. I guess it was more relaxing than working for the NHS

But this lady was a real professional who wanted to help her patients


I do think people need more support after a diagnosis of dementia or Alzheimer's, because there is little or no  support  these days, it's still a post code lottery

It's my own opinion that there should be dedicated dementia nurses, at the diagnosis, who can then go on to support a person and guide them through their problems. 

There also needs to be more support for our carers, because they have to start from scratch, without any help from social services

What is more, they are saving the country hundreds of millions of pounds a year, with little thanks from the Government. 

A carers role is 24 hours a day, 7 days a week, trying to protect us from coming to harm, and in many cases, without rest themselves.  

Along with this we should be getting more information about our illness at the diagnosis, as I did. 

This allows us the time to take the diagnosis on board in our own time.

This information should also be kept up to date, because there are too many websites these days, which are out of date, and much of the information differs from other websites.


While the news media are full of ideas these days, on how to stop us getting these illnesses, I do wonder where they get these ideas from, or whether its just a way of grabbing headlines and selling their rubbish newspapers 

At the end of the day, if the specialists really knew what was causing these illnesses, or how to stop them, they would be highlighting this themselves

A few years ago, I was discussing Lewy Body dementia with a friend of mine, who has since died. 

We had both had Lewy Body Dementia, and had both worked on live electrical installations over the years, and we wondered if that was the cause, because its not exactly healthy working on live high voltage cables. 

There had been a lot of speculation in the media about high voltage cables and  other illnesses like leukaemia.

But I am sure if there had been anything in this, we would have known by then,

 However If you are going to get one of these illnesses there isn't much you can do to stop it, but by remaining active, it has been proved you can keep going for a lot longer

As one Professor in Neurology in the Northeast once said, we either "Use our Brain or Lose it". 

I have always remember that and it helps me to fight on, and I have no intention of giving in and stopping yet, because life is to short

However I do feel that's it's very important to get as much as you can out of life, and not think about what you have lost or are missing. 
It's about our pets, Families, and Grandchildren etc, and if you focus on them it takes your mind off your own problems

I know that it's not a bed of roses living with dementia, but with help and support from others, you have to make the most of a bad situation. 

I am only too glad that I have voice activated software and spell check on my computer, and this allows me to carry on writing my blog.

I am sure that I would have given in by now, if it were not for these two tools, because I can say the words but have little idea how to spell most if them these days. 


No comments:

Post a Comment

I always say that we may have this illness, but we are all so different.

This is my own daily problems, but I would gladly share anyone elses, if they send them in,

End of the blog

After giving it a lot of thought over the last few months, I have decided to finally stop writing this blog now This is for a few reasons, b...