Tuesday, 16 April 2013

Neurological Illness and Research

As with most of these illness we all have major problems, in life after the diagnosis, but we have to adjust things to suite, or sit back and sink.

As one well known Professor said, we either use it or loose it, and that has always stuck in my memory.

Using a computer when you have dementia is like watching a computer which has a virus, seeing all the words come up in the wrong order and spelt totally wrong.
In my own case the letters of the words are there but all in the wrong order, but this is due to the fact that after years of being right handed , I now find that my left hand is much faster then the right, so I end up sitting on one hand to type on the keyboard.

So my using my computer these days is not brilliant, as I have lost the ability to remember spellings, sometimes have problems using the keyboard, my eyesight is starting to play up now, but at least I am trying to get other people involved, and to help them realise that they may have a Neurological illness, but they can still get out and help themselves, and also help others by getting involved in projects with people like DeNDRoN.

This inspired me to get more involved in finding answers for others.

Some time ago I got invited to join a Government backed group looking into Neurological diseases and research, as I thought it was the one way in which I, as a person with Lewy Body Dementia could help.

My idea was that unless those with these illness do something tangible to help researcher’s now, it may take a lot longer to find answers to any form of cure to things like dementia.

I know that this illness cannot be cured at present, but we have to have hope for those being diagnosed in the future.
I also know that there is little chance of a cure for me, but at least there is a chance of finding something for other people in times to come.

We all know that there are medications which can slow some variations of these illnesses down but nothing as we know it can stop it, or at least nothing is recognised as a treatment to stop it.

While medications work for some people they do not work for all, which can be distressing for those with the illness and family members watching. Some illnesses have no treatment at all, to either slow it down and make life that little bit easier.

But like everyone else who has an illness like this, we will try anything which will extend our lives for that little bit longer, and why not.

I suppose we have one major problem with research into some of these illnesses, and that is things like dementia are not what many call trendy diseases and therefore many companies will not get involved.
As well as that trying to find a cure for dementia is not as easy as finding cures for other major illnesses and therefore it takes a lot of money to get the research off the ground.

Groups like DeNDRoN Dementia and Neurological Diseases Research Network are one group who invite patients to get involved at local and national level, and to get involved with projects looking into future research work.


Some may think it all about being part of research, but its also being involved with PPI groups, Patient Public Involvement, where we can look at future research projects,  while at the same time meeting new friends and learning about our own illness as we progress

They can sometimes get a person into Clinical Trials for new drugs which are usually run in the regional centres around the UK.


Although as I am on medication which was prescribed early on in my illness, I don't really wish to come off it to try something else, unless I know it will make life better.

I have had the privilege to be involved with many meetings and conferences where I have spoken about life with dementia, and will hopefully continue to do so if I can help groups like DeNDRoN.


But we must remember that we would not get anywhere in research without people like DeNDRoN.

It is my own theory that if we don’t get involved and try to help, how can we possibly expect others to perform miracles and come up with cures in the future.

I have also donated my brain to the brain bank when I die, so that it may help research in the future.
This is another brilliant cause and we should all embrace it.

I would encourage anyone with an neurological illness who is genuinely interested in helping, to get in touch with DeNDRoN or some other organisation to see what is possible.

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