Why do you do this

[KenC]

I am always being asked why I allow my life to be exposed to the public as a person with Dementia. It may seem Strange enough to many, but I now have a reason to fight for those less fortunate than myself.

I was lucky enough to be diagnosed with early onset Dementia.

I was then very lucky to have been offered the medication which many have now been refused.

After this I met and got involved with the Alzheimer's Society at Branch and then National Level.

I meet many influential people, members of the royal family, Medical Professors. Members of Parliament, the general public, and last but not least I meet members of Talking Point at events, and that is a wonderful experience.

I spend countless hours in the press radio, tv and the newspress, covering most topics where Dementia is concerned.

But the real reason I do all this is because I was fired up in the first instance, that I was lucky to be given the medication that others were refused and I was diagnosed early on. I feel that many are not being given there rightful chance, and in this society I think it is wrong.
But since my medication kicked in and my life came back, I have had a reason to get out of bed and fight, not just for me but for everyone else with this illness. The Society was good enough to give me a role in and it was here that I came across Talking Point. This role gives me the will power and the reason at present to get out of bed and fight this illness, and all that goes with it, and if there is one thing I really like seeing, it is when others realise that there can be a life with dementia, if they are lucky enough to be able to do it like me.
I have a wonderful wife who has a lot to put up with, especially when I am having a bad day, but she is always there for me and goes around on my travels with me as support.
Occassionally I get it in the neck because I am always on Talking Point or using the computer and she can not get anywhere near to the computer. But through both the Society and Talking Point we have been able to do many things that would have been unthinkable with out all the support and kindness we have had on our journeys.
It gives me a lot of pride talking about these two groups of people, many of whom are having torrid times looking after loved ones.
Yes it is hard being in the public domain at times, but this is the real reason why I and many others around the country get involved like this. We have to raise the profile of those with dementia, remove the stigma and help others as much as we can while we can.
One day I will have to give all this up and someone else who has been lucky will follow me, and thats all we can hope for.

Best Wishes

Ken

 

[Stressed]

Good for you, as a carer of my wife who is also diagnosed with early onset, I appreciate what you and other's like you are doing. My wifes illness has affected her ability to communicate so we rely on you to spread the message - Well done and keep up the good work for as long as possible.

Stressed - Coventry

 

[connie]

Bless you Ken for all that you do, and for being a 'voice' especially for those who have the illness so young.

Funnily enough I was only thinking about you today, and your ability to communicate to many just 'how it is for you'.
Knowing that Lionel kept his insight into this insidious disease for such a long time, and how it enabled him to contribute to his own long term care plan, does make you realise that you have to look to the positive side.

One day I will have to give all this up and someone else who has been lucky will follow me, and thats all we can hope for.

Brave words Ken, and I wish you many years yet, we are all in your debt.

 

[Skye]

We have to raise the profile of those with dementia, remove the stigma and help others as much as we can while we can.

Well said, Ken.

You know I have immense admiration for what you and Janice do to raise awareness.

It's so important that people know that a diagnosis of dementia does not mean the end of normal life and pleasure.

That people with dementia are still people, and have feelings like the rest of us.

And that to be fully beneficial, medication needs to be given from day one, not when the chances of a normal life have already begun to disappear.

I hope you continue what you are doing for years to come, Ken, and I hope that others will be inspired to join you.

It's a worthwhile fight.

Love to you both,

 

[KenC]

I am only one in a small team of people in this country, who do their best to help and inspire others. Talking Point is one place that we can help, and there two of us here that I know of, who want to help where and when ever we can.
Others have not been as lucky as us, and this illness is devastating when it hits, and therefore we want to help and encourage others to become more involved where ever and while we can. If they can be encouraged and helped to do something like this, it does help.

Best Wishes
Ken

 

[Grannie G]

Dear Ken

What is so wonderful about you Ken is that you still have a purpose in life, even after diagnosis. The diagnosis in itself is enough to traumatize most people.

It takes a very special person to be able to keep the morale going, and in helping others, I`m sure you are helping yourself.

I hope you have the strength to `do this` for many years to come.

And I thank you for doing for my husnband and others like him, what they are unable to do for themselves.

Love xx

 

[hendy]

Dear Ken
It was so moving to read your post. I think you have chosen to view the positive in everything. There is much for everyone to learn from your attiude Ken. I want to thank you, and I know if he could Dad would, for your efforts to raise awareness for all dementia sufferers.
take care
hendy

 

[Canadian Joanne]

Dear Ken,
Your positive attitude is a beacon of hope for all of us, here on TP and in the world at large. I am so impressed with what you have accomplished. You are a role model for us all.
Love,

 

[jc141265]

Thank you Ken.
My Dad in his time took part in trial medications that were unlikely to fix him but he felt at least if it didnt help him it might help others in the future. He also got to talk to the Prime Minister of Australia at a local function (we live in Oz) to stress the importance of politics being open to research such as stem cell research. He was very very keen to use his illness to help those coming after him, he never felt that there was seriously much hope for him...but I think also he was concerned that us kids might have to face it one day because of the genes he passed onto us, and that really made him desperate to do the most he could when he could.
So thank you Ken for carrying on the fight that Dad is no longer able to. If there is anything that might also give you hope is that Dad has now had this disease for more than 10yrs, and although its made a mess of him, I feel certain in my heart that he is still fighting and he must really annoy this disease with his refusal to give up!
Its always a good feeling to get one up on Al.

 

[jackie1]

You are a real inspiration.

Love

Jackie

 

[Kate P]

Ken,

I am always being asked why I allow my life to be exposed to the public as a person with Dementia.

I am astonished that anyone would ask that. I applaud you for what you do and the awareness that you raise.

How are people to know and understand if people like yourself hide yourself away from the world. Also why should you? You have an illness and I admire you more than I could ever express in words for the work that you do.

I think that there are so many things in the world that are not talked about, when removing the "status" of them by talking about it would do so much good for so many. It could help to remove the fear and myths and assumptions that are made.

From my personal experience I find that when I talk about my postnatal depression people clam up and look uncomfortable and assume I must have been like a chacter from some TV soap - I do feel that portrayal of these things in soaps and such like is generally very unhelpful and does more harm than good.

I applaud you and I would hold a virtual ticker tape parade in your honour if I could get this silly machine to do anything I asked it to!!

 

[KenC]

I do get a tremendous amount out of this in knowledge and enjoyment, especially when I meet famous people and Talking point members.

It is very hard work because there are weeks, like the next one, where we are at 5 events around London in 6 days, so in the end we are away for around 10 days before I get back home. But the thing that gives me a real buzz is when I do something which, helps those out there whether it be a person with this illness or their carer's. That means more than any award that can be given, because I really feel that I have achieved something good.

Best Wishes

Ken

 

[Linda Mc]

Ken recently attended the North Wales Forum and below is an extract from the minutes:

A presentation was given by Ken Clasper on his experiences since his diagnosis in 2003 with Lewy Bodies. Ken is a member of the Living with Dementia working group; a national group with 20 members, working to achieve the rights of people with dementia and challenge the stigma. The group have been in involved with:

• The Helpcard
• Launch of the Dementia UK Report
• Holiday Insurance for people with dementia
• Society’s website – talking point
• Media work
• 1st and 2nd UK Convention for people with dementia
• Living with dementia survey report

An extremely interesting presentation which generated a great deal of discussion. All present found Ken’s talk an inspiration and felt encouraged to find ways of living with dementia.

I attend this forum and it was good to meet with Ken and Janice again. I have tremendous respect for both of them and the work they do on behalf of us all.

Thanks Ken.

Linda x

 

[Margarita]

But the real reason I do all this is because I was fired up in the first instance, that I was lucky to be given the medication that others were refused and I was diagnosed early on. I feel that many are not being given there rightful chance, and in this society I think it is wrong.
But since my medication kicked in and my life came back, I have had a reason to get out of bed and fight, not just for me but for everyone else with this illness

Well said Ken , I do admire your fighting spirit courage . I'm so pleased to read that the late stage medication was given to you & has kick in & working for you like it has for my mother xx