Norrms

[norrms]

Definatley a year to remember, thank you so much for all your supoport my friends xxxxxx

Pride of Britain
http://youtu.be/OBhyiQdpKug

Number 10 Downing street
http://www.itv.com/news/westcountry/upd ... ggregation

[india77]

Happy New Year Norms..xx

[norrms]

Lets Make 2013 The year The World LISTENED !!

Dear all, may i just say on behalf of Elaine, myself and my family thank you for all the love, compassion and support you have given us over the last year and we only hope we can give the same back in 2013, We just weant to wish each and every one of you a Very Happy New year and good fortune for the coming year, as you can see by my new TAGLINE Lets make this year the year the world listened !! Much love to you all, Norrms, Elaine and family xxxxxxxxx

[norrms]

Later today I will write a letter to Alistair Burns, the UK Clinical Director of Dementia asking for the Unification of the Mini Mental Test within the UK. Last year I was aghast to learn that different trust`s around the UK ask differing questions and also some of the questions are, well, shall we just say, not very useful, the reason for this is as follows.

Dementia is a Terminal Disease!! No one has ever survived it!! Now,

No matter where you live in the UK, if you break a bone, you are given an X-Ray, that’s a “Given”

If you have heart problems? You are given an ECG that’s a “Given”

If you think you may have a clot on the brain? You have either an MRI scan or a CT scan, that’s a “Given”

And yet, if you are brave enough to actually make an appointment with your GP, and openly admit you are having memory problems which could lead to it being a terminal disease? You are asked a few questions to score out of 30 (Approx) and if you don’t score the recommended number you are sent on your merry way!!!
Why are so many people not diagnosed? Well, let me explain, Dementia as you know is “predominantly” short term memory loss and yet some of the questions that are being asked are questions like
“Who is on the Throne? The queen has been there for over 60yrs!!

Where do you live and name three streets around your house?
Suppose you have lived there TWENTY years +?
What car do you drive (if applicable) and believe me it is in a lot of cases!! Most people keep their cars for years!!

Yes, these are actual questions that are being asked. The questions that are not being asked are questions like

“How did you get here this Morning?
When did you last go on Holiday ?
What did you have for breakfast?
What Season is it now?
Where did you go last weekend? (if carer/wife is with them, and they should be at this stage in some cases)

Now for all of those in the Government that love Stats, facts and figures, how is it possible to correlate all the information to give a true reading of figures of people who have been diagnosed in the UK when there is such a variation in the questions, depending where you live? It’s just not possible? And, more importantly, how many people are being Miss diagnosed, or not diagnosed at all because the wrong questions are being asked??

I am not an academic, far from it, but I do know that after some research of my own, some of the questions in the Mini mental test are posed by professors and consultants, which is quite right, but!! Some of them are not relevant and the wrong conclusion is being arrived at tio the cost, of dare I say it, human life.

An overhaul and a Unification of Mini Mental tests all over the UK is what`s needed. These tests are given at a time when it crucial to get it right, if we don’t get this right, at the very beginning of this illness, then lives will be lost and families destroyed. If we do get this right, the benefits are immense, not only do we help people to come to terms with this awful disease, but to improve the quality of life for thousands if not millions when you include family and carers.

Now my friends, if this makes sense to me, and i was diagnosed with Dementia FIVE years ago???? Makes you think doesnt it ??

I will of course let you know of any outcome from this, but i hope they are listening, WHAT DO YOU THINK ??
Your views are always apprieciated, best wishes, Norrms and family xxxxx

[poppett]

Hi Norms,

Of course the memory test should be now based and not historic.

Mum suffered dementia for 16 years before she sadly passed away almost 7 years ago, but it was cancer which got her in the end.

She was happy in her own little world and when asked who the prime minister was (Mr Blair at the time) she announced."I don`t know his name, but he reminds me of Clarence the cross eyed lion." Much to the amusement of the medics and us. Have never seen Mr B since without a smirk on my face!

Mum also convinced a social worker she could manage perfectly well, feeding herself and Dad, laundry, cleaning, shopping and walking the dog every day before going to the shops and the library. Truth was at that time she hadn`t been over the door for seven years and the dog had been dad for fifteen, she was too blind to read for the previous ten years. Mum hadn`t done laundry or housework since I was five years old and I was taught to do it as if it was a daily game to be played, and I did all the ironing from the age of seven.

Mum knew there was something wrong, just not quite what, but was terrified of the workhouse, so we pulled together as a family to keep her at home. I wouldn`t change that, it was the right thing to do, but life could have been easier if more help was out there.

Take care of yourself and your lovely family Norms.xx

[Lazydaisy]

Norm,X-rays are done at the whim of a Dr.My grandson was not xrayed earlier this year,until a junior Dr persuaded the senior Dr that he should have an X-ray(he had just fallen 12 feet onto concrete).He ended up with his leg and arm in full plaster,but if the junior Dr had not stood his ground,then my grandson could have ended up with permanent damage to his bones.
My husband has also broken both a foot and a finger,neither of which was noticed in A and E,and both of which have caused the NHS more money in the longterm than if they had been dealt with properly to start with.
I agree about the questions to assess someone's mental health. My Dad had a fall,and they asked him really silly questions that everyone would know the answer to.It was about an hour after a fall, so not really an appropriate time to ask anyway.He was still in shock.
I hope Norm, that you have success with this letter.You and Elaine are amazing people,working so hard to educate the medical profession,politicans and the ordinary person in the street.

[Pete the Paint]

Yes well said Norrms,

I too thought the mental tests my wife had twice were a bit silly. She only answered half of them anyway. One was to spell WORLD backwards. Even I struggled with that one.

It was good to bump into you and Elaine the other day here in Teignmouth.

Good luck with it mate.

Pete. xxxx

[norrms]

Thank you Poppet, this is something i have had huge feedback from other forums as well so i will keep you posted xxxxxxxx

[malc]

my wife's short term memory in my estimation is between 6 to 8 minutes but just before christmas she scored 29 out of 30,with the clock being the question she stumbled on,which means nothing in my opinion,if they had asked a question then asked for an answer say 6 minutes later her score would of been very low,there needs to be a different way of assessing people,the here and now questions seem a good idea ie what did you have for breakfast etc.

[norrms]

Those Immortal words
“Nothing More Can Be DONE,

Yesterday I saw my consultant, yesterday I poured my heart out to him and Jan my Community Phcych Nurse, yesterday I asked for more help for Elaine,

“Yesterday, I admitted I was getting worse”

Those are words I thought I would never thought I would ever hear leaving my lips. Yesterday was such a day of mixed emotions as I almost shouted at them I would NEVER be beaten by this horrific Disease!! And yet, in gentle tones I begged for more to be done for Elaine to help her and I also asked, what was a LIFETIME FIRST for me, I asked for more medication. Only to be told that I was at the limit for Ebixa Intake, and also Exelon followed by the immortal words

“On the medication front, there is nothing more that can be done!!!”

It was like a thunderbolt from the blue, my heart sank so far and I almost felt as if my fight was ebbing away from me, seeping out of every pore. I have always thought there would be more medication to come, more that could be done, but NO.

This was swiftly followed up by “But there are medications that are being tested and MIGHT be available in a few years. I believed what they said, even though part of me did think they were just saying this to make me feel a little better because of the look of absolute desperation on my face. I have been fighting Dementia for 5 years now since being diagnosed and I am nobody’s fool. I lost both my father and wonderful grandmother to this disease so I am fully aware and at peace with my fate unless they find a cure, but that doesn`t help in the slightest when your told you are at the limit of your medication and its in the lap of the Gods from now on.
As far as the medication to keep me well is, I am at the end of the line! There, I’ve said it!!!!! BUT, and as you know there is always a very big BUT with me !! Does this mean I am giving up? Does this mean I will just ACCEPT my fate and fade away and await my ending?

WHAT DO YOU THINK!!!!

Like a boxer, I may have lost this round, but there is still a fight to fight, there are still many more rounds to go, and whilst I have hope in my heart and breath in my body, words at my fingertips and new ideas in my mind I will never giver give up!!
That’s a promise!!
Best wishes, Norrms and family xxxxxxxxxxx