ARTICLE IN THE HERALD EXPRESS Torbay
Thursday Jan 31st 2013
Yesterday, Dr Peter Moore, a retired and much respected Dr Here in Torbay wrote the column below in Thursday’s Herald Express Torquay Jan 31st 2013. I would urge you ALL to click on this link, please read and let me know your thoughts.
http://www.thisissouthdevon.co.uk/Early-diagnosis-best/story-18012823-detail/story.html
When I first read this yesterday I expressed my disgust on my face book page and then later went to a meeting where this was brought up. I heard from friends about what a good Doctor Peter Moore is. On returning I also read about how he was also a very sympathetic Dr to people within a care home setting who have/had Dementia. I have since slept on this as I am not one who is prone to knee jerk reactions and these are my own thoughts on this.
As someone who was in rapid recline regarding my own dementia and had almost lost the will to live, to be given drug`s like EBIXA and Exelon, only to find within 8 weeks, my stuttering and stammering had stopped, I had stopped falling, putting my hot tea in the fridge, tried to clean my teeth with my razor and putting shaving foam instead of shampoo on my head (just a few weird and wonderful things I used to do PRIOR to medication) how can anybody say, with conviction
Quote : They are not a cure (ok I can live with this, but ) and sadly do not slow down the disease ??? Unquote
I would Ask Dr Moore to please contact me and set up a meeting with me so I can show him that these drugs DO WORK and DO SLOW DOWN this awful disease for some. I must just add, sadly they do only work for some and not all. In some extreme cases people have actually had their driving Licences reinstated after a re test!! How can he say they are not effective?
Since being diagnosed and receiving these drugs I, and others with this awful disease have spent time, planning for our future, YES OUR FUTURE!! We do have one you know!! We have also made plans so our loved ones are not left with all the worry and stress of what I want once I have departed from this life (After all it is a terminal disease FACT!!) We have spent such precious times with our children/grandchildren, educating them in this disease, showing them it’s nothing to be frightened of but just a disease just like any other that even though there is no cure, there is still hope and love to be had !!
What should I have done? Not been diagnosed early ? lets see what might have happened, I wouldn’t have been able to
1. Fight for everybody else who are touched by this disease to improve services.
2. Write FOUR BOOKS since diagnosis, three about Dementia and one children’s book!
3. Create a Global Dementia awareness Day or DAD day which is held every year in September (this is our third year)
4. Talk personally with the Prime minister “TWICE “about his dementia Challenge.
5. Create a Torbay Dementia Action Alliance and ensure that in the future Torbay will become one of the first Dementia friendly resorts in the UK/World.
6. Sit on Numerous Steering groups to try and improve the quality of lives for people just like me with this disease.
7. Create the world’s first “Planting Memories garden in a local care home which will bring both the community and the residents’ together.
8. Play a big part in the opening of the first ever memory cafe in the UNITED STATES OF AMERICA!! There are now between 60 and a 100 and still growing!!
Just to mention but a few of the things my wonderful family, friends and I have done in the last four years.
Also in the column the Dr asks
“Quote “ Do we really need to tell some they have a disease for which we have no effective treatment “ Unquote “
For once I am both speechless and mystified by this comment, so now my friends I will throw it open to you; please let me know what you think. A copy of this has also been sent to all in my TDAA group and also the newspaper in Question, I would politely urge others to do the same at
we await their response,
Best wishes, Norrms and family
Re:Cognition Health February 3, 2013 at 6:41 pm
We experience a wide spectrum of GP views on early diagnosis and treatment but it’s safe to say that:
1. Once they’ve had a patient accurately diagnosed with sub-type, stabilised on appropriate medication, offered care management support, and experiencing a better quality of life with their family, then they see the benefits of early diagnosis and start asking different questions like access to disease modifying drug trials for their patients
2. After our standard medical education talk, entitled “Dr, is my memory normal?”, a typical comment is “I think I need to send my mum/dad to you”
This is a complex area but with educational support, and after seeing the difference it can make to their patients, almost all of the GPs we’ve interacted with appreciate the benefits to their patients of proper assessment, diagnosis, treatment and care management support.
What they don’t like is pronouncements from “on high” telling them what to do. The way to engage them is through clinical education and letting them experience how much more can be achieved for their patients as every GP wants to achieve that
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