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Posted: Saturday, January 7, 2012 7:08 AM
Joined: 1/14/2015
Posts: 40463


Originally posted by: kenc

Hi I am a new member from County Durham in the England, who was diagnosed as having Lewy Body Dementia in 2003 at the age of 56.
I am a member of the Alzheimer's Society in England and also a volunteer, which I became in the hope that I can repay them for all the help and support they gave my wife and I after the diagnosis.
I spend a lot of time trying to help others who have been diagnosed, as I know what it is like to get a diagnosis like this and how devastating it can be to all in the family.

Best Wishes

Kenc
Anonymous
Posted: Saturday, January 7, 2012 7:08 AM
Originally posted by: Margi J

Carleen
you can also mix the tonic water with raspberry iced tea which is very good or any other juice for those who can't tollerate citrus.
i found that usually a drug is changed in name when they "tweak" it a bit. not enough to change the effects but not quite the same thing as orig. also those long generic names are crazy to try to remember. not good for us who have a hard time.
Anonymous
Posted: Saturday, January 7, 2012 7:08 AM
Originally posted by: Johanna C.

Dear Kenc: I also would like to add my warm welcome here to this Forum. You will meet many very dear people who truly understand what you are facing and will be a great source of support. This is a great place for asking questions, for receiving advice and information and often, a safe haven for emotional support which is such a big part of all this.

We are glad that you found us.
Anonymous
Posted: Saturday, January 7, 2012 7:08 AM
Originally posted by: Terry's daughter

Good morning Ken,
I believe the reason for the changes in Medication names is because we have a large population of uninsured in the U.S. Don't you have some sort of socialized health care?
In the U.S. when a new drug is released it is very expensive and not covered by alot of insurance companies. As demand increases and effectiveness is proven it becomes neccessary for a generic version of the same drug to be released in order for the pharmaceutical compapany to be able to sell to a broader base of people. This is a simplified explanation but I think it's the best way to explain it.
For Example when a heartburn medication called Prilosec was first introduced, it was only available by prescription and it was very expensive. Once it was proven and demand increased a new generic version was released and now anyone can buy it over the counter for less money without a prescription.
Anonymous
Posted: Saturday, January 7, 2012 7:08 AM
Originally posted by: Lisa 428

Dear Kenc,
Hello and welcome to the AD message boards. I'm sorry for what brings you here. Thanks for the kind words about this site. We want it to be open for all.
I've been luck enough to visit England on 4 different occasions. What a lovely old country! So many wonderful things to see. So much history!
I do believe you all have a kind of socialized medicine there. Is that correct? Is there an Alzheimer's Assn there? Is there a way for you to find others like yourself (dementia)? Sounds like it's time to band together and make some demands of your Queen and your government.
You may want to ask about getting medications from Canada or through drug companies here in the USA. I don't know how your system works but don't give up!
We're here for you. Please, come here often and let us know how you are doing.
Anonymous
Posted: Saturday, January 7, 2012 7:08 AM
Originally posted by: kenc

Hi Alan

Nice to hear from you and the others, this web site leaves our own Talking Point behind as there is a section here for people with the illness and another section for our carers.
Where we have a section for those with the illness, it is often looked at and moderated by carers, and there is no allowance for discussion privately by people with dementia, you also have moderators who have dementia which we do not, as they are all carers. Well done this is a brilliant web site.

Sadly the British Government has stopped treatment for those in the early stages of Alzheimer's and Dementia, through the National Institute of Clinical Excellence, who say that the medications are not cost effective and do not work on enough people. This is now being challenged in the high courts, so things may change in the future, or at least we all live in hope that they do.
As well as that we now have Terry Pratchet on our side and he has become in thorn in the Labour Governments side, as he is pushing for medication for all on the National Health Service.
Sadly the National Health service means different things to different people, as the treatment and access to medication varies across the United Kingdom, but Scotland Nothern Ireland and Wales seem to come ourt of this better than those in England.
I like many others were lucky enough to get medication before this Governement department was set up and we know that it does work, but as I have ben told our views do not matter any more.

The treatments that are being used are Aricept which seems to be used quite widely, along with Exelon and Reminyl, with Exiba on later stages.

As I have early onset Lewy Body Dementia I was put on Exelon by my Consultant, but she has now retired, and now the new consultant thinks I should be on Aricept, but I do not want to change as my medication is working alright at present, so why complicate things by changing. If I thought that my life would improve by changing medication, then I would seriously consider doing it.

I do not know anything about other treatments as the first consultant had looked into complementary medicines and warned us off them, as the was not enough evidence to prove that they worked.

But I think that many people will try anything in the hope that they can stop this illness in its tracks.


Do you have better access to these drugs whwere you live.
Anonymous
Posted: Saturday, January 7, 2012 7:08 AM
Originally posted by: kenc

Hello Again,
This sounds a nice place to be when you are diagnosed with this illness. I am a member of the UK based, Alzheimer's Society "Talking Point" which is similar to this, however that is mostly carers and not many people with dementia which is very sad. It does seem that in England there are not many people who will admit to having this illness due to the stigma which is bad in places.
I am also a member of the Living with Dementia Working Group, which tries to raise awareness of this illness in the hope that we can remove the stigma by trying to re-educate the general public, but this is a long slow job, as most people refuse to take notice. Having said that I found it very hard to accept the fact that I had an illness that was thought to be something that only the elderly got, little did I know at the time that many younger people get it like myself. I think it is a case of re-adjusting to a new way of life, which was easier than expected, but I suppose that was because I had early on set dementia and not a later stage of the illness.

I will be back soon.

Ken
Anonymous
Posted: Saturday, January 7, 2012 7:08 AM
Originally posted by: kenc

Hello Again,

I must confess that I have never heard of Namenda until I saw your post, so I really do not know what it is used for, but I will look it up when I am finished here.

It is strange how these drugs seem to change names after a while, and in some cases become a lot cheaper. This does not seem to happen over here, which is a bit odd, but there is probably a very good reason for that.

We learn something different every day.

Ken
Anonymous
Posted: Saturday, January 7, 2012 7:08 AM
Originally posted by: Carleen

Hello Ken,
I also was diagnosed with early onset Lewy Body Dementia at the age of 56, am now 58 and doing very well considering the diagnosis. I was started on Aricept 10mgs. daily with only brief bouts of nausea to begin with. I do have a few other side effects with the Aricept including bad dreams on occasion and severe muscles cramps in my legs. What helps me with the muscle cramping is drinking diet tonic water daily, since it contains Quinine. I don't mind the tast of tonic water, but I usually mix it with orange juice.

I hope to you are able to post on the board again sometime. It would be great to compare notes with you. Have a good day.

Take Good Care Of You

Carleen
Anonymous
Posted: Saturday, January 7, 2012 7:09 AM
Originally posted by: Alan in Colorado

Ken, could you say more about Alzheimer's & other dementias treatment in the UK? What medications are most used? What about alternative medicine?

So glad you're here, with your perspective from across the pond!
Anonymous
Posted: Saturday, January 7, 2012 7:09 AM
Originally posted by: kenc

Hi S.H.

I really don't know I can only think that each country has its own way of doing things.
Dementia has been left behind for many years over here and many still think of it being age related, so perhaps that is the answer.

Ken
Anonymous
Posted: Saturday, January 7, 2012 7:09 AM
Originally posted by: S. H.

Ken
What is the reason for that?
Anonymous
Posted: Saturday, January 7, 2012 7:09 AM
Originally posted by: Alan in Colorado

Ken, my experience with American doctors is that they give out many prescriptions. But, we have 10s of millions without insurance and not much money, so they get no medicine for the most part.

My own limited experience with drugs, Namenda has helped somewhat, with no side effects. But, Namenda just reset my clock to where I can write a little better, and talk meaningfully a little longer. I'll continue to get worse, but statistics show that with Namenda I'll get worse more slowly.

Is Namenda prescribed in your neck of the woods?
Anonymous
Posted: Saturday, January 7, 2012 7:09 AM
Originally posted by: SnowyLynne

Reminyl is now called Razadyne here in the states.The generic name is Galentimine & is alot cheaper here.........I take Galentimine...........Namenda was awful for me.I threw it away & told the Neuro NO MORE of that.........
Anonymous
Posted: Saturday, January 7, 2012 7:09 AM
Originally posted by: SnowyLynne

The side effects of Aricept will go away in a few months.....
Anonymous
Posted: Saturday, January 7, 2012 7:09 AM
Originally posted by: SnowyLynne

Too much narrow mindedness in other countries i think,or DENIAL!!!
Anonymous
Posted: Saturday, January 7, 2012 7:09 AM
Originally posted by: Carolina Songbird

Welcome to the message boards! I loved Durham when I visited there several years ago.

We will look forward to getting an English slant on the problems we all face. You will find this a very welcoming community with many people willing to share ideas, your joys and sorrows.

Please come back often!