The long Road

Norrms

Registered User
Feb 19, 2009
5,631
0
Torquay Devon
A Long Road
It may well be a long road, but most of the time I don’t mind. I have lived with dementia for 11 years now and so many people tell me of their stories about how loved ones only live six or seven years after diagnosis, and each time I hear them I quietly weep inside for those we have lost to such a cruel disease. Some even look at me with a puzzled look and say 11 years?? How can that be? Well, the good news is since I was diagnosed I have always been a believer of “You wouldn’t go to war without knowing your enemy would you? So as well as building up a worldwide dementia group, I have also spoken to and made friends with many people around the world and the first thing I did learn is there are so many living with dementia after, 15, 20 and even 25 years !!! I know! Incredible isn’t it but all perfectly true. Is there an answer to this? Sadly not and here’s why…..

There are so many named variations of dementia and then, in my humble opinion variations within variations and what I mean by that is as an example, we have the flu virus, but there are 1000s of flu virus out there, and I believe the same applies to dementia. I have the Lewy body’s type dementia, but that doesn’t mean I have exactly the same symptoms as the next person diagnosed with Lewy body’s dementia, similar in some parts? Yes of course, but never exactly the same, and that is the reason I believe some live longer than others. In the dementia world there is a saying that once you have met one person with dementia you have met one person with dementia and that’s so true. You have to remember even though the building blocks of the brain are all the same, the information that’s collected in it over a life time is completely different to anybody else’s because of your own personal life’s experiences. We all act differently; we all talk and think differently we all have different tastes, we certainly all see things differently. If you have ever been to a football/ cricket match with thousands of other we all watch a different game. That’s because we are all Unique, so when dementia invades your brain it will react differently, one size does certainly fit all. That’s why I believe (Again in my humble opinion) is why its so difficult to find a cure for this awful disease.
I believe there is no point in looking for a cure for say the Alzheimer’s strain in general, or Lewy body’s, or vascular dementia etc , a bold statement I know but please bear with me, I believe we
should find out how many approx. strains of Alzheimer’s etc. there is and concentrate on the one that is most prevalent and work from there. This would give is a better opportunity to understand how the other strains work. Of course as I said this is my humble opinion and I am in no way, shape or form an academic but what I am is someone who actually lives with this disease and sees first- hand what is going on around me by being in touch with so many across the world who have been touched by this disease.
Talking of touched, I was approached by someone who said to me their wife had a “ touch “ of dementia, when I asked is that the same as being a “Touch “ pregnant they looked bemused??
We still have a long road to walk my friend
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,363
0
Newcastle
Hi @Norrms and thank you for sharing such a thought-provoking item. There is so much about all types of dementia that we do not understand. As for not being an academic, to my mind there is nothing more valuable than speaking from one's own lived experience.
 
Last edited:

Lawson58

Registered User
Aug 1, 2014
4,302
0
Victoria, Australia
A Long Road
It may well be a long road, but most of the time I don’t mind. I have lived with dementia for 11 years now and so many people tell me of their stories about how loved ones only live six or seven years after diagnosis, and each time I hear them I quietly weep inside for those we have lost to such a cruel disease. Some even look at me with a puzzled look and say 11 years?? How can that be? Well, the good news is since I was diagnosed I have always been a believer of “You wouldn’t go to war without knowing your enemy would you? So as well as building up a worldwide dementia group, I have also spoken to and made friends with many people around the world and the first thing I did learn is there are so many living with dementia after, 15, 20 and even 25 years !!! I know! Incredible isn’t it but all perfectly true. Is there an answer to this? Sadly not and here’s why…..

There are so many named variations of dementia and then, in my humble opinion variations within variations and what I mean by that is as an example, we have the flu virus, but there are 1000s of flu virus out there, and I believe the same applies to dementia. I have the Lewy body’s type dementia, but that doesn’t mean I have exactly the same symptoms as the next person diagnosed with Lewy body’s dementia, similar in some parts? Yes of course, but never exactly the same, and that is the reason I believe some live longer than others. In the dementia world there is a saying that once you have met one person with dementia you have met one person with dementia and that’s so true. You have to remember even though the building blocks of the brain are all the same, the information that’s collected in it over a life time is completely different to anybody else’s because of your own personal life’s experiences. We all act differently; we all talk and think differently we all have different tastes, we certainly all see things differently. If you have ever been to a football/ cricket match with thousands of other we all watch a different game. That’s because we are all Unique, so when dementia invades your brain it will react differently, one size does certainly fit all. That’s why I believe (Again in my humble opinion) is why its so difficult to find a cure for this awful disease.
I believe there is no point in looking for a cure for say the Alzheimer’s strain in general, or Lewy body’s, or vascular dementia etc , a bold statement I know but please bear with me, I believe we
should find out how many approx. strains of Alzheimer’s etc. there is and concentrate on the one that is most prevalent and work from there. This would give is a better opportunity to understand how the other strains work. Of course as I said this is my humble opinion and I am in no way, shape or form an academic but what I am is someone who actually lives with this disease and sees first- hand what is going on around me by being in touch with so many across the world who have been touched by this disease.
Talking of touched, I was approached by someone who said to me their wife had a “ touch “ of dementia, when I asked is that the same as being a “Touch “ pregnant they looked bemused??
We still have a long road to walk my friend
That reminds me of when my husband was told by the consultant that he had Alzheimer’s. He was quite relieved that he only had a ‘little’ bit of Alzheimer’s as he had been really worried by all the testing.

My experience of being a carer is much the same as yours about dementia in general. My husband was told that he had ‘atypical’ AD initially and that was over eight years ago. Then it was frontovariant then non amnesiac before the consultant decided to call it non classical because he really didn’t know what it was. Finally just before Christmas the consultant said that my husband was now non diagnosed.

I know my husband has some form of dementia but nothing I read informs me of what it might be. And now it doesn’t really matter anymore.

Thank you so much for your long informative posts. They are always thoughtful and kind and I know you are an inspiration to so many.
 

annieka 56

Registered User
Aug 8, 2022
244
0
A Long Road
It may well be a long road, but most of the time I don’t mind. I have lived with dementia for 11 years now and so many people tell me of their stories about how loved ones only live six or seven years after diagnosis, and each time I hear them I quietly weep inside for those we have lost to such a cruel disease. Some even look at me with a puzzled look and say 11 years?? How can that be? Well, the good news is since I was diagnosed I have always been a believer of “You wouldn’t go to war without knowing your enemy would you? So as well as building up a worldwide dementia group, I have also spoken to and made friends with many people around the world and the first thing I did learn is there are so many living with dementia after, 15, 20 and even 25 years !!! I know! Incredible isn’t it but all perfectly true. Is there an answer to this? Sadly not and here’s why…..

There are so many named variations of dementia and then, in my humble opinion variations within variations and what I mean by that is as an example, we have the flu virus, but there are 1000s of flu virus out there, and I believe the same applies to dementia. I have the Lewy body’s type dementia, but that doesn’t mean I have exactly the same symptoms as the next person diagnosed with Lewy body’s dementia, similar in some parts? Yes of course, but never exactly the same, and that is the reason I believe some live longer than others. In the dementia world there is a saying that once you have met one person with dementia you have met one person with dementia and that’s so true. You have to remember even though the building blocks of the brain are all the same, the information that’s collected in it over a life time is completely different to anybody else’s because of your own personal life’s experiences. We all act differently; we all talk and think differently we all have different tastes, we certainly all see things differently. If you have ever been to a football/ cricket match with thousands of other we all watch a different game. That’s because we are all Unique, so when dementia invades your brain it will react differently, one size does certainly fit all. That’s why I believe (Again in my humble opinion) is why its so difficult to find a cure for this awful disease.
I believe there is no point in looking for a cure for say the Alzheimer’s strain in general, or Lewy body’s, or vascular dementia etc , a bold statement I know but please bear with me, I believe we
should find out how many approx. strains of Alzheimer’s etc. there is and concentrate on the one that is most prevalent and work from there. This would give is a better opportunity to understand how the other strains work. Of course as I said this is my humble opinion and I am in no way, shape or form an academic but what I am is someone who actually lives with this disease and sees first- hand what is going on around me by being in touch with so many across the world who have been touched by this disease.
Talking of touched, I was approached by someone who said to me their wife had a “ touch “ of dementia, when I asked is that the same as being a “Touch “ pregnant they looked bemused??
We still have a long road to walk my friend
I think your comments and insight are invaluable.
 

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