FTD and also now MND

[Sringtime]

Hello All,
It is a few months since I last posted on here. The reason for that is in September my husband who had originally been diagnosed with Vascular Dementia was finally diognosed with Frontal Temporal Dementia with Motor Neurone Desease. So we have spent many hours in hospitals and waiting rooms plus needing time to come to terms with this horrendous diagnosis.
I have decided I must post on here again as I studied for a Dementia examination, I became a Dementia friend. But, have only since September realised how very misleading the understanding of Dementia is. Because there are so many people who still think Dementia is Alzheimers and that its only Alzheimers. People link it straight away to forgetfulness and getting lost.
It makes me so frustrated because there are many many types of dementia FTD being one of them that does not manifest itself in this way at all.
I have today wrote an explanation to all my friends on FTD Dementia and how it has affected my husband so that they understand he doesn't get lost, his long term memory is outstanding. But there are many things that have changed on our journey. And finally he has this evil MND which is relentless and terrible.
But can I please urge everyone to think about calling it another name not The Alzheimers Society, because the name paints the wrong picture. And if your loved one had FTD you would know this. Why oh why can't it be called the Dementia Society which then envelopes all the Dementias.

Frustrated

 

[malc]

it's possibly called the alzheimer's society because of people in the streets lack of knowledge about dementia and all its types,the general public are the ones that need to know what they are donating their money to ie something they recognise,i personally know the difference because my dad had alzheimer's and so has my wife,i always tell people i'm an expert in something i never wished to know anything about and still wish i didn't.it probably will change it's name eventually like scope did because of the changes in peoples awareness and attitudes.

 

[Sringtime]

it's possibly called the alzheimer's society because of people in the streets lack of knowledge about dementia and all its types,the general public are the ones that need to know what they are donating their money to ie something they recognise,i personally know the difference because my dad had alzheimer's and so has my wife,i always tell people i'm an expert in something i never wished to know anything about and still wish i didn't.it probably will change it's name eventually like scope did because of the changes in peoples awareness and attitudes.

Hi Malc,

Thank you for reply, but my point is that more people are aware of Alzheimers than ever before, which is excellent but along the way of making people aware we have forgotten to make them aware that there are many types. And all these signs we are asked by the media to look for is only covering Alzheimers and not other dementia's. If If I had been better informed by the various types of Dementia and the different signs and symptoms I would probably not have had all those years of trying to figure out what was wrong and experiencing the heartache of not knowing. I feel the sooner the better the name is changed to encompass all types of Dementia.

 

[deita2]

Hello All,
It is a few months since I last posted on here. The reason for that is in September my husband who had originally been diagnosed with Vascular Dementia was finally diognosed with Frontal Temporal Dementia with Motor Neurone Desease. So we have spent many hours in hospitals and waiting rooms plus needing time to come to terms with this horrendous diagnosis.
I have decided I must post on here again as I studied for a Dementia examination, I became a Dementia friend. But, have only since September realised how very misleading the understanding of Dementia is. Because there are so many people who still think Dementia is Alzheimers and that its only Alzheimers. People link it straight away to forgetfulness and getting lost.
It makes me so frustrated because there are many many types of dementia FTD being one of them that does not manifest itself in this way at all.
I have today wrote an explanation to all my friends on FTD Dementia and how it has affected my husband so that they understand he doesn't get lost, his long term memory is outstanding. But there are many things that have changed on our journey. And finally he has this evil MND which is relentless and terrible.
But can I please urge everyone to think about calling it another name not The Alzheimers Society, because the name paints the wrong picture. And if your loved one had FTD you would know this. Why oh why can't it be called the Dementia Society which then envelopes all the Dementias.

Frustrated

I am in the early days of coming to terms with my husbands diagnosis of FTD. I am finding the same that people do not understand dementia as a terminology and clump it all under alzheimers. I would love to read your explanation to your friends of how it has changed your lives, and what you said to hope it will explain to them in some way. I find family want to help, but I can't tell them, as I am so tearful, angry and independent.

 

[Grannie G]

Hello sringtime

It is known FTD is a form of dementia which has very different symptoms to Alzheimer`s and it is also known the only people who are aware of this are those directly involved and those of us who have learnt, by reading about it on TP.

The term dementia is becoming more widely used as a blanket term and as diagnosis improves and now we have Dementia Friends and Dementia Champions, perhaps the word will lose it`s stigma .

 

[Onlyme]

To my Mum's generation the word Dementia means that dreadful phrase Senile Dementia which lead to someone being 'put away' in an asylum. Some found Alzheimer's a much nicer name to call their illness. Unfortunately even that was too strong for some who now have 'memory issues'.

Whatever we call the decease now things will move on and another name will turn up. I would rather that one name is stuck to rather than rename itself some organisations have done.

 

[Sringtime]

I am sorry and don't wish to come across as awkward. But I have to reiterate that as long as it is called The Altzheimers Society people will keep associating all types of Dementia as Altzheimers.
If you have a loved one that suffers from a different type of Dementia than Altzheimers you will be only to aware of the constant explaining to people what your loved ones suffers from and how it is very very different from Altzheimers.
People are becoming enlightened but to Altzheimers and not the other forms of dementia which is defeating the object of the excercise. Lets get the name right so that it encompasses ALL the dementias.

 

[Trev_1962]

Frontotemporal Dementia with Motor Neurone Disease

Frontotemporal Dementia with Motor Neurone Disease is very rare (2 in 100,000) It is very hard to diagnose, up to 12 months and only around 5000 people in the UK suffer this terrible disease(s) at any one time.

Prognosis is not good at around 2 years or less.

How do I know?

My wife is 1 of the 2 in 100,000 and was diagnosed on the 23rd December 2014 at the age of 68.