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Discussion in 'I have dementia' started by Chebs, Jul 17, 2018.
I'm new to this site, diagnosised with FTD in 2017 just feel strange about diagnosis??
Welcome to TP @Chebs.
I’m sorry to hear about your diagnosis. I hope you find the forum helpful.
Hello @Chebs, welcome to TP from me too.
If you have any questions, or just wish to explain feelings, just post again. The members here are a friendly, informative and supportive group.
If you can follow this link you can read the Factsheet about FTD if you wish https://www.alzheimers.org.uk/sites...factsheet_what_is_frontotemporal_dementia.pdf
Hi Cat27, Any information is an assest, so look forward to looking and having an input on this forum
Take care Chebs
Hello @Chebs, I will be very interested to know how you are feeling. My mum has just been diagnosed with FTD at 80 and she tries to tell me how she feels but finds it difficult to explain. She says she feels 'different', not herself and that her brain is not telling her what to do, hence her not being able to complete tasks like putting her shopping away etc.
Take care and keep posting xx
I was diagnosed 2016 at 56, after lots of tests etc... lately I can relate to what your mum is trying to say.. I forget to carry out a task and lately I forget to go toilet!! just dont get the message from my brain, lucky for me my husband Alan is an ex paramedic, so he's noticed my lack of toilet stops and reminds me..I sometimes say to Alan I feel different not myself, maybe its to do with loss of brain matter?? will ask my conslutant when I see hime in Dec.
I will let you know what he says...
take care and your mum
Hi if it helps I was diagnosed in 1999 with Alzheimer’s and 2003 with FTD after several tests and a PET brain scan ect but it have never worried me and almost 20 years later I can still reply to your post so not all doom and gloom my friend
="Chebs, post: 1553360, member: 75244"]I'm new to this site, diagnosised with FTD in 2017 just feel strange about diagnosis??[/QUOTE]
It is good to have a positive story. It really emphasises how everyone is different and there is hope in action.
Thanks so much and you too! xx
It is good to have a positive story. It really emphasises how everyone is different and there is hope in action.[/QUOTE]
Yes, so good to hear x
Hi I think this could be a problem with a lot of people diagnosed with FTD I have FTD for almost 20 years and although I’m fairly act and still drive like other FTD suffers I am unable to use Cash machines, Car parking meter or and self service system personally in my case I this it paranoia and frustration paranoia because I think someone my be getting my details and frustration because I should be able to do in my own mind usually at home I can work a problem eventually but takes time and keeps my brain active as for Car parking meters well there’s always someone getting a ticket who will help all you need is Please & Thankyou job done as I said I have been coping well with FTD just make a few adjustments
When there’s loads of people my age who died recently with Cancer FTD isn’t so bad
Love your attitude @Countryboy
Thanks Cazzita I understand everyone with the same diagnoses reacts differently and apparently reading various bit of information,, Currently, there is no cure for FTD. Treatments are available to manage the behavioural symptoms.
Ok when diagnosed a person probably gets some advice and possibly medication from the medical professionals hopefully support from family they may join a dementia day group and spend time with people dementia or in a similar situation that ok, but for me personally my approach after the diagnoses which at first was Alzheimer’s age 57 three years later FTD I took stock of the situation and thought my parents lived until there were in their nineties I could be here for another 30 years I must accept that I have dementia/FTD get what medications don’t dwell on it or listen to doom & gloom got to move on although you can’t forget you have it I must not worry about it either I need to continue working until my retirement age 65 also carry on with my active day to day life and ignoring all the bureaucrats who think they know “best” FTD hasn’t stoped my brain from working just a few minor hiccups plus it’s my life I’m only here the once if because of my FTD If I’m not poetically correct or I offend others from time to time well Unlucky I not bothered
Hi everyone I hope you don’t mind me tagging on to this thread. I was diagnosed earlier this year with FTD & was wondering if anyone else often thinks there’s nothing wrong with them and that they’ve been wrongly diagnosed? I’m not sure if it’s just because it’s too hard to believe?
I admire your spirit @Countryboy and wish you luck on your journey. It is so helpful to be able to connect and converse with people who know what it's like to have FTD and are willing to share it.
Thanks for sharing.
Hi @PJ. It will be interesting to find out. I know my mum still does not think anything is wrong with her and that the experts must have it wrong! Unfortunately, looks like it is exactly the right diagnosis
Thank you for your reply. I’m so sorry to hear about your mum. I wish you all the best
Thanks @PJ and you too. Keep us posted on how you are doing/feeling. Do you feel that you have been wrongly diagnosed? x
Hi @Cazzita yes I’ve been thinking that way lately. I mentioned it to my dementia support worker this week & she said although it can happen it’s most likely my dementia making me think that way. It does play tricks with me When I’m having a good day I really wonder
Hi found this about FTD on NHS website as this confims were not all the same but after almost 20 years with FTD i can relate to what written
Frontotemporal dementia is an uncommon type of dementia that mainly affects the front and sides of the brain (frontal and temporal lobes) and causes problems with behaviour and language.
Dementia is the name for problems with mental abilities caused by gradual changes and damage in the brain.
Dementia mostly affects people over 65, but frontotemporal dementia tends to start at a younger age. Most cases are diagnosed in people aged 45-65, although it can also affect younger or older people.
Like other types of dementia, frontotemporal dementia tends to develop slowly and get gradually worse over several years.
Symptoms of frontotemporal dementia
Signs of frontotemporal dementia can include:
· personality and behaviour changes – acting inappropriately or impulsively, appearing selfish or unsympathetic, neglecting personal hygiene, overeating, or loss of motivation
· language problems – speaking slowly, struggling to make the right sounds when saying a word, getting words in the wrong order, or using words incorrectly
· problems with mental abilities – getting distracted easily, struggling with planning and organisation
· memory problems – these only tend to occur later on, unlike more common forms of dementia, such as Alzheimer's disease
There may also be physical problems, such as slow or stiff movements, loss of bladder or bowel control (usually not until later on), muscle weakness or difficulty swallowing.
These problems can make daily activities increasingly difficult, and the person may eventually be unable to look after themselves.
Getting medical advice
See your GP if you think you have early symptoms of dementia. If you're worried about someone else, encourage them to make an appointment with their GP and perhaps suggest you go with them.
Your GP can do some simple checks to try to find the cause of your symptoms, and they can refer you to a memory clinic or another specialist for further tests if needed.
Read more about getting a dementia diagnosis.
Tests for frontotemporal dementia
There's no single test for frontotemporal dementia.
The following may be needed to make a diagnosis: an assessment of symptoms – it's normally helpful to have somebody who knows the person well to give an account of their symptoms, especially as someone with frontotemporal dementia may not be aware of changes in their behaviour an assessment of mental abilities – this will usually involve a number of tasks and questions
· blood tests – to rule out conditions with similar symptoms
· brain scans – such as an MRI scan, a CT scan or a PET scan;these can detect signs of dementia and help identify which parts of the brain are most affected, or help rule out other problems with the brain
· lumbar puncture – to test the spinal fluid; this may be useful to rule out Alzheimer's disease as the cause of symptoms
Treatments for frontotemporal dementia
There's currently no cure for frontotemporal dementia or any treatment that will slow it down.
But there are treatments that can help control some of the symptoms, possibly for several years.
· medicines – to control some of the behavioural problems
· therapies – such as physiotherapy, occupational therapy, and speech and language therapy for problems with movement, everyday tasks and communication
· dementia activities – such as memory cafés, which are drop-in sessions for people with memory problems and their carers to get support and advice
· support groups – who can offer tips on managing symptoms from dementia experts and people living with frontotemporal dementia, and their families
Outlook for frontotemporal dementia
How quickly frontotemporal dementia gets worse varies from person to person and is very difficult to predict.
People with the condition can become socially isolated as the illness progresses. They may not want to spend time in the company of others, or may behave in rude or insulting ways.
Home-based help will usually be needed at some stage, and some people will eventually need care in a nursing home.
The average survival time after symptoms start is around eight years. But this is highly variable and some people live much longer than this.
If you or a loved one has been diagnosed with dementia, remember you're not alone. The NHS and social services, as well as voluntary organisations and specialist support groups, can provide advice and support for you and your family.
Causes of frontotemporal dementia
Frontotemporal dementia is caused by clumps of abnormal protein forming inside brain cells. These are thought to damage the cells and stop them working properly.
The proteins mainly build up in the frontal and temporal lobes of the brain at the front and sides. These are important for controlling language, behaviour, and the ability to plan and organise.
It's not fully understood why this happens, but there's often a genetic link. About one in every three people with frontotemporal dementia has a family history of dementia.
If you have a family history of frontotemporal dementia, you may want to consider talking to your doctor about being referred to a geneticist and possibly having a genetic test to see if you're at risk.
There's a lot of research being done to try to improve understanding of the causes of frontotemporal dementia so treatments can be discovered.
If you're interested in helping with research, you can speak to your doctor or register your interest on Join Dementia Research.
Other names for frontotemporal dementia
Doctors sometimes use different names to describe frontotemporal dementia. These include:
· FTD ,Pick's disease ,frontal dementia ,frontotemporal lobar degeneration ,behavioural variant frontotemporal dementia ,primary progressive aphasia ,semantic dementia ,progressive non-fluent aphasia