Real stories

Me, my mum and frontotemporal dementia

Hello! I found your blog when looking for information. My mother was first diagnosed with PPA (Primary Progressive Aphasia) and then after about 3 years with that diagnosis the neurologist added FTD to her diagnosis . She is completely non-verbal now. It seems like it happened overnight, but actually was over a period of about a year and half. She did have a horrible fall in November and had a compound fracture to the leg. The broken leg and two weeks in the hospital seemed to really speed up her progression of decrease of skills. She was living independently in October to living in a memory care facility requiring help with daily routines in January. Thank you for sharing your story. This disease is horrible and I want to get all the time with my mom while I can and she knows who I am.

My dad recently passed away from FTD at the age of 66. He died from aspiration pneumonia. His symptoms progressed so rapidly in the last 5 months. He started falling, stopped caring too much about things, and when I talked to him It was as though a part of him was gone. I’m 34 years old and I’m now awaiting the results of dad’s genetic ftd test. I will soon know if he has the genetic markers for ftd and then get a blood genetic test myself to see if I have the same genetic defect. Such a scary time. I also recommend getting a baseline mri scan now to compare your brain to future scans and see if there is atrophy in the frontal and temporal lobes. We are having dads funeral this Saturday. Know you’re not alone and there are some possible cures on the horizon. Google Osaka researchers ftd nasal spray and you’ll see what I mean.

Hi. My dad was diagnosed with FTD. He is 78 and is considered moderate/severe. He is in Canada, as all my family are so I feel a little afloat. I’m thinking of asking his doctor if we can find out whether it’s familial. Has anyone else done this?

My mom was diagnosed with FTD but it was at 65 that they found it and not fully diagnosed till 74. Mostly it's been personality hygiene hording....over eating a little inappropriate talk in public. But my mom was always a little quirky. Recently she has been losing track of her thoughts in conversation or little details from recent history and a tick she has wth her hands.....I just haven't found anything that really describes my mom and otherwise she is so clear and still her. I hate reading all these stores that she might only have 8 yrs or ten years when she has been slowly progressing and not at all advancing so quickly. Any happy stories of patients living tilla 100 :)

If you are Carer for a family member & are on UC, Claim Carers Allowance on the Gov.uk website for financial help & support.
While you are a Carer the Jobcentre wont need to see you or force you to find work, so you.ll have more time with your Loved One ♥️
Get all the help & support you can, god knows, Carers need it !!!

Hi im Roni, im 46 & my mom was diagnosed at 60 with FTD but had Depression most of her Life. She Passed aged 70. We looked after her at home with the help of increased Carers over the years. She was Bedridden 6mths after her diagnoses & id take her out in a wheelchair once or twice a week.
Ive requested an MRI scan to see if i have this Disease, as its a 50/50 chance i have, so i can plan my future & express my Wishes to my Children & Partner.
I know how Hard & Long winded the process can be to get Diagnosed so im fighting to be heard although im 46.
If you can, get a Blood Sample from your Loved ones, GET IT before its too late !! That makes it alot easier for you to be diagnosed otherwise it can only be spotted with an MRI .. always follow your Heart & Instinks, if you think you may have it, fight for a Diagnoses !! I want to know Asap so that i can plan ahead my final years & to spare my children the Hurt i experienced watching my Mom deteriorate.
Has anyone else experienced chronic fatigue in their Loved One?
Sleeping most of the time, and only staying awake for an hr or 2 at a time ??
Ive just been diagnosed with CFS/ME, chronic fatigue syndrome & my mom with FTD also had chronic fatigue, so im very mindful of CFS being confused with FTD & want an MRI scan asap.

My mum has just been diagnosed with ftd at just 62 like you I noticed before and have fought hard for a diagnosis I’m completely broken my grandma also had dementia but not ftd she had vascular and we lost her in 2018 I’m still grieving for my grandma and now started grieving for my mum although she is still here sending you my love ❤️

My mam was just diagnosed with FTD yesterday.. I am totally floored, we knew something was wrong, suspected alzheimer's.. wasnt quite prepared for this though.. I feel like I am already grieving.. but cant tell anyone as I have to be strong.. to know I may have also passed this to my son is breaking my heart.. the pain is all consuming at the minute..

Hi Jess. I’m 17 and have just found out my dad who is 50 has been diagnosed with FTD, I don’t know what to do and who to talk to and I’m just scared. It’s just unfair for him to be so young aswell. Also scared that there’s a 50/50 chance of inheriting it myself with my 2 siblings too. Any advice would be great. X

My 68 yr old husband of 44 years also has FTD. type dementia, though his brain scans were inconclusive .He was finally diagnosed 3 years ago, but there had been many signs long before that. He is such a lovely man, and so articulate, but now he can hardly speak, and his agitation means that many care homes can’t “cater for his needs.” At present he is in an assessment unit in hospital. I dearly would like to care for him at home, but it has now gone past that stage, and that makes for feelings of guilt. A horrible disease in someone who never had a day’s illness in his life. Many people, I think, think of dementia as loss of memory, but some of the rarer ones are far more cruel.

Morning all,
Carers of people with FTD may find these short film clips useful. They were put together by Stockport Older People Mental Health Team and FTD carer group earlier this year.
www.penninecare.nhs.uk/infoforcarers

Hi from the other side of the world NZ. I to have found it difficult grieving for someone who is still part of you. I think lack of communication is the hardest to bear. I am lucky that my wife of 54 Years is still able to go walking and appreciate the beautiful things around her. Keep positive and live for each day

My mum had FTD started when she was 60, passed at 72. It was heart breaking not being able for her to talk back. It's worrying that a couple of ppl have said it's generic 50/50 who has told you this? Heart goes out to you xx

Hi,
I can feel your pain. Recently my mother diagnosed with Alzheimer’s and it shattered the whole family. Being from a small village in India, it is more difficult . People ridicule. They think it is some kind of black magic. She is also around 65. The best moments of the past with her hurt us a lot. I wish there was a medicine for Dementia.

Hi ime in a simular position as you. My wife, Also Janice was diagnosed with FTD 4 years ago but as you we suspected all wasn't well for a couple of years before. She was treated for anxiety for 3 years prior to that. I can understand totally how you feel because all you want to do is help her and love and hold her but now my wife can't understand my reasons. She has cared for the public a large part of adult life but this horrible illness has taken her away from me. Like you my wife has reac a terrible stager of her illness and it really does drain you in body and mind. One thing is sure though with lots of help from our brilliant families and friends I can give my wife all I have. Its going to be very hard but ill get there and so will you. God bless