Why I've Started Blogging About Frontotemporal Dementia

OK so here goes... my first blog post. I must admit, I don't think I've actually thought this through. I was having a 'sad day' today and whilst I was in the shower (around 8 hours ago), I decided a blog could probably achieve 2 things; the first being some therapy for me, the second being a place where people could visit, relate and understand Frontotemporal Dementia (FTD). So here I am, 8 hours later and £86.50 out of pocket, I've built a website and I'm getting ready to publish my first 'diary entry'. Before I start, I feel I need to include a major disclaimer - I'm not a writer! Who ever said I was impulsive?

I thought my first diary entry should include some background information and to explain why I've done this, so that's exactly what I'm going to do.

My name is Jess, I am 28 years old and married to Gregg (I know I'm bias but he really is the best husband ever). I don't have any kids of my own yet (and in another post I will explain why), but I do have 2 lovely step-kids aged 12 and 11. I have a very large family, both parents are still alive and I am blessed with 3 brothers and 2 sisters. Alongside my own family, I am incredibly close to all of Gregg's relatives and I have a great relationship with every one of them (rare, I know!). I also have a whole bunch of funny, talented and caring friends who never fail to pick me up when I need it. Finally, I have a really good job at a firm of financial advisers as Head of Business Development. All in all, l really love my life and I can't complain. I've also just realised how hard it is to summarise your life in one paragraph...

Despite all of the above, of course my life isn't perfect. Like most people, I've had trials and tribulations throughout. In fact, the biggest test I have faced is the whole reason for this blog; my mums diagnosis with a rare form of dementia called FTD in February 2019. I will do another diary entry which explains FTD in detail, but for now I want you to focus on one descriptive word I've used, rare.

FTD causes problems with behaviour and language and affects the front and sides of the brain (the frontal and temporal lobes). This form of dementia tends to start at a younger age, most cases are diagnosed in people aged 45-65. My mum was only 62 when she received her diagnosis, though her symptoms started much earlier and by the time she received her diagnosis (it was a very lengthy process), she was already pretty advanced. The diagnosis also didn't come as a shock to me, my friends and work colleagues always joke that I should join the FBI due to my research skills and in this situation, my skills shone through! The one thing the diagnosis did provide me with however was relief. I was utterly convinced for so long that mum was suffering with FTD, even when others doubted me. I finally had a diagnosis, a reason behind my mums concerning behaviour and something for me to focus on. I could now research FTD in-depth and figure out how we will manage this condition going forward. Surely there was still a way for mum to have a good quality of life?

I decided to try and find out, however it wasn't as easy as that. This is why the word rare is so important. All I knew was that there is no cure for FTD or any treatment to slow it down, a real blow. Whilst there are over 800,000 people in the UK with dementia (and it's estimated that by 2025, this will have increased to around 1 million), FTD is a specific form of dementia which is uncommon. I struggled to find online support, to find out why mum had different symptoms to everyone else, to understand why she was losing the ability to talk, I struggled to relate to just one person. I didn't have a clue what I was doing, I felt truly alone. Although I had family around me, they also struggled.

This all changed when I accidently stumbled across an interview on This Morning with a woman named Hannah Mackay. She was being interviewed to raise awareness of FTD after her father had been diagnosed. It was such a sad story, but it was also the first time I felt I could reach out to someone who would understand. That's when I went into full blown weirdo mode and I messaged a stranger on Facebook Messenger asking for help. To my surprise, she replied with the best response ever. She gave me guidance, she provided me with useful resources but most importantly, she understood. She could relate with me and knew exactly what I was going through.

This is why I've started this, Hannah helped me and I want to help others. If I found a blog like this when I was in need, it would have been my saving grace. I am going to be honest, too. I will go into every bit of detail including when I started spotting changes, her symptoms, the process of getting a diagnosis, things I've done that have helped her and other supportive resources I have found.

Mum is really advanced now and the journey my family has been on so far hasn't been easy. I'm in a situation currently where I am grieving my mum, even though she's still alive. She doesn't speak anymore and I'm not convinced she even knows who I am. Her progression has been incredibly quick and things change each day. Her level of care required now is huge (another story for another day!) but despite all of this, I do still manage to enjoy my time with her and find small victories.

There's more to this too, as only last week I had a call to say this is a genetic condition and there's a 50/50 chance I will also suffer with this disease. Not only do I want this blog to help others, I want it to help me too. I have found myself incredibly anxious over the last few days and I already feel better after putting it into words. I suppose this is like my therapy and I'm taking you all on this journey with me, I hope you're ready!

Here's a pic of me & mum, back when we didn't have a care in the world!

1,604 views11 comments

Recent Posts

See All