Ok, so this beginning bit at least, I’m writing on 5th January 2016, the day before I head to the Royal Free Hospital, in London, with my mum.
My mum (although she doesn’t know it) is a bit of a celebrity on my Facebook wall. People think I write comedy anecdotes about my time with her. There truth is I don’t. Because everything I say on there is accurate.
Her behaviour is not something that started after the invention of Facebook, she has always been…well….a bit odd.
It just so happens that I’ve got this coping mechanism by way of humour. I retell the things that have happened in a way that makes people laugh and in doing so, it eases my frustration about how I sometimes feel towards her.
There are literally hours of stories I could tell you about things she has said or done. Some of them have been harder to cope with, especially when I was younger. Like the time I had my college interviews and the interviewers invited her into the interview with me (despite my glare and rapid head shaking in their direction). And after remaining silent as I charmed the pants off them, and demonstrated my knowledge and suitability for the course, saying clever and appropriate things, they finally turned to my mum and said “Is there anything you would like to say Mrs Bailey, in support of your daughters application?”
And I held my breath and shut my eyes as she said
“Yes. She has got a fish.”
Which referred to my pet goldfish. Which was not relevant to my college application, my course or the interview in any way. And she couldn’t understand why afterwards, I was so cross.
I can laugh about it, but it’s also been stressful too because I’ve spent my whole life saying “She is nuts. Something is really not right.”
I’ve been saying it to the grown ups in my life, all of my life. The first time was to my grandparents when I was about 8 years old and I was at their house on a day off sick from school, whilst my mum went to work. My mum had been stalking a man who had dumped her, and repainted his red Ford Escort with white emulsion paint when she found out he had a new girlfriend. I finally got brave and said to my grandparents something along the lines of “I think there is something not right in my mums brain. I think we need some help.” but the response was “She has always been crazy!”
I’d spent my whole life waiting for the grown ups to do something, then around February 2015, I realised *I* was the grown up who had to do something.
After moving nearer to her, there were new bizarre behaviours I started to notice. Temper tantrums became more frequent, she would pester me to do stuff but pester to an extreme degree and she wouldn’t then do sequential things in the right order. At the same time she had little interest in me or my life but would be obsessive about things that she felt engaged in. I know a lot of this you might read and think “It sounds just like my husband/wife/mother/father etc” but the key thing for me was the intensity of it. Sometimes she would show up at my work 4 times, call me 3 times, text 7 times and still send an email if it was about something that interested her or was something she wanted to do.
Then for the important stuff I felt she was often uncaring. The day my dad died I called to tell her and she said “So are you going to sell his flat or keep it?” I’d literally just got back from the hospital. It was the last thing on my mind and *the first* thing that she said. Then she showed up at my house but stated she had only come to see me because my nan had told her to check I was ok. I was bawling my eyes out (obviously) and suggested that she shouldn’t be there if she didn’t want to. So she said she’d rather be watching X Factor and left.
The missing piece of the puzzle for me had been having back-up. Until now it seemed that everyone else found her humorous or eccentric and only I was getting worn out by her. But then at one of her afternoon tea deals from Groupon that she’d badgered me into, my grandparents were there too. I had a 2 minute one to one with my nan whilst my mum was out of earshot and my nan said a few words that were enough to start the roller coaster that followed.
“Something isn’t right.”
Based on the few things my nan had said which largely excused my mums behaviour due to retirement and spending too much time with my sister (who has brain damage), I then went on to call my aunt.
My aunt told me about more incidents and other behaviours she had noticed or I had noticed too but dismissed.
With a list of symptoms, I did what anyone who knows me well, knows I would do. Research.
I had a list of symptoms ranging from continual tuneless humming to childish behaviour, silly faces and lack of logic and when I combined all the symptoms the same disease kept springing up.
You can go off and learn more about Picks if you want to, but essentially it’s a lot like what I have just described. There is no treatment and no cure. It doesn’t affect people in the same way as Alzheimer’s but it is a progressive form of dementia that starts earlier in life and if it is of the genetic variety, carries a 50% chance of affecting the offspring of the person diagnosed.
It gets worse over time and in the end, like most of these diseases, it’s pretty grim. Let’s just say it doesn’t offer the most dignified exit from the planet. One saving grace is that in the early stages it does progress slowly.
The more I learned the more sure I was and the more desperate I became to get someone to help.
I had started to ask other people if there seemed to be any weight to my thinking. These are some of the annoying conversations I’ve had to bite my tongue over since I realised, prior to any diagnosis, that it was Picks Disease. (Some of these have been with medical professionals!)
“But she has always been eccentric.”
G: “I hear what you’re saying. What I’m saying is that Picks starts early in life. And she is getting worse. So I’m pretty confident it’s Picks.”
“Have you tried just talking to her? Maybe she doesn’t realise the impact she is having.”
G: “She doesn’t. That’s one of the symptoms.”
“Maybe you’re just feeling the pressure because you’ve moved nearer to her?”
G: “I am. I also think that it’s not me who has the problem here. I think it’s this illness. It’s called Picks disease.”
“I think she is mainly ok when you’re not around, it only seems to happen with you, so maybe it’s attention seeking?”
G: “Yes it could be. Or it could be Picks disease as one of the symptoms is becoming more childlike.”
“I think the noises she makes are just a habit.”
G: “Maybe. Or maybe it’s Picks disease as its one of the symptoms.”
“I think you should just wait and see what it is. After all, you’re not an expert are you?”
G: “In brains? No. I’m an expert in my mum though. I lived with her for 26 years. I know her behaviour has always been odd. It’s getting odder. I think it’s Picks disease.”
“You haven’t got it though.”
G: “And you know that how?”
“Well you seem quite smart.”
G: “Thank you, I forgot that brain disease only affects thick people.”
“So has she been forgetting things?”
G: “No, not really. Picks doesn’t affect memory so much. It’s more like behaviour.”
“But you said it’s dementia?”
G: “Yes, Picks is a form of dementia.”
“But if she still remembers stuff, what’s the problem?”
“My mum does all the things you say your mum does. It’s just a mum thing.”
G: “You know my gut feeling is that if you had an accident, your mum would bring you some clean pants to the hospital. My mum would bring me a glitter pen and some shoe polish.”
“What makes you think it is this Pig disease?”
“Not Pig, Picks. It’s named after Arnold Pick who is the man that discovered the protein build up in the brain that causes it. I think she has it because I read the symptoms and had a stream of real-life examples to match every single one. That’s how I know. I just KNOW!”
The medical part of this started with a trip to her GP who I had written to secretly to tell him what was going on and what I thought the problem was. My mum was a bit worried about her memory but actually her memory is pretty good. She’d just noticed some short term stuff but it was a good excuse to get to the doctors and for me to be there too.
The doctor knew nothing of Picks disease and he referred her to a psychiatrist.
The annoying thing about the appointment with the psychiatrist was that she didn’t want to hear what I had to say. She called me in for just 2 minutes at the end of the session.
It went something like this:
Psycho (psychiatrist): “So Mrs Bailey, do you think that you just tune out of what people say because you find them boring?”
Mum (Mrs Bailey): “Yes!”
G: “Erm, I think maybe you’re leading her to an answer.”
Psycho: “And *you* think you’re alright don’t you?”
Mum: “Yep. I think I’m fine.”
Psycho: “Do we think Gemma is a little stressed maybe?”
G: “Excuse me?”
Psycho: “Your mum thinks she is fine. What does that tell you?”
G: “Here’s what I think. If you see a crazy person walking down the street, shouting out that they are Jesus, you don’t bother to ask them if they are crazy, because they will say “No.” Don’t ask the crazy ones if they are crazy, ask the sane people who are watching them.”
Psycho: “I think we can wrap this up..”
G: “I want her to have an MRI.”
Psycho: “We won’t be doing that. There isn’t enough evidence to prove it is required.”
G: “Send her for an MRI.”
Psycho: “What do you think it will achieve?”
G: “It will create a record….so that *if* there is a problem later on… Well, there would be a before and after.”
Psycho: “For your peace of mind we will do a CT scan. Ok?”
Here’s what happened next…
The psychiatrist was so sure my mum was alright that, she discharged my mum without waiting to see the scan results and without any consultation at all.
This meant that the scan went back to the radiographer as there was no one to interpret the results. (It should have been the psychiatrist but she had assumed all was well.)
The radiographer didn’t know how to interpret the results so sent a note to her GP saying that there were pockets of air in her brain. (I asked if this meant I could legitimately call her an airhead.)
The GP didn’t know what the pockets of air meant or what to do about them. He referred her to a neurologist.
The neurologist explained that there’d been a cock-up routing back to the psychiatrist. He said there are no pockets of air. The ‘gaps’ at the front of the brain were due to the brain shrinking (as it does in all adults) and what *could* be brain deterioration.
The neurologist listened to my thoughts. I also wrote to him afterwards to say the bits I couldn’t say whilst my mum was there.
He referred us to the Royal Free for an MRI (at last!), lumbar puncture and psychological tests.
And that’s were I got to on 5th January 2016.
“Still lost, but going in the right direction.” Well that’s what that Facebook post was all about…..
Knowing that I still have to wait for a while before the results will arrive. But having waited 37 years for a grown up to say “You know what G, you’re right. Something *is* wrong”; I guess a few more weeks is nothing…
After the appointment at the Royal Free, the new psychiatrists we saw there, sat down to have a chat with us. They had all the results except the lumbar puncture which would take a few weeks to come back.
I hadn’t expected them to make any diagnosis that day so I was surprised and pleased when they said that they would.
However what they actually said was that everything seemed normal. They were really careful and said that doesn’t mean that everything *is* normal, it just looks that way. They said to come back in a year.
I’ll be honest I felt like shaking them. I text my aunt and told her she replied saying “Does it mean we have to accept this personality / behaviour?”
My mum was of course very happy. She said she knew all along that she was ok, at which point I got quite cross and told her that if she was ok, she had to start proving it and stop behaving like a child.
I also wrote to the neurologist we had seen in Hemel Hempstead and I told him there was no way he was sticking us in a filing cabinet for a year! And that there was no way everything is normal.
I then went to my grandparents that weekend and talked with them at length. I think it would be fair to say that they were trying to find other reasons for how she was, but as I told them more about Picks, they seemed to be taking it a little more seriously. I explained that just because the tests hadn’t shown anything, it didn’t mean that everything was ok.
It was a really tricky time. On the one hand I had people saying “Yay, she is ok!” whilst I really felt she wasn’t and I would rather have had the diagnosis and be at peace with it, than try to wrap my head around the idea that everything was ok when I knew it bloody wasn’t.
Then I had people saying “You’ve done your best, let it go.” But that didn’t sit right with me either. I’ll be honest, I was as sure about my diagnosis as I am that the sun is hot. Imagine if someone said to you “I know you *think* the sun is hot but since we can’t verify your evidence, you should probably just let the idea go.”
I decided that if the neurologist, who ultimately would take all of the evidence into consideration, and who I had developed a great deal of respect for (partly on account that I knew he had received and read my letters to him) said “Everything is normal, come back in a year” I would at that stage just let it go. Not because I would believe him, but because I needed to preserve my own sanity and get on with my life.
And that brings me to…
So today was the big results day. The only blip was that the neurologist hadn’t yet received back all of her results.
It sort of didn’t matter as ultimately the outcome *with* the result would be similar to the one we now have without it.
The neurologist said that the psychiatrist from the Royal Free *was* sure that something was wrong too, even though his tests came back within the norms. On the day, the psychiatrist had emphasised the “normal-ness” so much, we both thought he was saying she (in his opinion) was actually ok. In fact the psychiatrist has written to the neurologist and suggested a to-be-clinically-confirmed-diagnosis of FTD. (Frontal Temporal Dementia – the clinical way of saying Picks Disease).
This was a bit of a surprise to us both. In fairness to my mum, I had also heard the psychiatrists verbal summary as ‘everything is normal.’
The neurologist said today that the main purpose of a *clinical* diagnosis is to be able to offer the correct treatment and to get support in place. However she is not yet needing support (though I think I might!) and there is no treatment anyway. In his words, a clinical diagnosis at this stage only serves to confirm what we already know, and can do very little about. She does have Picks.
My mum was more upset that in the written report they had said things about her behaviour which she says are not true (they are) and she isn’t too bothered about the diagnosis. Another weird trait of Picks is that the sufferer experiences it in a sort of 3rd person way, so luckily it doesn’t worry her too much.
So why am I telling you all this?
I’m telling you because I was lucky enough to read an article by a GP called Dr Bob Fay. It was his account of Picks Disease (as a sufferer) that he shared to the Alzheimer’s Association that spurred me on to disagree with the first psychiatrist we saw, to secretly write to the neurologist so I could say the unsaid’s I couldn’t say in my mums presence and to fight every other Tom, Dick or Harry who said “Maybe it’s just X. Maybe you’ve got so obsessed with the idea you can’t see how it could be something else. Maybe it’s just you!”
Dr Bob Fay knew nothing of Picks and he was himself a doctor. It took him 2 years to get his own diagnosis and meanwhile it was his family who dealt with the day to day management of his personality and behaviour changes. There were too many similarities between his story and my mums for me to be wrong.
It would have been far simpler for me to agree with the white coated experts instead of trusting my gut.
I’m glad I persisted because now I can be more patient with her knowing she is not being annoying on purpose or simply attention seeking.
But most importantly, all of you who have read this, now know something about a little known disease that affects many more people than we realise, and that’s a very good thing.
I’ll finish now with a quote from my mum:
” ‘To be or not to be? That is the question.’
Hamlet wrote that, he did.”