Query mild ataxic cerebral palsy, query ADHD and executive dysfunction — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Query mild ataxic cerebral palsy, query ADHD and executive dysfunction

Maisy_Mouse
Maisy_Mouse Community member Posts: 3 Listener
edited December 2023 in Cerebral palsy

Hi
I'm posting on here because I've just had quite a few questions recently about myself, my CP diagnosis, and my cognitive functioning. 

I’m really sorry for the long wall of text, this is partly one of my issues with prioritisation, because I think all the context is important!

I was born in 1988, born premature due to maternal fever, at 35 weeks (after rupture of membranes at 27 weeks), I had an APGAR score of 2 at 1min and had to be resuscitated, I had microcephaly and low birth weight and was initially in an incubator, I had initial feeding difficulties (couldn't get the sucking reflex: I sucked at sucking!), and quite a lot of respiratory issues, reflux and infections early on, so spent quite a bit of my first year in hospital. It was in one of these hospital stays that I was noted to have dystonia diplegia and generally be quite floppy, so they suspected cerebral palsy and developmental delay. I started physiotherapy and also around this time, was found to have hearing loss (I have no hearing on the left). I learnt to speak/vocabulary on time, but had some issues with speech production, so had some speech therapy, but my speech improved mainly when I started hearing aids (as I had a temporary conductive loss on my right side, so also had grommets). I also have an alternating squint and wore glasses from age 3. I crawled late (initially in circles because I didn’t use my right side. I’m still left handed) and walked late, but was walking at around 2-3, albeit unsteady on my feet, managed steps around 3-4 using a handrail and had those boots that look like Doc Martins. Also at this time, my mum started to be concerned about hyperphagia and me eating too quickly and not stopping when I was full (described in medical letters as 'voracious eater'. I actually choked once, when I was about 3-4. I was also observed to get what were described as 'myoclonic episodes' of head nodding and eyes jerking upwards and these were very frequent (some records report 200-400 a day on a bad day as a toddler), I was started on anti-convulsant medication, although my parents took me off this after a few months as they found it was making me sleepy. The episodes did reduce as I got older to only occurring when I was tired (before bed/just after waking), but were still noted in medical records until much older (age 7-10). My parents also noted that these stopped when they got my attention. I had quite a few EEGs during childhood, but this found these episodes weren't ictal (i.e. not related to seizures), so they ruled out epilepsy. They did find higher incidence of slow wave activity though and there were 'minor paroxysmal disturbances associated with the clinical changes described'. When I was about 6, school were also concerned about 'poor concentration' and an Educational Psychologist noted I was 'very distractible' and had difficulty sticking with a task. They also noticed that my 'sentences did not flow' and I would 'repeat words 3 or 4 times'. I had an MRI at about age 7 and this was normal. I was always told by my parents that I had cerebral palsy, but recently requested my childhood medical letters and it mentions that this diagnosis was not confirmed and after this, records either don’t mention it or say: 'apparent ataxic cerebral palsy'. I think that the diagnosis could not be confirmed because of the normal MRI but I am not sure because the letters do not go into that much detail and I am not entirely sure of the diagnostic criteria for ataxic cerebral palsy (NICE guidelines for diagnosis of any CP seem to rely on clinical presentation and risk factors). 
I know the medical letters record Drs being surprised by my physical and cognitive development as they expected more severe intellectual and physical impairment. I learnt to read age 2, did quite well in school and went to university. I have always been clumsy and uncoordinated, rubbish at hitting, catching or throwing balls (rubbish aim), balancing on anything, walking into doorframes, falling out of houses or if I'm trying to get anywhere fast, slow to run, rubbish at fine motor control (my writing is not bad now, but took longer to learn pen/pencil control), learning to tie laces (can do this), bit slow with buttons and rubbish at tying knots at the end of balloons; I can't ride a 2 wheeled bike, but then I don't feel I was given enough practice as a child, need a supportive arm walking over gravel in heels (!), but I have been hill walking (Sugar Loaf and other mountains in the Brecon Beacons & in the Lake District) and generally have quite a can-do attitude. I have been told I walk like a farmer, but I don't think it's obvious, and I do have orthoses for inside my shoes (when I remember to wear them), which I got as a teenager, because my leg joints are not quite aligned properly, so I was always wearing down one side of my shoes quicker than the other side and then walking lopsided and having to buy shoes more frequently. The orthoses corrects this. In childhood photos (and even now sometimes I struggle with this), my head is always tilted to one side and I didn't realise until looking back at the picture because I thought my head was straight. The hairdresser is always having to put my head straight unless I'm paying consistent close attention. Another thing that persists is my speaking voice is clear, but I do still sound like I've had speech and language issues, I did think that it was because I was half deaf and had initial conductive hearing loss in the good ear but looking at the childhood medical letters, it does mention 'macroglossia' and 'glossoptosis', which I believe are anatomical differences in the tongue and mouth that may contribute to difficulties making speech sounds. Indeed, I have always struggled with certain phonemes such as: 'ck', hard 'g', and 'ng' (I also can't roll my 'rr's which is very annoying as I speak Spanish pretty well otherwise). Anyway, people often ask me if I am French or otherwise foreign, which is also annoying because I am born and bred in the UK. 
So, because of all this, I think I do have quite a clinical picture of ataxic cerebral palsy (due to the initial features from birth and in my first year and some ongoing minor issues with balance etc.), but the fact that the medical records say that this wasn't confirmed just makes me wonder if I was misdiagnosed, because I have read some articles which say that ataxic CP can be mistaken for some other conditions and that some people who were diagnosed with CP at 2 years old, do not have this diagnosis sustained age 5 (and this is more common for ataxic CP). I don't really know what the criteria for ataxic CP is. If it’s not CP, could I have dyspraxia and would that explain the cognitive issues (described below)? Also, it seems they never actually got to the bottom of the myoclonic episodes. I was assessed for Tourettes due to these 'tics' and 'emotional immaturity' but I did not meet the criteria for this, as you needed to have both verbal and motor tics to meet the criteria. They also performed video telemetry while I was doing schoolwork, to see if I was having subclinical absence seizures and this was the cause of poor concentration at school, but nothing abnormal showed on this and it was therefore concluded that concentration 'can only be helped by increased input'. I was also referred to a clinical neuropsychologist to 'formally document the level of positive impairment' (I don’t really know what this means), but I have not found any reference to the outcome of this referral, and I don't remember if that particular appointment ever took place.  

Other things that may be relevant are that, it’s much better currently (although not entirely) and I never sought professional support, but I’m pretty sure that I have had an eating disorder for most of my life (with some time periods being worse than others), because of difficulties with binge eating and sometimes purging.

The other thing is that I sleep a lot and struggle to get up in the morning, regardless of how much sleep I have had. I have multiple alarms and have just found an alarm app that forces me to get up and take a picture of something and/or do squats, otherwise it starts going very loudly. I keep trying to implement a sleep hygiene routine, but every time, I keep it up for a short time and then it stops working.

 

I am now querying some executive function difficulties. Some reasons for this include:

I have always been a daydreamer and can spend a long time daydreaming, but this is not always fully within my control and can sometimes take me effort to pull myself out of this and focus on the present moment. This has always been the case from when I was a child. Often I also experience mind-wandering where I struggle to fully concentrate on the present moment, when trying to concentrate on something, for example a long conversation or when reading a long difficult text, sometimes this happens when watching TV, or listening to a talk, if it makes me think of something else, or connects my mind with another topic then I will be thinking about that until I realise and pull my attention back to the present. Sometimes it is momentary, other times longer. Also I am particularly vulnerable to daydreaming during transitions, the time between finishing one activity and starting another.

I also have always been emotionally sensitive, especially when I feel like I’ve done something wrong or feel judged in some way or feel patronised and when I’m really upset, crying, it takes me a long time to regulate my breathing again. Although my emotional state in the moment can change quickly, I tend to over think and over analyse, and this can affect my mood after the event and I think this has always been a feature of my personality. I am still sensitive to perceived criticism and struggle to not take perceived critical feedback personally.

I struggle with planning and executing tasks and this is related to motivation to start a task. For example, personal hygiene tasks, food prep/cooking, household chores, assignments with multiple steps, organising paperwork – I find it more difficult to start these tasks because often I am thinking about all of the steps at once and become overwhelmed. I also find it takes a lot of effort and energy to think about, plan and do these tasks and so this affects motivation to start, even when I have a plan. I also find it more difficult to prioritise because every part often seems equally important. I tend to procrastinate a lot and then leave things to the last minute, this is despite wanting to do the task sooner and knowing what to do. Recently, I have started using the pomodoro technique of breaking time into chunks and also tasks into smaller steps and this has been helpful, however motivation has been a significant issue throughout my life, starting in childhood and compounded by the daydreaming/mind wandering/distractibility issues and also mood and strategies that help, don’t always help consistently.

I also find that sometimes I cannot explain things well. I like to use precise language and have a good vocabulary, but sometimes I just have an idea in my head of what I want to say but cannot find the right words to describe it succinctly. Related, sometimes the word I want just disappears from my mind and it is sometimes quite a simple word, which is very frustrating. Other times, I can’t seem to organise my thoughts well/quickly enough to find the right turn of phrase for the idea I want to express.

Additionally, I often struggle with manipulating information quickly when there are multiple bits of information that I have to process and combine and link to existing knowledge. I can do this, but I struggle to do it quickly and also I’m having to remember all these bits in my head. What I’m describing, I think, is working memory. I believe my short term and long term memory is actually relatively good (depending on the type of information and contextual factors). At work, I very often leave the room holding some details in my head and then have forgotten said details when I get to the corridor and have to go back and look them up again. If someone talks to me on the way, I will definitely forget what I was trying to remember. Of course, a solution to this is to write it down, which is often necessary for me.  

I recently completed a cognitive screening assessment, which found that my verbal working memory was very good, whereas my non-verbal working memory was very bad and my manual imitation was low average. So, combining these, my attention index was average. Otherwise, I was pretty accurate (apart from a few mind wandering moments where I zoned out) although it took me longer than expected to complete the tasks, suggesting I had slow processing of verbal and non-verbal information. Also, when I was asked to do a writing task, I was slower than expected and when the assessor not-so-subtly started distractors (moving around, muttering, her phone alarm went off twice), I could not concentrate or think at all and barely wrote anything else.

This assessor said that executive function (EF) difficulties are common in people with CP, and it seems they might be, but whenever I look up CP, the only common non-motor issues I read about are sensory processing issues, mostly around lights, noise etc. Also I’m conscious that I (apparently) have the rarest type of CP, ataxic, so most of the studies on CP, will have been done with people who have the other, more common types, so would it even apply to me? The other non-motor issue that I read is common for people with CP, is depression/anxiety, but this is usually described in relation to frustration with finding physical things more difficult than others and difficulties with bullying and social integration but in relation to feeling different because of physical difficulties, whereas I feel my cognitive, processing and emotional difficulties have been the most difficult to deal with.

So I guess I’m just wondering whether anyone with CP and/or ataxic CP relates to my experiences with: daydreaming, mind wandering, slow processing, difficulties with motivation, difficulties processing multiple bits of information, organisation with multiple steps and I’m wondering whether I have ADHD? I’m wondering the point where ‘EF difficulties are normal for CP’ ends and ‘meets criteria for ADHD’ begins…

 

Thank you so much for reading to the end!! I appreciate any support/advice/insight!

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hi @Maisy_Mouse
    Welcome to the community and thank you for your post.

    ADHD, Dyscalculia, Dyspraxia and ASD can be associated with all types of cerebral palsy (CP) as can issues with emotional control/regulation. But as you have alluded to, a definitive diagnosis of these co-existing conditions can be difficult to achieve due to the diagnostic overshadowing of the initial CP diagnosis.

    From what you have written in your post I would suggest that you speak to your G.P. about everything you experience and begin the investigation process. You need and deserve answers to your questions.

    Please keep us updated.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Maisy_Mouse
    Maisy_Mouse Community member Posts: 3 Listener
    Thank you Richard, I really appreciate the reply.

    Yeah, I was told by Dyspraxia Foundation that I wouldn't meet the criteria for dyspraxia because my CP diagnosis would explain motor difficulties, which I really don't understand, because CP is an umbrella diagnosis for brain injury affecting motor function, which could also describe dyspraxia (DCD). A risk factor for DCD is premature birth and low birth weight, which overlap with risk factors for CP. 

    I don't appear to get any of the physical struggles like pain or muscle stiffness that is often seen in CP. I do feel that I produce slightly more saliva (or have to work harder at swallowing this) than the average non-CP person, so that would be a physical manifestation suggestive of CP, I think... Along with the slightly wider gait and wearing down one side of shoes faster than the other. 

    I have been asking my GP (multiple because it's always a different person since the first one went on maternity leave), for ADHD assessment. But I also really identify with the symptoms of DCD and I think some overlap with ADHD in any case... it's difficult to speak openly with the GP, because I think some are trying to dissuade from seeking ADHD assessment, as there is such a long waitlist but maybe if I get through to ADHD assessment, they may have more knowledge about differential diagnosis between DCD and ADHD than the GP.

    Also, if the difficulties with executive function are just a symptom of CP itself, what resources are there to help with this? Because I feel every time I find support groups for CP they're focused mainly with children/families but also mainly focused on physical challenges and not adults with executive function / emotional regulation issues... don't know whether you have any thoughts on this?

    :smile::smile::smile::smile:
  • Cplife
    Cplife Community member Posts: 55 Courageous
    @Maisy_Mouse
    don’t give up speak to your gp I’m 53 I’ve got cerebral palsy and I was diagnosed with ADHD last year it’s answered a lot of questions for me regarding my emotions and how my brain works it’s also helped me understand my health anxiety and other anxiety’s I’m my gp told me that they have been asked not to refer anyone at the moment because of back log but I wouldn’t let that put you off I would still speak to them. I cried when I asked my doctor because I’ve always known there was something else besides my cerebral palsy. 
    I find ageing with cerebral palsy challenging but luckily my doctor latterly has listen to me and that’s made a difference 😊
  • Maisy_Mouse
    Maisy_Mouse Community member Posts: 3 Listener
    Thanks so much Cplife for responding...and for the positive words of encouragement! I am determined to persevere with this!  As I think it will help me accept myself more. Like you, I have been thinking for a long while that there is something more going on... 

    re: ADHD, what symptoms do you struggle with the most? 

    For me, it's low motivation to do stuff I have to do (but plenty of motivation to do stuff I'm interested in, although still struggle with planning and organising even if interested),

    Getting distracted and switching to different topics while talking (if relaxed and not making effort),

    Concentration, organisation and follow through on long assignments or tasks, with multiple steps, currently an issue as I am studying (trying to!)! But also just takes me ages to finish anything!! Knowing where to start & how to structure... 

    Often if I need to make a decision, I will need to be in the right headspace to consider all the options, even if it's a seemingly simple question, like what time do you want to meet?

    Daydreaming & mindwandering

    Planning if I have enough time or leaving myself enough time to get a task done. 

    Do you struggle with any of these, too? 

    You mentioned emotions 🙃 and yes, I am also quite sensitive to criticism / perceived judgement. I don't have health anxiety but I do get anxious sometimes and turn things over in my mind! 

    🙂🙂🙂 
  • Cplife
    Cplife Community member Posts: 55 Courageous
    @Maisy_Mouse I struggle with motivation I spend time telling myself I need to do something but struggle trying to do it. 
    Feeling like I’m not good enough 
    over thinking about what people think of me. I can fixate on one thing especially heath stuff. 
    I can also think about conversations I had a week ago thinking did I upset that person. 
    I have trouble sleeping I have try calm my mind down. 
    I’m not medicated for it because I have high blood pressure and the medication would make my heart rate go up this wouldn’t be any good for my health anxiety. 
    My cerebral palsy courses me a lot of pain. 
    So when I’m in pain I’ll will over think it I also find social situations a struggle I always have a plan in my head what to do if I’m not coping I’m lucky though because  I’ve got some really good friends who understand stand me and I can just be myself and don’t have to think about what I’m saying I call these my safe people 
    I hope this helps you 😊

    I definitely think my diagnosis made me feel better about myself there is a reason for my struggles 😊

Brightness

Complete our feedback form and tell us how we can make the community better.