Tag Archives: Brain Injury

CP Conference Last Saturday

So I attended the Netherlands’ national conference day on cerebral palsy on Saturday. Before I went, i was incredibly scared. Would I be able to connect to other people or would I be left on the sidelines all day? Would there be people willing to help me navigate the school building in which the conference was being organized? Would I arrive on time? But my main worry was related to my own diagnosis of cerebral palsy, or rather the lack thereof. You see, I was never told that I have CP by my parents and was too young to understand medical jargon by the time they stopped taking me to specialists. Maybe my parents didn’t even know, as doctors do not always clearly communicate and my parents were mostly looking for reassurance.

My GP also was a bit vague when I asked him last year, citing a probably relatively recent letter saying that I had acquired brain injury. Now I do happen to know that doctors disagree on whether brain injury acquired shortly after birth counts as ABI or a diagnosis of CP or the like should be made instead. So I’m a member of Facebook groups for both CP and ABI. However, ABI is a diagnosis regardless of symptoms and CP requires mobility impairments. I wonder therefore, are my mobility impairments severe enough to count?

I arrived at the school forty minutes before the doors were officially open, but someone took me to a chair anyway and gave me a cup of coffee. Soon, a man I’d been talking to via Facebook messenger arrived too and we sat and chatted some.

Gradually, other people arrived and it was soon time for the official opening speech. This was partly about Steptember, a movement challenge to collect money for research on CP.

Then, a neuropsychology professor spoke about the effects of movement and mental or physical effort on cognition in people with and without CP. It turns out that effort, whether that be mental or physical, strengthens brain connections to the frontal and parietal cortex, which are responsible for higher-order cognitive functions such as planning, organizing and impulse control. He also briefly touched on the effects of music, which can also help strengthen these connections. In short, moving and exerting ourselves as much as we can within the limits of our CP helps our cognitive functions. Of course, past age 30, these brain areas no longer grow and actually decline, but still exerting yourself enables you to learn more effectively regardless of your age.

After this, you could choose to follow a workshop session. The one I followed was on overload. This was a bit of a chaotic workshop, as the presenter allowed for questions while presenting. I am quite familiar with overload, as a person with autism, but I loved to explore it from a CP perspective. I mean, physically I do have some more limitations than those without CP. As a result, walking may give me energy, but it also costs me energy more so than it does non-disabled people. This was rather interesting, because I often tend to sometimes give everything and more of myself physically and other times I tend not to bother. Something the presenter said that really struck a chord was that mental overload can be counteracted by physical activity and vice versa.

In the afternoon, we could also pick a workshop to follow. The one I chose was on nutrition. A registered dietitian had developed nutritional guidelines for children and adults with CP. Topics that were discussed included underweight and overweight. The presenter said that, as a general rule, people with CP need fewer calories than those without CP. The reason is that, even though our movement costs more energy and hence burns more calories, we tend not to move as much.

Another topic that was discussed was swallowing difficulties. Did you know that up to 99% of people with CP, even those with mild CP, have swallowing issues? I didn’t. This was so validating, because I happen to have some rather significant swallowing issues.

Other topics of discussion included reflux, constipation and bone development. There is little research into these, as particularly constipation and osteoporosis are common within the general population anyway.

Overall, I loved this day. It was also very validating. Not only did no-one say I don’t look like someone with CP, but I actually met several people who are at least as mildly affecte as I am.

Confessions of a New Mummy

Developing My Fighting Spirit

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.

What Is My Body Telling Me? #Write31Days

Welcome to day seven in #Write31Days. Man, I’m getting tired of this challenge, as it doesn’t look like any of my readers care for it. However, I try to remember what the challenge organizer said, that this isn’t about gaining followers. It is instead a writing challenge to get you writing every single day.

Today I picked yet another prompt from The Self-Exploration Journal. It is: “What is your body telling you?”

I find this a really hard question to answer. I don’t focus on my bodily sensations much, yet when I do, they tend to overwhelm me. I regularly have a meltdown because I simply need to use the toilet. Usually this happens when I am not in a position to find the bathroom independently and the need-to-use-the-toilet sensation has robbed me of my speech. I also commonly have meltdowns because of hunger, pain or being cold.

As I focus on my body, I notice how my mouth hurts from having burned it on a hot snack I just ate. I notice my nose is a little runny.

I have distressing pain in my neck and shoulder muscles. It’s not as bad as it was yesterday, but still bad enough to distract me as I type this post. Good thing that this post is focused on my body.

If I have to guess what my body is telling me with these sensations, it’s probably to take a step back. I was impatient with my snack, thinking I’d need time to write this blog post too so I’d better eat my snack fast.

I’m not sure what the neck and shoulder pain are from. My husband says it’s most likely stress, but is that from doing too much or giving in too easily?

I know about the spoon theory, which describes the limited energy levels of people with chronic conditions. My support worker, who works mostly with people with acquired brain injury, reminded me of it on Monday. This morning, I was quite tired from the mere acts of showering and getting dressed. Yet I still can’t shake that little voice that says that, before I had support, I did these things too and never complained.

So my body tells me to take a break. Now I need to decide whether to listen or overpower its noise with my own and go on.

Lessons Learned from Regret #Write31Days

Welcome to day three in my #Write31Days challenge on personal growth. Today, I picked a writing prompt from The Self-Exploration Journal, which is a 90-day challenge. The prompt is about something you regret. What did this experience teach you in the end?

I am choosing my decision to move from the city of Nijmegen psychiatric resocialization unit to a long-term care unit in Wolfheze, a town near Arnhem in 2013.

The rationale for this decision was totally understandable. My husband lived in Doorwerth, a town neighboring on Wolfheze. Since we were exploring the possibility of me moving out of the mental institution and in with him, it seemed just about logical that I’d move to Wolfheze.

What I hadn’t anticipated was that I’d encounter less than supportive staff in Wolfheze. When I went for an intake interview, the responsible psychologist wanted to place me in a sociotherapeutic house, whch meant you’d live practically independently with a few other clients but the staff would come to your house at set times. They reasoned this would be the best preparation for independent living. I don’t think they’re wrong about that, but it became more and more apparent that I couldn’t cope with independent living like this.

So I opted to go into the long-term unit with 24-hour care instead. Even this was a huge adjustment, as staff started expecting me to learn practical independence skills that were too overwhelming.

My new psychologist also pretty soon removed my diagnosis of dissociative identity disorder and PTSD, changing it to borderline personality disorder. From there, it went further downhill. My first psychologist was good enough. She eventually did realize that I’d need lots of long-term support even when going into independent living.

In 2014, I got a new psychologist. This wasn’t my decision, but the old one was leaving. This psychologist had the worst impact on me of all mental health professionals I’ve had in those 9 1/2 years in an institution. She decided right from the start that I’m not autistic. She started to tell me I have acquired brain injury and need to go into a training home to learn independence skills for that. Now let me tell you, i already went into a training home that caters to among other people, those who are blind and those with acquired brain injury. I am confident that this training home offered me the best possible independence training. Yet because it failed, I had failed and I had to try all over again. Since I didn’twant that, I was dependent and misusing care and needed to be kicked out of the institution.

I was eventually kicked out of the institution in 2017. I only later learned that it wasn’t about me, but about the huge budgets cuts to mental health. Of course, the Nijmegen institution would have to face budget cuts too, so I might’ve gone the same route had I stayed in Nijmegen. However, then at least I’d have had supportive staff.

What I learned from this whole thing is that supportive people are the most important. You can live in a better home or a better area, but if the people who support you through and through aren’t there, it’s not going to work.

CP Day

Yesterday, I heard about an event on November 3 that I was immediately interested in. It’s the Dutch national CP day organized by BOSK, the country’s charity for people with physical disabilities.

For those not aware, CP is an abbreviation of cerebral palsy. Cerebral palsy is a movement disorder caused by brain damage sustained in utero, during birth or in a child’s first year of life. In my own case, I had a brain bleed shortly after birth.

The thing is though, I was never told that I have CP. My parents just told me I’m clumsy. I did get adaptations early in life, such as a large tricycle. I also had lots of physical therapy. When I was around nine though, my parent discontinued my specialist appointments. Even when I developed scoliosis in adolescence, they didn’t tell me. Scoliosis is a common consequence of hemiplegic (affecting one side of the body only) CP.

Last year, I asked my GP about it and was told I have acquired brain injury. Usually though, when someone acquires their brain injury in the first year of life, it doesn’t “count” as ABI. Instead, diagnoses are then made based on symptoms, such as CP in the case of movement difficulties.

CP is classified in five levels of severity. Obviously, since I don’t even know whether I was diagnosed with CP as a child, I’m not sure of my level either. I would have to guess I’m probably level 1 or 2, which are the mildest levels.

CP is not progressive and yet in some ways, it is. The brain damage that causes it doesn’t get worse, but adults can experience worsening pain, muscle stiffness and symptoms related to overuse and overcompensation.

On the CP event, there’ll be various workshops for adults with CP and parents of CP children. The morning workshop that most appealed to me, is about overload. I’d love to explore this from an a CP perspective rather than an autism perspective.

In the afternoon, the workshop I’m wanting to attend is on nutrition. A dietitian will speak about nutritional guidelines for people with CP. While CP affects movement in the limbs mostly, it can also impact on one’s gastrointestinal tract, because after all these are muscles too. I suffer with both constipation and reflux, which will be discussed.

Obviously, I still feel a little self-conscious about going due to my uncertainty about my diagnosis. Because I am sure I had a brain bleed in infancy, my main concern in thsi respect is that I’m not “bad enough”. My parents at one point tried to get me into a school for the physically impaired and were told (or so ‘ve heard) that I wasn’t disabled enough. Now of course I don’t mind not being that disabled, but then of course I shouldn’t be going to an event like this.