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

Activities That Give Me Inner Peace

I’ve been feeling a bit low again, but not as low as I was early last month. I’m not even really depressed, but just rather uninspired. I’d rather play games on my iPHone than do something productive, like blogging. To get myself writing again, I looked at The Self Exploration Journal once again. One of the prompts is about activities that give you inner peace. Here goes.

1. Yoga. I really need to do this more often. I don’t practice yoga much, as it feels like exercise yet doesn’t lead to weight loss. However, it does have other benefits. For example, it can help with my flexibility. It can also definitely help me find inner peace.

2. Meditation. I have Insight Timer, a free meditation app, on my phone. I love it, but I don’t practice meditation nearly enough. I tried it again yesterday, but when I was in the middle of a guided meditation, my husband came home.

3. Listening to soothing music. I used to always have calming whale sounds on when in the snoezelen (sensory) room at my old day activities. Unfortunately, I couldn’t copy the CD when moving day activities and it’s no longer being sold. I have yet to try to listen to my own soothing music on Spotify when in the sensory room. I really want to do more imagery-based activities using soothing music too.

4. Walking. I love going for walks. It truly helps me process my thoughts and move towards greater inner peace. It’s a more active way of creating inner balance, whereas the above three activities are more passive. I mean, yes, yoga requires movement, but it doesn’t require as much movement as does walking.

5. Exercise. Going on the elliptical has the same effect as walking, but amplified. I do this alone, whereas I always go on walks with other people. This means that I can quietly process my thoughts when on the elliptical, while at the same time getting my much-needed activity.

6. Writing. I really want to do this everyday, like I did when starting this blog. I really want to do more freewrites or diary entries too. This should definitely help me process my thoughts and gain inner peace.

What activities give you inner peace?