Another piece of the jigsaw

3 Dec 2016

While it’s 7 years since finding out I have Cerebral Palsy, I’ve not stopped looking for answers on all of my neurological issues, in those 7 years.

With a little help from Claudia, who is in her final year studying Psychology at St Andrew’s University, we have now pieced together more of my symptoms, through her understanding of the brain, my brain damage and symptoms.

It has always been enormously important for me to try and relate my symptoms to my daily life, because my symptoms make me who I am and it’s important I understand my symptoms and how they present, but there’s another side to this and I still can’t believe that I’m still having to piece everything together myself.

I know the parietal and frontal lobe are both affected. This part of my blog may sound a little familiar as I have touched on this in one of my previous blogs, but this blog details and helps me complete the picture more.

The parietal lobe, which is involved with spatial representation in the brain, is why I struggle with temporal and spatial issues such as worrying about time and being late. The parietal lobe is also responsible for how our brain processes sensitivity to touch and I struggle with that.

The frontal lobe is primarily associated with emotion regulation in an area called the limbic system, but the frontal lobe also deals with other things such as motor control. It’s the limbic system that holds the answers to what makes me who I am, my struggles and the impact is has on daily life.

Specific limbic system functions may include:

“Controlling emotions like anger and fear, regulating eating hunger and thirst, responding to pain and pleasure, controlling functioning of the autonomic nervous system, including things like pulse, blood pressure, breathing and arousal, sensing sexual satisfaction, controlling aggressive or violent behavior, responding to sensory information, including sense of touch, noise and smell.”

Thankfully I don’t deal with all of them but I relate and deal with most of them. Since the limbic system regulates important aspects of our conscious and unconscious patterns, including emotions, perceptions, relationships, behaviours and motor control, it’s not surprising to me to see why damage to this region can cause serious problems and why I struggle.

Disorders or behaviours that are related to limbic system damage, due to things like traumatic injuries like a stroke, ageing and forming memories. Damage can also include short-term or long-term memory loss. Learning is greatly impacted by this brain damage, since it depends so much on memory and which is why I struggled in school.

I can relate to memory and difficulties in learning. At school, I struggled to learn in a traditional classroom environment, as I couldn’t retain information and had problems concentrating. A specialist I saw as a child described the possibility of me being ‘mentally retarded,’ which was a phrase thrown around in the 60’s, but one that would never be used in the present day.

Having found a different way to learn that works for me, I have gone on to successfully complete 3 Diplomas with Distinction through distant learning. Interestingly, while I find it easy to hold on to older or long-term memories, I find it difficult to hold on to new short-term memories.

I usually struggle to recount experiences through short term memory, but my memory for conversations or events from many years ago is excellent. I am pleased that my research has provided me with yet more answers, as it enables me to add another few more pieces to the jigsaw, since I found about my Cerebral Palsy at the age of 46.

My damage is centered around my emotions, feelings, fears, personality, learning, body movement and those things make what I deal with worse. I am one way, not because I choose to be, but because I have no choice. No one really gets that.

I have had to compensate and continue to compensate, whilst those close to me must try to fit in.

4 Responses to “Another piece of the jigsaw”

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  1. Brad 03. Dec, 2016 at 2:27 pm #

    This is possibly one of the most significant of your blogs, as you are now more able to understand who you are and what you are. You can now make sense of your journey so far and I think that should empower you to make sense of the future too.

    It must be very hard to have to piece things together little by little, but over the last few years you have obviously made massive steps towards understanding you. Something that most of us never achieve.

    • Ilana 03. Dec, 2016 at 2:46 pm #

      Exactly! Yes I think you’re right, it is my most significant blog to date because it explains what I deal with, in a way that helps me understand. This blog is about my DNA, what makes me, Me.

      We all have a right to know. It also gives me closure on that part of my life, which I never thought I’d have and is my biggest most personal achievement to date.

  2. Randy 04. Dec, 2016 at 9:45 am #

    A lot of this sounds very familiar. It can be frustrating when you can remember things from the age of 3, but can’t remember what you had for breakfast yesterday morning. It’s interesting that your daughter is studying psychology since I went to see one recently for that reason to see what was going on and how to best address the issues.

    She said that I have signs of ADHD which makes sense, because of the troubles I have had concentrating since I was a kid. I was always reading ahead of the class in the books, since I did get very bored and learned things fairly easily. I had pretty close to a photographic memory at one time, so being this way is very discouraging.

    There are just so many pieces to put together and I always feel like there are pieces missing that will never be found. I probably should get around to getting an MRI myself to see what issues I may have in my brain due to many head injuries over the years that weren’t addressed.

    It’s also something that they won’t just do for anyone, so I will have to find a way to justify it. You would think any doctor would want to know, but it can be hard to find a doctor who will actually listen to you for more than 5 minutes. Everything needs prior authorization from the doctor for insurance purposes nowadays.

    I would be very curious to find out if there were valid reasons for my issues and not that I’m mentally retarded like I feel like on some days.

    • Ilana 04. Dec, 2016 at 9:55 am #

      Thanks Randy. Yes, there is no doubt in my mind you need to do this Randy, to try to understand, to put your past behind you and to do this because your parents didn’t. I think the pieces that are missing you can find.

      If it weren’t for Claudia, putting what I knew in order, I think I would still struggle to understand the non-connections in my brain. I had a diagnosis, I had the details, I knew my symptoms because I live those every day, but needed to locate and put the connections together so I could see the bigger picture.

      Claudia has done that for me. It took her two minutes. It’s definitely worth looking into Randy. To be able to piece your difficulties will give you closure and will help others understand you.

      A Neurologist who specialises in brain disorders like ADHD or similar will be able to help. Through an MRI scan, it will be obvious if the brain is affected.

      It’s definitely worth a try Randy. Having lived in the dark for many years Randy, I still feel it’s better to know.

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