Brain Injury, hemineglect, My Story, myelin, prosopagnosia, sight loss, Uncategorized

8. Hemineglect

Hemi-neglect

 

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This is a very strange one! My hemianopia means that I cannot see (in my case) the left side but hemi-neglect is that I “neglect” that side. What? Yes, I actually forget that the left side exists and it somehow doesn’t really exist to me. As crazy as this sounds, I forget that the left side of my body is there and tend to ignore it. Because my left leg and arm don’t automatically move in coordination with my right side, I have to pay attention to them, especially, for example, when walking. It takes a lot of concentration to move my left leg in time with my right leg to be able to look like I’m walking “normally”. Likewise I have to concentrate on my left arm, to swing it in coordination with my right leg. That took a LOT of practice! This can all go horribly wrong at times if I’m distracted, or am tired and can’t concentrate. It can be challenging to walk whilst having a conversation! This is when I forget to lift my left leg and trip!

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I also need to pay attention to make sure that my left side is dressed appropriately before I leave the house in the morning. Do I have my left shoe on? Is my left arm IN the sleeve? Have I brushed the left side of my hair? These are the things that I sometimes forget…even though my right side IS dressed. I try to always focus on the left side first but at times, I still forget! But it’s not only the left side of my body that I “neglect”, it also happens with the left side of my visual field, i.e., what I can see.

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It is really difficult to move my eyes, head, legs, arms, or body towards the left. For example, if I’m reading, it’s exhausting moving my eyes to the beginning of each new line of text, i.e., the left, as I read…or write. This has improved over the years but I used to have a bright red ribbon down the left side of the page so that my eyes would eventually find the left side! Nowadays, I use a marker (long strip of card), which I can just move down a line after reading it, and this helps too. Also, if I have to physically move to the left, e.g., to avoid walking into something, I often have to stop because my body just refuses to move to the left. Once I stop, I can force myself to move left through sheer determination and concentration. So, how does this affect me in my normal daily life?

This can be a challenge in many ways. Crossing the road can be difficult because I cannot depend on my eyes/ brain to acknowledge the left side so I have to find a pedestrian crossing. I have learnt over the years not to rely on my hearing in this situation either because, on a few occasions, I have been in a rush, was bored of waiting for the traffic lights to change, couldn’t hear any cars coming so stepped out to cross the road…in front of a cyclist! On the few times that this has happened, the cyclist has swerved, shouted abuse at me and I have shouted apologies at them. Even hearing something from the left just doesn’t register the same in my brain. People sometimes come from my left side and then tap me on my left arm. This always gives me the fright of my life because I haven’t seen, heard, or noticed them approaching me. My fright at least gives them a laugh!

Another funny thing that happens fairly often is when someone waves at me when they are walking towards me. Bear in mind here that I also don’t recognise faces (prosopagnosia) so I have no idea who the person is. Most people wave with their right hand, which, if they are walking towards me, is to the left of them. Therefore, I don’t see them waving but often notice that the person is staring at me. I then smile as I would to a total stranger, and am surprised when the person suddenly stops in front of me and speaks. On hearing their voice, I usually know who it is.

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If you know of anyone with hemi-neglect, hemianopia, prosopagnosia, stroke symptoms, left/ right -sided weakness, or anything similar, please let me know or tell them about this blog. I would love to hear from others who go through this or have had similar experiences.

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Brain Injury, MS and Ketogenic Diet, My Story, myelin, Uncategorized

4. MS and Myelin

MS and Myelin

What is Myelin?

Myelin is like the plastic insulation around an electric wire. It helps electricity pass through the wire effectively and efficiently, in other words, quickly and smoothly. Myelin helps signals pass through the brain “wires” quickly and smoothly. Myelin is actually fatty and is white in colour.

Yellow Coated Wire Near Black and Blue Coated Wire

For decades, it was believed that myelin could not be repaired or improved, and that MS was incurable. I was told that it was not possible for my brain to heal, and that, despite having initial signs of improvement, any improvement would most likely halt soon. However, over the last decade, this idea is beginning to change!

Damaged myelin: what happens in multiple sclerosis (MS)

Damaged myelin is like the insulation of my neural “wires” having holes, similar to an old electric wire where the inner copper wires can be seen through the holes. I imagine some of the signals from the brain getting lost through these holes or changing shape as they pass through this holey pipe. This means that signals from the brain are not going to get through as quickly, if at all, or they may be distorted.

What effect does this have?

If the signals from my brain are distorted or prevented from passing through, the desired action may not be carried out properly. For example, when I try to walk, I have to concentrate on (mentally) telling my left leg to lift up once my right leg has landed on the ground. However, often when my brain sends a signal to tell my leg to lift up to take another step, the signal doesn’t get through so my leg doesn’t lift itself or, if the signal gets distorted, my leg doesn’t lift itself up enough, or it lifts too late. The outcome is usually that I trip!

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My personal thoughts on what causes the damage

What causes this damage? This is the big question! Although the cause is still not known, I have my own ideas on this. I am NOT a doctor, an MS expert, or a nutrition expert but I DO live with MS and have met many others with different severities of MS. The following is a summary of one of my personal thoughts on why I believe I have MS and I am not trying to deny any information that professionals believe. For me, I believe the main reason that caused holes to appear in my myelin is a lack of (good) FAT intake.

Since the age of 10 (1980), I was on a low fat diet most of the time, always trying to get thin. This meant that I avoided all types of fat and always opted for the low fat versions of everything, which are usually high in sugar/artificial sweeteners, for example, yoghurts, cereals, sauces, and spreads. I also drank a fair amount of diet, carbonated drinks, also high in artificial sweeteners, to satisfy my sweet tooth. Furthermore, I never ate oily fish, e.g. salmon and mackerel. Essential fatty acids, which are vital for brain function, are not produced by the body and therefore must be consumed. It is only now that I realise that the fatty myelin is important to my neural “wires”, and that possibly stopping the intake of “essential fatty acids”, such as omega 6 or omega 3, into my body for over 25 years (!), meant that my myelin could not replenish itself with the necessary nutrients and essential fatty acids. Little is known about both de-myelination and re-myelination (in the central nervous system and brain) but it would seem logical that a deficit in my fat intake over many years could lead to holes in my fatty myelin. Cholesterol is also required by the body to make vitamin D, the very vitamin deficit that has been linked to MS (For review of research see: Sintzel, Rametta & Reder; 2018) https://link.springer.com/content/pdf/10.1007%2Fs40120-017-0086-4.pdf.

More FAT

A couple of years ago, I read a book by Dr. Terry Wahls called “The Wahls protocol”, which explained how nutrients influence your cells. Dr. Wahls had been a practising GP when she became wheelchair-bound with MS. With her medical knowledge and personal experience, she produced a healthy way of living that she has shown to help MS and many other diseases. Today, Dr Wahls is walking again and even cycling and has helped hundreds of people improve their MS symptoms. I decided to try the high fat, low carbohydrate diet (cutting out sugar completely) and the results were amazing.

My improvements

It had been over ten years without any feeling in my left hand fingertips. I had assumed that the nerves had all died and that I would never be able to feel my fingertips again. After only a few weeks on this high fat, low carb (HFLC) way of eating, the feeling came back and I can feel my fingertips again.

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Likewise, I noticed a huge difference in my brain. Often my brain would struggle to think straight, would get tired quickly, would be easily overwhelmed, and would not cope well with over-stimulation. After a few weeks of this eating plan, I began to notice that my brain had indeed improved and still continues to improve. Another improvement has been the coordination between my left and right side, for example, my walking is more balanced, and my left hand can participate in everything again. The improvements really have been incredible and I am so thankful to have found Dr. Wahls and grateful for her book.

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Diet has certainly played a huge part in my improvements and, before I move onto other things that have helped my MS, I will continue on this “food” theme. Next time, I will talk about the toxic effects of sugar/ sweeteners on my body function and brain. Thank you for stopping by and be sure to subscribe. If there are specific areas of interest that you would like me to write about, please let me know in the comments, I’d love to hear from you!

 

 

 

 

 

 

My Story, Uncategorized

2. When the brain goes wrong!

When The Brain Goes Wrong

At first, I couldn’t understand how the left side of my body could be “not working” and what it had to do with my brain. I couldn’t understand why the doctors were doing a Computerised Tomography (CT) scan and a Magnetic Resonance Imaging (MRI) scan of my brain! Amazingly, I could have drawn a (perfectly straight) line down the middle of my body separating what worked and what didn’t. Half of my face drooped whilst the right side was totally unaffected. It was upsetting when I caught a glimpse of my face in a mirror (before I lost my sight) and I could see that only half of my mouth was smiling! Even my left eye seemed to be droopy. The doctors originally diagnosed me with having had a stroke (cerebrovascular accident; CVA) and it wasn’t until four years later that I was finally diagnosed with MS.

So what did the brain have to do with this?

Well, like the plastic insulation that is around an electric wire to help it conduct electricity more efficiently, the neural “wires” in your brain have myelin around them to help conduct the signals from your brain to, for example, your finger. So, when you decide to move your left index finger up by a centimetre, a signal is sent from your brain through the neural “wires” which reaches your finger and moves the finger up by a centimetre. On managing this, feedback is then sent back to your brain to update the finger’s new location.

How does MS affect this?

In the case of multiple sclerosis (MS), damage to the myelin (the insulation around the wire) may result in gaps or holes, which prevent good conduction of signals to and from the brain. The signal may be distorted, slowed down, or even completely lost. This means that the desired action of moving your finger is distorted, slow, or not carried out at all. If the damage to the myelin is significant, the signals simply cannot pass through the “wires” and therefore you are unable to move your finger, hand, or arm. In my case, signals were not getting through to my left leg or arm so I could not move them. They were like dead weights. I was mentally willing my finger to move but it wouldn’t move! No matter how much I concentrated on the finger, it would not move.

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After six weeks in hospital, one afternoon while I was still trying to make my arm move, I felt the signal getting to my elbow. Of course there was no evidence of this and nothing moved, but I felt it! The next day, I could feel the signal reaching half way between my elbow and my wrist. A couple of days after that, the signal arrived to an inch away from my middle finger, and the following day I actually moved my middle finger a little bit!!!

These initial few weeks in hospital were absolutely hellish.  I continued to deteriorate on a daily basis and was scared to go to sleep for fear of waking up in the morning to find something else that wasn’t working. I just could not understand what was happening. Would I be able to walk again? Would I be dependent on a carer for the rest of my life? The thought of being a “burden” on someone filled me with horror. The sensation of a signal trying to get through to my finger was the first little glimpse of hope that I had had but would it be able to reconnect with my finger?

Next time, I shall explain how the brain controls the two sides of your body. Thank you for stopping by and be sure to subscribe. If there are specific areas of interest that you would like me to write about, do let me know in the comments – I’d love to hear from you!