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Dandy-Walker Syndrome

There are many different causes for Hydrocephalus.  Some are present from birth whilst others are acquired later on in life.

The cause of my Hydrocephalus is is a condition called Dandy-walker Syndrome.  Dandy-Walker syndrome is a rare group of congenital brain malformations which mainly affects the cerebellum which controls muscle coordination. The forth Ventricle which is located at the back of the brain is also enlarged and this affects the correct drainage of cereal-spinal fluid (CSF) thus causing increased pressure in the brain (Hydrocephalus)

Up to half of affected people have intellectual disability that ranges from mild to severe, and those with normal intelligence may have learning disabilities. Children with Dandy–Walker malformation often have delayed development, particularly a delay in motor skills such as crawling, walking, and coordinating movements. People with Dandy–Walker malformation can also experience muscle stiffness and partial paralysis of the lower limbs (spastic paraplegia), and they may also have seizures. While rare, hearing and vision problems can be features of this condition.

There are things from my childhood that I now look back on and link with Dandy-walker as I was only diagnosed with the condition just over 2 years ago but was told that I have had the condition since birth.  My speech was one thing that I had trouble with when I was younger and also my muscle reflexes don’t respond to usual testing.

The picture to the right Is an MRI image.  It Shows both signs of Hydrocephalus and Dandy-Walker syndrome the dark triangle at the bottom of the picture is the enlarged 4th Ventricle (Dandy-Walker) and the butterfly shaped part is enlarged left and right ventricles (Hydrocephalus)

Smartthings

What is Smartthings?

Smartthings is a home automation system that enables your to secure, monitor and control your home from anywhere. It has an easy to use app for both android and IOS.

Why I chose Smartthings.

If you have read part one to this blog you may remember that I had already set up Philips hue, to try to solve a problem, but I didn’t have the control that I wanted. I looked at many home automation systems such as insteon lightwave rf, z wave and zigbee. The reason I sided with smartthings over the other choices was that it didn’t just use its own signal to its own branded sensors but it was also compatible with other sensors from zigbee and z-wave. This would give me more flexibility to add different types of sensors. Smartthings was also directly compatible with the Philips hue system that I was already using.

What did I purchase first?

The first smartthings devices I brought was the starter kit it retails for around £199 and in the box you get everything that you need to get started. It contains the hub that connects all the devices together and 4 sensors. You can purchase the hub and sensors separately if choose.

Smartthings App
Smartthings has an App on IOS, Android and Windows stores Which enables you to monitor and control your smart phone devices as well as set up automations based on your preferances

The main page of the app has the monitor. Here you can arm the security side of the app that changes how your devices respond for example you have a motion sensor that turns on the light when you’re at home but once you have left the house and smart things is set to arm, instead of turning on the light it will notify you of an intrusion once motion has been detected.

The part of the app that I find myself using more often is the things part of the app. Here I can turn lights and devices on or off and see the status of the individual devices.

 

 

 

The picture to left shows the light in the Kids bedroom. I can turn to on or off and even change the brightness which is handy when they go to bed and want a little light until they fall asleep I can then turn off their light once I know there asleep from anywhere in the house.

The main benefit that I think I have Home Automation is when the system does things for itself Using Automations that I have set up. For example when the front door opens it turns the light on that’s by the door that way we don’t have to stumble around in the dark until one of us turns on the light. Another example is how I have the bathroom lights set up. During the early morning and the evening when a motion detector senses that someone is in the bathroom it turns the lights on at 100% and turns the lights off again once motion stops and during the night when everyone is asleep if someone wakes ups and goes to the bathroom, instead of the light turning on at 100% it turns it on at 10% which is enough light to see what you’re doing but not enough light to hurt your eyes. I have found that this automation works really well so I’m going to do the same automation rule with the lights in the hallway and the stairs so that as you walk to the bathroom the lights in the hallway does the same thing. It is really useful if you have younger children in the house as they can’t reach the wall lights and also have a tendency to leave lights on.

The possibilities are endless!

The possibilities for home automation are endless. With a little thought you could achieve anything for example you could have the lights in your house gently wake you up in the morning and once your awake the lights could fade as the blinds or curtains open themselves or another example could be that when a water sensor detects and leak from a burst pipe it could automatically turn of your water main and then notify you that the water has been turned off and suggests for you to call a plumber. This could save you lots of money from water damages.

If you would like more information you can visit smart things website at here

And if you would like to purchase any of the products that I have mentioned please click the links below that will take you directly to the product on amazon.

 

Home Automation Part 1 Philips HUE -Product Review

What Is Philips Hue?

Philips HUE is a smart lighting system that gives you added control for lighting.  There are many different products for offer but for now I’m going to talk about the 3 main products that I currently have.

Why I decided to get Hue.

The reason that I decided to give Hue a go was because of a problem that arose in my house, in where the light pull switch that is in the bathroom had the tendency to fail so when you pull the cord to turn the light on nothing would happen.  The reason this was a big problem was because my eldest son Alfie was becoming more confident in going to the toilet by himself, and as many children do he had a habit of leaving it till the last minute before going.  What would then happen is he would pull on the cord harder and eventually the cord would snap.  I kept on repairing the string but it would get shorter and shorter.  I then decided to get a Philips Hue Personal Lighting Wireless Dimming Kit [Energy Class A+].  I was then able to put the hue remote lower down on the wall for my son to reach.

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Picture of the remote/ wall plate.  As you can see it has four buttons on, brightness up and down and then off.  The switch is a wall plate and the remote attaches itself to the wall plate via magnets.  You can customise the switch to control up to 10 bulbs.

My Next Addition.

My next purchase I made  was to get the Hub that would control additional bulbs and switches.  The Hub connects to your home network via your router and enables you customise and control your Hue bulbs via a smartphone app.  There are two main revisions of the hub.  I purchased ver 2 (shown below),  and the main diferance between ver 1 and ver 2 is, that ver 2 has Siri support.

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Philips Hue Hub Ver 2

Does the Hue system do all I wanted it to? 

The answer at the time I installed it was no.  What I also wanted was a motion sensor to be able to turn the lights on in the bathroom when my son ran to the toilet and then turn off the lights once he had left.  I then decided to purchase another system to work side by side with Philips Hue called Smartthings.  I do like Philips Hue and I’m planning on getting more bulbs for the rest of my house.  I have had few if any problems with the system and I like the added control that it gives me.  Philips have since released a motion sensor that you can add to the system.

Stay tuned for a smartthings review in the future.

You can click the links below that will take you to where you can buy each of the products from amazon.

Philips Hue Personal Lighting Wireless Dimming Kit [Energy Class A+]

Philips Hue Personal Wireless Lighting Home Automation Bridge 2.0, Apple Home Kit Enabled, Works with Alexa

Philips Hue White Personal Wireless Lighting LED B22 Light Bulb, 1 x 9.5 W Bayonet Cap [Apple Homekit Enabled]

Philips Hue Intelligent Motion Sensor Smart Wireless Lighting Accessory

Samsung SmartThings Starter Kit (Works with Amazon Alexa)

 

 

 

How to Make the school run less stressful

Many parents that do the school run in the morning often say that it is one of the most stressful times of the day.  If your one of those parents then there are some useful things that you could start doing to help your school run easier.

Preparation

The main trick to a less stressful morning is the to prepare the night before.  Some of the things you may want to do…

  1. Make Lunches – For all those that have packed lunches, make them the night before and keep them in the fridge.
  2. Uniform – Lay out the Uniform including socks and underwear to avoid searching in the morning.
  3. Bags – Make sure that all the bags are packed with all that your child will need for the following day, for example one of my sons is in preschool so needs a spare change of clothes in his bag incase he has any accidents.
  4. Forms – Make sure that any forms or paper work that needs signing is signed and placed in there bags as well.
  5. Seasonal Clothes – Get in the habit of keeping seasonal clothes all together with shoes and coats and make sure that nothing is missing.
  6. Breakfast – Breakfast is classed by many as the most important meal of the day, yet many still skip breakfast.  Make preparations for breakfast the night before.

You may also find it less stressful by not taking the car, and instead walking or if you live too far from school try taking the kids on bikes or scooters.  Many schools now have a place that you can keep the bikes during the day.  Just make sure that you use all necessary safety gear like helmets and you may want to consider locks for the bikes.

Movember.

So the month of November is here and with it brings Movember.  The Movember Foundation are the only charity tackling men’s health globally.  They address some of the biggest health issues faced by men: prostate cancer, testicular cancer, and mental health and suicide prevention. There independent of government funding, which means they can invest quicker in programs that work.

People can choose to get involved in a variety of different ways.  If your male you can start by growing a moustache for the month which will help raise awareness.  You can also plan fundraising events or “Take the move challenge” where you can get physically active and raise funds for men’s health.

In 2015, Mo Bros and Mo Sistas from across the UK helped us raise £6.8 Million for the Movember Foundation.

These donations allow the Movember Foundation to raise awareness, invest in vital men’s health initiatives and run Movember each year.

If you would like to get involved yourself feel free to head over to Movember UK to sign up or donate here

6 Tips to help get rid of Headaches.

 

Headaches are a common problem with people of all ages.  Some get them more frequently and more intensive than others, but there is usually a simple reason why you may be getting the pain.  Common causes of headaches include stress, tension, restlessness, sinus problems, migraines, lack of sleep and dehydration.  If you can work out the main reason if any you can quickly determine the best course of action.  Here are some tips you can try yourself at home.

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1. Drink some water.  One of the reasons you may be getting a headache could be that your dehydrated and simply drinking some wat
er can help alleviate  the pain.

2. Sleep.  Another simple reason you may be getting a headache could be lack of sleep.
Even if you have had enough sleep the night before you normally won’t feel pain in your sleep so sleeping will help you pass the time whilst the pain wears off.


3. Hot or Cold Compress. 
Depending on the type of photogallery_congestion_remedies_05_full.jpgheadache you experiencing you can place either a hot or cold compress to help with the pain.  Cold compress such as ice packs when placed on your forehead and temples can help with stress headaches.  The cold temperature will help shrink the blood vessels in the area and increase blood circulation.  It can also help numb the area.  Hot compress on the other hand can help relax muscles that could be tense and help reduce the throbbing pain.  Try either or and stick to what works best for you i prefer the cold compress as it works best for me.

4. Natural remedies.  There are many natural remedies that have been claimed to help with Headaches.  Some of which are fmd-021-un-1kg-nirvana-oil-free-sea-salted-almonds

  • Drinking lemon water
  • Eating apples
  • Cinnamon
  • Ginger helps with inflammation of the blood vessels
  • Lavender oil scent helps with relaxation and head pain
  • Peppermint in food and oil scents can also help with headaches
  • Almonds contain  salicin which is believed to be a natural pain reliever
  • eucalyptus oil

Not all natural remedies work for everyone so I suggest to try them and see what works best for you.

5. Look after your Gut! many believe that your gut and your brain are linked and if you have a healthy gut you will have a healthy brain.  Make sure you exercise regularly and eat healthy.  You may also have an intolerance to some foods that could be triggering headaches so it could be worth while to try and see if eating particular types of food are giving you the pain.

Yogatest1.png6. Destress yourself. Stress is a big trigger for many people.  Try and find an activity that will help you destress daily.  This could be something like Practising Yoga or Tai Chi, reading a book, going for a walk or taking a bath.

 

O.C.D

 

OCD if you didn’t know is a mental disorder that affects between 2 and 3 percent of the population.  OCD is when you have Obsessive thoughts that then lead to having the need to complete tasks or rituals Compulsions, otherwise you will have increased Anxiety.

My O.C.D affects me in all sorts of ways.  I have thoughts that would lead me to do things, when the thoughts are there to get rid of them.  It may be touching an item, counting items or moving things which is also triggered by another problem I have called Perfectionism Disorder.  I have increased Anxiety at times from having OCD and social Anxiety,  which lead to panic attacks.

Some of my compultions happen to be the usual ones that people tend to associate with OCD like washing my hands, checking locks and windows, checking candles, turning appliances on and off multiple times like the cooker and lights,

When I get anxious I Tap, pinch and pull things until I can do something that releases the anxiety. If i don’t do that it would tend to lead to a panic attack.

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Flow Restrictor

So I said in an early post that I had undergone some ICP ops, but i didn’t tell you what the first one lead too.  The reason I had it was because I was still experiencing some major head pain whilst being upright and my surgeon suggested that the problem was that I had been used to a high pressure for such a long time that I was finding it difficult to adjust to a “Normal” and safe pressure.  He said that Shunt was working but he waste to check the exact pressure i was running at so he could determine what to do next.  After the ICP gave him the info that he needed he suggested that i get a flow restrictor fitted in my neck.

The Flow restrictor is a device that gets fitted to part of the tubing thats attached to your shunt and slows the flow of CSF down.  It is gravity feed so only works when I’m stood upright.  This was hopefully going to make me feel much better.

I had my flow restrictor fitted under Local Anaesthetic so was awake for my op but I believe they can put you to sleep if need be.  what they did was numb the area of my neck where they were going to operate.  They cut a small hole in my neck cut through my shunt tubing and plugged the restrictor into both ends of the tubing.  I didn’t feel pain as such during most of the op I did however feel lots of tugging on my shunt and could feel it in my head.  I also felt the most strange feeling when they plugged the end of my shunt back into the tubbing.  It was a sort of sharp pain that shot up into my brain but went away within seconds.  I was then stitched up and after spending the rest of the day in the ward was discharged from hospital.

The flow restrictor has certainly helped with the pain i was experiencing when stood up right as I can now stand and sit upright all day if I want too,  I do still have a long road ahead though as currently still suffer with daily headaches, Shunt pain and migraines.

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ICP Bolts

Intracranial Pressure (ICP) Monitors or Bolts are devices that are used to monitor the Intracranial pressure inside you head.  I have had two or these in the past and both have been different.

My First ICP 

My first ICP was back in June 2015 Just a few months after my VP Shunt was installed.  I was getting some really bad head pain and had difficulty staying upright for prolonged periods of time so my surgeon decided that I should get the ICP moniter for a minimum of 24 hours to see what my pressure was.  I didn’t really know what to expect when I arrived at the hospital as I didn’t read up about it before going in.  I thought that if I didn’t know what was about to happen I wouldn’t scare myself but that gave me the reverse affect I was so anxious about what was in store for me.  There is an option to be put under General Anaesthesia so your asleep for the operation but for some reason I was having mine done under local anaesthesia.  When the time came I was taken down to the Pre op area where they get you ready to go to theatre as I was having the procedure done there.  The nurses were talking to me throughout to try and keep me calm.  Firstly the surgeon shaved the front right part of my head where the bolt was going to be placed.  After he cleaned and sterilised the area he made the incision.  I felt the blood run down my right ear but didn’t feel anything else.  I was expecting some sort of power tool to drill through my skull but instead (by the feeling I was experiencing)  and the noise I heard seemed to be a tool similar to cork screw.  After a bur hole was made in my skull the surgeon screwed the bolt to my skull and inserted the probe into my brain and connected it to the monitor, which happened to be some main box that converted the signals so that they could be seen on a standard laptop.  As the anaesthetic wore off it was painful and uncomfortable it looked like I had an areal coming out of my head.  It was in for about 2 days before being taken out  whilst I was still in the ward.  I had a little local anaesthetic to the area before the doctor pulled the probe out of my head and unscrewed the bolt before stitching me up.  It felt very strange at the time and painful after the anaesthetic wore off but the pain didn’t last to long and the procedure went well.  My second ICP was a bit different.

 

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My Second ICP

I had an idea for what was in store for me when going in for my 2nd ICP, but this one turned out to be a bit different than the first.  It was being planned to be under General Anaesthesia, the reasoning I think is because of my problems with anxiety, but was told before the op that as they had difficulty establishing an air line when I last went under, they didn’t want to take the added risk.  So the decision was made for the op to be under local Anaesthesia again.  The differences this time were firstly the tools they used to make the bore hole this one resembled the old bit and brace (or like a whisk that has that gear like system) it made a lot more noise and I felt a lot more vibration in my skull.  I also felt the probe being inserted a lot more this time than the last and that pain only increased as the Anaesthetic wore off.  It was explained to me that the brain has many nerves in different places and that last time I was lucky in the placement of the bolt where as this time they seemed to find an area where i had a lot more nerves and that is what was giving me the pain.

During my time in the hospital for this ICP I was also approached my some Scientists that were doing a study to see if you could measure the intracranial pressure from your ear canals by listening to sound waves.  If this turned out to be correct it would mean that you would not need to have surgery every time that you needed your intracranial pressure to be monitored.  I agreed to having these extra tests but unfortunately the equipment that they were using malfunctioned and they couldn’t complete the tests.

When the ICP was taken out it hurt a lot more than the last and I experienced vertigo like symptoms similar to when I had my shunt inserted.  I panicked as I thought back to previous experiences but luckily after about half a day i started to feel better and was discharged from hospital.

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