Monday, 29 September 2014

ALS (A Likely Story?) Ice Bucket Challenge

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Thank you to my friend Sarah for this nomination. I nominate all of my readers to educate themselves a little about an illness you may have hear off but don't understand. Here is a list of "invisible illnesses" that many suffer with but no one can see. 

I'm sure you have all heard of this Ice Bucket Challenge by now? If you haven't taken part in it yourself, I'm sure your social media feeds are full of videos of friends taking part and nominating each other. No doubt, some of you are cowering in a corner hoping that you don't get nominated. Like me


I don't have an aversion to making charitable contributions. Far from it. I took part in the No Makeup Selfie campaign (despite hardly ever wearing makeup) for Cancer Research whilst donating money. I support Sane, Mind and Time to Change for mental health. I volunteered at SHOC over the festive period I am donating something that has yet to be decided for a friend's charity event next year and I donate as and when I see appropriate collection pots.  



So why am I dodging this one? Well, the answer is simple, I hate water!  I had several unfortunate incidents involving water throughout my childhood and have been left psychologically scarred by this. Of course, I'm well aware that dumping a bucket of ice water over my head isn't going to drown me but it doesn't lessen the fear any. Even when I'm showering, if the water goes unexpectedly into my face I panic. Psychological scars cut deeper than anything physical and can lead to unsavoury behaviours which is why I took a dive when it came to pouring cold water over myself. The next best thing I could do was to write a blog and raise some level of awareness so here it is! 


What is ALS?

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. 


Amyotrophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment–"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.





The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. But, progressive muscle weakness and paralysis are universally experienced.


What is MND?


Many people seem to misappropriate the term motor neurone disease. Often it is used to refer to a group of diseases which includes ALS. 

MND is a degeneration of specialist nerve cells, or motor neurones, in the brain and the spinal cord which are responsible for muscle action.  Gradually, messages stop reaching the muscles, which leads to weakness and wasting and results in difficulty breathing and swallowing and a reduction in muscle mobility. The cause of MND is not known although there are a number of theories. It is thought that MND is caused by a combination of genetic and environmental factors.


The symptoms of MND include:

Muscle wasting (this is often first noticed in the muscles in one hand, or in one arm or leg)
Muscle weakness (it might be difficult to open bottles or jars, carry heavy objects, or climb stairs)
Fasciculations (involuntary contractions of part of a muscle, often felt as flickers of movement or small twitches just under the skin)
Speech problems
Swallowing problems and excessive saliva (drooling)
Cramps and muscle spasms (spasticity)

In the later stages of MND, the muscles weaken in the chest, back and neck and people experience difficulties with breathing.

So why the ice bucket challenge? Well, I've been doing a little digging and the origins are somewhat elusive. According to the Wikipedia page, the challenge became viral on social media during July-August 2014. People made donations to the ALS Association and the Motor Neurone Disease Association as well as various other organisations. It is alleged that the feeling of the freezing water gives the participant a small insight into how it may feel to live with ALS.


It is thought that Pete Frates, a former devision 1 college athlete, began the campaign for ALS.


A number of celebrities have taken up the challenge, including the ambassador of the MNDA, Benedict Cumberbatch. 






Whilst the Ice Bucket Challenge has raised both money and awareness for ALS and MND, it has also attracted a lot of criticism. Some people have accused participants of being "self-congratulatory" focusing on the fun rather than donating money and studies show that the majority of participants don't actually donate. In fairness, the original challenge stated that if you were unable to donate, the forfeit was to douse yourself with ice water. The ALS Association also caused some controversy when they made an attempt to trademark the Ice Bucket Challenge. This application was rather quickly rescinded after they faced a lot of criticism.


I have found that any charitable act comes with a certain level of criticism. Take, for example, the No Makeup Selfie. People were criticised for this campaign as it was "attention seeking". However, it raised £8 million for Cancer Research in 6 days! 



Call it what you will. These campaigns are simply fads. They pick up speed as soon as a celebrity gets involved then suddenly everyone wants to take part. Trends are no different be they diets, fashion or the latest must-have gadget. Regardless, these campaigns not only raise a lot of money but also make people more aware and have these issues in the forefront of their minds.

It is good to educate oneself about these things as you will undoubtedly come across an individual who suffers in some way or another with an illness you were previously unaware existed and even if you can't physically help that person, you at least know what they are going through to an extent and can offer appropriate support as needed. This is part of the reason I volunteered for Time to Change recently.  Yes, people know mental illness exists, it's all around us on a daily basis. What they may not know however, is that someone who is always smiling on the outside could be harbouring a "dirty secret" that is a mental illness. 




So there you have it. I hope that you now know a little more about ALS/MND and you will look for further information about this illness and how it can affect someone. 


If a loved one is suffering ALS or MND, both associations have help and support for carers and families alike. 


The take-home message from this blog, if you will, is to simply make others aware. Awareness is key when it comes to any little known illness and show your support whether that be by dumping ice water on your head, taking a selfie sans makeup, wearing a wristband or simply tell someone that you are there for them.


It doesn't matter HOW you do it, it simply matters that you DO.

Keep Smiling :(: 

Sunday, 28 September 2014

Time to Change

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If there is anything I would love to happen within society, it's for people to change their minds a little about how they perceive the "mentally ill". On 14 August, I participated in an event organised by Time to Change. It was a gloomy rainy day to some but to me, it was an excuse to play and have fun in the rain! Prior to the event, I had some training at the Mind centre in Stratford. I was rather looking forward to this however, life intervened as so often happens.

I'd set off nice and early to get to Stratford with plenty of time to walk to the training centre. I used to live near Stratford so I figured it would be easy enough to find. However, I have not been to Stratford since the new Westfield Stratford City had opened and I have to say, I was NOT prepared. I ought to have planned my route more carefully and ensured I had all the information I needed.


My journey into Stratford was pretty uneventful. There were slight delays as can be expected on London transport but I wasn't worried as I'd given myself plenty of time. When I got off at the station, I became a little confused. It all looked so different from what I remembered. I decided to head out of the Westfield Stratford City exit and use google maps on my phone to figure my way from there. Unfortunately, when I get even slightly lost, or when I find myself in an unfamiliar place, I start to panic. I was fumbling with my phone trying to get the app to work and trying to find a road sign so I knew exactly which direction I needed to head in. I'm not the best at reading maps so I need as much information as possible!



By this point, I was starting to get a little flustered. I'd seemingly found my location but it told me that it was a 35 minute walk to the destination. I was confused as I was certain the centre was really close to the station. I decided to ask for help but all 6 of the people I asked had no idea what I was talking about! This made me panic some more. Had I taken down the wrong information? Had I dreamed this whole thing up? I was starting to get very anxious. I decided then to ask a bus driver. Bus drivers MUST know the area right? That's what I thought. I went to the nearest bus and asked the driver for directions to Broadway. I explained that I was looking for Mind and he told me he was going past Broadway. Relieved I boarded the bus. I sat near the front so I could look out for the place I was heading to and if I happened to miss it, I'd be close enough to the driver for him to let me know.


I was on the bus for about 15 minutes when I went up to the driver to ask if we'd passed Broadway yet or if it was nearby. I realised I had only 10 minutes left to get to my destination. The driver informed me that I should get off at the next stop and it was a short 5 minute walk. I walked in the direction he told me for a further 10 minutes and I couldn't find Broadway at all. To make matters worse, there were no road signs so I couldn't even check my map. At this point, I decided to give Mind a call to explain that I was running late and to check for directions. Whilst on the phone, I had to walk for a further 5 minutes or so before finding something that could be seen as a possible landmark.  I was starting to really panic by this point but the lady on the phone (Pauline I think her name was) managed to keep me calm enough to try and figure out where I was.


Eventually, I found out that I was in Hackney! I tried to find my way back to a bus stop but I couldn't figure it out in my confused state. I called Pauline back and explained my situation and she told me to get back on the same bus but in the opposite direction, get off at Stratford and she would help me find the centre. Unfortunately, I didn't know the area and my battery was running out on my phone. I tried to follow the same route looking for the bus stops but it turns out that the bus followed a one-way route and I had to walk all the way to Victoria Park. I hopped on the bus to Mile End then got the tube to Stratford. By this time I was almost an hour late for my training. I called Pauline back and she directed me to the right place, not 5 minutes from the station! When I finally got there I was a wreck and it had begun raining! Thankfully they were on a break and Sebastian was outside and able to direct me to the appropriate room. 



Once I finally got into the training I was able to relax and got chatting to some very interesting people. By this point I was finally excited about doing my volunteering! The training was very informative and I was surprised to learn a few things. 

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On the day of the event, things looked pretty gloomy. I arrived with more than an hour to spare this time round. I had a browse around the village taking in as much as I could and preparing myself for the rest of the afternoon. I played some 1 on 1 basketball with one of the other volunteers in the pouring rain and upon seeing us play, a few younger people who may or may not have been there for the Time to Change event joined us. It was a lot of fun! 


Before my shift started we had a brief and we watched some very interesting short films that you can watch on the Time to Change website. I have to say, I was feeling nervous again at the prospect of speaking to people. 

Once we got out there, it seemed natural to just chat with people, starting out with a general "Hi, how's it going" and then leading on to talk about the Time to Change ethos. It seemed that a lot of people had just stumbled upon the village whilst exploring the olympic park which I guess is cool. I had lots of interesting chats with people who either knew nothing (apart from what they'd read in the media) about mental health or knew someone who had an illness. I was actually quite surprised how ill informed some people are. 


As the end of my shift loomed I was feeling exhausted. Having hyper mobility syndrome means standing up a lot can wreak havoc on my knees and my back so I decided to check out early.

The following day I spent in bed as I felt completely overwhelmed and exhausted. However,  I felt happy that I got involved in something I feel so strongly about and I have since signed up to become a Champion

I am hoping to be able to do more stuff soon but lately it's been so difficult what with being unemployed etc! 

Here's looking towards a brighter tomorrow though! 

Keep Smiling :(: