Hard to believe it’s nearly 7 years since I first wrote this article https://www.blogger.com/blogger.g?blogID=3909631325093680810#editor/target=post;postID=4800339557559087098;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=8;src=postname
I was in such a dark place when I wrote that. However, a lot has happened since then so I thought I’d provide an update (that’s if anyone wants to read it haha) on my condition.
First of all let me give a brief description of my condition. I have a condition called Becker’s Muscular Dystrophy. This is a neuromuscular condition, caused by a lack of protein called Dystrophin. This causes my muscles to lose their strength and structure. This affects mainly my legs and arms. However, it also causes problems with both the Heart and Lungs. It may also lead to issues such as Kyphosis (spinal curvature). Eventually it will lead to permanently being in a wheelchair as my legs lose even more strength. However there is no set timescale. Unfortunately there is no cure.
Anyway, I thought I would try and give an update on my condition and how I cope with it. Firstly, I cannot stretch my feet too much as my calf muscles and Achilles’ tendons are so tight. This became very apparent when learning to drive and using the pedals was tough. My feet also now tend to point inwards. Initially I didn’t even realise this. It was my parents who pointed this out to me. To combat this I try my best to do as many of my floor exercises as possible. I also have to wear splints every night (trust me, wearing them is no fun). My thigh muscles are also very weak at times, hence why I try to avoid stairs where possible as they can be tiring. I also have a set of exercises that I should be doing to combat this too. At this time I should say that these exercises aren’t to increase my muscle strength, they are merely to retain what strength I have in them. As for my arms, sometimes they’re fine but they can be hit and miss. Sometimes I have no problems with them, sometimes I struggle to lift a bag of shopping. At times I can lift boxes, other times I can’t push myself out of bed so end up flopping around like a fish on my bed. As you can probably tell my condition is very unpredictable. No day is ever the same.
My back does have some issues now. It is slightly curved. Standing for any length of time can be painful and regular rests are needed. Even though it’s a slight curvature, it can cause a lot pain to the extent that I can struggle to love even when sat down.
In terms of my mentality, whilst I try and remain cool with my issues, I struggle a lot with it at times. The idea of being in a wheelchair and not being self reliant terrifies me. The idea of having surgeries terrifies me too. The worries about heart issues will always be there even though I have regular heart tests. Knowing that my life will probably be shorter than average does play on my mind. I do know that my issues are minor compared to others with my same condition but I can’t help but worry about it.
Having said all this, there is help out there. The great guys and girls at http://www.musculardystrophyuk.org/ are raising money to provide people such as myself and others with the best care needed. They do this by using initiatives such as the “Makes Today Count” skydive and “Move A Mile For Muscles”. They also provide funding for cutting edge research on things such as Exxon Skipping and other research, helping to prolong the life of people with muscle wasting conditions.
There are also the Muscular Dystrophy Trailblazers. These are people who are at the forefront of the campaign, trying to raise awareness of Muscular Dystrophy. They also try and provide social justice for people with disabilities. They report on conditions faced by people with disabilities and try and work with varying governing bodies, trying to make the world a fairer place.
Wednesday 21 March 2018
Friday 17 August 2012
My Centre For Life Tour
First of all, let me explain why I visited the Centre For Life and what it is. The Muscle Centre at Newcastle upon Tyne is one of three centres in England for the diagnosis and management of inherited muscle diseases which are supported by the British Muscular Dystrophy Campaign. The Muscle Centre runs clinics in Newcastle and at various locations across the North of England. The Centre For Life is the main adult muscle clinic in the UK.
When I was young I was diagnosed with Beckers Muscular Dystrophy. I have already spoken about this in previous blogs here and here. Recently I have joined the Nottinghamshire branch of the Muscular Dystrophy Campaign.When I told them I was visiting Newcastle the lovely Sara Wilcox arranged for me to visit the Centre the day I arrived. After a couple of hours waiting around I visited the Biomedicine West Wing. I got into reception and me being me I completely forgot who I was supposed to be meeting. So there I was at reception, looking through past emails trying to find a name. Eventually I met up with Dr Steven Laval. The first thing we talked about was just exactly what the Centre For Life does. You can read more about the Centre For Life Science Village here. He told me a little about the history of the Centre. His department originally started out specifically researching Limb Girdle Muscular Dystrophy (LGMD). They have now spread their research into Duchenne Muscular Dystrophy too.
I was then told that all muscle biopsies (yes every single one) from the past 30 years are kept and still are there. This means that the muscle biopsy I had taken from me 23 years ago is still kept in that building. Crazy stuff.
He then gave me some info on the other Dr's/Professors who work there. He also told me how they are in contact with various other places around Europe (which obviously helps with research). We then started the "tour".
The first place we looked around was a research room where students were writing up some results I'm guessing. Although they clearly weren't working (the students, not the research). We then looked into a lab where they had been doing research into LGMD as the microscopes had the intials on them. Yet again there was no-one in there. Here's where it gets interesting. We then went into a small lab where heart cells of mice have been stored for research. We discussed how they were stored by a machine which used recycled air so the specimen wouldn't be tainted by bacteria. This also keeps the temperature constant. We then looked at some of the cells that had been stored. The first one had very little happening. The second one however, had what can only be described as small looking volcanoes. These would occasionally "erupt". What I was actually seeing was the heartbeat of the cell. Even though it was very small it was probably the highlight of the tour.
It was at this point I started to realise that most of the science stuff had gone way over my head. So I tried to make myself seem a bit more intelligent by talking about things like CK Levels.
He then proceeded to talk about a machine that is used to look at blood test and muscle biopsy results. Whilst this was happening we stopped at many posters, I cannot remember what was as the majority of what was said was specifically dedicated to DMD and LGMD so I got confused at times.
When we finally sat down I got chance to ask him some questions I had thought about. The first thing I asked about was Exon Skipping. Having BMD I thought that any research on DMD would be beneficial to me. Turns out thats not so as it would only result in people with DMD having a milder form of BMD. Whilst I am happy that this is a start, I was slightly disappointed that it would have no effect on me (I know that sounds selfish). There is a good explanation of what Exxon Skipping is/involves here.
I then asked him about how the Centre is funded. It is funded partly by the NHS, partly by the University of Newcastle and partly by the MDC (Muscular Dystrophy Campaign). What stuck with me was the fact that he said that the MDC was struggling to fund the Centre recently. This shows why it is important that we keep spreading the word about the Muscular Dystrophy Campaign. We must also raise awareness of all forms of MD.
When I was young I was diagnosed with Beckers Muscular Dystrophy. I have already spoken about this in previous blogs here and here. Recently I have joined the Nottinghamshire branch of the Muscular Dystrophy Campaign.When I told them I was visiting Newcastle the lovely Sara Wilcox arranged for me to visit the Centre the day I arrived. After a couple of hours waiting around I visited the Biomedicine West Wing. I got into reception and me being me I completely forgot who I was supposed to be meeting. So there I was at reception, looking through past emails trying to find a name. Eventually I met up with Dr Steven Laval. The first thing we talked about was just exactly what the Centre For Life does. You can read more about the Centre For Life Science Village here. He told me a little about the history of the Centre. His department originally started out specifically researching Limb Girdle Muscular Dystrophy (LGMD). They have now spread their research into Duchenne Muscular Dystrophy too.
I was then told that all muscle biopsies (yes every single one) from the past 30 years are kept and still are there. This means that the muscle biopsy I had taken from me 23 years ago is still kept in that building. Crazy stuff.
He then gave me some info on the other Dr's/Professors who work there. He also told me how they are in contact with various other places around Europe (which obviously helps with research). We then started the "tour".
The first place we looked around was a research room where students were writing up some results I'm guessing. Although they clearly weren't working (the students, not the research). We then looked into a lab where they had been doing research into LGMD as the microscopes had the intials on them. Yet again there was no-one in there. Here's where it gets interesting. We then went into a small lab where heart cells of mice have been stored for research. We discussed how they were stored by a machine which used recycled air so the specimen wouldn't be tainted by bacteria. This also keeps the temperature constant. We then looked at some of the cells that had been stored. The first one had very little happening. The second one however, had what can only be described as small looking volcanoes. These would occasionally "erupt". What I was actually seeing was the heartbeat of the cell. Even though it was very small it was probably the highlight of the tour.
It was at this point I started to realise that most of the science stuff had gone way over my head. So I tried to make myself seem a bit more intelligent by talking about things like CK Levels.
He then proceeded to talk about a machine that is used to look at blood test and muscle biopsy results. Whilst this was happening we stopped at many posters, I cannot remember what was as the majority of what was said was specifically dedicated to DMD and LGMD so I got confused at times.
When we finally sat down I got chance to ask him some questions I had thought about. The first thing I asked about was Exon Skipping. Having BMD I thought that any research on DMD would be beneficial to me. Turns out thats not so as it would only result in people with DMD having a milder form of BMD. Whilst I am happy that this is a start, I was slightly disappointed that it would have no effect on me (I know that sounds selfish). There is a good explanation of what Exxon Skipping is/involves here.
I then asked him about how the Centre is funded. It is funded partly by the NHS, partly by the University of Newcastle and partly by the MDC (Muscular Dystrophy Campaign). What stuck with me was the fact that he said that the MDC was struggling to fund the Centre recently. This shows why it is important that we keep spreading the word about the Muscular Dystrophy Campaign. We must also raise awareness of all forms of MD.
Monday 13 August 2012
My Newcastle Trip.
First of all let me explain why I went to Newcastle. I went to visit both family and friends. I also had the once in a lifetime opportunity (at least for me) to tour SJP. My other reason was to tour the Centre For Life. Anywhoo here's the story of my trip.
FRIDAY
For some reason I thought I'd tempt fate and travel up on Friday 13th. The train journey up was normal i.e there was no problems (although the journey up made me appreciate the fact I don't live in Yorkshire haha). The journey only took 2 hours which I think is pretty good considering it takes us nearly 3 hours in a car. I arrived in Newcastle about 11:30ish and I did what someone who loves food usually does... I visited 2 cafes (merely to waste time of course).
Before I talk about the Centre For Life I should tell people why I wanted to visit there so much. For those of you who follow me on twitter you will know I suffer from BMD (Beckers Muscular Dystrophy). The Muscle Centre and The Centre For Life in Newcastle upon Tyne are one of three centres in England for the diagnosis and management of inherited muscle diseases which are supported by the British Muscular Dystrophy Campaign. I'm not going to go into much detail about this as I will be doing another article on it in the next few days.
After that I did the normal holiday things i.e find the hotel, get unpacked etc. But then I looked out my window and saw SJP. What an amazing site it was. It was at this point in the blog I was going to put the picture I took of the stadium, but me being me I seem to have deleted it. Anyway, after that I decided to go to the restaurant and get food. £15 for Scampi, Chips, Onion Rings and Coke is far too expensive. I then got quite bored so I watched TV (fun holiday so far). I then went back down to the bar, had a couple of pints and got talking to a ginger mackem. He called me a glory supporter because I started supporting Newcastle when King Kevin was in charge. He then proceeded to tell me that all NUFC fans were obsessed with Sunderland. He then told me he'd been to SJP on numerous occasions (ironic). Not much happened after that as I was completely zonked.
Saturday.
Saturday was far more eventful. I was meant to be visiting my dads cousin for lunch. Everything was going well until I exited the hotel. I went to look for Monument... and got lost. When I found it I headed towards the Quayside... and got lost. I was so lost I had to ask my twitter followers where I was. With the help of @JedAyeGeordie and Gareth (@TheHotspur103) I found my way to Prima Restaurant. I was supposed to be there about 1PM. I got there just in time. I proceeded to wait there 45 mins for my cousin who I thought had never turned up. I decided instead of sitting there like a lonely twat, that I order. I I have never had a nicer pizza in my life. As it turns out, my cousin was sat outside the place while I was sat inside.
Then took a trip to the Quayside to have a look around. I took some photos of the Tyne Bridge and the Millennium Bridge. That is one beautiful place.
After that you'd have thought things would've got better. How wrong I was. I found out Deborah (@LadyEashington) was in John Lewis. So I decided to see her. I tried to find Eldon Square from SJP... and got lost again. When I found it, I got lost in it. I then made the trek right to the top of it, only to find out she wasn't there. At that point I was so tired I sat in there for an hour eating. I made it back to the hotel in one piece. Then as a thank you I decided to go to The Hotspur. Quality pub, quality landlord is all I have to say about that place. As with Friday I was so tired when I got back, so as you do I decided to watch Gladiator.
Sunday.
Sunday was quite frankly, very emotional. First of all I wasn't sure what I was going to do as I had something planned, but that changed at the last minute. So I decided to visit the the Quayside properly this time. I got there fine. I then walked all the way to Ouseburn(?) to take this photo
I then walked up to the railway bridge, thinking I could get to Central Station from there. I couldn't find a way. I ended up walking all the way back along the Quayside and around. And yes, when I went along Collingwood Street I did start singing The Blaydon Races. When there I waited 45 mins for my uncle as apparently he got lost too. He took us to Crawcrook to see my aunty. We then went to Prudhoe to see family graves. We laid flowers at the graves of my Great Grandma, Great Grandad and Uncle Ernie. I was then shown other family graves, where my Great Grandma was brought up, and where my dad first lived.
I was then shown family albums which included family members I'd never heard of. We also saw photos of Robert William Robson who died in WW1. We didn't know who it was until I pointed it out. I then found out that both sides of my family lived across the road from each other. That day was the most tiring emotionally and physically.
Monday.
Quite frankly this was one of the best days of my life. First off I met my cousin in an Ice Cream place on Percy Street. Bear in mind this is the first time I'd ever met anyone from my dads paternal side of the family. He showed loads of pictures of family I'd never heard of, plus pics of my own Great Grandad and my own Grandad. He also proceeded to tell me of our family history of cancer and heart disease. He also told me a story about how a relative wanted to come home from war. He also mentioned a story of how some animal bones are under a statue in Prudhoe because of our family.
I then met Kayleigh (@KayleighK7) who had organised the SJP tour. She still turned up even though she was ill (what a trooper). We had a Nando's where I had quarter of a chicken with some spices (improvement). Then we went on the tour. £10 for 90 minutes of tour. first place we visited was level 2 where we were told about the rooms. We then talked outside for a while when we took this
We then went to levels 3 and 4 We were shown Barry Moat's match box. Apparently it costs £50,000 per season to own one. We then through the remaining levels. Here is level 7
We then went to the entrance where we saw these
A bust of Sir Bobby Robson
A bust of Wor Jackie.
We then went into the changing rooms where I proceeded to kiss Yohan Cabaye's shirt. We were also the only people allowed to do this hahahaha
We then went out onto the pitch and sat in the dugout. I was like a kid in a sweet shop when this photo was taken
After that the tour ended. Quite frankly it was the best 90 mins of my life and a day I will never forget for the rest of my life.
After that there was the small matter of a game. So I decided to go to The Strawberry. Whilst there I met Swin (Swin9). It absolutely was not a slightly awkward introduction by me. We then proceeded to go to Shearers Bar (not at the same time) and we ended up meeting again. I am living proof that Swin is not always pissed. Whilst him and his mates were playing Pool I ended up talking to a girl about why she worked with kids and our mutual dislike of makems and cheesy chips. I then needed 2 sober people and a drunkard to show me the way back as I was knackered. Best day ever!!!!!!
Tuesday.
Tuesday was highly uneventful apart from having to unpack 15 mins before I was supposed to check out. I also had a disgusting Pannini.
Overall.
Overall this was the trip of a lifetime. Newcastle is an amazing place with amazing people (apart from Hippie Green). I will live there one day. I will also own one of those matchday boxes in my lifetime. I will definitely be doing this trip many, many times in my life.
FRIDAY
For some reason I thought I'd tempt fate and travel up on Friday 13th. The train journey up was normal i.e there was no problems (although the journey up made me appreciate the fact I don't live in Yorkshire haha). The journey only took 2 hours which I think is pretty good considering it takes us nearly 3 hours in a car. I arrived in Newcastle about 11:30ish and I did what someone who loves food usually does... I visited 2 cafes (merely to waste time of course).
Before I talk about the Centre For Life I should tell people why I wanted to visit there so much. For those of you who follow me on twitter you will know I suffer from BMD (Beckers Muscular Dystrophy). The Muscle Centre and The Centre For Life in Newcastle upon Tyne are one of three centres in England for the diagnosis and management of inherited muscle diseases which are supported by the British Muscular Dystrophy Campaign. I'm not going to go into much detail about this as I will be doing another article on it in the next few days.
After that I did the normal holiday things i.e find the hotel, get unpacked etc. But then I looked out my window and saw SJP. What an amazing site it was. It was at this point in the blog I was going to put the picture I took of the stadium, but me being me I seem to have deleted it. Anyway, after that I decided to go to the restaurant and get food. £15 for Scampi, Chips, Onion Rings and Coke is far too expensive. I then got quite bored so I watched TV (fun holiday so far). I then went back down to the bar, had a couple of pints and got talking to a ginger mackem. He called me a glory supporter because I started supporting Newcastle when King Kevin was in charge. He then proceeded to tell me that all NUFC fans were obsessed with Sunderland. He then told me he'd been to SJP on numerous occasions (ironic). Not much happened after that as I was completely zonked.
Saturday.
Saturday was far more eventful. I was meant to be visiting my dads cousin for lunch. Everything was going well until I exited the hotel. I went to look for Monument... and got lost. When I found it I headed towards the Quayside... and got lost. I was so lost I had to ask my twitter followers where I was. With the help of @JedAyeGeordie and Gareth (@TheHotspur103) I found my way to Prima Restaurant. I was supposed to be there about 1PM. I got there just in time. I proceeded to wait there 45 mins for my cousin who I thought had never turned up. I decided instead of sitting there like a lonely twat, that I order. I I have never had a nicer pizza in my life. As it turns out, my cousin was sat outside the place while I was sat inside.
Then took a trip to the Quayside to have a look around. I took some photos of the Tyne Bridge and the Millennium Bridge. That is one beautiful place.
After that you'd have thought things would've got better. How wrong I was. I found out Deborah (@LadyEashington) was in John Lewis. So I decided to see her. I tried to find Eldon Square from SJP... and got lost again. When I found it, I got lost in it. I then made the trek right to the top of it, only to find out she wasn't there. At that point I was so tired I sat in there for an hour eating. I made it back to the hotel in one piece. Then as a thank you I decided to go to The Hotspur. Quality pub, quality landlord is all I have to say about that place. As with Friday I was so tired when I got back, so as you do I decided to watch Gladiator.
Sunday.
Sunday was quite frankly, very emotional. First of all I wasn't sure what I was going to do as I had something planned, but that changed at the last minute. So I decided to visit the the Quayside properly this time. I got there fine. I then walked all the way to Ouseburn(?) to take this photo
I then walked up to the railway bridge, thinking I could get to Central Station from there. I couldn't find a way. I ended up walking all the way back along the Quayside and around. And yes, when I went along Collingwood Street I did start singing The Blaydon Races. When there I waited 45 mins for my uncle as apparently he got lost too. He took us to Crawcrook to see my aunty. We then went to Prudhoe to see family graves. We laid flowers at the graves of my Great Grandma, Great Grandad and Uncle Ernie. I was then shown other family graves, where my Great Grandma was brought up, and where my dad first lived.
Monday.
Quite frankly this was one of the best days of my life. First off I met my cousin in an Ice Cream place on Percy Street. Bear in mind this is the first time I'd ever met anyone from my dads paternal side of the family. He showed loads of pictures of family I'd never heard of, plus pics of my own Great Grandad and my own Grandad. He also proceeded to tell me of our family history of cancer and heart disease. He also told me a story about how a relative wanted to come home from war. He also mentioned a story of how some animal bones are under a statue in Prudhoe because of our family.
I then met Kayleigh (@KayleighK7) who had organised the SJP tour. She still turned up even though she was ill (what a trooper). We had a Nando's where I had quarter of a chicken with some spices (improvement). Then we went on the tour. £10 for 90 minutes of tour. first place we visited was level 2 where we were told about the rooms. We then talked outside for a while when we took this
A bust of Wor Jackie.
We then went into the changing rooms where I proceeded to kiss Yohan Cabaye's shirt. We were also the only people allowed to do this hahahaha
After that there was the small matter of a game. So I decided to go to The Strawberry. Whilst there I met Swin (Swin9). It absolutely was not a slightly awkward introduction by me. We then proceeded to go to Shearers Bar (not at the same time) and we ended up meeting again. I am living proof that Swin is not always pissed. Whilst him and his mates were playing Pool I ended up talking to a girl about why she worked with kids and our mutual dislike of makems and cheesy chips. I then needed 2 sober people and a drunkard to show me the way back as I was knackered. Best day ever!!!!!!
Tuesday.
Tuesday was highly uneventful apart from having to unpack 15 mins before I was supposed to check out. I also had a disgusting Pannini.
Overall.
Overall this was the trip of a lifetime. Newcastle is an amazing place with amazing people (apart from Hippie Green). I will live there one day. I will also own one of those matchday boxes in my lifetime. I will definitely be doing this trip many, many times in my life.
Monday 30 April 2012
My Muscular Dystrophy Update
A few months ago I did a blog about my Beckers Muscular Dystrophy. This is just an update as to my condition and how I am coping with it.
First of all I can still walk ok. However I can feel myself getting more fatigued than I can ever remember being. For example, I have recently started a new job for which I sit down a lot. Yet when i get home I feel like i have walked for 5 miles, which is very frustrating.
I still have the contractures with my ankles as my Achilles Tendons are still very tight. However, it has become very noticeable that I am spending more and more time on my tip-toes. I have also noticed that I am doing this more often whilst wearing shoes. This is very frustrating.
My arms still hurt as much as before, although because I have been carrying more stuff they have been hurting more often, However, I have noticed that because I am constantly lifting my arms up/down (because of work) I have had to take breaks just to rest them. Even as I am typing this my arm is hurting a bit. My slouch remains the same, although I have felt the odd bit of back pain every now and again. It is a very obvious slouch to both myself and my family. This is caused by a curvature of the spine known as either Kyphosis or Scoliosis. This is something that may require surgery in the future.
I have to say that I have been dieting for the past 4 months which may have affected my muscles. This is a doubled edged sword though as BMD means a higher risk of cardiomyopathy and other Heart and respiratory problems. So I lose weight, I affect my muscles, I don't then I highten my already high risk of Heart problems. How annoying eh?
I have also been really struggling emotionally with it. If you follow me on twitter then you will know that I haven't been particularly happy recently. 90% of this is because of my MD. I worry about it every day. I think about it everyday. I am reminded of it everyday. I think about it when I'm on my tip-toes, when my legs hurt and when my arms hurt. The things that have really caused me emotional problems though are as such: I worry about the fact I may need spinal surgery in the future. I worry about the fact that I will lead to an early death. I worry about the fact that I will need to rely on others in the future to do simple things such as going to the toilet. The biggest worry I have had though is that I will be in a wheelchair by the time I am 40. I think about these everyday. Its not something I can get away from or something I can just forget about. I try to keep positive about it as best I can. Talking to people online has helped me understand what may/may not happen. But as much as that can help, this is a battle I face by myself.
Recently though I have joined my local MDC group, helping to promote awareness of all forms of MD through fundraisers etc. I have also declared an interest in becoming an MDC Trailblazer. This may help myself and other people with the condition in the long run as I will be helping with investigations and trying to get more understanding about the disease.
Anyway I hope you understand this was quite hard for me to write. Hopefully it will make me feel better though as now people know how I feel. I will do another update in a several months again. I hope you liked this and I have helped understanding of the emotional side of the problem. Feel free to comment and I will answer as best I can.
Thankyou.
First of all I can still walk ok. However I can feel myself getting more fatigued than I can ever remember being. For example, I have recently started a new job for which I sit down a lot. Yet when i get home I feel like i have walked for 5 miles, which is very frustrating.
I still have the contractures with my ankles as my Achilles Tendons are still very tight. However, it has become very noticeable that I am spending more and more time on my tip-toes. I have also noticed that I am doing this more often whilst wearing shoes. This is very frustrating.
My arms still hurt as much as before, although because I have been carrying more stuff they have been hurting more often, However, I have noticed that because I am constantly lifting my arms up/down (because of work) I have had to take breaks just to rest them. Even as I am typing this my arm is hurting a bit. My slouch remains the same, although I have felt the odd bit of back pain every now and again. It is a very obvious slouch to both myself and my family. This is caused by a curvature of the spine known as either Kyphosis or Scoliosis. This is something that may require surgery in the future.
I have to say that I have been dieting for the past 4 months which may have affected my muscles. This is a doubled edged sword though as BMD means a higher risk of cardiomyopathy and other Heart and respiratory problems. So I lose weight, I affect my muscles, I don't then I highten my already high risk of Heart problems. How annoying eh?
I have also been really struggling emotionally with it. If you follow me on twitter then you will know that I haven't been particularly happy recently. 90% of this is because of my MD. I worry about it every day. I think about it everyday. I am reminded of it everyday. I think about it when I'm on my tip-toes, when my legs hurt and when my arms hurt. The things that have really caused me emotional problems though are as such: I worry about the fact I may need spinal surgery in the future. I worry about the fact that I will lead to an early death. I worry about the fact that I will need to rely on others in the future to do simple things such as going to the toilet. The biggest worry I have had though is that I will be in a wheelchair by the time I am 40. I think about these everyday. Its not something I can get away from or something I can just forget about. I try to keep positive about it as best I can. Talking to people online has helped me understand what may/may not happen. But as much as that can help, this is a battle I face by myself.
Recently though I have joined my local MDC group, helping to promote awareness of all forms of MD through fundraisers etc. I have also declared an interest in becoming an MDC Trailblazer. This may help myself and other people with the condition in the long run as I will be helping with investigations and trying to get more understanding about the disease.
Anyway I hope you understand this was quite hard for me to write. Hopefully it will make me feel better though as now people know how I feel. I will do another update in a several months again. I hope you liked this and I have helped understanding of the emotional side of the problem. Feel free to comment and I will answer as best I can.
Thankyou.
Monday 27 February 2012
Buckethead - Electric Sea
In a change from the last 2 weeks I'm actually reviewing an album from an artist who I've actually heard of. Oh Buckethead, Buckethead, Buckethead... what a great album you have made.
1 - Electric Sea.
This song starts out with an acoustic rhythm. Then Buckethead starts to play a smooth, almost soulful tune. It definitely has some sort of classical guitar playing influence on it. To say it is made on an electric guitar the tune is very relaxing. It's a song which could easily send you into your own little world. One of the amazing things about this song is it is a Buckethead song which doesn't feature many effects.
2 - Beyond The Knowing.
This is an acoustic. A sweet melody which obviously has classic guitar picking style. The song is not too long, quite repetitive, but still good.
3 - Swomee Swan.
Another great song. Because of the title it did remind me of relaxing near a river (at least the intro did). Then he decides to go to a proper guitar solo, showing off his amazing guitar skills. This song sounds relatively simple compared to his usual stuff. However don't let that fool you. This song is quite frankly beautiful.
4 - Point of Doom.
This song isn't as downbeat as the title makes it sound. It's another song with an acoustic rhythm. However, the quick, intricate playing of Buckethead is what separates it from the other acoustic sounding tracks. This song is much faster than most of the tracks. It doesn't have the sweet melodies of the other tracks either. For me this is the weakest track on the album. Although I'd still recommend it.
5 - El Indio.
This is probably the most "rock" track on the album as it has a clear riff. It is also another song that has an obviously Spanish influence (as suggested by the title). It's hard for me to say anything about this song that I haven't already said about the previous tracks. It does have a sweet guitar solo on it though.
6 - La Wally.
Quite simply a fantastic track. I cannot say anymore about it.
7 - La Gavotte.
When I first heard this it reminded me of Greensleeves. It sounds quite simple, but that's what makes it excellent. Tbh if you're in a bad mood and need cheering up, this is a song you should listen to. If only we heard more people playing stuff like this.
8 - Bachethead.
This shows how truly amazing Buckethead is. He can take a orchestral tune by Bach and make it sound as if it were meant for a guitar. Just amazing.
9 - Yokohama.
Another nice track. The tone he uses in this song makes it what it is. I sincerely hope he plays this song whilst touring as I feel this could be a standout live track. It's very short though which would be my main criticism of this song (if that is a criticism).
10 - Gateless Gate.
This is another short track. This is probably one of the only filler tracks on the album. Although this filler song is better than most of the music produced by modern artists today.
11 - The Homecoming Beacon.
A fantastic ending to this great album. It's similar to most of the album as the effects are kept to a minimum, allowing the song flow well. This is a song I really could imagine falling asleep to.
It also has a real classic feel to it. His style of picking really lends itself to this song as its a relaxing song with no complicating effects such as wah wah. I'd love to hear him do another album similar to this.
Quite frankly, this is the best album I have heard in ages. It's not like many of the Buckethead tunes I've heard. But then again I'm guessing you cannot really predict what a person who wears a mask and a KFC bucket on his head is going to do next. I feel sorry for the album I'm going to listen to next week as it has a lot to match up to.
Standout Track = Electric Sea 10/10
Album Review = 10/10
1 - Electric Sea.
This song starts out with an acoustic rhythm. Then Buckethead starts to play a smooth, almost soulful tune. It definitely has some sort of classical guitar playing influence on it. To say it is made on an electric guitar the tune is very relaxing. It's a song which could easily send you into your own little world. One of the amazing things about this song is it is a Buckethead song which doesn't feature many effects.
2 - Beyond The Knowing.
This is an acoustic. A sweet melody which obviously has classic guitar picking style. The song is not too long, quite repetitive, but still good.
3 - Swomee Swan.
Another great song. Because of the title it did remind me of relaxing near a river (at least the intro did). Then he decides to go to a proper guitar solo, showing off his amazing guitar skills. This song sounds relatively simple compared to his usual stuff. However don't let that fool you. This song is quite frankly beautiful.
4 - Point of Doom.
This song isn't as downbeat as the title makes it sound. It's another song with an acoustic rhythm. However, the quick, intricate playing of Buckethead is what separates it from the other acoustic sounding tracks. This song is much faster than most of the tracks. It doesn't have the sweet melodies of the other tracks either. For me this is the weakest track on the album. Although I'd still recommend it.
5 - El Indio.
This is probably the most "rock" track on the album as it has a clear riff. It is also another song that has an obviously Spanish influence (as suggested by the title). It's hard for me to say anything about this song that I haven't already said about the previous tracks. It does have a sweet guitar solo on it though.
6 - La Wally.
Quite simply a fantastic track. I cannot say anymore about it.
7 - La Gavotte.
When I first heard this it reminded me of Greensleeves. It sounds quite simple, but that's what makes it excellent. Tbh if you're in a bad mood and need cheering up, this is a song you should listen to. If only we heard more people playing stuff like this.
8 - Bachethead.
This shows how truly amazing Buckethead is. He can take a orchestral tune by Bach and make it sound as if it were meant for a guitar. Just amazing.
9 - Yokohama.
Another nice track. The tone he uses in this song makes it what it is. I sincerely hope he plays this song whilst touring as I feel this could be a standout live track. It's very short though which would be my main criticism of this song (if that is a criticism).
10 - Gateless Gate.
This is another short track. This is probably one of the only filler tracks on the album. Although this filler song is better than most of the music produced by modern artists today.
11 - The Homecoming Beacon.
A fantastic ending to this great album. It's similar to most of the album as the effects are kept to a minimum, allowing the song flow well. This is a song I really could imagine falling asleep to.
It also has a real classic feel to it. His style of picking really lends itself to this song as its a relaxing song with no complicating effects such as wah wah. I'd love to hear him do another album similar to this.
Quite frankly, this is the best album I have heard in ages. It's not like many of the Buckethead tunes I've heard. But then again I'm guessing you cannot really predict what a person who wears a mask and a KFC bucket on his head is going to do next. I feel sorry for the album I'm going to listen to next week as it has a lot to match up to.
Standout Track = Electric Sea 10/10
Album Review = 10/10
Monday 20 February 2012
Sleigh Bells - Reign Of Terror
I decided to review this album because, even though I've never heard of the band, the preview sounded like something I would enjoy. How wrong I was. I was very disappointed with the album.
I find it hard to describe the sound of this album and I cannot really compare it to any acts out there. But here goes...
1 - True Shred Guitar.
This is a live song. It reminded me very much of 80's acts such as Bon Jovi and Europe. It's sounds ok, guitars and vocals are ok. I found myself struggling to understand what was being said some of the time.
2 - Born To Lose.
This is an ok track. It's not great though. As before, vocals and guitars are fine but it really sounds like an album filler.
3 - Crush.
This very much reminded me of Avril Lavigne's "Girlfriend" only it's less catchy. Yet again it's another track which I couldn't hear properly. This song could be a grower though. If the vocals were more powerful or the guitars less prominent then it could be a good track. It's also very short which doesn't really allow the track to develop much. Shame really.
4 - End Of The Line.
It was at this point in the album that I started checking to see how long it had left to run. I'm really not sure what this song was supposed to be. Was it supposed to be a bit of a ballad or a pop song about heartbreak. I have a feeling this song could be very radio friendly. I also feel that a dance remix of this track could work very well. Lyrically it seemed ok (ok meaning I could tell what was being said).
5 - Leader Of The Pack.
I really don't know what to say about this track. It's not particularly brilliant, I couldn't understand the lyrics (again). At least it's short. I feel that as a live track it could be ok.
6 - Comeback Kid.
I actually think song is ok. It's catchy, has a good melody and rhythm. It's probably the most pop song on the album. It's also a song which I could easily find myself singing along too when going for a walk.
7 - Demons.
Probably my favourite track on the album. It's a good rock song. I could easily imagine a band like No Doubt performing this song. The riff is very good. It's quite a headbanger. The repetitive lyrics means its easy to sing along to. I feel if they are to improve as a band, they should use this song as an example of what they can do.
8 - Road To Hell.
Pretty similar to the last song. An ok rock song. Lyrically it's not great as half the song is just a repetition of the title.
9 - You Lost Me.
A good track. Good melody, good rhythm and the vocals actually work quite well with this song. This song sounds like a mixture of Kylie and No Doubt (an odd combination). The guitars are used to good effect in this song as I think the solo towards the end works well with the song and doesn't sound out of place.
10 - Never Say Die.
Yet another song I couldn't understand. The vocals on this song seem very weak. Not that good a track although it will get some people tapping their feet. The guitar saves (and possibly hinders) this track. The guitarist obviously has talent, they just need to home it more.
11 - D.O.A
When I first heard this track I thought it would be like the Foo Fighters song of the same name. I was wrong. It's nothing like it. It's an ok track. It's epitomises the whole album though. It lacks anything that makes it stand out from the crowd and is pretty meagre to be honest. It's a very poor end to the album.
All in all this album is pretty average. If they are going to improve then they need to become a bit more like No Doubt. They need to have more of a rock or pop edge to them. Otherwise they will just become mediocre.
Standout Track = Demons 7/10
Album Review = 6/10.
I find it hard to describe the sound of this album and I cannot really compare it to any acts out there. But here goes...
1 - True Shred Guitar.
This is a live song. It reminded me very much of 80's acts such as Bon Jovi and Europe. It's sounds ok, guitars and vocals are ok. I found myself struggling to understand what was being said some of the time.
2 - Born To Lose.
This is an ok track. It's not great though. As before, vocals and guitars are fine but it really sounds like an album filler.
3 - Crush.
This very much reminded me of Avril Lavigne's "Girlfriend" only it's less catchy. Yet again it's another track which I couldn't hear properly. This song could be a grower though. If the vocals were more powerful or the guitars less prominent then it could be a good track. It's also very short which doesn't really allow the track to develop much. Shame really.
4 - End Of The Line.
It was at this point in the album that I started checking to see how long it had left to run. I'm really not sure what this song was supposed to be. Was it supposed to be a bit of a ballad or a pop song about heartbreak. I have a feeling this song could be very radio friendly. I also feel that a dance remix of this track could work very well. Lyrically it seemed ok (ok meaning I could tell what was being said).
5 - Leader Of The Pack.
I really don't know what to say about this track. It's not particularly brilliant, I couldn't understand the lyrics (again). At least it's short. I feel that as a live track it could be ok.
6 - Comeback Kid.
I actually think song is ok. It's catchy, has a good melody and rhythm. It's probably the most pop song on the album. It's also a song which I could easily find myself singing along too when going for a walk.
7 - Demons.
Probably my favourite track on the album. It's a good rock song. I could easily imagine a band like No Doubt performing this song. The riff is very good. It's quite a headbanger. The repetitive lyrics means its easy to sing along to. I feel if they are to improve as a band, they should use this song as an example of what they can do.
8 - Road To Hell.
Pretty similar to the last song. An ok rock song. Lyrically it's not great as half the song is just a repetition of the title.
9 - You Lost Me.
A good track. Good melody, good rhythm and the vocals actually work quite well with this song. This song sounds like a mixture of Kylie and No Doubt (an odd combination). The guitars are used to good effect in this song as I think the solo towards the end works well with the song and doesn't sound out of place.
10 - Never Say Die.
Yet another song I couldn't understand. The vocals on this song seem very weak. Not that good a track although it will get some people tapping their feet. The guitar saves (and possibly hinders) this track. The guitarist obviously has talent, they just need to home it more.
11 - D.O.A
When I first heard this track I thought it would be like the Foo Fighters song of the same name. I was wrong. It's nothing like it. It's an ok track. It's epitomises the whole album though. It lacks anything that makes it stand out from the crowd and is pretty meagre to be honest. It's a very poor end to the album.
All in all this album is pretty average. If they are going to improve then they need to become a bit more like No Doubt. They need to have more of a rock or pop edge to them. Otherwise they will just become mediocre.
Standout Track = Demons 7/10
Album Review = 6/10.
Monday 13 February 2012
Emeli Sande - Our Version Of Events
I have to admit until very recently I hadn't heard of Emeli Sandè. This was one of the reasons for choosing her as my first musical blog subject. Anyway,here goes.
I found the first 4 songs very hit and miss. It wasn't until I heard the song Clown that I truly appreciated how good this album could be. The song has a great piano melody, allowing miss Sandè to show off her great vocal range. Mountains is also a very solid track too. Not brilliant but a good addition to the album. Maybe is another great track. It's one of the more upbeat tracks. The song is about heartbreak which is very obvious when you listen to the lyrics "We broke up last sunday night
Keep on thinking about the fight
Rest my head against the wall
Your bags are by the door
Then your key turns in the lock
I see you on the stairs and stop
Have you had a change of heart
Can we go back to the start"
Suitcase is another very good track. The acoustic intro immediately hooks you in. However the intro is quite misleading as the song itself isn't an acoustic song.
The next 2 songs are very good, solid solid songs with "Next To Me" being the most Pop song on this album. The song will be very popular with radio stations such as Radio 1. The next 2 songs River and Lifetime are good tracks well worth a listen. The final three tracks (Hope, Read All About It Part III and Tiger) however are outstanding tracks. They have sweet, simple melodies, they're not too long and show off Emeli's great vocal range.
I would hazard a guess and say many people would be comparing this album to Adele's albums. However I never heard any of them. I they are as good as this though I shall be buying them tomorrow. All in all this is a great album which you should buy ASAP.
Standout Track = Clown 9/10
Album Review 8/10.
I found the first 4 songs very hit and miss. It wasn't until I heard the song Clown that I truly appreciated how good this album could be. The song has a great piano melody, allowing miss Sandè to show off her great vocal range. Mountains is also a very solid track too. Not brilliant but a good addition to the album. Maybe is another great track. It's one of the more upbeat tracks. The song is about heartbreak which is very obvious when you listen to the lyrics "We broke up last sunday night
Keep on thinking about the fight
Rest my head against the wall
Your bags are by the door
Then your key turns in the lock
I see you on the stairs and stop
Have you had a change of heart
Can we go back to the start"
Suitcase is another very good track. The acoustic intro immediately hooks you in. However the intro is quite misleading as the song itself isn't an acoustic song.
The next 2 songs are very good, solid solid songs with "Next To Me" being the most Pop song on this album. The song will be very popular with radio stations such as Radio 1. The next 2 songs River and Lifetime are good tracks well worth a listen. The final three tracks (Hope, Read All About It Part III and Tiger) however are outstanding tracks. They have sweet, simple melodies, they're not too long and show off Emeli's great vocal range.
I would hazard a guess and say many people would be comparing this album to Adele's albums. However I never heard any of them. I they are as good as this though I shall be buying them tomorrow. All in all this is a great album which you should buy ASAP.
Standout Track = Clown 9/10
Album Review 8/10.
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