Becker's Muscular Dystrophy - My life so far...

Welcome To My Blog!

Introduction


I am 27 years old and live in London, England. At age 5, I was diagnosed with Beckers Muscular Dystrophy, a condition I inherited from my Grandfather. The reason for doing this blog is to raise awareness of my condition and give advice and share my experiences for people with the condition or parents with young children diagnosed with it.

This link contains information on Becker's Muscular Dystrophy from a Medical Encyclopedia. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001725/

The thing is it does not really describe how I am. For example it says that sufferers are in a wheel chair by the time they are 25-30 years old. Well I'm almost 28, and (touch wood) nowhere near using a wheelchair. I look like a regular guy, I walk everywhere, I use trains and buses with ease and I am fairly outgoing (pubs, nightclubs, concerts and I play the drums at home and in bands). I tire easier than most people my age, but I think the reason that I have been able to live a normal life is due to the amount of observation that I have had.
The rest of this post explains my various experiences with BMD and is to show what I think helped me and also to give you an idea that I have lived pretty much a normal life.

After finishing writing this I found I had written much more than expected so I have given everything a chapter so that you can always come back to it. Please read this if Becker's Muscular Dystrophy is something that effects you or someone in your life and please feel free to comment.



Chapters:
1: My Diagnosis and My Grandfather's Life With Becker's Muscular Dystrophy
2. My Childhood with Muscular Dystrophy
3. My life Age 18-21
4. Graduation, Unemployment, a Weakened Heart and Eventually...A Job.
5. Present Day -December 2015

1: My Diagnosis and My Grandfather's Life With Becker's Muscular Dystrophy

When diagnosed with the condition back in 1992, I was a large, lethargic and weak child and it was obvious that something wasn't quite right. I also had terrible posture and walked almost on tip-toes. My Grandfather (Mother's father) was in a wheelchair by the time he was in his forties and he put off using the wheelchair for a long time, and instead used a cane but often fell and hurt himself during this stage. My mother was devastated that me and my younger brother were diagnosed with this condition, but it was worse for my Grandfather because he did not know he had it until it was too late. He had gone his whole life tiring easily and being in a lot of pain with walking, using stairs and enjoying an unhealthy diet (He was mediterranean and they love their food!) Most of his pain and real signs of the disease had started showing when he was in his early twenties, when he had trouble walking up the stairs or on uneven surfaces.

A possible catalyst for his condition becoming worse, was his time in the Maltese Airforce, he was a member of the marching band, but he was still required to do drill training. He tired very easily, even though being in good shape but his drill Sergeants saw this tiredness as laziness and worked him even harder. This could have made things worse for my Grandfather, but with Becker's one cannot be entirely sure. The fact he did not know he had Becker's may have meant that his muscles and strength were under developed.

By the time I was born, my Grandfather was in a wheelchair and was heavily over weight and needed my Grandmother to  get him out of bed, dress him and wash him. He had a stair-lift put into his house as he could not stand up at all. My Grandfather also had Diabetes (due to being overweight) and ended up dying of a heart attack at age 60.

Despite all of his problems though, my Grandfather was a very thoughtful, loving and kind man with a great sense of humour, and as well as doing this blog for myself and other people with this condition I dedicate this blog to the memory of my Granddad Tony (1938 - 1998) and also to my Nan - Mary (who thankfully is still with us!) who did everything she could to care for my Granddad round the clock.

My Grandparents on their Wedding Day. Granddad was about 20-21 Years old in this photo.

Me with my Grandparents, Age 3. Despite being in a wheelchair Granddad still made all the family events.

2. My Childhood with Muscular Dystrophy

So it's been over 20 years since I was diagnosed with the condition, as a child I had a check up at the physiotherapist every 6 months, which included me doing stretches and practicing getting up off the floor and other basic physical skills. I was terrible at sports and running around, and if I did either for too long I would tire very quickly and ache mainly in my legs. My calf muscles were incredibly tight, and this was mostly due to the fact that I did not walk properly, but this problem was sorted out when my Dad would walk behind me and shout "WALK PROPERLY!!!" Say what you want about fear in parenting, it works! Eventually even when I was on my own I would think "oh no I need to walk properly".

Me age 5

My other problem as a child was my weight, it went up and down throughout my early childhood, but by the time I was 11 years old I was huge, I was about 5ft 2" and at least 36-38 inches round my waist. So being hefty with this condition made things even more difficult, I liked eating and when I got picked on at school for my size I would eat more at home. Crisps, biscuits, chocolates, Pop Tarts, chips, burgers, sausages, e.t.c. I also knew about my condition and used it as an excuse to not do P.E, although I was often forced to do rugby etc because the teachers said the only reason I wasn't very good at sport was because I was fat. I would do the bare minimum of participation, but I would normally walk home with a bit of a limp and aching legs. My posture was terrible too, I remember walking around school with a huge backpack and pretty much looking at the floor all the time and the physiotherapist would always point out that this would cause me a lot of problems as I got older.

Me age 11

So am I still a big fatty? thankfully no! Age 15 I was more outgoing, I started going to rock/metal concerts (admittedly I would do my best to avoid the mosh pit! But somehow it would always find me), I started going out during the weekends and school holidays and walking to friends houses instead of relying on my mum to drive me around all the time, and I would occasionally go to the park after school with the youngest of my two brothers (who thankfully did not inherit BMD and has no health issues at all.) and various kids on my road. I was terrible at football, but playing with kids much younger and smaller than me gave me a bit of an edge, and eventually I built up my stamina and by 16 I was 5ft 7 with a 32" waist.

The other thing that really helped me was playing drums. Drumming with the sticks improved my upper body strength and using the hi hat and bass drum pedals helped loosen up my tendons and calf muscles. The physiotherapist couldn't believe how much I had improved and my appointments were made once every year instead of twice. My late teens continued to see me becoming more and more outgoing - going to parties, practicing and performing with my band, eventually going to pubs and clubs and by the time I was 18 years old I had got a job as a part time Litter Picker and started going to the gym.

I was unstoppable, you wouldn't think anything was wrong with me, although admittedly I do remember a cold would last for a while, probably because I was overdoing it. Being a litter picker was very demanding on me as I was walking the streets and filling up a bin bag which would get incredibly heavy. It was 3 hours of every Saturday and Sunday, which meant some nights I would go out and not get much sleep before my shift (which paid pretty well by the way.) I did a lot of walking too.


3. My life Age 18-21

I did hit another roadblock with my weight though. At 18 I started Art college to do a one year foundation course in Graphic Design. I had plenty of free time, and I was earning money too, so as well as going out at the weekends, I would go out in the week and probably ended up drinking alcohol at least 3-4 nights a week. After finishing the course, I didn't go straight onto University and spent the year working boring office jobs. I would end up going pub with my work mates most Fridays and sometimes on Thursdays too. I stopped going to the gym due to not having enough time and I did not watch what I was eating. So by the time I was 19 I was 5ft7 (I stopped growing at 16 lol) and 36" Waist and weighed 13 and a half stone. I didn't look too bad, but I was much bigger and sweat much easier than I do now. I was still exercising but because of my alcohol and food consumption it wasn't really doing anything for me.

So age 20 in my second job which was on and off temping February - August 2008  I decided it was time to lose weight and start watching what I eat. I cut down on alcohol for a month and I stopped eating in between meals. After a few months I had gone down to 34" waist. And in October I started University and by this point I had gone back down to 32" waist, which I still am now, thanks to my careful diet, and I do occasionally treat myself and normally have 3-4 beers on a Friday and or Saturday night.

During my first year of university I was in a band that practiced every week and eventually played a gig a month for about 4-5 months. I worked part time, I saw my Girlfriend at least one evening during the week and did typical weekend stuff too, which was often juggled around working or doing University Work. I lived at home for University and had to commute into London to attend my lectures. Occasionally I would over do it and ache a little bit (especially after gigs) but a hot bath and doing my daily stretches would normally put me back to normal unless I had seriously over done it. Many a time I would run for my train and this would tire me out too.

During my first week of University I had heart palpitations for a week and reasoned that I had probably drank too much tea and was a bit anxious about starting Uni. So I stopped drinking tea for a week and the palpitations stopped. In the final term I was very stressed about producing the perfect piece of work by the deadline and again was suffering heart palpitations. I had my physio check up and also my Cardiac clinic check up (forgot to mention as a teenager they added this to my visits as the heart is a muscle too.) I was always told that my heart is fine and it's probably just a bit of anxiety (this was even after having my ECG and full heart scan.) And in time the palpitations stopped and I don't think I had them again during the rest of my time at University.

 Reasons why people are shocked that I have a muscle condition!

4. Graduation, Unemployment, a Weakened Heart and Eventually...A Job.


I graduated University in July 2011 and then joined the unemployment line and spent a lot of time searching job websites and applying for jobs. I also spent a lot of time sitting in my room and watching tv, playing computer games and surfing the net. I still kept my diet under control and went out for walks and went out at the weekends. I had my scheduled Heart scan in October (still didn't have a job!) and suddenly what I had been told was fine was not so good. It was explained that before - my heart was on the weaker end of normal but had now weakened and required me to take heart medication called Rampiril which thins the blood, lowers the blood pressure but apparently shows proof of re-structuring the heart. I was upset at first, but I can still drink alcohol and caffeine and no major changes were made to my lifestyle. By November I landed an unpaid job as a Graphic Designer for a start up, which was in Central London and required me getting the train and the tube and walking up and down escalators etc. I would often foolishly run for my train which would wear me out and mean my legs would be aching.

I stuck with this job until February 2012, when I got an internship that actually paid me enough to cover travel expenses and have a bit left over. (The other one paid £5 a day! Which covered half my fares!) this one was slightly further out and again required a train and a tube, and again there were times where I would run for the train and be incredibly tired. The internship lasted three weeks and then I was back to sitting around the house, but also going for walks and playing drums and going out.

April 2012 I had managed to get a couple of job interviews, but no success, despite having a second interview with one place. I then had a visit to the hospital for my heart check up, the Rampiril was definitely helping but I was again suffering heart palpitations and my heart beat was irregular. This would all do damage eventually so I was told I will now be put on another set of heart medication called Bisroprolol. This will fix my irregular heartbeat and stop my palpitations, but like the Rampiril will be needed to be taken every day...for the rest of my life. Again I was upset, especially when warned of side effects, but I had no side effects with Rampiril and really they have to warn you in case anything happens and you sue because you weren't warned. I have started the medication now and everything seems ok, I'm feeling better too. Funnily enough the same day that I came home feeling low about having to take MORE medication, the person who got the job had quit half way through their first day and I was asked if I was still interested. RESULT.

5. Present Day - December 2015

It's been about three and a half years since I wrote this blog. I was dealing with a lot of other issues in my life and I felt sharing my experiences might be helpful, especially as there doesn't seem to be a lot of information on Becker's muscular dystrophy.

Now and again it does hit me that I have a long term health condition. Sometimes I do forget, especially when I go a few days feeling fine and healthy. But it can be daunting, especially when you have no idea what is going to happen, but the same could be said of every day life, whether you have a health condition or not.

I am fit and healthy, I exercise, I eat a balanced diet and occasionally treat myself. I have a wonderful Girlfriend, a wonderful family, and loads of friends.
I have a job, I commute and I have moved out of home and live in a flat and manage with no problems.

At times people forget that I have a condition, many people find it confusing and don't understand, so with a lot of people I tend not to talk about it with them. It's not because I am ashamed of my condition but I don't feel really damaged by it and I find it better to just pace myself and live my life.

My main advice to parents who find out that their child has Becker's Muscular Dystrophy, is make sure they stretch, exercise, eat healthy, walk properly, stand up straight and see a Physiotherapist once or twice a year. A positive attitude towards the condition and working with it is what I believed has helped me for the past 20 odd years.

My advice to people with the condition, whether you are similar to me, worse off, or much better, is be yourself and enjoy your life, it can be difficult at times but don't lock yourself away from the world. Talk to a therapist if you feel you struggle talking to friends and family about it and even write a blog or just keep a personal journal.

I admit there are times when I feel down, but I have a great life, my heart has improved and stronger than ever thanks to my medication. My muscle strength is fine, I manage everyday tasks with no problems, and I have no trouble getting to work or going out and having a good time, I just watch my energy levels and make sure I get the right amount of sleep and rest, which is hard when you're working trust me!

 Me and some mates enjoying a curry

 Me, my two bros and my cousin

 Me and some mates enjoying the arcade

Me and my mum at my graduation

Thanks for reading!