Steve’s Story Part 1 Steve Davies2 Briars Road St Mary’s Bay Romney Marsh Kent TN29 0HQ Email firstname.lastname@example.org June 2007 My story
I was born in 1979 in an area called Romney Marsh in Kent I was born with Achilles tendons that were too short, when I started walking, I walked on my toes. When I was about four I had to have an operation to lengthen both my Achilles tendons which was a success. Until I was fourteen I had no real problems, I wasn’t as strong as my friends, I couldn’t run fast and used to suffer from cramp in my legs nothing much to worry about. However I had noticed uneven muscle growth on my calf’s, one was a lot bigger than the other. We were referred back to the consultant involved in my Achilles operation, he said it was a normal occurrence after such an operation and nothing could be done.
I carried on with life like most boys I played a lot of sport especially football normally every day. I was never good on the pitch people made fun of the way I tried to run. I started playing in goal and found I was ok, I gradually got better and went from being picked last to being picked first because I was good I earning the nickname “Dave the Cat” from my friends. I was never any good at athletics but always tried my hardest. I remember running the 1500 meters all my friends finished way before me and ran (well almost ran) with me until I had finished. Having good friends and being able to laugh at people who picked on me made things easier. It may have been easier if I had known what was wrong with me then, I just felt different.
When I was 17 I left school with good GCSE exam results and an A/s-level in biology. I had been offered a job at a local golf club in Lydd about four miles from my home I was earning £50 a week on a training scheme. My boss thought I was a bit weak because I had just left school and expected me to get stronger, surprisingly I didn’t. He looked after me a lot in the early days.
After about a year and a half of working there I met my future wife she worked in the golf club kitchen I don’t know where I would be now with out her.
i carried on working at the golf club and gained my qualifications and my wage increased which was nice. I did begin to find things were becoming harder at work and at home but just carried on. I hadn’t played football since 17 so I started to play again in goal when I was about 22. I could dive for the ball but found it so hard to get up from the floor. I stopped playing football, I also gave up playing golf because it was a struggle to stand over the ball let alone walk the course. I was never any good at golf but I had met a lot of people through it and did enjoy it. I really miss playing golf, but life goes on.
In the year 2000 I bought a house with my future wife Kerrie (we got married in 2002) we lived in the house for 4 years. Over time I found the stairs get harder and harder. We decided to move house, although not really because of the stairs, we had outgrown the house and wanted a change.
However in October 2003 while we were in the process of moving everything changed. After pressure from both my wife and my parents I visited my GP because my walking had become awkward and uncomfortable and my legs kept giving way. I was a little reluctant to go because of my consultant’s verdict at fourteen. During my consultation we found out that my GP had originally suggested muscular dystrophy to my consultant ten years earlier but he obviously dismissed it or did not considered it, isn’t the national health service amazing !
My GP again suggested MD but thought it was more likely a hip problem. I was referred to a bone specialist who said it was not bones. He said he thought it could be a nerve problem, so off to another hospital and another specialist. He poked me with electrical needles- painful stuff only to say my nerves were fine. The mystery continued as I was referred to a neurologist at King’s college hospital in London called Dr Barnes. He examined me and quickly decided that I was suffering from muscular dystrophy and arranged a muscle biopsy to confirm his diagnosis.
At the end of May 04 we moved house to a bungalow about two miles down the road to a village called St Mary’s Bay. Lots of work needed doing to it, new kitchen, bathroom, central heating etc. I had the biopsy in June 04 Five days after moving house, it was a busy time and a little painful especially when the anaesthetic wore off. I went back to King’s in the October 04 and April 05 for the results but there were none. However Dr Barnes said there was a good chance I had Limb Girdle MD because of the results of blood tests and that I may have an unnamed form. We accepted this as probably the final outcome and made an appointment for April 06.
We returned in April 06 expecting nothing new what a day it turned out to be, I was given a final diagnosis of Becker MD, Dr Barnes discussed what Becker was and all its implications and where to go next it was a big day for all the family a lot to take in. We read about Becker it was like reading my life story all my family have read the fact sheet and say the same.
Since April a lot has happened I have been to Guys for genetics counselling the good news from that was my mum was found not to be a carrier and my sister was also the same. I was officially a mutant I have since added it to my CV. I also went to a heart specialist had my heart recorded and an echocardiogram ,the results from this came back and showed no problems with my heart.
At present things are going well, In August we will be celebrating our 5th wedding anniversary we have no plans for children at present. However we do have a Jack Russell called Oscar (pictured below with myself), a rabbit and 10 gerbils which keeps us busy. We recently came back from a holiday to Canada we had an excellent time but that’s another story. The house is coming on well with a lot of help from my dad always something to do. I enjoy my gardening very much and have just started fishing again after a break of about a year. I enjoy watching sport I’m a spurs fan and listen to a lot of music especially a band called Ocean Colour Scene. I find it helps keep my mind off other things such as the problem of finding a new career as inevitably I won’t be able to carry on at the golf club forever. I have a new boss at the golf club he’s ok now but I went through a bit of a rough time with him at first. He understands the jobs I can’t do, most of my work involves using ride on equipment. All the time I can get on it I should be alright. I have been attending a computer course at a local centre as the first step to a new job and have enrolled on the next course. During the course I have been designing a poster to promote Becker United to be available to download from the web site and spread the word.
I always try to stay positive, I do get depressed but joining Becker United has helped me knowing I’m not alone.
I would love to be contacted by other members, especially if they have had to make a career change because of Becker md. I really only know Tim so having more people to email would be great.
Hopefully my story has been interesting and not put you to sleep, that’s all for now I will update in the future.
Steve’s Story Part 2 -2008-April 2012
A lot has happened since I wrote part 1 which must have been up to around early 2008. At that time I was still struggling on, working on the golf course and was finding things a lot tougher, especially the winter and the jobs it could do became less and less. My boss was making it difficult too; I’d learnt he was not a nice guy he was a bully. There was not a lot I could do at that point as I needed the job and did not want to make things worse but it really got me down. I felt so bad that at work I didn’t eat properly at breaks or lunches which went on for about 6 months.
I had been continuing with my computer qualifications and knew I had to find another job but with little experience and only some basic qualification what chance did I stand. In April 2008 I took the plunge with persuasion from my wife and applied for an admin position with the Police and actually got an interview. I had never had a proper interview in my life but attended and it all went well. I hoped this would be my chance but it was not to be. I did get some good feedback and it was a positive step.
I just carried on at the golf club to somewhere around February 2009 when I applied for another admin position with the National Health Service and got another interview. Two applications and two interviews which isn’t a bad return. I went to the interview not knowing a lot about the job and what would be expected. When I arrived at the health centre I sat and waited to be called, a lady came to take all my documentation and I managed to drop all the paper work across the floor, a good start I thought. The interview started and all went really well, I was relaxed and maybe my lack of knowledge was outweighed by my enthusiasm and sense of humor. I gave my thanks and said goodbye and drove home. By the time I had driven the 40 minutes home a message was waiting on my answer phone asking if I could call one of the ladies on the interview panel. I called back and was offered the job which I took with no hesitation. I could not wait to tell people especially my wife and parents but mostly to tell my boss at the golf club. My thunder was slightly stolen as he had already been asked for a reference. I had finally done it, it would be tough to leave the place I had worked for 12 and a half years. I had a lot of friends, both colleagues and golfers and it would be sad to leave.
The NHS is not known for its speed concerning recruitment and it took me nearly 2 months to get a start date and had to visit occupational health to see if I was fit to work. My last day at the golf club came which was a good day in the sunshine, got some good pictures to remember the day and then had a week off before starting my new job.
The 30th of March was judgment day; off I set in my shirt and tie. I almost didn’t recognize myself in the mirror. I was a little nervous and a 25 mile journey gives you a while to think. I thought I was due to be working in this particular office for a few days to get trained up. I got on really well and everyone was so friendly. At the end of the day I was told that tomorrow I was off to my permanent office which was a bit of a shock. This turned out to be closer to my house and was the start of something special.
I was told I was going to be working with two people called Paul and Sarah, who have ended up being two of my closest friends. We hit it off straight away but we could not have been more different, Paul, a Jamaican complete with dreadlocks and about a year younger than me, Sarah was a petit 19 year old and me with Becker’s and about 6 weeks and 1 days worth of experience in admin between us. Work was good and we made a great team having a lot of fun.
All was sorted with my job but at home I was getting frustrated with the Becker’s and how it was slowing me down. I got really depressed and Kerrie and I were not getting on. I was giving up and did not want to do anything in the house or go out which caused a lot of upset. I openly told Kerrie that I wished I was dead which isn’t a great thing to think or say. It came to ahead around October 2010 when we decided something had to be done. We ended up visiting the doctor who tested me for depression and I scored pretty high. He put me on a course of tablets which lifted my mood. We also arranged to have some counseling through the NHS and went to see the councilor at her home. It was difficult to begin with and very emotional for both of us. I could finally admit I was having problems and could not cope with it all. We were both able to open up to each other and sorted a lot out we had several sessions over a few months. The confidence I had lost was coming back and I was feeling better. It had taken several months but had made so much difference. We were back on track at last. We both knew things would not be easy but we wanted to make things work. We are due to celebrate our 10th wedding anniversary in August 2012 and hope for many more. I’m still taking the anti depressants and think I could be on them long term to help my mood but one tablet isn’t much.
Over this period I had been receiving physiotherapy and hydrotherapy which was helping me physically as well, getting regular heart checks and seeing my consultants and all appeared fine. This was until the recent tests on my heart in December 2011. I went for the results and was told my heart was not functioning as it should and I needed medication. It was a shock and it got me upset and depressed again after all the progress. It took a while to process in my head but thankfully a long chat with my doctor eased my worries and the medication started. I have a review in July to see how things are progressing.
Work over the past 3 years has been very good and I get well looked after with my own raised desk, chair and my own disabled parking space outside the office, working with some really great people. I actually look forward to going to work, it keeps me positive with lots of banter and laughs. I feel really valued as I am one of the longer serving members of staff now and have picked up a lot. At present I have been on a temporary promotion for the past 6 months with in my office and have got an interview for the permanent position in that role on Friday 13th April an apt date if ever there was one. I am also just starting an NVQ in business admin which sounds like fun.
Physically I feel things getting worse, getting up and down from chairs or from the floor is difficult and very frustrating. My balance isn’t all that great and I have fallen a few times but not really done anything serious, I think I am well practiced at falling safely now. In the last few months I have started using my walking stick a lot more when going out shopping and to pubs and restaurants just in case.
At present I’m still able to get about reasonably well. I seem to have less energy and try to pace myself and accept what I can do. I enjoy gardening and grow my own vegetables and I like to fish as well. I am still a long suffering Spurs fan but this season has been good so far. I love listening to music especially Ocean Colour Scene and am determined that I will master the guitar finally this year. I also have a very good friend called Talit from Manchester who has Becker’s. We’ve been in contact for nearly 4 years now and have a regular chat on facebook every week. He has taught me a lot about being positive and he is now one of my closest friends.
I was also recently contacted by a guy called Brad who had read part 1 of my story and got in touch inspiring me to write part 2. I have also joined a facebook group called Becker Muscular Dystrophy which has had a positive influence on me and through this I was contacted by Andrew who has Becker’s. Andrew only lives about an hour from me so we hope to meet up. I also feel I can interact with other people in the group and share my opinions, experiences and wisdom and learn a lot from others.
I just try not to look too far ahead wondering what I will be like in 6 months or a year or two. I look at it like this, what has been taken away from me physically has been replaced with other things that have enhanced my life. Like the people I have met and places I have been. I have great friends, a wonderful wife and family who are always there for me and also my dog Oscar who is as mad as a box of frogs and always makes me smile. Maybe I have a greater appreciation for what I have and it has made me the person I am today.
As I write this I feel a sense of achievement and had forgotten how far I had come in the past 4 years. As my dad always says “things always work out in the end” and this is the philosophy I try to live by.
I hope who ever reads this especially individuals and families of newly diagnosed can take something positive from my experiences and understand that things will be a little tougher but life is what you make of it. You only get one crack at it so make the most of your opportunities and do what you can while you can and don’t dwell on the past as it will eat you up.
If you read this and wish to get in touch please do, it would be great to hear from you.