I was diagnosed with Becker muscular dystrophy at age 16. I am now 44, married to Joanna who is also my carer and have a 8-year old son.
Becker muscular dystrophy is a slowly progressive, rare muscle wasting condition that causes weakness of all voluntary muscles and affects only males. There is no cure for this condition and no treatment other than keeping active to maintain mobility as long as possible. It is a genetic condition caused by a mutation in the dystrophin gene. It is either inherited from a mother who is a carrier or starts as a new mutation. Fortunately my 8-year old son can not be affected but any daughters I may have in the future would be a carrier of the condition (most carriers do not experience any symptoms but the condition can then be inherited by their children).
My symptoms began mildly in childhood when cramps on exercise were an issue. I was not very athletic, slow at running and struggled with school sport. As the condition progressed, I increasingly struggled with rapid walking, running and climbing stairs (all no longer possible).
The number of trips and falls I have for no apparent reason increased – these tend to happen more when I am fatigued or not concentrating completely on my movements. Due to a lack of balance, trips often lead to falls. Although I have come close on a number of occasions, so far I have escaped serious injury beyond many sprained ankles, sprained knees and a suspected broken big toe and bruises. The falling gradually eroded my confidence in my walking ability. Before I got a powered wheelchair, it got to the point where I would only leave the house when necessary.
Typically men with Becker muscular dystrophy become unable to walk in their 40s or 50s - although this is very variable and is impossible to predict as it can happen earlier or later. Over a period of many years some muscles become weak and wasted, especially certain muscles of the shoulders, upper arms and thighs, while others that are less weak are often enlarged – which is usually particularly noticeable in the calf muscles. My legs and core muscles (lower spine and pelvic region) are particularly weak. Fatigue is a big issue that I struggle with daily.
Many with Becker muscular dystrophy develop heart issues as we get older. I have mild side of heart failure and a conduction issue where one side of my heart is slightly out of synch with the other. A backward curvature of the spine(lordosis) is also a common problem which I have too.
In the long term breathing muscles may be affected and this is more likely in those who are wheelchair dependent and can lead to a need for assistance with artificial ventilation. I often catch colds or viruses which often lead to chest infections that are hard to shift as my coughing is ineffective and so I often require treatment with antibiotics.
Like many adults with muscular dystrophy, I currently still have some ability to walk even if only an extremely limited distance of a few steps. Maintaining some ability to walk for as long as possible is preferable to me even if just as a therapy. Although impossible to predict when, I am highly likely to completely lose my walking ability at some point and any injury could result in the loss of walking ability sooner. It is better to protect the limited walking ability I do have through the use of appropriate equipment than to lose my walking ability completely.
I currently use a powered wheelchair 100% of the time when I leave the home as it was found that a manual self-propelled wheelchair was not suitable due to my reduced upper body strength and issues in transferring. Whilst I am still able to walk around my bungalow with the help of a stick, furniture and walls for support, I am using the powered wheelchair increasingly within my home (particularly when I am fatigued).
I also find it very difficult to stand from a sitting position and to sit down again in a controlled manner. I have struggled for a number of years with the sit-to-stand process and this has become increasingly difficult and takes up a lot of my energy that may be better conserved for other activities such as spending time with my son.
Well that's my problems summarised and much of it I have had to deal with on my own over the years. I don't think anyone should have to go through the struggles I have had to so far and think things can be improved through the right help and support. Ultimately, I want a cure..not necessarily for me as that may be too late...but to make a difference for future generations.
Muscular Dystrophy UK is the leading UK charity focusing on muscular dystrophy and other related conditions and are dedicated to beating muscular dystrophy and other related conditions by finding treatments and cures and to improving the lives of everyone affected by them.
I ask that you make a donation to Muscular Dystrophy UK to support their valuable work in finding a cure for Becker muscular dystrophy along with every other form of muscular dystrophy.
To find out more about Becker Muscular Dystrophy and where your donation will go please see http://www.musculardystrophyuk.org/about-muscle-wasting-conditions/becker-muscular-dystrophy/
All donations will be much appreciated.