Robyn shares her experiences of moving house

Today we have a truly inspiring guest Blog from Robyn Gunner who shares with us her emotional journey after being diagnosed with muscular dystrophy eight years ago.

“I am 25yrs old and have Limb Girdle 2b muscular dystrophy. I began experiencing the early symptoms of LGMD in 2003 when I was 17. After numerous visits to the doctors and being told I had ‘anterior knee pain’ and go to the gym, my physiotherapist sent me in the direction of private care as she was concerned that, at 17, being unable to stand on tip toes was not normal!! After a long wait and countless tests I was diagnosed with Limb Girdle muscular dystrophy just before my 18th birthday. At the time this came as a huge shock and for a while I hit an emotional brick wall thinking “Why me?” and “What happens now?”. I spent a lot of time on the Muscular Dystrophy Campaign website, researching my type of MD and speaking to people in the same boat as me and in my hour of despair I did start to see some light.

In 2009, my daughter Chloe was born after an extremely tiring and difficult pregnancy.  Since then, my condition has got progressively worse. Stairs were a complete no go now, I couldn’t get into a bath, I didn’t go out in the winter and I used a wheelchair a lot more. Living in a two-bed bungalow in a ruralNorfolkvillage became increasingly isolating and, with Chloe’s future in mind, I contacted the housing association to see what help I could get with adaptations and re-housing.

After going through a long battle with social services to get support for me and Chloe, I now faced similar problems with the housing association. In a nutshell my bungalow isn’t wheelchair adaptable, as it would need major structural work, and I wanted to be in the local town where my parents live rather than in an isolated village, as they help me a lot.

The housing association told me to look for an already adapted bungalow in a surrounding village, as one in a town might not become available for a long time.  They also told me that someone who has no transport will be a higher priority. It was around this time I felt something in my head snap and I was ready to fight!!!

A couple of properties within a couple of years had come up, one was so small that the Borrowers would have struggled to live happily in it and the other was less adaptable than my current property, and was totally unsuitable for my needs. This experience made it clear that many people really don’t understand the nature of my disability.

My occupational therapist advised me that one way to speed up the re-housing process would be to look for a house that could be adapted to my needs, for example with a wheelchair lift and other aids. The housing association, however, were less then thrilled with this idea and said that I would have to wait for a house that was already adapted. As anyone with a disability knows, properties which are suitable for wheelchairs are few and far between.

Not taking ‘no’ for an answer, I asked for the relevant medical people to write supporting letters to the housing association for me and about my condition and I contacted the Muscular Dystrophy Campaign, who wrote to the housing association stating why I needed help with re-housing.  Also, my friend, who was frustrated with the problems I was having, wrote to my local MP Elizabeth Truss who was only too happy to help and wrote several letter to them. As a result I got a very different response saying I could look for a house which could be adapted.

A few weeks ago, a house became available opposite my parents and another 5 minutes away in the space of a week. This two bedroom property was advertised as being ‘disabled adapted’ so I was told I wouldn’t be shown around the other house opposite my parents, but I explained I would not be making a decision until my occupational therapist had seen them both.  As it turned out, whilst the first property had a stair lift and wet room it was not wheelchair adaptable for structural and size reasons!

So, my occupational therapist saw the property opposite my parent’s house and confirmed that it was suitable for my needs. The housing association therefore had no choice but to offer me the property. Over the last few weeks my new house has been measured to make it wheelchair friendly, have ramps installed and doors widened. This whole process has taken a long time and I’ve had a lot of tears due to people’s ignorance, but with my family, friends and the help of others I got there and now I am going to have a home in which I can live independently, which is close to my parents in a town with all the amenities that I need.

Being disabled doesn’t mean your life stops: I still carried on to be a mother, a housewife who makes my partner dinner when he returns from work. Yes, it’s tiring and it’s hard, but you have the right to fight and live the life you and your family deserve. Ask for help and don’t be afraid to ask for it, the TalkMD chat room helped a lot, allowing me to speak to people who know how I feel.

Remember, if you’re not happy with a decision that is made for you, get another one and if you still don’t think that one’s fair, get another one!!!! If someone doesn’t understand your condition, make them understand. Do what I did, get on to the Muscular Dystrophy Campaign website, print out some information about your condition and give it the person who needs it. Get your medical team behind you: GPs, OTs and neurologists, and don’t let people beat you down because they are ignorant of your needs, or too busy worrying about the budget for next April.

I suppose what I have learnt over the last few years is that there are many disabled people out there who are more than likely to be struggling with financial problems, disability rights, housing problems and actually getting a correct diagnosis or the help they need. I have dealt with my MD rather well and being a strong minded loudmouth anyway, I was able to fight, but even I gave up for a little while thinking no one cares, no one understands and maybe I should give up…All I can say is: DON’T!”

Robyn’s brilliant story highlights what you can achieve with strength and determination and as a thank you, Robyn has bravely arranged to do a sky dive for the Muscular Dystrophy Campaign which we are all extremely excited about.

If you, like Robyn, are struggling to get the help you require please do not hesitate to contact our Advocacy Service at campaigns@muscular-dystrophy.org or by calling 020 7803 4800.

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