If you have received help from the charity, we would be pleased to hear from you and would like to publish your comments.
Nikki, East Yorkshire:
I would like to thank Liz (Blows) and the charity for all the support you have given me over the 'phone as well as financial aid which enabled me to afford a private consultation with a neurology consultant following my GP's diagnosis of Stiff Man Syndrome.
After carrying out a whole host of tests the consultant confirmed I was, in fact, suffering from on-going complications from encephalitis (swelling on the brain) with which I had been hospitalised in 2007 (post-viral encephalitis syndrome). I was very anxious after my GP's diagnosis, which made my symptoms even worse. The financial support greatly reduced the time I had to wait to get a true diagnosis.
Tim, Ipswich:
I'd like to send my heartfelt thanks to Liz Blows and her charity for helping me out and making my life safer and easier. A month back, Liz and I were talking about my new bungalow that Ipswich council found for me as stairs and getting about were sometimes nearly impossible for me to deal with. The bungalow I moved into only had laminate flooring which in itself I found difficult getting around on, especially when I'd come in from the rain as my crutches used to slide everywhere (like walking on ice). I asked Ipswich social services for a grant but was refused but, bless her, Liz and her charity put up the money for the purchase of a very, very big rug (the rug was my choice as I did not want wall-to-wall carpeting).
Liz has been very supportive and helpful while understanding my needs. Yet again I would like to say thank you very much to Liz and her charity.
Anonymous, Tamworth:
I want to thank you for the charity's help in providing funding for a mobility scooter without which I would be basically house bound due to my not being able to walk any distance and the busy outside world "triggering" my symptoms. As my condition deteriorates, I find myself increasingly looking around for solutions. I hoped that a scooter would allow me to reclaim a level of independence that I thought had long gone - the ability to get out and about with my young family, go shopping or just walk the dogs, but the cost of these scooters placed them well outside of my financial capability. With the charity's help I had the joy of obtaining a mobility scooter and it has realised all my hopes and more. This piece of equipment has made an impact greater than I thought possible. Here is a picture of the scooter:
Once again, many thanks not only for your financial aid in obtaining the scooter but for always being at the end of the 'phone for when I need someone to talk to about this insidious condition. It's a sad fact but you really need firsthand experience of it to be able to understand the swathe of destruction, confusion and frustration living with this condition can cause.
Louise, Birmingham:
I just want to say a big “thank you” for my new laptop. I have managed to do so many things on it that I couldn’t have before. For example, emailing my hospital for appointment dates for my IVIG treatments; sending messages to my friends and sending photos; finding out places without picking up the telephone; even sending out letters. I don’t know what I would do without it because I can take it anywhere around the house. And it’s all thanks to the charity!
Pete, Norfolk:
I want to thank the charity for its very generous help towards a special bed I needed because I find it extremely hard to get out of bed. It's so much easier now.
Liz and her charity also paid to repair my PC, which is an absolute lifeline because I have great difficulty getting out and about. Now I can use email again to stay in touch and organise my life, which was very hard to do without my PC, especially as I live alone.
Jacqui, Newcastle-upon-Tyne:
I want to thank you for the computer software the group provided me with. It is speech activated to enable me to use my computer.
This has been great, allowing me to write letters to my friends and keep up to date via the internet.
A very big THANK YOU!
Janice, Bristol:
I would like to thank the charity for paying for some of us from the Bristol area to get together for a meal and a chat, with the idea of us keeping in touch and meeting up sometime. Many thanks to Liz for all the time and effort she put in arranging everything and travelling down to join us.
Mr D:
I would like to express my graduate for the help that the charity has provided for my family. We found ourselves with a car with a bad alternator. This meant that the nursery was out of reach and I had no way of getting to medical appointments or even the basics like shopping.
With the charities help a second hand alternator was sourced and fitted giving us back our independence. Once again many thanks as we had no way of remedying the situation and would have been up the proverbial creek without a paddle.
Many thanks.
Brenda, Bristol:
Liz made it possible this year (2011) to meet up and have a lunch-time meeting with other sufferers of SMS. It was a lovely day. I felt at ease with the other ladies. Liz has always been supportive, but to meet up with her was great.
Thank you so much.
Sue, Hull:
Owing to my unforeseen circumstances I found myself on hard times. Then, out of the blue, I received a phone call that changed everything. It was from the Stiff Man Syndrome Support Group and Charity, who kindly offered to help me. They bought me a fridge-freezer and an oven. Through the Charity I can now look forward to a better 2012. Your kindness was so much appreciated.
Thank you very much.