If you have received help from the charity, we would be pleased to hear from you and would like to publish your comments.
I want to express my appreciation for your generosity in support of my oxygen requirements for my recent holiday.
Your assistance means so much to me. Also it allowed my holiday to actually happen. I was not aware of the high cost of oxygen, £175.00 for one week's hire, which was essential for my trip.
Please accept my heartfelt thanks to the UK SPS Charity.
I'd like to give a really big Thanks to the charity for helping me with thier generous contribution towards the cost of my new lightweight wheelchair. I have a small garage in which I can only get a small car, so I needed a wheelchair that would fit my car and be able to get in and out without too much trouble.
With the help from the charity, I've been able to afford a chair that will give me back some independence.
Special thanks to Liz for all the hard work she puts in to the charity.
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.
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.
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.
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!
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.
I want to thank you for the computer software which 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!
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.
I would like to express my gratitude for the help that the charity has provided for my family. We found ourselves with a car with a bad alternator which meant the nursery was out of reach and we had no way of getting to medical appointments or even doing the basics like shopping.
With the charity's help, a second-hand alternator was sourced and fitted which gave back our independence. Once again, many thanks as otherwise we had no way of remedying the situation and would have been up the proverbial creek without a paddle.
Mr 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 ot meet up with her was great.
Than you so much.
Owing to 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, which kindly offered to help me. The charity bought me a fridge-freezer and an oven. Thanks to the charity I can now look forward to a much better 2012. Liz's kindness and support is much appreciated.
Thank you very much.
I would just like to thank Liz and the charity for all the help and support they have given me over the years. Especially a big thank you for helping towards the cost of a new “Rise and recline Arm chair” that has helped me no end with getting in and out of my chair. Without the charity there would have been no way that I could have afforded the chair that I so badly needed, and for that I am very grateful.
I would also like to thank Liz Blows for all the phone calls, for chats that without which I really don’t think I would have been able to cope with everything that has happened over the years. The same for the people I have met through the social network site that the charity is linked to. It's great to be able to chat with people that know what you are going through and that are always there to answer any questions you have or just for a supportive ear.
Thank you all so much!
I would like to thank the charity for help in keeping me movile and independent. Without power, a scooter is just an expensive paper weight. I am now no longer stuck in the house, or worse, stranded with no power half a mile down the road. the "click of death" from a flat scooter is a terrifying sound when you're out. The cost of these batteries was not insubstantial and was way beyound our reach. Once again my heartfelt thanks for the charity's generosity. I can now "run" with my child and have the most valuable of things, independence on which it is impossible to place a value. The batteries will not only enrich my life but that of the whole family.
I would like to thank Liz and the Support group [charity] for helping me to pay for a handrail to be fitted. I have five steps leading down from my front door without anything to hold on to so I could not go out that way. The handrail is brillient, a really great help.
Thank you very much indeed..
I am writing to send yourself and the charity a sincere and heartfelt tank you for the most generous donation of £1,500 you have made toward the cost of a power wheelchair for me.
I cannot emphasise enough how much getting it will enhance my quality of life and regain some of the independence SPS has taken from me as I now don't have to rely solely on others.
A huge thank you yet again.
This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.
We always welome donations, no matter how large or small. You can donate on-line or via a donations form.
To donate by secure credit card transaction, please use the button below. The full value of your donation (less credit card fees) comes to the charity.
The group and charity was set up by Liz Blows with the following aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.
(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.
"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.
SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.