PwMS help the MS Research Unit:
This page will explain why Persons with Multiple Sclerosis (PwMS or MSers) are involved with helping:
My Story:
Here is the story of the webmaster. It is hoped that more people will understand that we would welcome some more volunteers to help raise funds for the research or to give some time to help the MS Research Unit.
I became involved with the work of the Bristol MS Research Unit in 1991. There was an opportunity to help with an experiment on muscle stimulation. I liked walking up from the bus station. It had become a pleasant routine. It convinced me that physiotherapy (physical therapy) exercises done regularly could improve your walking or maintain it. The experiment went towards the FES project. That is Functional Electrical Stimulation. It is to help with lifting the foot when walking. It is now a small box placed at the waist much better than the big computer and the wires of the beginning. I am very pleased to see science progress. However, in 1992, I had to abandon some work that I was helping with doing from home. The MS Research Unit was threatened with closure. It was as if someone was ripping away a good book from my hands!
So, I helped with some writing of letters. It was one of my first campaigns. I cannot have been the only one doing this. It worked for a year. I wish there was more help locally or nationally. It is very depressing. Sometimes, I think that it is dog eat dog in the MS community. I refuse to lose hope. I think that what PwMS (MSers) and professionals need is good information as it is now provided at the MS Unit and has been for the last ten years. Common sense will prevail!
In 1993, what I had done was already running out of effect. I was crying in a collapsing meeting. No one present wanted to stay and they all had very different agenda! And from then, not many people have been able to help the MS Research Unit!
In 1995, I retired and worked more for the MS Unit as one cannot fully retire from MS! I helped with a whole range of experiments, raised some funds. I started surfing the Internet at the hospital to help the research team find the latest information on MS.
In 1999, I started a new MS website. I administered an MS email list until 2002. It is being discontinued and I have decided that the website of the list was redundant!
In 2000, I found a way of writing a website for the MS Research Unit. It is a local site that can reach the people of the Bristol region in more than 85 libraries and Net cafés. It Is easy to do a search on Multiple Sclerosis on Digitalbristol. It can also be opened by simply typing: http://www.digitalbristol.org/members/msfirst .
Suddenly, the funding for the research of the MS Unit coming from a local group stopped.
At the start of 2001, with the help of the University Hospitals Bristol NHS Foundation Trust (UHBristol NHSFT), the Unit started to appear as MS First. First stands for: furthering information, research, support and training.
When I found out what it meant, I became very creative. I liked MS First instantly. MS First is furthering information, research, support and training by putting MS First! It was finally published at the end of July 2001.
Here are the thoughts that made me write it: I aim to give reliable information for professionals and PwMS (MSers). When I found out about the MS Research Unit site at Bristol University, I thought it had useful information that not many PwMS (MSers), including local ones or professionals would find easily. So, my first idea was to use Digitalbristol for enhancing the existing site.
Now, all the work I have done has been very much worthwhile a charity has come forward to help the work carried on at Bristol. I have built up their first site...They are MS Research Training and Education. I am pleased that I am not on my own.
My neurologist prescribed me with
campaigning, physiotherapy (physical therapy) and websites. He does not feel
there is better than that in my case. A boost to my treatment came with these very good news for the research on MS in Bristol. A new clinical centre to treat people with Multiple Sclerosis is opening at Frenchay Hospital in the New Year. The Burden Neurological Institute where Professor Neil Scolding (right) plans to focus on research into stem cell therapy aimed at treating and even repairing the damage done by MS... New!
Laurence Robb, Webmaster.
PS: This website was not updated much last year; webmasters do get ill. I am better. Here is an article published in the magazine Full House on 19th February 2009. So you understand why I am doing all this!
