other information
L. Robb: webmaster and patient research partner...
I was first involved with the MS Research in Bristol in 1991 as a patient research partner. I was still able to work part time as a modern languages teacher till 1995. I soon found that one could not retire from MS!
I started helping as a volunteer in 1992 when suddenly there were no funds to allow research to carry on with patients. I wrote some pleading letters. In 1993, the effect of my letters was wearing out and I cried. It got a very good volunteer that has helped ever since. I wish more people would help MS Research in Bristol without my crying!
Provision of information:
I have searched the internet regularly from 1994 for the MS unit. I find abstracts of articles to edit and now send them more than twice a month. It is easier nowadays to find news on the latest findings about MS research.
MSfirst website:
In 2000, the charity that had been helping fund the research left. An appeal for a building was started instead and that definitely attracted a lot of attention and distracted form the important task of funding MS Research.The MS Research unit in Bristol nearly closed as a result. It meant that the work had to be stopped and grants applied for could not be taken. No patients could be involved in experiments. It had happened before...
I started a website for the Bristol MS research called MSfirst on Digitalbristol. This is a website that is for all people to find information in the region. I have tried to make it accessible to most browsers. When I found out about the MS Research and Resources Unit site at Bristol University, I thought it had useful information that not many PwMS (MSers), including local ones or professionals would find easily. I managed to make the unit known in the whole world judging by the visitors we had.
On MSfirst, there is still a page called PwMS help MS First that explains a bit more about why I wrote the first site. I hope it will help find volunteers.
Profile and Diary on the MSIF site:
Profile of the month on the MSIF site:
In this Profile of the Month on MS International Federation site, I talk about how I dealt with my diagnosis and how I got involved with helping the MS Research and Resources Unit in Bristol...
This includes the above entry now updated withdiagnosis details and new diary entries once they are checked by the MSIF. I have been informed that an excerpt from my MSIF Profile of the Month is to feature as part of MSIF's 40 th anniversary celebrations in Prague , Czech Republic on 8th October 2007.
Week starting Monday 16th December 2002 published on the a chance to chat of the MS Society's website. It shows how my welfare and the one of many PwMS (MSers) depends on research to be completed and sufficiently funded. Also, it shows how important staffing is in Physiotherapy departments, in most cases there is not enough...Here in our present situation, when hospital wards have to be closed because of sickness, it also includes domiciliary neuro-physiotherapists (physical therapists)!
MS Research Training and Education website:
I have now written this new website for the charity that has come forward to help the work carried on at Bristol. It is now called MS Research Training and Education or MS Research for short, it is a resurfacing and reshapimg of MuSTER....
MS RESEARCH Training and Education is a dedicated MS charity (Charity Number: 1043280) committed to research that will make real differences for those who have Multiple Sclerosis (MS) now and those who share their lives. I am pleased that I am not on my own.
I have used most of the pages of the original MSfirst site at Digitalbristol and I am able to add more files about MS research in Bristol and fund raising activities. I also want to publish more on the research but everyone is busy working, I live in hope...It all depends on finding funds, doing the research, writing it up and publishing or getting the degree it is done for. It takes time. Be patient!
What I have been doing for nearly 15 years has a name; many have been Care or Patient Research Partners. The MS Research and Resources Unit will hold some training sessions in the future for Care or Patient Research Partners.
My neurologist prescribed me with campaigning, physiotherapy (physical therapy) and websites. He still does not feel there is better than that in my case.
