MS society walk
Peace Pagoda Battersea Park
On Sunday, 24 September I went to Battersea Park in London to take part in the MS society walk. I left the house at a 8:45, caught the train to Euston and arrived at the start just after 11. I had hoped to be there earlier. Getting to Battersea Park from Euston station by public transport is not easy.
The MS society walk
It was a lovely sunny day and it started at the bandstand in Battersea Park. Maybe its the MS, I’m just not very good at finding things, I had to ask several people. By the time I arrived the walk had started. There was a zumba session at the beginning which I missed and would have made the day more exciting. I only had myself to blame.
Battersea Park was full of people enjoying the sunshine and fresh air. There were people running, walking or cycling on tricycles and bicycles. Many people were wearing smart and possibly expensive exercise outfits. I felt stunningly underdressed but I was on my Travelscoot.
By the time I arrived
Everyone had set off on their walk. Nonetheless I was issued with a bright orange MS society T-shirt which I put on, given some water, emergency rations and a map for the 6K walk.
When I reached the end of the walk back at the bandstand I must admit I felt slightly depressed. I saw no signs of celebration for people who had finished the walk. There was a steel band playing but no party atmosphere.
Bandstand Battersea Park
Over 600 people took part that day
I couldn’t help but feel that the wrong message was being given to the public. The message on the T-shirt said ‘let’s stop MS together’. I did not see any interaction between the MS society and the participants with the general public. I then saw people finish the walk and leave the park on foot.
The public must assume everyone with MS can walk and does not suffer any physical disability. I asked one of the volunteers at an entrance to Battersea Park how many mobility scooters had he seen that day. He told me he had seen about five.
MS sufferers, their family and friends know how crippling this disease can be. It takes me over 45 minutes to walk 1 km. I did it at the beginning of September. The public at the Battersea Park did not see the real world of MS. I suspect many of the walkers were friends or family of people with MS who were unable to participate.
Why didn’t the society arrange walks of 500 m or 1 km for people like me who struggle to walk and must use a Rollator? It’s not difficult at Battersea Park, plenty of smooth flat road to walk on. The general public would then for themselves how MS really does destroy lives.
I wonder
Do you feel that the MS society seems to exist in a parallel universe or is it just me? Do you think it is sufficiently proactive in helping people with advanced MS?
For a start it should consider arranging the next walk using the facilities provided by Parallel London in the Olympic Park. There are distances from 100 m to 10 K. It is completely accessible with good car parking and excellent public transport links. Westfield shopping centre is only a stone’s throw away with shops and plenty of places to eat.
Lots of thought provoking questions. What are your thoughts?
October 2017
Yes. I often think MSNC lives in a parallel universe and has little understanding of what goes on in the other lane!
Hello,
They of all people should be able to understand
Hi Patrick!
The MS Society does seem to be unaware of how MS devastates people’s lives. There is no way I or my MS friends could walk 6km! It is also the reason I stopped getting the MS magazine, I was so fed up with stories about people jumping out of planes or wind-surfing, I knew that my MS wouldn’t let me do things like that, even if I had wanted to!
I’m amazed that you managed to get there at all, well done for that. So sorry that the MS society doesn’t seem able to organise anything successfully!
Hello,
I suspect the root problem at the MS Society is that not sufficient people with advanced MS are consulted re these activities. The MS society seem reluctant to talk about this point and FOI requests are no use with them, I cannot remember why. Such a shame cos they mean well but fall at the first hurdle.
I might have advanced MS and be disabled but I do seem to have quite a lot of energy.
I found my local MS Society more pro-active and public perception aware than the national body when I lived in the UK. Now that I am in the US, I have yet to get involved but that might change.
Hello,
It is all a bit of a post code lottery. It depends how local your local MS branch is and who is running it
Thank you Patrick.
Loads of important issues raised here by you.
I am glad you’ve got your thoughts together and put them down.
Good for you!
Hello,
I hope its not a case of smashing my head against wall and achieving nothing. Just got to wait and see