Patrick Burke – MSpals

Imagine getting straight out of bed and immediately walking into the bathroom, Haha those were the days and I can still remember them; must have stopped about 2012. Nowadays I have to start my day differently, I must stretch my stiff muscles. Multiple sclerosis is the culprit. Every morning is time to stretch What did I do in my sleep? Last night did I dream that I was running 10,000 metres with Mo Farah or was it a nightmare? Whatever it was, it has left the muscles in my legs all scrunched up, they hurt, ache and feel like an overused elastic band. Stretching my legs sends them into spasm, worst are my calf muscles. Whether I wake up feeling as happy as Piglet or sombre as Eeyore my legs are as much use as a chocolate coffee pot. Somehow every morning I must swing my legs out of bed and then struggle to make my feet be flat on the carpet. Stretch my stiff muscles This all starts when I am lying in bed and try to stretch my legs, I can do very little with my left foot because of terrible foot-drop, sometimes the leg will give a sympathetic twitch. The calf muscles in my right leg then come out in sympathy and I have an attack of cramp or is it a spasm? This gets me on my feet quick sharp but only for a couple of seconds then I slump back onto the bed exhausted by the struggle. Eventually I swing both legs out from under the warm duvet and they touch the carpet. I struggle to get toes and heel of my right foot flat on the carpet straight away. Even harder with my left foot. Is it cramp or spasm? Putting my left foot on the carpet starts with my toes. Gently I must persuade my left heel to touch the carpet. Actually there’s nothing gentle about it; the only way is to stand up, put my weight through my left leg. Getting out of bed It was so easy 15 years ago. I didn’t give it a moment’s thought, I just got out of bed. Okay now I’m 62 so I might find it a bit harder. Blame that other pesky little friend of mine, that disabling illness called multiple sclerosis. Touching the carpet Eventually I’m sitting on the bed and both feet flat on the carpet but this is only the start. Now I must bend over and touch the carpet with my fists. As I bend forward the left foot involuntarily twitches and skids backwards. I sit up and lift my left leg back into the correct position and do it again; I have long lost the ability to move it using my leg muscles. Back in position and I bend down again, getting better, it only slips backward a couple of inches. By the fifth attempt it behaves. The next ritual I stand up and put both hands on the chest of drawers that is beside the bed. Lift my heels off the ground then lower them so my feet are flat onto the floor again but my left knee hyper-extends; now I struggle to lower my left heel onto the ground. My leg muscles do protest too much but by the tenth time everything is behaving. The final stretch With some difficulty I now manage to arrange the soles of both my feet pressing onto the chest while I sit on the bed. Now I try to touch my ankles ten times. I get closer to my ankles with each stretch but never quite make it. I never thought I would need to do this when I was younger. Time for action Now I can shuffle into the bathroom using my two wheeled walker to stop me falling over. Another day starts with a series of little victories in my life with multiple sclerosis. Patrick was diagnosed with RRMS in 1995 but believes his symptoms started in 1972. The disease morphed into SPMS in about 1999/2000. He was forced to take medical retirement in 2012 and set up the website Aid4Disabled in the same year. The website is the story of his MS since retirement and it describes a wide range of objects that are readily available for people with physical disabilities to improve their quality of life. Patrick is now unable to walk unaided nonetheless he keeps busy and gives talks on ‘Living with MS’ and ‘Hidden Disabilities’.