Real World Stories – Episode 3:
“My balance is elusive advanced Multiple Sclerosis (MS). Always optimistic. Want to walk at least 25 times a month for eight months #2021Walkathon. Love my Travelscoot (The Trike)”. This is the Twitter bio of “Patrick Burke, I walk very slowly”, the inspiration behind the third episode of our Real World Stories.
Patrick (68) is happily married and has three children in their 30s. He is medically retired but keeps himself very busy: he assists health care professional students at several universities and runs his own website www.aid4disabled.com. A month ago, he started being a presenter on a local radio station, Tring Radio, where he does a one-hour show every Thursday at lunchtime between 12 and 1. In his spare time he enjoys baking a cake, and Lemon Drizzle is one of his favourite recipes.
Baking cakes is one of the activities Patrick can still do despite the disabilities caused by MS. MS affects his daily life to a great extent, and his mobility is limited:
“I am unable to walk unaided and it has affected every aspect of my life. I am no longer able to do so many things that people take completely for granted. I would love to go out for a walk with the dogs but that is history.”
Despite his restricted mobility, Patrick finds many other ways of being active.
“Since medical retirement I spend a lot of time speaking to student nurses and others about Long Term Conditions and helping with interviews. MS has affected my left hand and I am unable to write so I’m getting to grips with dictation software.”
He has also turned his writing into an impressive blog and Twitter account. On Twitter, he uses the hashtag #2021Walkathon. That is because he has challenged himself to walk at least 25 times a month for eight months.
“I have discovered sitting down exercise classes; however, I get more pleasure from going out of the house for a short walk. It is easy to measure how far I have walked and how long it has taken. I do this because keeping my legs active by walking and being on my feet is very good for me.”
Patrick uses an App on his phone to measure how far he has walked whenever he leaves the house.
“I do find walking an enormous struggle, it takes me 30 minutes to walk 500 m. But it is important to me because it means I must leave the house.”
He makes every effort to get outside every single day, bearing in mind that physical exercise is good for him – and that he feels better afterward! He considers himself lucky to receive good advice from a tool called a Functional Electrical Device (FES) that helps him with his walking; without it, he would be in a wheelchair. He also benefits from a prescription for fampridine (Fampyra) which helps him with his walking and balance.
“I consider myself very lucky to have both the device and the drug so it is imperative that my activities take advantage of the benefits provided by the FES and Fampyra. I am well aware that other people with MS are no longer able to walk and but for these two items, I would be in the same position.”
The famous saying goes, “When life gives you lemons, make lemonade” or, as Patrick would say it: When life gives you lemons, make Lemon Drizzle cake!
“I must always remember to be positive, never forget that new opportunities will appear.”