For those living with MS, finding the time (and the energy) to keep track of everything you have going on can often be a chore. Birgit is sharing the tools that she uses to make it all just a little bit easier.read more
Do you remember where you were the day you were diagnosed? I was in a semi-private room in our local hospital. The doctor had asked me to call my husband so that I wouldn’t be alone when I got the news. Although the spinal tap results hadn’t even been analysed yet, the curtain was pulled around the bed and I was told that based on my MRI- it was likely that I had multiple sclerosis. The doctor then gave me a single page printout on MS and moved onto the next patient.
I don’t remember much more about that week in hospital. Just random things like my pyjama sleeves being too narrow for the insertion of the steroid infusion needle, and the local priest coming to visit me. I kept trying to use a pen with my right hand but it just wouldn’t do what my brain was telling it to do, and the worst part was that I didn’t have a smart phone back then, so I couldn’t even Google it!
Receiving my MS diagnosis was life-changing. I think it’s not unlike asking someone from my Mother’s generation where they were when JFK was assassinated. For me- when Princess Diana died. It’s a moment in life when everything stops and shock and disbelief sets in. I remember the day I left the hospital, not only did I have to carry out my suitcase with me, but also my new multiple sclerosis diagnosis.
At the end of the day, I don’t want future MS diagnoses for others to happen the same way that mine did. Ideally, counselling should be offered immediately and a management plan should be put in place- led by the person themselves. What am I doing to help? Last year, I applied for a lottery grant from the Irish Minister of Health Simon Harris to make a book for newly diagnosed people. I waited to see if he thought it was a good idea, and he did! I decided to do all the photography and video myself. I did this for two reasons- cost-cutting and to learn a different skill. I call it “organic MS.” Doing things for ourselves by ourselves!
I am asking anyone who has MS to please help me make this book. Just answer these three questions and tweet them to me @Joan_JJ_Mc
At the end of this project, I plan to send the book to every neurologist in Ireland and make it available to as many people as possible. I think that having the content online will help maximise reach. I hope you will come on board and help make diagnosis a bit less traumatic for those trying to navigate the waters of MS.