When Annie was 47 she visited her doctor with a strange sensation in her left leg and poor grip in her left hand. Initial tests revealed nothing.
It was a shock when she went for a follow-up appointment with her neurologist and, after seeing how she was walking, Annie was told she had Parkinson’s. Her dad also had Parkinson’s and passed away 18 months before Annie received her own diagnosis.
Reflecting on all she’s learned in the 8 years since, Annie has written a letter to herself.
You received the shocking news today that you have Parkinson’s.
I know that you feel bewildered and frightened right now at the cruelty that lightning can strike twice in your family. You need time to let this news settle so that you can begin to come to terms with, and eventually live positively with, this new version of you.
Have faith and hope that this time will come, and I will be quietly proud of you for the resilient way you have chosen to live the fullest of lives that you are capable of living.
It won’t be an easy ride. You will struggle at times both physically and mentally. But as soon as you are honest with others, and find the bravery within you to share and ask for help, the strength and love you receive will give you the safe space from which you can move forwards.
When you are ready, seek out like-minded people with Parkinson’s. Put your fear aside and you will be humbled and inspired by their achievements, tenacity and sheer determination.
You will meet David and Dave who adore Bruce Springsteen as much as you do. Zoe, who makes you laugh out loud. Johnny-Boy and Joe who know how to kick a ball beautifully. Clare and Julia who teach you to be the boss of your medication and are very wise! Pay it back and use your voice to educate others.
Do something every day with those you love to combat the apathy and anxiety that threatens to derail you on your worst of days, when all you want to do is cry on the sofa. Forgive yourself for those days – they will happen, but they will pass.
Say yes to everything you like the sound of, and an even louder yes to the things that you think might scare you a little. Time is ticking!
Educate yourself wisely about your newfound ‘friend’. It is a club you don’t want to be a part of, but you are, and you will need to arm yourself with the facts, the many research opportunities, and ways to stay active to give yourself a good shot at staying as well as you can.
Ask many questions of your health team - and then ask some more! Sometimes you will have to be determined and dogged to get the answers that you need - not everything will fall into your shaky lap. If you can’t ask those questions yourself because you are too tired, confused or upset, find someone you trust to ask them for you.
Along the way, you will learn many things. Not all of them will make you smile. Like whoever told you that some days you will spend an embarrassing hour on the loo because you are painfully constipated?
Don’t dwell on the past or what might have been. High heels are best avoided, and I promise you will learn to love flat shoes – Dr Martens, of course.
Finally, you will learn that a positive and pragmatic attitude can be a catalyst for something extraordinary. And one day, you might tell your grandchildren of the day you were selected to be the first ever ‘Lioness’ and had the honour of playing for the England Parkinson’s Walking Football team against all the odds.
There is hope in the most surprising of places.