To be constantly called “inspirational” is truly humbling. I want to encourage others with Parkinson’s to keep on going, to join in with our activities, to stay well, to share their experiences, their struggles, their frustrations and their triumphs. I want those people who work and live alongside us to hold hands and walk with us. I want PwPs to fight with courage for better services for us all. The end game isn’t clear, but there’s so much to struggle for on the way. Thank you to my family and friends who sustain my courage, never let me fall, no matter the tears and the moments of despair – and there are some. That I can hold out a helping hand to fellow PwPs and can be a bridge between us and those from “the outside” is perhaps the thing that motivates me the most. Thank you for expressing your confidence in me.Read More »
6 and a half years on and still going … well, not exactly “strong” but not bad.
Nordic Walking, yoga, PD Warrior style exercises, Irish set dancing and boxing – oh and now a Personal Trainer to co-ordinate it all, I’m fitter than I ever was.
Like all People with Parkinson’s, I have my ups and downs. I’m going to the Italian lakes in November for a week, to the European Parkinson Therapy Centre to “re-align myself”. It’s difficult to stay positive always, but I do my best. If you need a friendly ear, drop me a mail. You don’t have buy a book!
A new book is on the way, I hope in readiness for Christmas. Just nagging my illustrator to tie up the loose ends. I’ll bet you can’t wait!
And it isn’t about Parkinson’s because we do have a life as well.
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I have just been rumbled! I was researching the Keto diet, because my son and daughter-in-law have gone for it big-time. “Is it safe?” So I have spent the last hour Googling. And then, I came across this wonderful blog from Jordan .. I am still laughing! Read it all, you “Moms” out there. Thank you Jordan.
Oh and by the way, we People with Parkinson’s may have a dead-pan expression on our faces, but we are in fact killing ourselves laughing inside.Read More »
I gave my son your book to read to his children – now six and eight, to see how they reacted, as up to now, they had not asked many questions, although they do know that their granny has Parkinson’s. Here are his comments….
“The brilliance of “Does it Hurt Granny?” is that the starting point is that Granny is still Granny. Granny can do everything she has always done…but occasionally needs a bit more help. It doesn’t hide from the realities of what it is involved, but it does it in a thoughtful, gentle and realistic way, acknowledge both the positives with the inevitabilities. I found it incredibly easy and soothing to read with my kids – helping express the words about my mother that I find so hard to say myself and helping my kids to understand that Granny is still Granny – the same Granny that they know and love with all their heart, but every now and then, we just need to give her a bit more love and support. Thank you for writing it – it has been an enormous help to me and my family”.Read More »
I received this wonderful testimonial last week, from Su , a Person with Parkinson’s, on receiving the book.
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I found your books absolutely delightful, with such a light touch. The illustrations are wonderful and tell the story so well. I very much like the way you have gradually approached some of the more obvious effects of Parkinson’s over the five books. The messages are delivered clearly but gently and important points (eg “it doesn’t hurt”, “today is just a bad day”, “you cheer me up”, “let’s talk about it” etc.) are very effectively emphasised with simple repetition.
To be able to share activities with one’s grandchildren is a joy and I love the excitement and happiness that emanates from the pages when you are together with your grandson. Whether you are having an energetic and good day or a gentler time on a bad one, this happiness is tangible and the drawings demonstrate very clearly the love between you.
Difficult days are not shied away from and, consequently, are accepted when they do occur. As grandson and grandmother are regularly doing things together, grandson feels included and useful, even when Granny is having a bad day and can’t do very much.
Your book covers so much in a relaxed way, leading to increased understanding at the child’s pace – a useful resource for both parents and their children and grandchildren. To my mind, your positive, cheerful approach to open discussion is absolutely the right way forward.
The last 2 pages are wonderfully positive and warm. Both Granny and Grandson look relaxed and happy and their hug says it all – “yes, we will talk about it” and “no, we won’t let it get in our way”.
Very happy New Year and best wishes Su”
This is exactly what I had hoped to do, Su. Thank you for summarising the stories so beautifully.
Luca met you this morning and is very sorry he is going back toTanzania next week. He hopes you will be his friend and visit when he comes back to Bristol to stay with Nanny Dawn.
Or if you want to visit him in Tanzania, he will arrange that for you.Read More »
Thank you Wendy and co. for today’s introduction to volunteer education. Lively and engaging and definitely something I should like to be doing. Who are we, these “People with Parkinson’s?” What do we look like? What symptoms do we have? What do we need in order to live life to the full? How can we share this with those around us, partners, friends, carers, professionals? Awareness isn’t just for that one week each year in April. Trying to raise awareness on TV – how can we help ourselves? And help others to talk about P.D.?
Scroll to 47 minutes – and there it is. Thanks for watching.Read More »
When I get old and losing my hair … well, that hasn’t happened, even though I am now 64. But what HAS happened is that I don’t really have a grasp of this basic technology – my website!
So, this evening, when attempting to “wind up” ( or “wind down” – English is so complicated!!) my “Dawn May Books” company, I took a quick look at the website, just to check on which books were still for sale on it.
And 19 of you popped up – in amongst the ads for Viagra, mineral powder face products, offers to improve sales if I paid out more money than I have – 19 of you saying how the blogs had touched you, were helpful to you, cheered you up and all wishing me luck with my venture.
The most surprising was a lovely mail from Ian Foster, who is now a photographer. I “tried” to teach him French at secondary school 35 years ago, apparently. Oh Ian, send me a photo of yourself. Remind me of my attempts to teach you. If between us we were unsuccessful, I am sure my teaching was just as much to blame as your attempts to learn.
So now, it isn’t French I want to talk about. It’s Parkinson’s. French was always my passion, but this thing is now my life’s work. I’m still keen to spread the word. Once a teacher, always a teacher. Because Parkinson’s affects so many people. We don’t choose to engage with it, any more than we chose to engage with French all those years ago. It just happens to some of us, the unlucky ones.
“It could be you” says the lucky finger, pointing down from the sky on Lottery draw days. Oh yes. It was me. 1 in 500 of us with Parkinson’s. What are the odds of winning the Lottery? Better odds than that? But no point in being bitter about it, is there? I’m carrying the torch, drawing attention to this condition, making sure the world knows and cares.
And especially our children. Children want to understand why Granny is slower and why no-one will talk about it. They want to help. They want to cheer her up, but also to share her story with their friends, their teachers and their families. “Can we talk about it?” asks Jake, finally, because he needs to and of course Granny wants to talk too.
Please get your own copy of the book, read it and pass it on. Share it with your children, your grandchildren, your neighbours, your local school. The more we can talk about it, the better understanding there will be.
And please contact me on firstname.lastname@example.org
I promise to get back to you this time.
Thank you for your “views”. Lots of people come on to this page. Please think about buying the book. 5 stories in 1 volume. £1 will go to the Cure Parkinson’s Trust for each copy sold. And children do love the pictures and the bright and humorous illustrations.
My grandson is still in Tanzania so I haven’t been able to share the stories with him yet. He will be home for the summer. I am sure he will notice that I move more slowly than last year. Then we CAN “talk about it”. Just like in the story.
So we danced today at a Ceilidh. Not as fast as those without Parkinson’s, but we were looking good. And Nordic Walking classes are twice a week, technique included, improving stamina, strength, balance, stride length and morale. It’s lovely to walk together. And boxing is great fun but exhausting. A laugh a minute and we are getting better. Sky News came to film us on Friday 12th. Personal Training focuses on what a Person with Parkinson’s needs. What I need is another brain scan. Why am I doing so well 5 years after diagnosis? Is it the exercise? I believe so. Have new neural pathways been made? Yes, I think so. Have cells been renewed? Only a brain scan could show that they have.Read More »