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LucyGransnet (GNHQ) Thu 10-Apr-14 11:32:41

Gran interrupted

This week we hear from Dawn May, whose Parkinson's diagnosis two years ago prompted her to begin writing children's books that gently deal with Parkinson's - with all profits going towards research into the disease.

Dawn May

Gran Interrupted

Posted on: Thu 10-Apr-14 11:32:41


Lead photo

Dawn refuses to let Parkinson's hold her back.

I had been so looking forward to being a granny, and not just so that I could legitimately join Gransnet. There were all the adorable little outfits and toys to share and of course, teaching the baby to swim, to cycle, taking long walks along the lovely cycle path here in Bristol, identifying the birds and their songs, collecting leaves and stones - you know…

And then came the shock of my life. A diagnosis of Parkinson's disease, and the baby wasn't even born, so I had already "lost" six months, degenerating, miserable, despairing - then angry. Why me?

I ran and cycled, swam and skipped, never smoked - though bizarrely, smoking seems to be a protective factor - didn’t drink (too) much and had just retired, feeling optimistic, energetic and ready to embrace this new stage of my life.

I cried a lot, retreated into myself, exhausted my very patient friends and family, and then regrouped.

I had been given medication for the slight movement difficulties I had, I noticed I wasn't actually deteriorating, I made myself run and swim again and the baby was delightful and didn’t seem to notice my Parkinson's at all!

I cried a lot, retreated into myself, exhausted my very patient friends and family and then regrouped.

And I started to write - first a book about a granny and her little grandson, Jake, in which the granny had Parkinson's, but it didn't make any difference. "Does it hurt, granny?" seemed to be what bothered Jake most, but as it didn't, they could get on with life.

Then some poems.

Then I went on to the offensive. Why shouldn't a granny with Parkinson's give a voice to other grannies, and to those whose children and grandchildren were afraid of the word and of the illness? So four other books followed, about Jake and granny cooking and gardening, going to the seaside and to Alton Towers. "Steady on, granny", says Jake in the third book as granny is determined to do it all while she still can. And so far, I can.

Two years into this disease, I am relieved to feel and look - as far as my friends, family, doctors and specialists report, and that will do for me - fit and well.

I have joined a choir, volunteer as a reader at a local children's centre, which I love, swim and cycle, run and skip. I love skipping. You should give it a try again.

I drive from Bristol to London every week to look after my little grandson, now 18 months old, so still not quite ready for Alton Towers, but I'm watching out for the signs. I spend two glorious days with him and it is the highlight of my week.

Stories are so much better than Q&A, don't you think? An oblique reference where the child says "Oh, Parkinson's. Isn't that what granny's got?" can open the dialogue. Testimonials on my website are witness to the power that fiction has, and the first mission statement of Parkinson's UK is to "change attitudes".

Try a story.

All profits from Dawn's book go towards research into the disease - try a story this Parkinson's Awareness Week.

By Dawn May

Twitter: @Gransnet

Galen Thu 10-Apr-14 12:02:09

We'll done! We Bristol area grans are tough!

Mishap Thu 10-Apr-14 12:29:04

Being married to a grandpa with PD, this is very interesting!

Is there just one book?

LucyGransnet (GNHQ) Thu 10-Apr-14 14:15:51

One book for now Mishap but I believe more are on their way. More info on Dawn's website as well.

Nelliemoser Thu 10-Apr-14 14:34:28

Blimey that is some drive she does. I think 50miles though the Peak District every two weeks is tiring, never mind 120miles along the M4. Respect.

jcdoh Thu 10-Apr-14 22:57:39

so glad to hear you are attacking life--and getting the best you can out of every day, lots of respect for you. don't let anyone put you off !

too many `lost' souls hit this age group and give up- sitting is one of the worse things one can do--comatose the head and body!

so even those who are in wheelchairs need to socialise as much as possible; one of the grand things we have seen through the Paralympics !

its far too easy to say I cant! or I will look a fool! life is for living NOW! enjoy it!

grannydawn Fri 11-Apr-14 20:37:14

Hi there Mishap. Thanks for reading the blog.
There are 5 titles to date, but all from the perspective of a granny, not a grandpa, I'm afraid.
Other people have asked me to widen the net and write as a grandpa or as an Alzheimer's sufferer.
But I wrote these books from the depths, and it would feel a bit mechanical and insincere to diversify, I think.
Shame, as I guess there is a market out there.

grannydawn Fri 11-Apr-14 20:45:47

Thanks, jcdoh.
I have always been a glass half full person, and once I had re-grouped - and stopped crying - I felt excited and determined that I was going to share my love, life and laughter with this beautiful, loving and funny little person.

So now I am totally devastated, because we have been told he is going to live in Tanzania from September and the optimism and positivity I had has evaporated.

I WILL re-group again, and it isn't fair for me to feel I have the right to expect him to stay, just because I have Parkinson's.

But it is very hard :-(

grannydawn Fri 11-Apr-14 20:47:46

But I am a devoted granny, he is so funny and otherwise I would only see him once or twice a year.

seasider Sat 12-Apr-14 09:24:45

That will be so hard Grannydawn but please stay positive and start planning your trips to see him. If you stay well maybe in a few years he can come to you for holidays? Lots of tips from long distance grannies on Gransnet smile

DebnCreme Sat 12-Apr-14 09:32:40

(((grannydawn))) flowers for you grannydawn

DebnCreme Sat 12-Apr-14 09:33:50

Oh dear, try again (((hugs))) flowers for you grannydawn

Mishap Sat 12-Apr-14 09:50:19

Grannydawn - it must be hard news for you that little GS is moving away so far. But I am sure, that with your positive attitude (albeit with the occasional understandable "blip") will see you through. There will be new ways of communicating with him via technology and old-fashioned letters and he will learn to look forward to these. Time spent with him will be all the more precious and much enjoyed I am sure.

Just to tell you that my OH was first formally diagnosed about 5 years ago, but we had known what he had for at least as long beforehand as he is a doctor and we both knew what was coming. He only went to his GP about it at the point where he felt that treatment was needed and might be useful. His drugs keep things reasonably under control; but his problems are complicated by a heart condition. There is no doubt that this combination (and his anxiety problems) results in restrictions on our lives, but the PD drugs are impressive these days - when I first worked in hospitals over 40 years ago, people with PD led very restricted lives, whereas now they bash on with real life, as you have been doing. We have a very good Parkinsons nurse here who is alays on the end of a phone.

I send you every good wish - regroup, reframe, as they say - and move onward.

grannydawn Sat 12-Apr-14 23:56:20

I was on the crest of a wave after GS was born and had imagined my life would be shared with him as it has been up until now.
My books reflected that expectation.
So the shock was even greater.
He has been with us for 7 days and will be for another 3 days till parents return from holiday. This intense time together is so precious.

Your comments remind me that I am, in the main, a positive person and I will manage this rupture. It is good to have your support. Thank you.

My Parkinson's symptoms are being well-managed with slow-release medication and my Parkinson's nurse is, as is yours Mishap, always at the end of a phone.

It isn't a good idea to pin all your hopes on someone else, is it?
I should have learnt that by now!

Minty Sat 19-Apr-14 10:49:40

Dawn is an amazing and inspirational lady.
Her books are lovely, and a wonderful resource for anyone working with or for reading to your grandchildren.
The more information available, in a child friendly way,such as these the better.
Well done Dawn.

grannydawn Sun 20-Apr-14 16:18:33

Thank you, Minty.
Our local BBC TV interviewed me with my lovely grandson during Parkinson's Awareness week. It was a bit of a choker, but we managed!
Take a look. It's a good preview of the book - see if you like it.

"I'll do it, Granny" nearly ready.

Something good should come out of this!

grannydawn Sat 26-Apr-14 08:16:06

Countdown .... 4 months to go, and my head is in the sand. After the initial shock and the tears that wouldn't stop, I am now in denial.
We have had 10 glorious days with sole responsibility for this wonderful little boy. The sun was shining so the garden was delightful, "wah wahs" (flowers), just starting to bloom, warm grass to sit on, tadpoles wiggling, conveniently, on the magnolia petals blown down into the pond, the old plastic "brum" (car) our own children raced around on in the garden reappearing, much to GS's delight. And then the open-top bus ride around the city, the steam train ride, the zoo, the industrial museum with dockside cranes and old buses and carts, we enjoyed every minute.Then there were the quiet times with Duplo and books, as well as the screeching chasing games around the house, early morning listening outside his room, to his non-stop chatter about the day before (?) or his plans for today (?) with lots of "way wahs", "brums", "digger diggers", "hoo hoo" (trains), "wuh, wuh" (dogs) "bus" - practising just about every word or sound he has mastered so far with sheer delight and laughing to himself in his cot as he waited to be lifted out. Such a joy!
Now granny duty carries on as usual, as though the elephant in the room has wandered off somewhere. The parents prodded him a bit, one day last week, but he wasn't budging. We listened, Grandpa asked some tough practical questions, I just cried, disgracefully ... And now it's life as normal. Oh hell!

grannydawn Thu 01-May-14 19:09:42

Just spent 2 lovely days with GS. More words tried out - including "nanny" for the first time (grin), "nail" (snail - followed by num, num (yum, yum because I told him the birds ate snails (smile) ) "wiwul" (not a bad attempt at squirrel) and "kek" ( because I usually bring some sort of cake with me when I visit)
We spent one afternoon exploring the big children's rides at the park, as he didn't want to go on the little swings, slide and roundabout. The older children were delightful, bemused and very gentle with this little chap who strutted his stuff unsteadily around the site.
The second morning was sing-along, where GS decided it was more fun to climb onto and along all the chairs, bouncing up and down to the music as he went. Stern attempts to recall him just resulted in hysterical laughter and a speeding up of his race along the chairs, so I let him ... irresponsible nanny.
The afternoon was manic duck feeding/chasing and racing up, up, up the river bank then down, down, down, down again Granny descending sideways, trying to tack and clutching GS's hand for fear of his rolling down into the river. Fearless and fascinated by the rapidly moving water, and the ducks landing belly first at speed right in front of him.
I am making the most of the remaining "special" time. I can tell people about it now without sobbing. I can say how lucky I am to have had this special relationship. And I really mean it.
I can't plan ahead for the trips to Tanzania yet. But I am getting there.

JoanWilliamson Sun 04-May-14 17:01:49

What a lovely record of these precious months with GS. We are so lucky to spend time with our gc's.
I am off to Weston on Wednesday for an o'night stay but it will be a brief visit but enough time to lift my heart.

grannydawn Tue 06-May-14 23:47:06

And now there is the very moving article in the Daily Mail on Monday 5th May. take a look.

grannydawn Wed 25-Jun-14 12:21:17

A blog is an open diary - isn't it? So you write about the things that move you, excite you, upset you. And that generally touches on the lives of other people. So I've stayed silent for a bit. But now I'm at it again, only more reflectively.
So the 2 years working away is now 4 years. Luca will be 6 - and I? I will be 65 and maybe not the lively, active granny I have been so far. I hope Luca will read my books and start to understand this Parkinson's thing. "You are not your illness", that's why we call ourselves PEOPLE with Parkinson's PwPs, not patients or sufferers or any other term that defines us by our illness.
But, if you only see someone every few months - or less - you notice the changes more. And I know there will be changes and that frightens me. I don't want to see myself through Luca's surprised eyes. I don't want to have to excuse myself. I don't want to become the strange old dear in the corner, who has to be humoured because she's your granny.
We have plans to Skype regularly before the family leaves. That will make us less of strangers perhaps. At first attempt last week end, and after all the technical problems had been sorted, Luca tried to eat the microphone and press the keys, waved a bit, smiled a lot, blew kisses, said "yes" to anything and everything we said - which was nice :-) - and then got bored with it all. But he isn't 2 yet, so that's a good start. We will persevere.

grannydawn Wed 25-Jun-14 12:31:03

I think I've just put some photos in my gallery. I'm not very good at taking or storing photos, so there may not be many more. Except perhaps from Africa ..

grannydawn Thu 26-Jun-14 00:16:19

Just before I turn in for the night , I have to share 2 funny episodes from this week.
We went swimming in the open air pool near Luca's house yesterday. Luca was not convinced he wanted to be there, but at least the water was warm.
As we got out, he wanted to walk around the pool, to look at everyone else, dozing on towels in the sun, or listening to music or, in the case of one young mum, sitting with her husband, breast feeding her baby.
Luca went close up to the couple, took stock, then turned to me and said 'Num! num!" He can obviously remember how nice that was.
The couple found that very funny, fortunately.
And then he has noticed that little people are not "babies" but big people are all "man". So, as we got changed in the communal changing room, he singled out one poor lady, pointed at her and said, in a very loud voice "MAN"
It wasn't worth a complicated explanation, but the lady herself wasn't amused!

grannydawn Sat 28-Jun-14 17:51:29

And Parkinson's research is going on apace - I think I must be the "face" of Parkinson's in Bristol.
I'm nothing to do with the research but they had a picture of me to hand :-)

See the link

It does give me hope, though, even though a cure is still a very long way away.

grannydawn Fri 04-Jul-14 16:08:11

Helloo-oh. Is any body out there? I am writing my blog/diary again.
An interesting discussion with another PwP this morning, more private than I am. She doesn't want to be defined by her PD and so is silent. I don't want that either and so I shout "I AM NOT MY ILLNESS"
I think I can fill that silence with my shouts. They have to listen to me and take me on.
She thinks her silence puts her on a level playing field with all those other PeopleWithoutParkinson's. People can't really tell yet, so neither of us needs to explain ourselves.
But I HAVE to be ready for them when they start to notice, so they don't get me off guard. I am one step ahead.
Somebody commented that, even after 4 years away from Luca I would "still be with us" - i.e. not dead - but might be in a wheelchair.
What? No, no, no.
True, I am afraid of what changes there will be over those 4 years. But I will fight them all the way - loudly and defiantly, if perhaps pointlessly!!