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LucyGransnet (GNHQ) Thu 26-Feb-15 15:53:57

Gran interrupted: one year on

Dawn May returns almost a year after her last guest post to update us on her progress and highlight the uncertainties of living with Parkinson's. While her grandson, Luca now lives in Tanzania with his parents, Dawn is already planning a trip to see him.

Dawn May

Gran interrupted: one year on

Posted on: Thu 26-Feb-15 15:53:57


Lead photo

Dawn May

'The little grandson who's lit up my darkest days'. Do you remember that Daily Mail feature, following my Gransnet guest blog, for Parkinson's Awareness Week in April last year? I was so positive about my diagnosis and so excited that I had been given a new lease of life with the arrival
of Luca.

A lot has happened since then. That little grandson moved to Tanzania, East Africa in October and, at that point, the light did go out. I know it's unhealthy and obsessive to mourn as I did, but gransnetters will understand. So I restructured my weeks - no more long trips along the M4 from Bristol to London every week, packing and unpacking my suitcase, scouring charity shops for funny bits and bobs to delight and amuse, seeking toys for the next stage, thinking about Luca, our little light and what we would do together the following week.

Monday mornings are now spent, together with two friends without Parkinson's, in a local junior school, listening to Reception class readers. That fills the gap a little, focuses the mind and keeps me in touch with little people. And then we lunch.

Tuesday was the day I used to travel. I have filled it with writing for children and making myself walk around the city explaining and offering, fielding comments such as "Do you know anyone with Parkinson's?" My symptoms are still quite mild and mostly invisible to the casual observer.

I drag my leg a bit when I walk, my left arm doesn't swing naturally, I can hear that my intonation is a little flat and monotonous, my facial expression is less animated than it used to be, I can be a bit unsteady and tend to lean forward - but these people don't know me, or how I used to be, or what the typical signs of Parkinson's are except for the tremor. And for the moment I have no tremor. I am a walking, talking advocate for the Parkinson's UK motto 'Change Attitudes'.

I have ups and downs. There was a meltdown day yesterday, but I am a relentless optimist at heart

But it's not easy being a one-woman show, fielding the questions and absorbing the evident sympathy. I don't feel sorry for myself, but I often take on the other person's fellow-feeling and have to rush off for a weep and to recompose myself.

Wednesdays used to be spent entirely with Luca, so now I do some more writing or 'computer catch-up' with old friends and real-life catch-up where I can. I'm pre-retirement age, 62, and many of my friends are still working. I used to go to the gym, attend Body Balance classes, do a few muscle-strengthening exercises followed by a swim and a rewarding steam and sauna. I've lost the appetite for that.

Thursdays were always choir days, and singing lifts the spirits - except when we sing Autumn Leaves or "I shall rise above…these tribulations" or "Hold on...".

Fridays are now spent preparing little packages to send to Tanzania. Luca loves to receive a funny card and the cards are pinned to his bedroom wall, apparently. I write a few words and he still remembers Nanny Dawn, and shrieks with delight when he hears my voice on Skype, even before the picture appears.

I have ups and downs. There was a meltdown day yesterday, but I am a relentless optimist at heart, as my People's Republic of Stoke's Croft mug constantly reminds me. I shall rise above…

I do worry about the progression of my Parkinson's and whether I shall be able to do all the things I had planned to do. The neurologists optimistically tell us all that medication can control our symptoms for 10 years or so and then…surgery? Maybe a vaccine will have been developed? Drugs which can arrest the progression of the disease? Some of my fellow PwPs haven't lasted the 10 years without other, maybe related, complications kicking in after only three or four years. And the neurologists admit that everyone's symptoms are different. So no one can honestly tell me about me.

In the meantime, we have planned a trip to Tanzania. I am preparing myself for the goodbyes before we have even arrived.

Dawn's children's books, which address the subject of Parkinson's, are available from her website.

You can also download Parkinson's UK's Use Your Head materials for your local junior school and 'up the friendly' as this year's Parkinson's Awareness campaign (7 - 13 April) will be encouraging.

By Dawn May

Twitter: @Gransnet

jinglbellsfrocks Thu 26-Feb-15 17:09:56

Dawn you are so brave. And so strong. Reading that your precious little grandson moved to Tanzania almost made my heart bleed for you. You were, and are quite entitled to "mourn". What granny wouldn't. Much, much, respect to you for getting on with your life so well. You are a lesson to us all. I wish you all the very best, and enjoy your trip to Tanzania. Love to you. X

Mishap Thu 26-Feb-15 17:19:13

OH has had PD for about 10 years now. He is on a raft of drugs, but is still driving and playing the violin in spite of his tremor (violin playing seems to come from a different part of the brain!). He does have lots of problems - he only drives locally as his navigation skills are poor, he has no stamina and spends a lot of the time resting, he has gastrointestinal problems, quiet speech, hypotension when he gets up from sitting and lot of other things which are manageable at the moment.

I hope that you continue to do well and are able to visit dear GC.

MiniMouse Thu 26-Feb-15 17:23:51

Inspirational Dawn flowers

sarah12345 Thu 26-Feb-15 18:27:16

I too think you are inspirational and I send you love and best wishes. X

loopylou Thu 26-Feb-15 18:34:52

You're an amazing lady, truly humbled reading this.
flowers and I hope you have a great trip to Tanzania x

Geraldine62 Thu 26-Feb-15 18:50:08

Keep on keeping on Dawn, I love that you send packages and little cards to your grandson they love to receive stuff in the post.
sending you lots of good wishes and flowers & a cupcake

Coolgran65 Thu 26-Feb-15 18:59:47

And I do empathize with regard to your little grandson. I have one 6000 miles away.

grannydawn Thu 26-Feb-15 22:35:24

I am very grateful for your messages Gransnetters. Sometimes it's too hard to think let alone write about my PD. I do feel the loss more because of the fear of increasing disability.
I don't think you can get the books from any more. Try and 100% profits from books go to Parkinson's.
Parkinson's Awareness week runs 20-26 April��Watch out for it . Thanks.

Judthepud2 Thu 26-Feb-15 23:13:03

Oh Dawn, I do so feel for you losing the frequent contact with your little light, Luca. Thank goodness for Skype. At least you will both see each other and hear each other's voices. My mother-in-law had PD and lived with us for the last years of her life so I have some experience of the trials it presents. Positive thoughts going out to you with a few (((hugs))).

cinders54 Fri 27-Feb-15 15:48:47

Dawn, thanks so much for sharing this with us. My daughter and son-in-law have announced they're moving to the US next March, taking the light of MY life, wee Ailsa, with them. I care for her when her parents work, and the joy she brings me is immeasurable. I'm going through the normal stages of grief - right now I'm in a defiant mode. It helps so much to know there are wonderful people like you adjusting to both a serious health issue as well as seeing your grandson jet off. I could do with a support group! I wish you all the best.

Mishap Fri 27-Feb-15 22:16:25

PD really is manageable these days - OH is doing well; so much better than he would have done even a few years ago, and there are new developments in treatment all the time. Clearly he lacks stamina and is not as well as he would be without it, but things could be a whole lot worse; so do take heart Grannydawn - I am sure you will be enjoying visits with your family for a long time to come.

angybev Sat 28-Feb-15 09:47:14

Hi Dawn, I know just how you feel as far as your little grandson is concerned. My only daughter and grandson, aged 3, live in Colombia, South America, and part of me is always with them. Positive thinking is the key. We brought our children up to be independent didn't we, and the world is their oyster. Thank goodness for Skype and long-haul flights! I hope you have mamy visits to your family to look forward to - all the very best.

bibibetti Sat 28-Feb-15 10:03:56

I understand so well how you feel as I am more or less in the same situation myself even with the grandchildren moving away though not as far as yours. I try to forget about the Parkinsons at the moment I also have lung problems but I try do everything as normal and one of my big helps is doing yoga with a wonderful teacher find it helps me a lot. I am sure the best thing to do is to help yourself as you do. I have just joined grans net and yours were the first blog I read which is a coincidence. My very best wishes to you and look forward to more news from you.

absentgrandma Sat 28-Feb-15 16:31:24

Your uplifting blog has provoked so many positive comments. I send my very best wishes for the future. Do keep us updated.

grannydawn Sun 01-Mar-15 18:59:29

I am overwhelmed by your kindness and fellow feeling.
Thank you, all.
Sometimes I do feel strong and defiant and want to share these positive feelings with others in my situation.
I wrote my books in such a mood. ( not Lulu or Amazon any more!)

I know People with Parkinson's who are in despair after their diagnosis and I feel for them. It's so hard to be realistic and still stay optimistic. And I know the cheery message from my books can appear naive or misinformed.
But I am genuinely not in pain, I can still run and swim and skip and cycle and I can't imagine a time when these things will no longer be possible. And what sort of a story would that be? That is for others to write, not me.

Some friends and other PwPs say it's all too public. I tell them I need this network and to feel other people care about me, even if they don't know me.
It doesn't make me any less of a fighter, does it, to want other people alongside me?

But then there are days, like today, when the power in Mwanza fails, so there has been no Skype contact for the second week running, rain and grey skies here, an aching in the pit of my stomach. I see the piles of little books under my table, and then they seem irrelevant, even offensive when I think of those PwPs isolated, in despair or in pain. Book 1 "Does it hurt, Granny?" is optimistic and bright. Many PwPs are not. They tell me they can't relate to the Granny in my books and I do understand that. They ask me to write about their more advanced symptoms, their tremor, slowness, hesitation, confusion.
But these are not my stories. I am not there yet.

Little Jake wants to help Granny in "I'll do it, Granny", but she doesn't really need it for the time being. She needs him to share some time with her, doing things together which they both enjoy. That's all.

Yes, I want to go to Tanzania and to share a little part of Luca's life. But I am so scared.