Thank you Parkinson's UK

This I dedicate to the staffs of Parkinson’s UK who are going that extra mile to try and get us dedicated nurses.

My Dad who had difficulty with his breathing had the respiratory nurse, when she started seeing him he was able to be looked after at home. No more dashing to the hospital by ambulance, no more explaining to various professionals what he was on and why. But best of all less stressful to him.

The problem being that in our area when you ring the Drs for a home visit they are inclined to send an ambulance. With the nurse she got to know my Dad and knew what he needed. She must have saved the National Health Service a lot of money.

 When my late husband was very ill with Cancer, it wasn’t the Drs that we turned to but the wonderful McMillan Nurse, at the start she even had him back at work so he was a tax payer again. Although we had the same practice of Drs when I was diagnosed with Parkinson’s they did not know I had not long been widowed.

I think what I am trying to say is the Drs also should be fighting to get these nurses in place as it will be beneficial to them as well.

So a big thank you to people like Chris Sweeney who seems to spend so many frustrating hours trying to get us what we deserve, and I think we do deserve the chance to live our lives to the full which we have more chance of doing if WE ONLY HAD A PARKINSON’S NURSE.  

Lincolnshire County Forum

Tomorrow is Parkinson’s Lincolnshire County Forum, so with the help of my daughter and the satnav I will be going.

I am hoping to hear about what is going on in the wilds of Lincolnshire; will we be getting a Parkinson’s Nurse? I do hope so.

At the last one I went to we learned how fruit flies are being used in research, it was fascinating, but as my brain is on the same level as the fruit fly I got really confused as to how they can see their brains let alone tell what’s happening to it.

It will be nice to see other people who have Parkinson’s that have no intention of letting it rule their lives.   People that want to fight for a cure or just a better life.

So look out Sleaford here I come, and if I remember rightly there are a few charity shops that are worth checking out.

On reading twitter I have just read an item from Kieran Breem, it looks like we Parkinson’s people can rejoice in the fact that we are less likely to get Cancer, you see every cloud has a silver lining.

China Preparation

I am so geared to my Holiday in China that I can’t think of anything else, today with the help of Amazon I have ordered a new camera. An all singing all dancing one, let’s hope it is as idiot proof as the write up suggests.

For the first time I will own a camera that has not only a telescopic lens, but also a panoramic setting. In fact I am surprised that it doesn’t make a cup of tea while you wait for that perfect picture.

I will be able to bore so many people when I get back, I may even do a power point presentation for our local support group.

I am also going high Tec and getting a Raspberry, sorry I meant a Blackberry, I know it’s a fruit that I like.  I shall be able to keep in touch with my daughters while away, just to reassure them that the spending of their inheritance is going well.

I am walking around in my new shoes so as to bed them in, don’t want to have blisters while away, I am completely ignorant when it comes to sorting out what to wear while I am away, so if anyone has any good tips, I would be extremely grateful.  

Love and Other Drugs

I am so pleased that at last I have managed to see the film; I have shed a few tears, laughed a lot, I found the bit at the Parkinson convention very funny, a nice piece of comedy.

Watching it I realised that I am inclined to be a bit like Maggie,  I don’t want anyone to have to look after me, if I accept being looked after it is saying to all and that includes me that I have Parkinson’s. I am not ready to let a man come into my life and look after me, it doesn’t matter how nice he may be, or indeed how much he wants to be there for me.

So it’s me who then runs a mile and I can’t or won’t let anyone get close enough to take me on. Maybe my Jamie is out there and will come and rescue me without me realising and getting stroppy.

Ann Hathaway showed that the start of Parkinson’s tends to be very subtle sneaking up on you, a little tremor when you least expect it, an inability to open things, especially the damn pills.

Addiction

I go from feeling top of the world to the depth of despair, I have read what others have said about addictive behaviour and realise I have to do something soon about mine.

What if my medication has to be changed, I dread that as I end up feeling terrible, the thought of feeling sick all the time makes me inclined to say I will stay as I am.

I also know that I have been managing to do day to day things quite well. But and it is a big BUT I am aware that my addictions are not helping me.

I can’t count the hours I spend either on my computer playing games, and probably the same one over and over again, or indeed the hours spent moving things from room to room and never being quite satisfied with the results.

The money I have spent on spur of the moment buys, what once seemed a bit of a laugh now seems quite major.

I booked my trip to China which I don’t regret at all, I have been fascinated by the Terracotta Army since I first heard that they had been found.

I know that I must be at my fittest so that I don’t ruin the holiday not only for me but also for others, so I am sort of thinking don’t rock the boat, what if I weather the addiction until I get back.

I have had several dates with men off the internet, and to be fair they have all been very nice, but that’s it for me just a date.

I really don’t know what I am looking for so I will take myself off the sites as I am not being fair. Perhaps I had better just stick with Parky.

I know that I use him to get me out of situations, and then I get annoyed if people want to help me or look after me.

I must be so annoying to be with

Twin Talk

To celebrate Mothers Day my brother and I took our Mum out for Sunday Lunch, we go to our local pub which does good food. Mum seems to be shrinking away but boy can she eat, she loves her puddings and often plans what she wants way before every one finishes the first course. That’s usually me as Parky is not the greatest table mate.

She always asks every one what they are having before making up her mind and then goes for the same as someone else.

It drives me crazy, what a terrible daughter I am.

My brother is also my Twin, he is the eldest by not a lot, Mum had no idea before we were born that it would be two not one, so after delivering one baby she looked at the Dr and asked him what he was waiting for to be told hang on there is something else.

Well that’s Me, as we were very tiny we were Christened strait away, they had a name for a boy but not for a girl. Some relative suggested that as it was very close to Christmas Carol would be a good name and I must admit I am very grateful to that person. What would they have named me? Ann was added as a second name and only used by my mother when very displeased with me. CAROL ANN what are you doing?

I have been asked if my twin and I have a bond, I don’t know only having him as a sibling I have nothing to compare. I do know that he will always be there for me and I hope he knows it works the other way as well.

He hasn’t got a Mate named Parky but I’m not greedy I will share my Mate with him. The thing is why have I got Parky and my twin hasn’t

If I have got the link right you must watch this,

http://www.youtube.com/watch?v=KRWJybzkwN4

Twins talking

What did my parents have to put up with?