Before With and After Jim

Life has to move on so I have made my mind up its time to sell up and get myself something smaller.

It will be a terrible wrench; this is where my memories are of Jim. With this in mind I have spent a good part of the day looking at photos and I realize that my life can be put in sections. Before Jim, with Jim, after Jim.

I know when I walk out the door for the last time it will be saying fair well to a chunk of my life, a chunk that has not always been what I had hoped for.

There was Jim's cancer which he fought to the end, I have the last photo taken off him and I can honestly say that at the time I didn’t see him as he looks in that photo. I knew he was very ill but I think it was his personality that shone through and made you less aware.

I should part with it but somehow I can’t perhaps it is there to remind me he had no choice and had to go.

I have cleared the floor of its piles of photos and perhaps it’s a good job that most of my new ones stay on the computer to roll round as a screen saver.

I must organize them so that in the future when I have gone completely GAGA everyone will know who’s who, but then again will anyone care.

What Would a Cure for Parkinson’s Mean to You?

Last night I logged on to Parkinson’s UK site and ended up reading all the answers to the Question they have set. WHAT WOULD A CURE FOR PARKINSON’S MEAN TO YOU?

There have been a wide number of replies from a lot of people. Friends and relations of Parkinson people whose lives have been turned upside by taking on the role of carer. Then there are the celebrities who help to raise awareness of our lives. I am also pleased to see the input from the professionals those people who work in research and are striving to get a cure. Some of them would be out of a job if a cure is found.

Last but by no means least, there comes us Parky people. I realized that we are all on the same wave length, all we want is our lives back to be able to control our bodies our brain and our future.

We feel enormous amounts of guilt because we have to ask for help, this can vary so much from person to person.

Those of us fighting the side effects of our medication would be dancing in the street, well there is one here that would.

Parky meat Druggy

I have finally admitted to myself that self-help is a very good idea. BUT and it’s a very large BUTTTT I need help.

With this in mind I have rung our new Parkinson’s nurse who is coming to see me on Friday; I think I had a huge sense of relief when he said he would come.

I have felt totally abandoned as all the medical people that I have been with have changed, no one’s fault. As one by one they have either retired or changed where they worked, my Neurologist has quite a few patients and my appointments are about nine months apart. Gosh I could have a child in that time but mind you there would have to be a star in the east.

I truly do not know where to turn as I have no faith in how my medication has been monitored, does anyone understand what it does to you.

Well I am hoping that Friday will be a turning point, the Parkinson’s nurse that I have fought so hard for might be my saviour.

I know I have told everyone that I go to Peru at the end of the month; I want to go away without the side effects. My Mate Parky will defiantly be with me, I can cope with him most of the time but not if he brings his pal My Mate Druggy.

Looks like I have a new Mate, well only new on paper, as he has been around nearly as long as Parky.

What would a cure mean to you? - Parkinson's UK

What would a cure mean to you? - Parkinson's UK
I have just found the story I wrote for Parkinson's UK so thought I would share it

No Swearing

Now I have had time to reflect on my going back to Requip I find myself slightly torn. I know I am doing more and the stiffness I was getting has thankfully been a thing of the past.

I am most of the time more alert; I am also finding that I can manage with one less Stalevo which I had been taking four times a day. It is only on long days like when I want to party that I take the fourth.

So why the hesitation? 

I have to admit that on a couple of nights I haven’t gone to bed at all, I know its blooming crazy I even tell myself to go to bed but I have a habit of ignoring myself.

Sorry T but I have also done a bit of gambling, I also know that by admitting this in my blog that I will have the full force of daughter number one down on me.

Why can’t I be more sensible?

Do I have to make the choice between being active and broke or having a bob or two and not being able to get around?

If anyone is doing trials and wants a volunteer put me down for it, I want to get to grips with what’s happening to me is that too much to ask?

I have said all along that things could be worse I could be diabetic and not be able to have my chocolate fix. I have nearly finished the huge bar that my youngest brought back from New York for me, thank you K.

I think it is time I found other things to do with my life instead of sitting here all the time, force myself to turn my computer off, can I reach for the off button. Better finish this first, then perhaps HOUSEWORK.

You see I have now resorted to swearing, I will be talking about ironing next or even heaven forbid cleaning windows. Just off to wash my mouth out with soapy water.

Black Tie Bit of a Do

At the moment I am sat at my computer with a towel round me wondering how soon to get myself glammed up.

I am also eating a jacket potato as it has not long dawned on me that I haven’t had anything to eat today, well perhaps the odd square of chocolate has passed my lips.

My friend and I have tickets for the fire brigades money raising bit of a do, it’s a black tie evening so we thought it would give us the opportunity to get dressed up.

I do like to get into something a bit special once in a while, makes it something out of the ordinary. Let’s hope there will be a bit of dancing, and you never know a nice fireman to dance with, well I can dream can’t I.

So let’s hope that my Mate Parky can resist the temptation to come with me, what’s the chance of me sneaking out without him?

Well that’s it time to find my war paint, and those nicks that hold everything in, I will leave the breathing until I get home so PARTY TIME.

PROSAVIN

Having a very lazy morning, chilling out watching telly in bed the place looking like it has been burgled and you guessed it I get a visitor.

I have been brought a small snippet from a newspaper about a company called OXFORD BIOMEDICA it seems there shares have gone up by 41 per cent to £5.80 on signs its PROSAVIN drug was moving closer to the Market.

The company founded by two Oxford University professors’ hopes to have found a treatment for Parkinson’s. It seems they have successfully completed clinical trials.

Then in the post is a letter from Parkinson’s UK, giving me a breakthrough report about a gene. The gene in question has the tittle LRRK2 and there is a nice 3D computer image of it.

So does this mean at a later date I could walk away from My Mate Parky, I have got used to him around and in fact I am inclined to blame him for everything. But yes given the chance I would ditch him at a moment’s notice.

I don’t want his interference in my life, I would like to do what I want when I want, and dam him I want to be me again, not the result of my medication. I want to live without the fear of being deprived of meds to the extent that I would not function.

But hay how until that happens everything is all Parky’s fault. In the words of my eldest daughter when she was small, I promise you it wasn’t me I didn’t do it, it was him. Whatever it is.