Did I Party?

You bet your life I did, but the dancing was a bit disappointing, I was ready to give it my all, but alas only one night out of the three was I able to Strut my stuff.

I will have to think on a different slant for the future as I sat with my feet tapping and no one wanting to dance.

What’s the matter with every one? Dancing is the best form of exercise you can get, come on wake up to the music.

I had one night when I really went for it, I danced until everyone else on the floor gave up and I am sure no one there knew Parky existed.

Maybe that’s why the next night no one moved, it must be that I am such a good mover that no one wanted to look an idiot dancing at the side of me.

I stayed at the Adelphi Hotel in Liverpool, which must have been a very upmarket in its time. Seems a shame that the bedrooms are so hot that we had to resort to leaving the bedroom window open all night to make it cool enough to sleep.

The lifts or lack of them caused a great talking point, who had ridden up and down several times as they found it difficult to get to the floor they wanted, and those who were late for their meals as they had stood waiting outside the lift getting more and more irate.

I had my usual discussion about getting a sharp knife to cut my food; you have to ask any and every waiter or waitress. That way you give everyone the opportunity to come up trumps, and perhaps run a book on who will manage get you one first.

Tonight I will be going to the local pub to celebrate the end of 2010 and to see in 2011, so now I am going to snuggle down on the settee and watch T.V. and maybe have a cat nap then with a bit of luck I may be able to nip out minus Parky.

Party Time

Well that’s it I am ready to go away for my Twixmas Break. I have enough clothes and shoes for every eventuality; a girl has to think about everything.

We get the coach at 7.40 in the morning. Are you sure that there is such a time?

So no staying up half the night playing poker or any other games online, I have to be up and sorted

Let’s hope the snow allows us to get away, I would hate after all this preparation to have to empty my case back into the wardrobe. In fact I think I would cry, I so want to wear my party clothes for a change.

So happy partying to all family and friends, I will tell you if I manage to escape Parky and DANCE, DANCE, DANCE,

Family and Friends

Thank you to all those family and friends that have taken stick from me, when I am feeling a little below par. For looking out for me when I have been bolshie and insisted that I don’t need help. For caring enough to take my ranting when the frustration of living with Parky gets a little too much to cope with.

I know I am a difficult person at times and that maybe I am better living by myself and doing what takes my fancy at the time.

I may rant and rave but in my heart I know that there is a lot of kindness around me, but as I have spent so many years coping with other people’s problems I can’t seem to let others cope with mine.

My eldest daughter when quite small would never let you do things for her; her answer was ME DO IT MYSELF. So I’m afraid that is what I am trying to do, and I can honestly say I know how frustrating it is to have to stand by and watch when every part of you wants to help.

Please everyone don’t be insulted it’s not you I am having a go at it is Parky. If I take my anger out on you it’s because I can’t take it out on Parky he just gets his own back he controls me and to be absolutely honest that’s what I really hate about him.

Parky Hates Spacebags

Have you noticed those adverts for Space bags, those are the ones that with the air taken out they take up less space.

It’s really clever you are shown a full bag and they open it up and out comes duvets, pillows, cuddly toys, jumpers, and anything else that can have the air removed, but they never show them being filled.

I have just had a fight with a spare duvet, and Parky is no help what so ever!

It took me ages to get it in the bag; I was laid on the floor pinning the duvet to the ground while trying to ease it into the bag. My next fight was with the top trying to get it to match up. That done I got the vacuum sweeper out and attached the hose to the sucky out bit on the bag. After spending quite a time sucking air out I realised I had a hole in the bag.

BUM BUM BUM

Do I now start all over again, not if I can con someone else into doing it, wish I knew the makers I could ask for a demo?

My Rock

It’s the first Christmas without my lovely Dad. He was an incredible person and has left a big hole in the family. He knew everything (so he said) and was never stuck for an opinion on anything. He would have put the world right given half a chance.

His love for my Mother was awe inspiring, they always walked hand in hand, he never liked it if she was away, and his whole life was geared to her. When he died they had been married 63 years, just imagine all that time with one person.

I have been so lucky to have him as my Dad; he has been my rock at times of extreme stress. I don’t think he understood my Parkinson’s or the affect his illness had on me and there were times when I stayed away as I found it hard to cope.

Parky has been less visible since he died, I expect that is because I am not waiting for bad news all the time

We both knew that we had a special bond. It was really nice that on his last good day while we were on our own we were able to tell each other how we felt.

Paying Bills

I have decided that it’s time I sorted out what comes in and what goes out, that’s money I mean. No sign of either a lottery win or a payout on my premium bonds, so that’s it will have to stop spending (Yuck)

First I have sorted my gas and electric out, I did have them with Marks and Spencer’s, but the tariff has gone up and for the sake of M and S vouchers it isn’t worth my while. Besides that our local store is closing down, we are gutted, they say that they are not making a profit. I bet they would if they made it into a food hall.

Next I want to sort out internet and TV, See I am on a role.

I know that I have spent far too much over the last few years; I want to know if Parky is to blame, is it the medication I am on do you think?

I go from not caring to worrying in a matter of minuets. I will stick my head in the sand for a little while longer.

Hey just had an inspiration now I have a drill perhaps I could make things to sell, watch this space.

Another Gadget

I have a new toy and I really really like it, yesterday my younger daughter and family brought my birthday present round and they could not have got me anything better.

It’s a DRILL I have already put a mirror on the wall, repositioned a shelf, and put my family tree up. I have one or two other ideas but I had better see how I get on.

It has a spare battery and all these amazing settings on it, I opted for hammer, well how easy was that?

Why didn’t we do woodwork at school when I was a girl, just think of all the things I could have made?

While my grandchildren were here I gave them their Christmas presents early as I know they will have plenty on the day and I wanted to see if they were alright.

I bought them all the same so I was a bit worried that I had made a mistake. My eldest is 12 the next one 5 and the youngest will be 2 in February. They had a Didicar each, and all three loved them. What a great Nanny I am.

Yellow for the eldest, Blue for my boy and Pink for Littlie, they came in flat pack of course, so with a bit of help from a strong Male friend I had them ready. I had a go on each of them as they were put together, I want one!!!!!!!!!!!!!!!!!!!!!!!

Today I am 63.

Happy Birthday to me.

So I now don’t know if any of the daft things I do are because of my age or because of Parky. My mum has often said that I am going through a funny age, but I am sure she has said this all my life.

I don’t think I look any older but then it’s not wise to spend too much time in front of a mirror. My hair has been white for years so you can say I have aged into it.

My day is planned out and for once I am up and dressed, instead of walking about in my dressing gown until lunch time

I am waiting for daughter and grandchildren to arrive, then out with Mum for lunch.

This evening I am having a Wii party. I think I had better sort out what games I’m good at so that Parky doesn’t come out to play.

Laughter

This lady is great

Click on the link and watch the video,

http://www.caregiverstress.com/2010/07/a-reminder-that-laughter-is-the-best-medicine/

I hope that I can be as amusing as her, while dealing with My Mate Parky.

Who cares if the decorating doesn’t get done, if the room is a mess so long as we can laugh? I am terrible I often see the funny side of life when others look on stony faced, and that is inclined to make me giggle even more.

I would rather watch a comedy than something meaningful and dull. I have a very young taste in entertainment. My Granddaughter has lent me some of her D.V.D’s she’s a treasure, I have watched Shrek so you can see the sort of thing I like. I did once go to the cinema on my own to see Jungle Book, I was asked later if I had enjoyed the film as I had been recognised by my laugh.

101 Dalmatians where Cruela DeVil ends up in gunk absolutely made me laugh until I cried.

I think we should have a News Paper that only tells us the good things that happen, no doom and gloom allowed. The whole aim of it would be to bring joy to all.

Memories

I have just been asked to help my Granddaughter with her homework; she wanted to know what it was like for me when I was her age.

Gosh that took a lot of remembering. We in fact have one thing that unites us and that is the school she now attends was the one I went to, so I told her what it was like when I was there.

I got quite carried away as all those memories came flooding back. I told her about the head master and the teacher that had no control over his class.

One lesson we were asked about Kane and Able the teacher looked at myself and another girl and said we should know the answer. We just looked at each other and it was quite a while before it dawned on us that we both have a twin, as the policy was to separate twins we had forgotten that’s what we had in common

Whenever I tell people that I have a twin the first thing I am asked is are we identical. I can honestly say that no one has ever mixed us up; the fact that he has a beard may have a lot to do with it.

He took a lot of teasing when I was pregnant but unfortunately he did not help with labour pains.

Let me see what was I talking about?????????????

Yes homework, as I am putting it all down on Yahoo messenger I realise that I have not read her last message. Thank you Nanny I have enough now I’m off to bed.

So it’s good night from her and good night from me

I'm in a Pickle

Started out with good intensions, get my Christmas cards done, tidy things away, put some Christmas Decorations up.

What have I done? NOT A LOT.

Last night I started to paint the kitchen, why I have no idea, well I must have thought it was a good idea at the time. One coat covers all!!!!!!!!!!!!!!

I now have a kitchen half finished, a front room with Christmas cards all over and a pile of decorations that want something doing with them (not sure what) My bedroom would be fine if I could only find the bed and the back bedroom has got to be even worse.

The conservatory, well that has to take the first prize as I have been dumping in there for a few weeks, it ends up as a cloths drying room at this time of year.

Parky has decided enough is enough and brought me to a halt, I know I just won’t listen to advice be it good or bad.

So if anyone wants to try me with any good ideas I will do my very best and listen, honest.

Wii perfect

It looks like using my Wii for exercise is a good idea, clever me for doing the  right thing for a change. So while I’m a penguin trying to catch fish, or a tightrope walker I am not being lazy and skipping house work, I am trying to get to grips with my balance!

So if anyone wants any games testing, Parky and I would be only too pleased.

Not the ones where you have to shake the Wii remote as fast as you can, I’m rubbish at that. I can’t do the steps to music, by the time I get the message from my head down to my feet; I have missed the steps anyway.

Dancing Queen

I am going away for what is called a Twixmas break. That means I go between Christmas and New Year, I am really looking forward to it as its time I reverted to the party animal that is locked away inside of me.

I am going to put on my glad rags, and who knows maybe I will dance the night away. I will try to be good and take my pills on time so that Parky will forget to stop my enjoyment.

I may have a few glasses of wine and indulge my desire for chocolate (bet you wondered what was coming)

But don’t tell anyone that the posh frocks I am taking with me are my charity shop bargains, in fact I have been to a Christmas dinner today and I have one on now, a little number in red.

My brother's ex wife is going with me, we have always been like sisters, so look out Twixmas, you haven’t seen anything yet.

I would tell you where we are going, but I can make an idiot of myself without the help of others!

Messy Me

My third bedroom is my office, and this is where I spend a lot of my time. It is always a bit messy and failing that very messy.

There are usually bits of paper and ends of sweet packets. I can see a couple of pegs, a cuddly toy and who knows there may even be a partridge in a pair tree lurking about.

Hard as I try I can never seem to get clear, and it doesn’t help that when I try to tidy the rest of my bungalow I end up putting bits I don’t know what to do with in here.

My late husband used to say that when I tidied up a pile of things I just made it into several piles, and over the years I seem to have perfected that.

I try to kid myself that a lot of things are not mine, like mums paperwork or my grandchildren’s toys. But a lot of it is mine and it wants getting rid of.

I don’t seem to be able to just throw it out; I can recycle, but not throw.

Don’t we all have those pots that have in them little bits that we can’t get rid of because you know that when you do you will come across the thing it belongs to.

Merging Mail

My computer enables me to do so many things, at the moment I am in the process of making my Christmas cards, and with the help of mail merge I can do the labels for the addresses.

Every year it takes me a while to get mail merge to work or should I say for me to remember how mail merge works. I have had quite a few Parky moments with that.

I have resorted to putting my greetings on labels so that I don’t have to write anything at all, my writing is not as bad as it used to be when I had a spider for a pen. But the computer is so much easier and this way I can say "I FOOLED YOU PARKY".

So I will now battle my way through the minefield of mail merge and get my Christmas cards completed.

I was right yesterday, the parcel I opened was a birthday present, so I will just say a thank you to my Daughter who is also my spell check, my P.R. and all round organiser.   

My Daughter Made me Cry

I have opened a package and had a lovely surprise, in it is a book called Me and My Mate Parky Volume 1.

It has my Skydive picture on the front, and on the first page is a foreward from my daughter, saying how proud of me she and her husband are.

Then it is full of my Blogs up to Nippy.

When you go to the last page there is a photo of my Dad and me, with the words keep on blogging, I of course cried.

Bum - just had a thought I wonder if this is a birthday pressie I have opened too soon.

On the 19^th of this month I will reach the grand age of 63, so have I spoiled a surprise.

I will tell her that it wasn’t me who opened it but Parky, he definitely wanted to know what was in the package. Do you think I can manage to get away with that?????????????????   

Train for York

It looks like my trip to York is on tomorrow; I had better get a bit more organised than I have been. I have the gifts wrapped and the bag hanging on the front door. I have my lift to the station booked, better put my pills with them now while I think about it. I would be in a heck of a fix if I forgot them.

 Now that didn’t take long.

I went into the kitchen to get the pills, pots still on the side so filled the dishwasher (also known as the magic cupboard). Looked for something to put a drink in to take pills with on the go, no luck - will have to get something on way to station.

Came back to the computer and saw my train tickets so thought I had better put them with pills, do you get the drift? And I really have no idea what to wear in the morning.

I bet the trains will be cold so something warm to travel in, then when we hit the shops it will be red hot so that you have to lug your coat with you.

When I need my purse I have the added bonus of Parky who finds it great to make me look stupid. While I am trying to get either my money or my credit card out he just stops my fingers working. I have decided to go for a small rucksack  and hope that I won’t look as if I am on safari, well it is lepard pattern!

Fingers Crossed

Plans seem to be in the balance all around. It’s amazing how we come to a standstill as soon as we get snow.

I have three lady friends who I met on a singles holiday; it must have been a meeting of like minds as we have stayed in contact for what must be eight years.

Each year before Christmas we meet up to exchange small gifts and have chatter, shop a bit and eat. As we are spread around England we have opted for York.

York is an excellent place to meet up; it’s a lovely City and has a good rail service. We arrive within 30 minutes of each other, and the same when it comes to departing.

So Monday is the day, very happy to see my friends, but will the snow stop it happening, trying not to get in a tizz, as that’s when Parky will latch onto head.

My Passion

What about an afternoon in good company and your favourite thing to eat, that’s what happened at our last Parkinson’s meeting, Our group is a very friendly mix of people who enjoy each other’s company the last Friday in the month.

We either have a speaker or maybe a quiz, but this time we had a lady who makes Chocolates for a living. Her passion for my favourite subject, and the samples she brought with her, made for a very enjoyable afternoon.

[MUM - me here   hee hee - is it worth saying that maybe the 'happy' effect of chocolate keeps the stress away - so therefore it should be on prescription for all Parkinson's patients?!?!]

My daughter keeps an eye on my blogging as I am terrible at spelling. (think I am dyslexic)
I found this comment above and thought you would like to see how in tune she is with me. I second the above statement.

Who knows I may even let her add an odd fact now and then!!!!!!!!!!!

Parky Caused by Crop Spraying ????????????

Where I used to live, the field at the back of me was sprayed using a small aircraft, as the plane came over it released the spray both ways so in fact we got a double whammy.

I wonder what was used, and if the quantities were correct?

To make matters worse the leaflets which were sent round telling us to stay indoors and close the windows were delivered after the event.

The young man delivering them had protective clothing on, so that says a lot.

Would it be possible to test people with Parkinson’s to see if they have a build up of any of the chemicals, or am I barking up the wrong tree?

I am not technical enough to understand what this would take but surely it is worth looking at.  I don’t for a moment thinks this would help me, but it may make a difference to someone in the future. I would even volunteer myself for trials how’s that.

But then again it is probably too late as this happened over 20 years ago, but wouldn’t it be interesting?

Do It Myself

Cutting my food up is a bit of a challenge to say the least.
So that is why when eating out I ask for a steak knife no matter what I order.
You would think that a simple request, not on your life.

First I have to reassure the waitress that I’m not a raving loony, (hard I know).
Then of course you get that look that says. What’s wrong with my food?

I was on holiday in Bavaria not long after I was first diagnosed. The waitress was a little bit frosty with us all and was getting a little annoyed at my request for a sharp knife, she had resorted to just throwing it onto the table. After one of these incidents I took her to one side and explained the reason, she was a transformed character after that, all the other guests were astounded and wondered what had brought about such a change of attitude.

I have been offered knives from the kitchen, and my all time hate - WE CAN CUT IT UP FOR YOU

It absolutely infuriates me, I can cut my own food up thank you, and all I need is a SHARP KNIFE PLEASEEEEEEEEEEEEEEEEEEE

So don't be afraid to stand your corner, let people know that you can't cope, I know i'm the worst person to be giving advice.

Nippy

This cold weather is ideal for Parky he likes to use it to slow me down. He is looking for the lead boots and the head lock as we speak. I wonder if I was whisked away to some tropical location would I leave him behind?

I think this is an open invitation for a knight in shining armour to gallop up in his mustang (any thing really would do) and head for the airport. A private plane so that Parky can’t be a nuisance. At this wonderful location I would have the use of a masseur who would banish Parky for days at a time

Well what? We can all have our dreams, without them we are stuffed.

Time to stop dreaming and get some exercise,  as the snow has set in I may have to test my fish catching skills, so get that Wii set up.

All Shakers

I have just realised that without my mate Parky there are a lot of things I would not have done. No one would have sponsored me to do a sky dive, which for a while made me quite famous locally as I was even featured on the local television news.

I now belong to the local Parkinson support group, and have met some extraordinary and wonderful people. I can’t remember who said it to me, but I was told that whenever they visited a Parkinson group they always found happy people.

We tend to joke our way through difficulty. When we had a speaker at one of our meetings who had not done it many times before, she commented that she was a bag of nerves; I said you will fit in well here we all shake.

Wii Wii

This morning I have been dressed as a Penguin while standing on an iceberg catching fish, broke my record, YESssss

I have also used my bum to count numbers, and crossed between two buildings on a tight rope. Then I have done an Eddy the Eagle act on a Ski jump.  I have done this without leaving my front room.

I am getting back into my exercise on the Wii, much better than going out in the cold, and jogging.

Parky and I can shake without the help of this weather; in fact we would be better off all together if we were transported to the south of France, or maybe Italy I am sure Parky likes pasta and pizza.

But until that is possible, we will stick to the Wii, I may get us to go on the Sports resort tomorrow then we can do things like archery and golf.

Parkinson Nurse

Oh why Oh why did my wonderful Parkinson nurse have to retire, I know she deserved to, but I do miss her. She was that light at the end of the tunnel - a person who I knew instantly that I trusted. She also had a great deal of common sense as well, being up to date when it came to helping you with your medication.

Lincolnshire is in desperate need of people like her, I am sure that the Neurologists would welcome the help, and it would end up being quite cost effective

Oh how short sighted the powers that be are, don’t they realise that a lot of us were kept out of hospital because of her excellent care.

Confession,

I messed up a bit with my requip. I take 20mg of slow release in a morning. The dose is made up of 2x8mg plus 1x4mg.

What I do is put the tablets into those boxes with compartments so I can take them out with me, that’s a laugh.

This morning I sat down to fill the boxes and found I was low on the 4mg, I searched high and low, as the two strengths of Requip come together I was a bit perturbed.  

The girls at the chemist are brilliant; they pop my pills for me into bottles making it much easier for me.

After wracking that brain of mine for a long time I realised what I must have done. I must have done 2x4mg plus Ix8

That means I was getting16 mg instead of 20mg. No wonder Parky likes being around me he knows I will mess up from time to time and let him in.

So hopefully I am now back on track

Free Bingo Piffle

I am sure that many of you have heard about the compulsive behaviour side effect of Parkinson's drugs - so, I thought that I would indulge Parky’s desire to gamble by taking up the offer of free bingo as offered by email.

What a load of ………………. (Put your own word in)

The link sent me to a page that would not let me get any cards, then after I had clicked on anything and everything, I sent a message by the chat bit to find out what to do.

The result of this was, I found others wanting the same thing, so I was relieved that I was not the only one who was, shall I say, a bit THICK.

What I should have done was get a code at some named time of the day ready to play at a different time, in a different room  - are you with me? I lost the thread long ago!

I think even Parky had given up with the idea of playing, that’s maybe the strategy I should keep - if I can’t get on to the sites’, Parky can’t play!

Why send out such misleading emails?

It has definitely been a "MY BRAIN HURTS" moment.

And another thing.....don't you also get fed up with sites that send you from one comparison site to another?!

Brain Donation

I have left my brain to Parkinson research.
Any one who follows my blog will wonder if there is much to leave, I of course know there isn't.
I think I left it somewhere, was it at the supermarket when I came home with lots of nice goodies but not the essentials that were on the list on the kitchen table.
Maybe I left it with the shopping bags in the hall cupboard, which I needed at the supermarket.
Perhaps I left it at my Mum's when I came back without the paper work I said I would look at for her.
I would not be surprised if there is a big chunk somewhere in among my medication.
Should I ask Parky to help me look???????????

Feeling Yuck!

When first diagnosed, the quandry was should I go on medication or not, so I asked my neurologist "if it was you what would you do?"

He said he would definitely take medication and that, of course was good enough for me. But for the next year I often wondered if that was a good idea.

The side effect was feeling sick; I look back and wonder how I managed. Every time I had to up my dose or have it changed, then off I went again.

I was still working as a home care assistant, which meant driving to my different clients.

That year I never went anywhere without a packet of ginger biscuits on the passenger seat, and a bottle of dry ginger ale - apparently the ginger stops you from feeling sick.

It seems that the part of the brain that wants the dopamine is next to the part that makes you feel sick; I think that was how it was explained to me. It took a while before I found out that there is in fact one drug that can take away that feeling with the grand name of Domperidon. Such a glorious name, after feeling sick for so long it was pure pleasure to be able go out for a meal and not just order the smallest thing on the menu with the hope I could eat at least a little.

Sleepover

This evening I have the company of my two youngest grandchildren, they have come for a sleep over. I must be less stressed these days, so that makes me a less demanding nanny. My five year old grandson and I played on the Wii. (Yes that’s right the annoying one who gets good scores when bowling).

He is equally annoying when doing other games as he decides just at the point where you start enjoying yourself because you now know what to do, that he doesn’t like that one and wants to play on something entirely different.

The moaning grandson takes over from my very delightful one I thought I had brought home with me. I have not as yet thrown myself on the floor in a paddy as in the advert, but I do put on a very winey voice and tell him I can’t understand what he is saying. I usually get a sly grin, and just occasionally an out and out laugh.

He is an absolute treasure with his little sister, and she in turn loves him to bits. He rushes around making strange noises with her in fits of laughter. If I could just find where his batteries are I could turn the switch to off from time to time.

But no matter how he tries to convince me that he is not sleepy and that his mum lets him stay up, I know he will be sound asleep within minutes, and when I checked him not long ago he was laid on top of the bed facing the wrong way, head down the bed feet on the pillow, correction I have just looked they are in fact under the pillow.

There older sister who is at her friends tonight always used to come in my bed with me. She does a lot of contortions round the bed but I think it was the morning I woke up to find a hand in my face along with a foot, that I decided not any more. It’s just on the odd occasion that I end up saying “oh go on then go and get into my bed”

To be honest she probably has to put up with worse from me. Somehow during the night I manage to roll onto my back and stay there, I must just lock in one position, that means I snore, (Shush don’t tell anyone) and by the time I want to get out of bed I am l so stiff I end up rolling out.

Freedom

I have always enjoyed driving, I think it is because of the freedom and being a person who likes to get up and go, preferably yesterday a car is like an extension of me.

I had a minivan when I first passed my test, it was a rather boring grey, so I think I am right in saying I conned my brother into painting it for me. This he did with a roller in two shades of blue, and very nice it looked too. I wonder what sort of paint he used I have this feeling it was gloss but it was way back in the sixties, since then with the help of Parky it is just a vague memory.

I travelled all over in it,

When I got married we used it to go away on honeymoon, although we thought we had hidden it away during the wedding, of course it was found and decorated. I remember there were pennies in the hubcaps that only made a noise when we went slowly, so had some very puzzled looks when we stopped at traffic lights.

Then when my eldest daughter arrived I had a large Marmot pram which when travelling from London to Skegness, I would take the wheels off, put the lot in the back and she would sleep most of the way.

I have driven various cars since but your first is the best.

So you may understand how devastated I was when I went to the Doctors one day and had a very traumatic experience. (Dr. didn’t understand Parkinson’s) I ended up sat in my car in the car park sobbing. I really wasn’t sure about driving home. I waited for perhaps an hour, and being a bit too independent for my own good I drove home.

I just lost my confidence; I convinced myself that I could manage perfectly well without a car there were buses and trains, so I even gave my car to my dad, with the understanding that I would use it if it was going spare.

It took me a couple of years before I got back to driving and with the encouragement of a very understanding  Doctor (who incidentally knew a great deal about Parkinson’s) I am now enjoying once again the freedom that a car can bring.

I do have a few days now and then when I choose not to drive. If I think Parky has addled my brain or stiffened my limbs too much.

But I don’t think I will ever forget that feeling of sheer panic I had as I sat in the doctor’s car park.

Looking Back

I have started to look back over my past blogs; it seems strange that I have managed to put into words some of the things that have plagued me for so long.

I have had a few Eureka moments and here and there a tear, but most of all I am finding it so therapeutic.

I think the reason I am doing this is to make sure that I don’t get complacent, that’s when I tend to forget my pills and that allows Parky to sneak past my guard.

Why have I got him?????????????

What have I done to deserve him???????????

Have I been that damn terrible???????????????????

I know there is no answer, and I know that I could have something much worse, I have seen firsthand how cancer strikes, and only today visited a friend who has had a stroke.

My Uncle was a Diabetic, who had to watch everything he ate, (no pigging out on chocolate for him.)He lost his leg because of it, but thankfully he never lost his sense of humour.

So if I can cope with Parky the way he coped with Diabetes. Perhaps I will be remembered in the same way he is. Full of fun and always laughing.

Parky belongs to me

Why when you think things are going ok do you then get a kick up the bum, Parky seemed to be sitting in a corner doing nothing and I was extremely contented with that.

Then on comes  a family discussion, or should I say a bit of an interactive free for all so my mate Parky thinks it’s time to get a look in.

I know I should ignore both Parky and family discussions but it’s quite hard. I seem to be the person who is first on the list to sort everything out.

Do you think it is possible for Parky to move out and live with one of my relations for a while, as I type this I know that it is not a possibility Parky is mine and mine alone?

Chocolate

That’s my favourite subject? I think I must dream in chocolate vision, if I have any in the house I can’t rest until I have consumed it all.

Usually I put the bar in the fridge, and if I can resist the temptation I leave it there until it is hard. Then comes the much awaited moment when I get the bar out and SMASH it on the kitchen work surface.

A couple of Christmases ago my daughter bought me a lindt Chocolate SANTA I was so naughty, first I put him in the fridge, before smashing his head in.

The most unforgivable came next. I hid my Santa from my children and grandchildren, and then when I was on my own I slowly finished it off. The memory of it is making me drool.

That is Parky’s fault I have only started drooling since he came around, I get myself something delicious  to eat and before I get it to my mouth, yuck I feel like someone’s pet dog who’s after a tit bit.

Escaping Parky

Who would have thought I could manage to go away and forget about Parky, he has been very silent for him, I think I spotted him from time to time, but you know what I just ignored him

My friend, plus the alarm on my phone made it impossible to forget my medication, so for once I was a good girl.

Did I say GOOD GIRL, I didn’t exactly take my pills with wine but I did take them at nearly the same time. That sort of makes it alright don’t you think?????????????

We shopped a bit walked rather a lot and watched the street artists. We had some nice meals hence the wine.

So now I am back in my den and looking for ideas on what to write. Now, let me see - what have I filed the list under.......

Stress

I wonder if Parky came to me as a result of the stresses I have had in my life.

I think the worst was first watching my second husband try to fight Prostate Cancer, several times he thought he had it beat and in the end knowing that no matter how much he was fighting to stay with me it wasn’t going to happen.

Then earlier this year watching my Dad as he succumbed to cancer also, there is a haunting look to them that stays with you for a long time.

I found it so difficult to cope with the very demanding situation. I think as the daughter it was a foregone conclusion that I would sort everything out, and to be fair I probably should have made it much clearer that Parky was making my life difficult.

Being so close to my Dad made it even more difficult, especially when he said he wished he had a gun so he could shoot himself, and I can honestly say that if I had one I would have given it to him.

We had his last good day together, I made him pancakes, he ate so many I thought I wasn't going to get one. I gave him a telling off for being so miserable, and we both expressed our love for each other.

Getting it on time

Parky steps in and takes over and reduces me to a slurring stiff necked robot' when for some reason or another I forget my medication. I feel as if I need a good dose of WD 40, or in other words, must get my Dopamine fix.

I am also very conscious of the lack of knowledge even professionals have on this subject, there are horror stories of medication not being administered at the right times when Parkinson patients have to go into hospital.

I now have an absolute fear that if I am in an accident and end up in hospital that I won’t get my medication. It has started to play on my mind to the extent that I am making people around me promise that they will fight my corner if I am unable to do it myself.

Perhaps it would make sense to get a tattoo, not sure where I would have it, or indeed what I would have. GIVE ME MY PILLS ON TIME written right across my bum, may be taking thing a bit far.
I think I am having second thoughts on the subject as I don't do pain.

Revamp

Because of Parky I find it difficult to manage all those important things we girls do.

First was the torturous part, I had my legs waxed and that is the extent of my waxing, as I am not the bravest of people.

I now have nice pearly nails, so sorry everyone no chance of me doing anything that will spoil them, can’t possibly do pots or clean.

Finally the hair, I am pleased to say I look stunning. Well not bad for a granny.

I think this is a time to thank Parky as without him I would never have taken the time out to be pampered.

While I had my nails done I was bragging, like you do about this Blog, and even surprise surprise had a print out of the article I have done for ParkinsonDotOrg.

My manicurist told me a relation of hers had just been diagnosed with Parkinson’s and was devastated, we all know that feeling. So I sent her off with my printout, I just hope it may help a little. At least it put an end to my bragging.

Quick update on the Wii, went to look after my Grandchildren and all I can say is that I am pleased the youngest can't bowl as the other two thrashed me.

We've been .org-ed

I want to say a big thank you to Cathy Whitlock who is the Web Editor at the National Parkinson Foundation.

She has posted my story on their site.

http://www.parkinson.org/Personal-Stories/Blogging-My-Way-Through-Parkinsons

It’s good to see how other people cope, so Parky - I shall be getting more tips from others on this site, watch yourself.

My Wii

It’s an amazing gadget; I don’t use it for keep fit which would be a more sensible thing to do, but for playing with my grand children.

I have three, the youngest aged nearly two, then five and my very grown up twelve year old who constantly reminds me to take my tablets.

My very annoying grandson (the five year old) has developed his own style of ten pin bowling. He is in such a rush that he walks away before the pins have gone down, after giving what looks like a nonchalant throw and ends up getting a strike or failing that a spare. Doesn't that phrase NICE SPARE start to annoy.

There are several games that I find hard to do so I make an excuse and talk them into the ones I can do. You would think that as a person who has Parkinson’s I would be red hot at shaking the remote. Wrong, must have a different action.

One of the most unexpected results was when I got 90 percent singing to a Beatles number, I am aware that it was not the quality of my voice but just the fact that I was the only one who knew all the words to Yellow Submarine.

I think after reading this through I may go and have a play, I might even see if I can do any of the keep fit Items.

Watch this space……………………..

Who forgets Parky or Me?

I have just sat down to write this amazing blog, and if I remember what it’s about I will tell you. Do you think it is me or Parky who has forgotten? I am sure it’s his fault.

I have wanted to go to U3A ( University third age)meetings and have written them in my diary and arranged to meet someone there, where am I? Pottering around at home, because once again I have forgotten.

I am constantly asked did you? And before the words are out most people realise from the blank look on my face that the answer will be NO.
I have a list of topics to write about and somewhere on this computer is that list, now what have I filed it under???????????

I am amazed once again at who is reading my Blogs, today I have had the unexpected delight of seeing 31 people from South Korea on my list. Thank you I just hope you can understand my ramblings.

Parky was in control damn him.

I have waited in all day for a big supermarket chain to fetch a television in for repair, I bought it in October and it doesn’t work.

It seems in this age of technology they were unable to give me any time of day at all, no phone calls no texts no email, and no idea who the people were that would be fetching it.

So for me - no visiting my elderly mum, no posting parcels that I have ready to go. No shower in case I got caught out and NO SHOW FROM THEM.

When I rang it was carefully explained to me that if they were held up in traffic they might be later than five and to give them till six.

I was due out, so at six, now quite smelly and defiantely very stiff I rang the company again. We are very sorry we will reschedule it,no it would not be possible to have it picked up tomorrow the company that does that needs two days notice.

So now not only am I very stiff but I am shaking too, so I very politely explained to the young man on the end of the phone that I was extremely angry and was trying not to take it out on him so he had better fetch someone who could resolve this for me.

Parky must have had a field day as I am still stiff and the useless T.V. is still in the hall. Is this the start of a saga I ask myself.

Amazing

This is amazing; I can’t believe how many people have viewed my blog, with this inspiration I have to carry on.

I blame my daughter as she has been working as my P.A. I think she is hoping that I become so famous that I will be spotted in shops on one of my spending sprees thus helping to save a bit of her inheritance (absolutely no chance).

I blame Parky for getting me to shop, before he came along I was much wiser when spending, in fact I could be a bit of a miser.

Now I just think to hell with it what’s money for anyway, and hope the lotto or a few premium bonds will provide for my old age. I don’t for a minute think I will be able to sell my body, and failing that I will threaten to live with my children, should be alright for a holiday or two while they try to escape my clutches.

So I am asking myself if the medication that I am on is the cause of my empty bank account, and if so can the drug company help me by slipping me a few quid so that I can carry on spending. That’s reasonable don’t you think?

I have donated my brain to Parkinson’s research; mind you I am not intending that they take it for a long time. I want it to be empty of my blogs and I think that could take a while as they seem to be queuing up to escape.

I must organise myself, so that my bright ideas don’t disappear and only rubbish is left, will have to get a pen and paper by my bed, I seem to be thinking BLOG most of the time.

My Dad

For all my life my dad has been my hero, and today it would have been his ninety second birthday, but unfortunately this year I will not be able to celebrate with him as he died in March.

I know he would have been so proud of what I am doing, so thank you Dad for making me the person I am.

He joined the army as soon as the war was declared and served all the way through. I like to think a bit of his fighting spirit is with me as I come to terms with Parky.

Support Group

When it was first mentioned to me that a group of people in Skegness had started a Parkinson’s support group, my initial reaction was, well so what. I did not want to get involved.

After a lot of persuasion, I agreed to go to the meeting you could say I was dragged there not quite screaming and shouting but with bad grace.

I told my friend if things didn’t go well I would be going to the loo, and there would be no chance of me returning, I would just sneak out.

People from the Louth group had come over to show our local group how to begin. Well to be honest everyone I met was very friendly, so I couldn’t use that as an excuse.

As it was a new thing and not many people knew each other we introduced ourselves, when my turn came I introduced myself, and then had to say the words that I dreaded I HAVE PARKINSON’S.

 

Sky Dive

I know that I am bragging just a little bit when I say that last year I did a sky dive to raise money for Parkinson’s. I had seen it mentioned in the Parkinson Magazine and thought that is for me. With help from my local Parkinson group I set about raising the money to pay for the sky dive itself and the extra for our local group.

There were some very generous people about and I managed to raise about £1500, I think most people thought I was completely barmy so they dug deep into their pockets.

First I had to get the consent of my G.P. He pointed out to me that at my age if I broke any bones they would take longer to mend, and in extreme cases people had died while doing a sky dive. I told him I still wanted to do it, he said there was no reason why I couldn’t and to call back in a few days for the certificate which then cost me £18 but that did include VAT.

The day of the sky dive was amazing from start to finish, clear blue skies so you could see forever. Family and friends came to watch and it was the oldest and the youngest that wanted to join me, my Dad who was 90 and my Grandson of five. Neither had any chance because of age, so no one stole my thunder.

I had this briefing where I signed my life away, what to do and what not to do I do. I remember being told that if I felt sick I was to tell the guy I was tethered to, I think that was so that he could get out of the way.

When I looked out of the plane door for a fleeting moment I thought ssssssssh------------------- or something like that, but once I was out oh how good it was to falling through the skies, I have been asked if I would do it and the answer must be yes, except for one thing there must be so many other things that I could do.

One of the things I would love to do is walk the Great Wall of China; I know I would have to get very fit to manage it. So here goes I will try and aim for next year 2011.

I think that means less of what I am doing now sitting at my computer eating chocolate.

Thanks for Reading

Here am I sat at my computer typing my thoughts on Parky, and feeling nicely cocooned in my own little space. So it’s truly amazing that this Blog is being read all around the world.

I may be exaggerating just a bit, many thanks to all who take the time to read my ramblings.

The best thing that has happened to me is being able to use my computer; it has given me the tools to make my life better. I have slowly over the last eight years found more and more things that I can use it for.

I make cards for family and friends, I have even done mail merge for my Christmas card envelopes. Then there is lots of ways to play around with pictures, and of course my family tree.

By far the biggest asset is that I can type instead of write, as my writing had got to the stage that it was so small that no one had any idea what I had written.

One of the first signs of Parkinson’s is that your writing gets smaller, I never thought about this before but perhaps these people who can write for example the Lord’s prayer on the back of a postage stamp have Parkinson’s.

Double Act

I have come to the conclusion that Parky is as much of a problem to those around me as he is to me, so maybe in writing this I can get a better view of Parky’s relationship with them.

I live with him twenty four seven, I have no say in that, but of course any one I meet has to realise that  Parky and me are a double act.

Gosh, a double act, can’t be Fred and Ginger, nor even Morecambe and Wise. I think we will have to be on a par with the two Ronnie’s (4 candles). Sorry anyone reading this out of the U.K. it’s an in joke.

For a lot of people the name Parkinson’s disease conjures up a dreadful picture.  I think mostly because of the DISEASE bit, who wants anything to do with that.

We are all a bit wary of medical problems, so the thought of a family member or a friend having something that is a disease is a bit scary.

What do you say to them?

“You poor thing” doesn’t help a bit.

I am extremely lucky that most people on meeting me have no idea that Parky is lurking in the background. When explaining that due to Parkinson’s there are things I have difficulty with, the usual comment is, but of course you are in the early stages, NO but they have certainly improved the medication.

Whoops alarm on phone has gone off again, must be pill popping time. I looked on a dating site to find that one of the questions was do you do drugs, YOUR DARN COCO RIGHT I DO, but how do I explain mine.

Dancing

I have always loved dancing I don’t care what sort when the music starts I need to dance. When I was in my teens I used to go to the local village halls and dance all night hardly sitting down at all.

Then I got married to husband no1, his idea of dancing was wait till the bar shut and stand on the dance floor waving your arms around like a windmill needless  to say I would find someone else to dance with and pretend I didn’t know him.

Then there was husband no2. He said that men only danced so they could fondle a woman, but I am sure it was more that he couldn’t and didn’t want to show himself up. He was very jealous so to look around for another male to dance with was a complete no no. The only way I got to dance was if my brother was around and we would have a jive.

I go through fazes when I go line dancing and that’s great until the dances get a bit too complicated. Getting the signals going round my body is an absolute nightmare, the heavy boots provided by Parky makes me want to cry.

I have three lady friends that I go on holiday with, just for fun I booked us in at Butlins for a 60’s weekend, we had a great time. But unfortunately the thing I remember most was going to dance and Parky had my feet, I think he also had my legs, so I was handbag lady I had a good time, but I would have killed just to be able to dance like I did all those years ago in the local village halls.

Hi I have just been told that I am on the Parkinson's twitter page. WOW

Medication

Good morning, I have taken my handful of pills, so maybe today I can escape from Parky. I have my mobile set as an alarm to remind myself to take my pills, which is well and good if I get the first on time, otherwise I have to remember to add a bit of time to make up for it. I think I know what I am talking about.

You would think that as I have been on medication for about eight years that I would be on automatic pilot when it came to remembering to have it with me when I go anywhere. No, I am constantly having to rush home or at least go to people homes where I have a few stashed.

After starting to write this blog this morning, and being super confident that I was in control of ParkyI. It has now hit me that I feel a bit strange, sort of not in control of my limbs so just to be on the safe side I thought I had better see how many pills I have left for today.

Bum, Bum, Bum I have done it again, it’s now two and sat looking at me is the twelve o clock one, I CAN’T BELIEVE IT

Shopping

Well I have seen Parky’s Neurologist, and I was right he is a very nice man, I took my daughter with me or should I say she took Parky and me, I let her drive, she likes to look after me. She told him about this blog, so that is all I will say about him.

We spent a very pleasant day and other than car park and food I didn’t spend anything. My addiction to shopping must have been on hold. (It’s not me it’s Parky!!!!!!!!!)

I have great difficulty resisting bargain rails, in fact it is a well known among my family and friends that if I am lost in a store  they just head for the sale racks and there I am, nothing is as satisfying as finding that article of clothing that has been reduced and then reduced and maybe reduced again. It does of course help if it is in my size.  

But one of the best things is to find a good quality garment with a good named label in it in a charity shop. I can then convince myself that I am helping a good cause, and if the item is not right I will be able to re donate it.

On an outing with my brother I even spotted a three piece suite that would look great in his room, which it did, but we had to rush home and sell the one he had. He is not sure if he wants to go shopping with me again.

Neurologist

Today I have an appointment with my Neurologist, Well I think it is Parky’s not mine. If Parky didn’t exist I would not be getting up early and traipsing 30 miles to be told everything is as before and to see him in 9 months time.

I am not complaining as Parky’s Neurologist is a very nice man, and as I go to see him it leaves me in no doubt that I have this condition called Parkinson’s disease.

Why it was ever called a disease I don’t know, do you catch it? Is it in the air? Does it give you spots? Can you pass it on? I have never found any of these things to be true, so don’t worry all my family and friends  - Parky’s mine.

That’s enough for now better get myself washed and spruced up, can’t let anyone think that Parky is getting the better of me and turning me into a slob.

Gadgets

Since Parky arrived I have become a gadget freak. My excuse of course is that Parky won’t let me do what I want to, but I must confess that on several occasions with him in the back ground as an excuse purchases have been made.

Small things like potato peelers, which it has been pointed out to me I use in a totally different way to other people; I move the potato and hold the peeler steady. I suppose it just goes to show how we start adapting without knowing.

The magic bullet, the nicer dicer, a guillotine like tool for chopping veg and that’s just in the kitchen

I have also got a steam press for my ironing it’s a great help, that was one in the eye for Parky he thought he had stopped me ironing by making the iron seem as heavy as a cannonball.

I now have a battery screw driver and am like a child wandering about looking to see what I can demolish.

I am sure if I looked around I would surprise even me just how many gadgets I have. The truth is that they are my way of staying independent; I will fight tooth and nail to be in charge of my life.

My Mate Parky had better get ready  for a fight as I don’t intend to let him take me over

Living with Parkinson's Disease

I am not sure when Parky made me aware of his presence, it was as if he had been around for a long time but kept very quiet.

He started to cramp my style, stopped me in my tracks and made a general nuisance of himself. I would be minding my own business doing some mundane job and there he was a real pain in the bum.

What does he do? Well if I am trying to open a bag he holds my fingers, if I am trying to dance he thinks it’s fun to make my shoes so heavy that I look such an idiot and also feel like one. He holds my neck in a vice like grip so that I feel like a robot, probably look and sound like one as well.

Sometimes I think I have left him behind me but I can’t fool him, he just lets me know that he is happy to stay with me forever.

I suppose in some ways I have got used to having him around, I like to think I can get one over him on occasions. I decorated the hall and just nipped off to bed for a nap when he called.

So what will life be like with a Mate like Parky??????????????????????????????