Parkinson’s Chat Site

THIS IS AN UPDATE ON PARKINSON'S CHAT SITE
the site had problems and had to change there link

http://login.meetcheap.com/conference,24442642

still the same password pa

Merry Christmas

I think it is about time I thanked all you nice people who have read my blog on and off for the last year.

I started this to see if it would help me come to terms with my mate Parky. Well you know what even after days when I have been as stiff as a board and have ended up going to bed because I feel like S---. I still find it hard to accept I have Parkinson’s.

Today has been a day when I haven’t been on top form. I invited my friend round for tea as I knew it would make me sort myself out, as I was finishing off our meal I said to her “I think I have Parkinson’s”. Her reply was “Never mind tomorrow you won’t”.

She knows me to well; I have been doing too much. Too many late nights, too much dancing and if I am honest to many glasses of wine.

When I am not so stiff I shall go back to the Me who can’t for any reason admit that this Parkinson thing is something to do with me.

But boy have I enjoyed myself, with a couple of practice Christmases and a birthday under my belt, oh and a New Year celebration, “thank you Mussel for the Happy New Year wish”. I am now ready for the real thing, so bring it on.

Here’s to my friends and family and all you nice people who through your comments have helped me through the year.

It has been a year to remember, especially my trip to China. For as long as I have a memory that works the sights and the people will be with me constantly. Our guide told us that in china we were the oddities and how right he was.  I think we all enjoyed the youngsters who sidled up to us so that they could have their photos taken with us. I know I did and I am also sure that there are quite a few photo albums that I have wrecked.

So Merry Christmas and a very Happy New Year, I hope Santa brings you all you need and that 2012  will be the year that Parky fades into the back ground for all my fellow Parky People.

My Brother

I have had a good time while away, but have tried to hide quite a few times of wearing off.  To say its BBBBBBBBBBBBB annoying is an understatement.

I think Parky has been around more this holiday than he has been for a while, I did dance but to be truthful I wasn’t always one of the first on the floor and didn’t always stay till the last.

Maybe it’s my age as from Monday me and my big brother will be 64, isn’t that a song. I never thought about getting older when I sang along to that tune, I have just looked it up and it was 1967.

I would have been a little slip of a thing seven stone seven dripping wet, no husband, no children and definitely no Parky.

Looking back was there something that I worked with, something I lived near, something I ate that led me to my mate. I have wondered if all people with Parkinson’s could have a test to see if our bodies have been contaminated if we have more of or indeed less of elements in our bodies than other people have.

Why me and not my twin, not that I would wish this on him. How would he look after me when I’m old and grey, (Bum just looked in the mirror and I am old and grey) by the way that’s something I haven’t told him yet, it’s to be a surprise. He has another year to go before he retires from lorry driving.

It’s rather strange that when we celebrated our 60^th birthdays together he still had five years to go before he could retire and I was already retired. (Parky sorted that out).

I have a friend staying and had to use the 111 service as she wasn’t very well, we were told that an appointment had been for her at our local hospital. The hospital is 24 miles away and I knew Parky would hinder my driving, so I had to ring my poor twin and ask him to do the driving. Bless him he came to our aide and so perhaps I should dedicate this to him.

Perhaps he has taken my dad’s place and become my hero, but for heaven’s sake no one tell him, after all these years of scrapping I don’t want him to think I have gone dotty.

New Dance

I am in a castle in north Wales coming to the end of a turkey and tinsel break we have had christmas day and boxing day tonight It will be new years eve.
I haven't managed to escape Parky he has let me know that partying is not the best idea.
When I enjoy myself I tend to forget about pill popping, so when I get up to dance it is a case of bum bum bum
Still it hasn't stopped me just means I may be starting a new kind of dance
Sent from my BlackBerry® wireless device

ABRACADABRA

Today we had the Parkinson’s Christmas lunch so that’s it, its official, Christmas is on the way.

Do you realise that this time next month it will all be over, so that’s one good reason to get on and enjoy whatever life has to throw at us.

For the next month all going well, (like no snow) I intend to party whenever where ever I can. I have two coach trips, (want to dance) the first lasting five days and the second two.

Then I am away for New Year with Just You, (for single travellers)

I really hope I have enough stamina to outwit Parky, I think Wobbly Williams has got it right we need to exercise. I won’t be following his lead and doing marathons, well not in the foreseeable future thinking about it not at all.

Dancing that’s excellent exercise, all I need is a dance and a willing partner. IS THAT TTOOOO MUCH TO ASK.

I know this is a very stupid thing to say but I really can’t believe how much better I feel since lowering my morning pills. I feel more alert and have had many comments to that effect.

My Christmas wish is for a Parkinson’s nurse, someone who understands the effect that the drugs we take have on us, who can moderate our doses according to our lives.  So as in a pantomime I will say the magic words, ABRACADABRA. Bum it doesn’t seem to be working.

Let the Train Take the Strain??

Yesterday I did my annual meet up with my three lady friends, when we met it was as if we had seen each other just a few days ago. We fall back into a nice easy banter and know that we enjoy each other’s company.

I can’t believe it’s a year since we were all together, as our lives are changing it has been the first year since we met that we haven’t managed to get a break together.

It’s a time to catch up with each other’s lives, to find out about children and in some cases grandchildren. For those with new partners it’s a time to sing the praise of those left at home.

We have met in York for the last four or maybe five years as we like it a lot and find everyone can get there on the train, well I say everyone. I of course am the odd man out, (should have said lady).  Although I set out one of the first I was the last to arrive. I had to sit on Grantham station for an hour waiting for the connection.

I was BLOOMING FROZEN, and as you may know Parky is not very pleasant when cold. I stayed calm which was not bad for me and went on to have a very nice day. A bit of shopping, a bit of eating, and a fair bit of chatting.

So one outfit and one meal later we are getting ready for the return journey, two went off leaving two to try the new chocolate place. It got a thumb up from us both. Off we went to the station with a bit of time to spare and boy oh boy there on that flashing board they have my train cancelled.

I had picked that one as there would only be one change.  Parky doesn’t like too many changes, that was not to be, two changes plus the last part of the journey on a bus.

Now very cold, and in the company of one screaming child and a gentleman who was sat just behind me talking to his mobile phone for the entire trip.

There I go moaning again.

So here I am, none the worse for my day out, and I do like that dress I got for half price.

Enjoyable Day

After arranging to meet up with another group so that I didn’t have to drive to the Parkinson’s meeting in Nottingham I overslept.

Typical I had all my gear ready so that I would not be throwing cloths all over the bedroom first thing in the morning. Pills packed an extra days supply in case of emergency.

I woke to see the time was twenty past seven, bum bum bum, think those are the words I used. 

That was it. I wanted to meet Wobbly William; I knew he was to give a talk about his life since being diagnosed with Parkinson’s. He does a blog and much much more. I wanted to thank him in person for promoting My Mate Parky.

I am delighted to say I drove myself there and with the help of Billy Connelly on my Tom-tom I made it without a hitch. Billy never tells me off just reminds me it is best if I turn the whole car round and not just myself. He is inclined to brag that without his help I would have been hopelessly lost, well I can live with that as he may be right. The new bits of road give him a bit of a challenge as it looks as if I am taking up a bit of off roading, he goes a bit quiet as arrows go all over the place.

The meeting went really well and it’s great to talk with other Parky People, I very much enjoyed Wobbly Williams talk he is so positive.

I liked the fact that he believes that exercise helps him and has become something of a running freak, he leads by example and that means marathons, think I will stick to dancing for my exercise.

Look him up on http://www.wobblywilliams.com/brynsblog.html

I am worn out just thinking about it. Must get back to my Wii I have a Zumba program that I am keen to try. I have only had it a couple of months so you can see my enthusiasm.

I did need those spare pills; my eyes started to go a bit so I descended on my good friends and spent the night with them, so an enjoyable day was followed by an enjoyable evening.

Great Night of 60's

Last night I went to the Embassy theatre in Skegness with my friend who is ten years younger than me. I have only mentioned the age difference now as usually we don’t notice it.

I had rung her to see if she fancied going to see a sixties show after spotting it in our local paper, she is like me in the fact that given a chance we will go to the opening of an envelope if it means a good night out.

It was none stop nostalgia, well for me anyway. As I sang along to the songs of my youth I looked at her and saw the blank look on her face.

Not that she didn’t like it, only that she didn’t know a lot of the songs and I think was amazed at the fact I could remember the words.

How come that I can sing along to some long ago songs but have no idea where I have put everyday things around the house?

I must walk miles each day looking for something I have had in my hands just a few moments ago; I know I am not the only one. In fact it is quite reassuring that the same friend has just as much trouble as me. Mind you she attributes this to the fact she spends a lot of her time in my company.

I think a lot of the songs from that time are tied up with memories, when Union Gap came on and ended up with Young Girl I was transported back to the time I was courting my first husband. I don’t know if that is good or bad, he is the father of my two lovely daughters so I will thank him for that.

It was a great night with a great audience who were determined to sing along and enjoy themselves. But and it is a big but, couldn’t all those guys who have to spend half the night going to the loo sit by the door, or maybe the theatre needs a prostate corner.

When one person after another walks past the stage you start to get a bit distracted, in fact I was amazed that none of the acts commented. Maybe because it is part of old age and a lot of the artists are around the same age and understand.   

Help he is back

Well I came face to face with Ratty last night. He was coming out of the bathroom, I screamed he went back and I shut myself in the little bedroom I use as an office.
I know I should have shut the bathroom door on him but it never crossed my mind.
It's no good every one telling me that he was more afraid of me than I was of him, because that is just not possible.
Parky hates him too, he resorted to making me so stiff that I even ended up shaking.
I felt very guilty as I rang a friend and got him out of bed, when he got here I was outside ready, he asked if I wanted him to stay I said no could he fetch the spare duvet as I was sleeping on his settee.
Today I have restricted myself to the conservatory and kitchen as the rest of the bungalow could be home to Ratty
Tomorrow the rat man cometh yippi

Sent from my BlackBerry® wireless device

Olympic Flame

Today in the local paper we have been informed that the Olympic flame is not only coming to Lincolnshire, but would you believe it through the village where I live, how exciting.

I will have to eat my hat or go to the foot of our stairs, as I have been a bit cynical. When it was reported that the flame would come within ten miles of something like 95% of us, I was sure we would be the 5%.

I am delighted to be proved wrong; it only shows what a pessimist I have been.

Skegness which is down the road from me is quite famous as a seaside resort, but no one can say it is easy to get here. We are perched on the edge of the map, not quite falling off it, but the train stops here as it is the end of the line.

My eldest daughter put me forward to carry the Olympic Flame; I know there is only a small chance that I will get picked but it would be great to represent people with Parkinson’s and definitely  one in the eye for Parky.

A Cat on The Mat

Monday evening I play Bingo at a village hall, the pace is slow enough for me to follow and I even managed to win twice. I full house a large tin of biscuits and a line some cheese biscuits. They are stored away nice and safe as the last ones I won Ratty ate.

As I drove up to my bungalow I realised there was something in the porch, I could make out a cat curled up on the door mat. I expected him to vanish once I had parked the car and walked to the front door.  But no there he was a rather large ginger tom, he got up and greeted me in the usual cat fashion, purring and wrapping himself around my legs. I opened the front door and in he went, every room was inspected and then off he went.

Now had he heard about Ratty or is it the reincarnation of someone who is looking after me, as what I really wanted most in the entire world was a reassurance that Ratty had gone.

I think by his calm inspection of every room has called an end of my Ratty saga.

Girlie Time

My eldest granddaughter has stayed over for a couple of nights; it has been nice to have her company. She used to stay most weeks but of course now she is a teenager there is so much going on in her life. I’m so pleased for her but I did enjoy are girlie couple of days.

We of course lazed in the hot tub and had a go on the Wii (my new Zumba one). I did have to give in first as Parky managed to stiffen me up, but we had a good try. She has taken it home with her so that she and her Mum can have a go. SORRY K

We had an early night last night cushions all round us in my bed and put on a D.V.D. About half way through it I looked over at her and she was fast asleep, I wouldn’t have minded but it had got to a scary bit and I could have done with at the least a hand to hold.

I am away for a few days, as usual have packed and unpacked several times, does anyone know what to wear in this English weather. We go from quite warm to extremely cold several times a day. I think that may be an exaggeration. If I put much more in my bag I may have to start again with a suite case.

I have packed my pills and have my medic alert bracelet on, what more does a girl need, just to be up in time to get my train. Must set alarm!!!!!!!!!!

He’s Moved Out

Rat Man came in today and no signs of ratty, yippee have my home back.

How can such a small animal cause so much fear, even now after being reassured that he has gone I find myself listening for the slightest sound?

There is no wonder I can’t watch a horror movie, as soon as one starts it’s a race to find the remote control so that I can change sides.

Well off to my bed, think I will put some music on just to show I can cope!!!!!!!!!

Oh bum I have just remembered I stripped my bed as I had a fear that ratty would like to stay in it, so before I can go to bed I have to make it. I can’t even go in the spare bed as I did the same with that bum, bum, bum.

Good night all

Anyone got a good Ratter

Well I have now had it up to and over my head. I am stiff and I am angry what can I do to get help to sort out the BBBBBBBBBBBBBBBBBBBBBBBBBBB rat

I have a policy that covers me for any infestation, GREAT.

I had to pay the £50 excess up front not so good

They took the £50 but didn’t explain to me that no one would be coming out at the weekend. So Ratty has had several days to wee all over the place chew his way under a door and generally make a nervous wreck of me.

I have moved out as my phobia is RATS.

Evidently having a rat in your house is not an emergency.

Sod it why bother to get insurance I would have been better off asking around to see if anyone has a cat or a terrier that wants to go ratting.

In fact I think I still might, anyone got a good ratter

Ratty again

Well he is still in my bungalow, and I am feeling sh........t
I spent last night at my daughters and a lot of today with my brother. I won't go inside unless I am chaperoned.
I have now braved it enough to be in my garden I may even do some gardening nooooooooo.
I can't concentrate on anything but Ratty.
There is a rat trap in my hall as we think I have let him out of the kitchen and into the rest of the bungalow. I closed the kitchen door when I left yesterday only to find he has been trying to bite his way under the door. I am hoping that pest control can come and sort me out.
They are talking about Monday but by that time I will be completely round the bend.
Sent from my BlackBerry® wireless device

Ratty

I have a rat in my bungalow; I don’t mean a two legged one I mean a proper one.

It seems he is very partial to custard creams and my apples, and has even pinched chocolates that were in there wrappers in a box on the table.

To say I hate rats is an understatement they freak me out, so tonight I am going to stay at my daughters. There is absolutely no way that I am sharing my home with a rat.

A friend has brought a rat trap and says he will ring me in the morning, I have told him to ring on my mobile as I would not be at home. I really don’t care if they are more frightened of me than I am of them; it is not possible for anything to feel worse than I do.

Not even my hot tub can keep me at home, so you can see what he has managed to achieve. I keep thinking that he must have been around as I was innocently pottering.

When told today that I should be wearing shoes and not go around bare footed as I usually do, I instantly went and put some on which to be honest is an absolute first. My normal answer is that if my dad could not get me to do it after 60 years what chance has anyone else.

Please tell me this is not going to be an on-going saga, as I can feel My Mate Parky using it to have a field day.

Medic Alert

I am now the owner of a nice shinny bracelet that informs anyone who may come to my rescue that I have Parkinson’s. I have registered with Medic Alert who can then relay any medical information that may be needed.

So the fact that I am allergic to plasters and can’t take penicillin will be picked up and stop me from the itching I would get from them.

I didn’t think I need to add that Pears soap is also something that will drive me crazy, as the last time I used it I even had spots in my belly button.

The fact that somewhere it is written down that I have Parkinson’s and I need my drugs has gone a little way in bringing me hope that I will get them.

My brain donor number is also on it, which means that should anything untoward happen to me; Parkinson’s have a lot better chance of receiving it. I know many people will be shocked to learn that I still have the use of it from time to time.

So now I can go on my travels with the knowledge that a bright shiny new bracelet will help to keep me safe.

The one I had before had a screw on top that you put in a folded piece of paper, I lost the top. I think it worked itself loose when I filled the pond in. (that’s another story)Then again I really don’t think that had I needed its support anyone would have been able to read what was on that tightly folded piece of paper.

Thank you Wobbly Williams

First of all for featuring my Blog on your site I was very thrilled to find me there.  Secondly it’s good to see what others have written.

I have read Vicki’s last few Blogs and I‘m pleased to see she is bouncing back from the comments that were made by that Jerk Homes.

I have never liked him and now I know why.

If he had half a brain he would have asked constructive questions, instead he was like a smutty adolescent trying to impress other smutty youths.

After the journey back from Ireland it has taken me a while to sort myself out, I can’t believe that I got so upset that I let Parky in. Well I have made up my mind to calm down and chill.

With that in mind I have used my hot tub as often as I can; last thing at night is wonderful I now go to bed a lot sooner and sleep a lot longer. When I wake up as stiff as a board it just gives me an excuse to go in again.

So this crinkly wrinkly person wants to know if I can get the electric paid for by the National Health Service, or at least a few bars of chocolate to sustain me while those lovely jets of water massage my back.

Sorry am I gloating a little too much.

Thank you "B" My Knight

Was it really Ireland that we travelled back from yesterday?

I was sure we must have travelled half way round the world, and why does everyone on a coach have to get their voices heard asking the most ridicules Questions?

It got to the stage where I was very tempted to stand up and treat them all like naughty children. Put on a very stern voice and insist every on sat still and say nothing.

The hotel we stayed at was on the west coast of Ireland and the ferry we wanted to catch was on the east side.

We set of in reasonable time and even managed a comfort stop, but it seems that the drivers Sat Nav depends on post codes and Ireland has a shortage of them.  Posty knows who’s who so why worry.

Time was getting a bit close owing to road works and Sat Nav, so we were quite relieved when the dock was spotted.  But oh dear it was the wrong port, so after a lot of irate bickering it was suggested we ask a taxi driver to lead the way. This was duly organised and off we set;   but at every set of lights the taxi got through and then they changed to red before we could get through them.

Now I really can’t think what thirty odd back seat drivers can do other that stress the poor driver to breaking point.

After being nudged in the side several times and asked the most stupid questions, Parky decided there was one person he could take control of, I had let my guard down and he came back like he had not done for a long time.

If I could have disappeared into a quiet corner I think I would have been able to take back full control of him.  Instead I seemed to be a the centre and trying desperately to sink fare enough into my seat  so that no one could invade my space and expect me to take sides.

I could feel my face and neck stiffening and I knew that it was only a matter of time until it would get the better of me and I would end up crying.

When the person next me realised the effect it was having on me she then thought cuddling me was a good idea, it might have been at a different time, but not when I was desperately trying to fight Parky. All I wanted was out, so when we managed by some sort of miracle to be let onto the ferry I just escaped as fast as I could.

I didn’t want the upgrade that I had booked as that would have meant the attention of a lot of well-meaning people that I was desperately trying to avoid.

I am aware that I took full advantage of a very nice gentleman that I met on the holiday and for once accepted the help of a knight in shining armour. His gentleness and thoughtfulness helped me to bring Parky back to a form of control, I must thank him as I am not sure if under the stress he realised how much it meant to me.

As he is not a computer nerd like me I doubt that he will see this, perhaps for the best, do I want him to know all about my on-going relationship with Parky. So if you do read this B thank you very much.

No Cat

Holiday going well but as the weather has changed it looks the catamaran has been cancelled.
So that means that we have to change travel plans.
We had a choice of ferry at eight in the morning or nine at night. Being as we are at the least three hours away the later one has got the vote.
We have gained an extra day along with a lot of chuntering.
Parky has been just managed to sneak in maybe three nights of dancing was a little over the top, do you think one more night will matter?
Sent from my BlackBerry® wireless device

Ireland

Well here I am one full day travelling and two nights dancing, sorry Parky I have you beaten for the moment.
The food is heaven and I have even had a glass of Guinness, different but I think I like it.
The weather hasn't been great but does that matter?
If I pay for this when I get home I don't care. So bring on the dancing I'm not going to bed untill it's all finished.
Sent from my BlackBerry® wireless device

Great Meeting

This is an update on the update.

Fridays get together went very well, everyone was very chatty and I think it made us all realise that without the back up of a Parkinson’s nurse. We need to be there for each other.

Some very good gadgets and one that could be improved on, (that was one of mine) I have a torch type thing that can be hung round the neck.

It has a light on both ends and in the middle is a compartment for two batteries. Mine is so well made that it already has an elastic band holding the cover in place so that the batteries don’t jump out.

Well abracadabra I pulled it out of the bag to show everyone.

First I couldn’t get it too light up, then when I did it wouldn’t turn off, I don’t think anyone will be queuing up to buy.

My absolute favourite gadget is a row of coat hangers on a frame, I can put seven items on it and if it starts to rain all I have to do is take one hanger off the line.

It was very difficult to explain so I have just been in the garden and taken a picture.

Now that reminds me that I need to do ironing as I could do with those trousers for Ireland.

By the way I was fibbing when I said I catch the coach at five in the morning, it’s five thirty. An extra thirty minutes in bed.

Yesssssssssssssssssssssssssssssssssssssssssss

Brian Lowe

@MeAndPD Palo Alto, California

Has made a suggestion

“I'm thinking of a website for Parky fun and fitness things...”

Well Brian I think you maybe on to something, I will keep my eyes open for any unusual items.

My Update

I have been getting rid of emails, I don’t know why I leave them to accumulate and then see I have quite a lot. I dare not get rid on block as I can’t remember if I have read them properly or looked and decided that I will look at them later.

I have found one that asks me why I think I need to reduce my requip, so very sorry but I haven’t got the hang of replying, via the blog.

I think this will end up as an update blog.

First I think the cutting down of the requip is something I should have thought about earlier, I am much more alert and have had comments to that affect. Parky only appears when I am getting ready for the next pill, so that makes sure I don’t forget.

The second thing is that my cold seems to have gone thank goodness, must have been the hot chocolate with whiskey. Much better than cough medicine, plus I really have no idea what I can take with the rest of my pills.

Then of course I am making a lot of use of the hot tub, its pure heaven. I don’t know if I like it best first thing in a morning when I roll out of bed as stiff as a board, and I mean roll, it’s a good job I’m by myself as the grunting and groaning goes on for a while, or last thing at night when I am laid in it looking at the stars and feeling warm and relaxed. That takes a lot of beating.

This coming Sunday I am going to Ireland for a few days with our local holiday club, just what I need a 5 am start to the day. I don’t think I ever know when to pill pop on a day like that. Fortunately the lady that runs it lives three doors away and the coach picks up at her door, how’s that for convenience? I am thinking of turning up with a blanket, eye pads, ear plugs, and a teddy bear.

But before that is my self-help meeting, after having my hair cut, followed by and of all things my boobs are to be squashed as I have a mammogram on Saturday.

Just thought I would let you know as of today my money is still in cyberspace, well what did I expect? Did I really think the good old credit card company could move money from one account to another instantly?  It’s just you and I can do that when internet banking. Gosh I must be very thick.

   

Money in Cyberspace

I know this is totally my fault but I just can't get my head round it.

My credit card was with my bank, as I had been with them a long time I thought I would look for a better deal. So after trying a couple of different ones over a stretch of time and finding them wanting, I decided it would be better the devil you know.

So with my trip to China in mind I went into the bank, applied and was given a new account. The thing is silly me I did not realise that the old one was still open, and as I had destroyed the old card I never gave it a thought.

As I do my banking on line I merrily went along as usual paying chunks off here and there as I thought about it.

Next thing I have a letter telling me they are charging me for late payment, well I was a bit grumpy as I always pay a lot more than is due and as it's interest free at the moment I was kicking myself. Then I get another letter telling me that as I had made no payment this month my card must not be used and I was being charged again. To say steam was coming out of my ears was a slight understatement.

So armed with a printout of my payments I rang the credit card section of the bank, as I am explaining in great detail how I intend to take my custom elsewhere I realise that the transactions that are missing are because I have paid them into the wrong card account. IDIOT.

After several phone calls and a bit of Parky time the money was located and needs to be moved from one to the other.

Now when I press a button on my key board I can transfer money from one of my accounts to another instantly, so how come a bank has to take days to do the same thing and they have to be working days.

Is there a place in cyberspace that looks at the calender and says YIPPI ITS A NON WORKING DAY THE MONEY IS MINE?????????????????????????????

Not Parkys Fault

I am feeling yucky, but for once I can't blame Parky.

I have no. 1 daughter staying, so no 2 daughter and 3 grandchildren came to visit.

No 2 brought with her her own friend, a cold.

Last night both no 1 and myself were competing for who felt the worse, I am sure it was a no contest as I defiantly out coughed her. She as usual beat me on the sneezing.

Today has been spent sleeping, well that is by me, and I have just had to take a dose of the tried and tested cold relief a shot of whisky. Well I did put it in a mug of hot chocolate, bet that has surprised every one.

I am wondering about going in the hot tub, or failing that may just go to sleep again.

Decisions, decisions.

I don't think I have a decision left in me. AHHHHHHHHHHHHHHHHHHH

The next Parkinson's meeting is I think on a roll, who ever I talk to thinks a self help afternoon is a great idea.

It looks like most people will come laden down with either ideas or gadgets, so fingers crossed we can fit it all in.

Self Help

I seem to be managing alight with taking less requip, I am not saying every one should do it as we all know Parkinsons treats us all very differently.

My fear of Parky taking over my life again has as fare as I can tell not happened.

In fact today I have been on a shopping trip with daughter no 1 and have come back with very little,

excellent for me.

Two nights ago I was in bed and asleep before ten and that was at night.

On the other hand I seem to be less inclined to fall asleep at inappropriate moments. There have been times when I have been having a conversation with someone and I have been fighting to keep my eyes open. I have had some very strange looks, I didn't really find them boring honest.

I am in charge of our next Parkinson's meeting, I have put forward the idea of a self help afternoon.

Anyone who wants to bring anything with them that they think might possibly be of help to others, or any information either to help or wanted.

I am sure that in our small group there is a mind of very useful information, failing that an afternoon of some wacky ideas.

Perhaps I will tell every one to BLOGG.

Who knows Me and My Mate Parky may end up with competition from our own group.

Less Stress

I don't know if it is wishful thinking but since I have cut down on my Requip, I feel much more alert and have been told I sound it.

I have been doing more housework which is a bonus, I don't know if it the relief that Parky has not come rushing back, or that I was probably on a higher dose than I needed.

The dosage was set when I was trying to cope with a lot of stress, as that has altered could it be that I didn't need the amount I was on.

I am now the owner of a hot tub and go in several times a day, I don't always have the jets going, in fact I like it best when just laying back in the peace and quiet.

I have gone down the no chemical rout and it seems that I have seaweed to thank for that, still what the heck its better than chlorine.

So perhaps the tub is my stress beater, that is until I get the electricity bill.

If things stay as good as I feel at the moment, I may just stay at this level for the time being.

I may even try Face Book again so that I can catch up with friends. I don't have to play games do I?

Double Fire

I have been thinking of the last few blogs and wondered when my blogging changed from being light hearted to being just a bit of a moan.

So from here on I have decided to find the me that goes with my birth sign.

According, to my star sign I am a fun loving party person, now all I need is a party. I am also a traveller well that’s fine with me.

In China I am a Pig this I was told was a very lucky sign, one of our guides told me she had purposely planned her daughter to be born in the year of the pig.

I was a bit sceptical when told how lucky I was. Having Parky didn't feel very lucky to me, but it seems that as a pig people will come to my aid.

I know I try to fight off any one who dares to suggest I could do with some help, well I think I had better give in with a bit of grace and admit that it's not my fault or even to be fair Parkys fault.

This Sagittarius Pig had better be a bit more gracious and say thank you, instead of giving potential helpers the evil eye.

I have just checked that what I am saying is correct so have fed into the computer Chinese pig and found out that the year I was born makes me a fire pig, well that makes me a double fire sign, how cool is that. ( not cool at all but extremely HOT HOT HOT)

Letter to my MP

I am sending this letter to my MP, I don't know if it will do any good.

After long talks with our local PCT about a Parkinson's Nurse it seems talks have come to nothing.

I was so upset that I composed this letter as soon as I read the email that gave us the bad news.

So this is my letter

I am asking for your Help

Imagine at 53 years of age you loose your husband to Cancer, You have nursed him for the last few years and without the help of the MacMillan nurse you would have found it all too much to cope with.

While you are coping with this you realise that you have problems of your own, but it is all too much to bare.

After his death you seek help only to find out you have been rewarded with a condition called Parkinson’s Disease.

You eventually get to see a neurologist and start to take medication, the side effects make you feel sick and you spend your time travelling around in your job with a packet of ginger biscuits permanently on the passenger seat of your car.

You are finding day to day tasks very difficult but what can you do you have to pay your bills.

Then into your life comes the help of a Parkinson’s Nurse She is only a phone call away, you build up a relationship and she has the knowledge to help.

Then she retires. Good for her devastating for you.

Her replacement doesn’t cover your area and you are left in limbo.

When you have Parkinson’s your whole life revolves around medication, when things go wrong with it all you can hope for is someone with the knowledge to help you.

I feel totally abandoned, the medication I am on is causing me to have addictions, the Neurologist I see agrees with me so I am trying to cut down what I take.

I am shit scared of going into hospital as I know of people who have not been given their drugs.

Then guess what the condition is made worse when you are stressed.

What has made this so distressing is the fact that Parkinson’s UK has had endless discussions with our local PCT and although the money has been offered to fund a nurse it has come to nothing.

So we will see, if any one who reads this is in the wilds of Licolnshire and feels like I do, please send your own letter to your MP

Spooky

I have printed out a copy of this Blog ever since I started and put them in an album, This one will bring me to the end of the book, what a lot has gone on, I can't believe that I have kept this going.

Have I managed to do what I set out to do? Well I am not quite sure, so maybe I will carry on with my ramblings, who knows book 2 maybe on the cards.

I have a new follower to my blog, so I clicked on the link to see who it was. The Person calling himself DAD you are very welcome but you did give me a bit of scare. I lost my Dad last year and to say we were very close is a bit of an understatement.

Now I know that even if he was still here, he would have found it impossible to turn a computer on let alone be a follower of anything, but it did make me feel good to see Dad following me.

I seem to be living in no man’s land, a place between elation and desperation.

How do I feel now that I have reduced my requip slightly?

A lot of the time I feel lethargic a sort of not caring if jobs get done.

Have I had any of the old symptoms back?

Perhaps I have, I was given it in the first place because of down time, a wearing off of my four times a day drugs. Now I can tell that it is getting very near time, My legs feel as if I am wading through water, not all the time so I am grateful for that

Do I regret starting out doing it?

Maybe from time to time, should I have let the sleeping dog lie? That remains to be seen.

I wonder how many people are doing the same as me?

My friend J gave me a talking too, I think after watching Vicki on TV she has been wondering how to approach me, well I let her in and talked to her. Admitted a few things and for probably one of the first times listened to her.

She is convinced that I have been fighting so hard to control Parky that I haven't grieved for what he has taken away from me, and WHAM BANG I think she maybe right.

I want ME back, is that really to much to ask for!!!

A Light ???

I have made the decision to remove myself from facebook, I realise that I spend my time waiting for the next time I get points to play games, I sneak into my computer room when I really should be doing something else and just have a look to see how much time there is left. WHY ? Do I really need to spend my time on such things to the extent that I forget to eat, take my pills and don't go out.

I think I may just have stared to get my life back.

Perhaps the cutting down of the requip is having the effect that I wanted, after dreading what was going to happen when I did.

WOW

How do I feel? Well I defiantly know when its time for the Stelevo, but hay that’s good it gives me a kick in the pants, which I need.

I think I am starting to worry a bit about what I am spending which is also good, I may even be able to stop myself from stupid purchases.

Parky has not as yet done anything too drastic, so slowly slowly I may be heading for the light at the end of the tunnel.

Better not get too cocky, but FINGERS CROSSED

Requip Bull by Horns

I seem to be managing the cut down of my Requip, perhaps half the battle is convincing myself that I will not be opening the doors wide to My Mate Parky.

I think the ongoing fear of becoming a shaky stiff being has held me back, I have read lots of things about the side effects and know my drowsiness is not as bad since I cut down 4mg from my morning dose.

I am on slow release so have gone from 20mg to 16mg, after seeing the Dr. (that is my new Dr) this morning I am now going to cut down by 2mg.

I am also on Stelevo 4 times a day and to be fair I haven't always taken the forth one if I have got a bit late, so as the Requip goes down I am making sure that I take the four doses.

I have had a few stiff times but I think I may be a bit to blame, I am not the best of time keepers, so it usually is a wakeup call to pop a pill.

Perhaps if I try mind over matter and stop myself looking on the black side.

Just think how rich I will be when I stop my spending and how fit I will be when I am going to bed at a respectable time.

With a bit of luck I won't become a bit of a bore who gives up risk taking all together, NOOOOOOOOOOOO I can't see that happening to me.

My New toy is a hot tub, now that is spending!!!!!!!!!!!!!

True Blue Day

Yesterday was a one up for Parky, felt like shiiiiiiiiiiiiiii.t

It was one of those times when life seemed so damn difficult that I just wanted to cry.

To be truthful that is what I did several times.

I rang the Parkinson's help line and was helped by the soothing words of one of there nurses. She talked common sense which is what I was very much in need of.

I later got myself organised and went on the bus into Skegness, having done banking and such I went to the supermarket. I realised I had not as yet eaten, why I had missed out on food heaven only knows, well I say I hadn't but I do seem to remember a few squares of chocolate passing my lips.

I grabbed a bight in the café and then ambled around the store as I was no longer hungry nothing looked worth while getting.

I got a few things and then went to the till, I must have looked a bit naff as the guy on the till got me to sit down while he sorted every thing out.

Isn't it brilliant that there are a lot of very nice people about, who go the extra mile at the drop of a hat and through there kindness life seems so much easier to live.

Vicki you are a Star

I take my hat off to Vicki Dillon the lady who was filmed as she tried to cope with her Parkinson's and the addictions that her medication has given her.

Being diagnosed at 35 must have been devastating, I at least had another 20 years without Parky.

Her story was told on channel 4 last night, as I had been away for a couple of days I watched it on the computer.

I am in awe of her, she must be pushing herself to the limit, not only is she still working as a paediatric nurses she then goes home to her husband and 2 boys.

I have read her blog which she writes on the Wobbly Williams site, and I am sure she was the inspiration for my own Parky blog.

I had been told by friends that the program was being shown last night and being a bit cowardly at the moment as I am trying to cut down on my requip, I wasn't sure if I could cope with it.

I am really glad I did, even if it was just to verify that I am not completely boncus.

I know I must get my head around the fact that I have to sort my pills out. I have been on a lower dose for 13 days, I seem to be coping well, maybe a little stiff when I am getting near to the time when I need my other medication.

So now a big decision is tomorrow the day that I take the next step and reduce them again ?????????????????????????????????????????????????????????????????????

read Vicki's blog

http://www.wobblywilliams.com/vicki.html

Help me Reduce my Requip

I have taken that first step to try and control Parky's addictive side.

With a sense of dread I have started to cut down my morning dose of Ropinirole (Requip).

For the last few years I have been taking 20mg in a morning 2x8 mg and 1x4 mg.

When I saw the neurologist and discussed my addictive nature we decided that I would slowly cut out the 4mg tablet and give it a bit of time before I braved cutting down a bit more.

So after putting it off as I was once more on holiday I have now taken the bull by the horns and from the first of the month I have only had 16mg a day. That off course is only one of the drugs I am on.

How will Parky act will he creep back in and once more control my life.

Will I be able to cope with what life tends to throw at me?

Who can I turn too for help?

Is it better to keep my addictions and keep Parky under control?

I am so cross that I have to face this while changing Doctors and not having a Parkinson's Nurse.

I do believe if I had had the back up of a nurse we would have talked things through and maybe I would have been changed to another drug before now.

Its as if I have to face having Parkinson's all over again.

BUM BUM BUM AND MORE BUMS.

Parky in Germany

I am laying on a lounger at the side of the Mosele River.
I think Parky may be getting used to my galavanting, as I have even managed a bike ride today.
My granddaughter and I flew here on Saturday to meet up with my daughter and son-in-law who have a camper van. Hence the location, a camp site just outside of a town called Zell.
We thought we were in for some bad weather as we were greeted by rain, but last night we spotted stars in the sky so kept our fingers crossed.
Today against all weather forecasts we have had sunshine, doesn't that make all the difference, I can even forget about changing my pills for a while, in fact I shall ignore it completely till I get home.
Sent from my BlackBerry® wireless device

I Give Parky to the P.C.T.

I know it is my pet beef but has the health service gone barking mad.

Why is it that we have had such a challenge to try and get Parkinson nurses?

There is money up front to provide for them, people like myself would be better able to control their condition with a nurses help.

BUT MOST OF ALL IT WOULD SAVE THE NATIONAL HEALTH SERVICE LOTS AND LOTS OF MONEY.

I feel very angry at the attitude of those who sit and make such ill informed decisions. The money that has already been spent over the last couple of years on meetings to discus the proposal, has been completely wasted.

We have the McMillan nurses that work along side our Doctors and Nurses, did they have the same set backs we are having?

I live in the second largest County in England, and guess how many Parkinson's nurses we have? Absolutely ZILCH, NONE WHY? WHY?

If by some misfortune someone on the PCT woke up in the morning and found my Mate Parky had moved in with them do you think we would stand a better chance?

Now that has got me thinking, how do I convince Parky that he would do much better if he found someone to bother over in Boston.

Album for a Friend

After many mishaps I finally managed to down load my pictures so that I could buy an album on line.

Thank you Jessops for printing it, I will now be able to bore for the England and maybe for the world.

So not only do I have the pictures on my computer but some on disc and now in an album, how sad is that you can tell what I have been doing since I got home.

Oh I forgot to say I also have one as my desktop.

I made a new friend while away in China, he is a delightful character who seems to be on the same wave length to me. YES CRAZZY.

His camera was misplaced, he thought he had lost it but fortunately there it was at the bottom of his case. I did the quite friendly thing in offering to send him some of my photo's.

To cut the story short R your album should be with you tomorrow. I will keep my fingers crossed that you will like it.

I'm so Afraid

Well have been home over a week and if everything was going to plan I would have started cutting down on my Requip.

Have I started NO.

WHY?

Because to be truthful I feel scared of trying. I don't feel I have any back up, my next appointment with the Neurologist is in January.

The Dr that has seen me through thick and thin has retired, and as I have had to change surgeries I have no idea if at this practice there is anyone who has any idea about Parkinson's.

I know I keep on about a Parkinson's nurse but I would feel more confident if I could have a nurse to turn to.

So Blow it I will stay with the pills I am taking who cares if I gamble away my children’s inheritance, what does it matter if I stay up all night, who gives a monkey anyway.

I can forget about getting stiff, starting to trip on the least little thing, and Parky coming back with a vengeance. This of course is what is hanging over me like the sword of Damocles.

We have been rubbing along quite nicely for quite a while. I have found that when he really bugs me it is as much my fault as his so how can I invite him to take over my life.

But most of all I am feeling very very let down, if I as a quite active PD person feel like this what chance is there for any one who needs more help than me???????????????????????????

Time to Reflect

My Eldest granddaughter Is 13 today, she will be a teenager and is now getting quite grown up. Over those years life has changed completely for most of my family.

The One person who would have loved to see her growing up was her granddad. When she was due he said to me I know you are excited to be having your first grandchild but you must understand that It is not mine so if I don't get as excited as you that's why.

The day she was born he went to the hospital and my daughter passed her over to him and said here you are Granddad and he was hooked. They bonded and for the rest of his life there was something very special between them.

I have so many photo's of them together, mostly cuddled up and often asleep. She called him Yanyan her version of granddad, and would help to look after him as he became more and more ill.

I think she was born for a purpose, as she helped to extend his life and I am sure he would have been very proud of the young lady she is turning into.

So Happy Birthday H from me Nanny and I am more than sure from Yanyan too.

It is on days like this Jim that I know you are missed but also know our lives were enriched by the wonderful memories that we have of your time as a very special YANYAN.

AWESOME

Well now that the washing has been done, Ironing too that’s a first.
Some of my photos have been sorted and downloaded.
Now I can now try and explain just how much I am delighted that I coped with the holiday and Parky.
He was never too far away and I defiantly found out that I couldn’t take any liberties as he would spoil my fun.
The sights I saw and the friendliness of the people will stay with me for as long as I have a memory.
Two sights that will instantly come to me when I hear China mentioned, are the great wall, if I thought it was magnificent I was proved more than right. The second of course were those awesome warriors.
I was very close to tears as I realised that I had made it after wanting to for such a long time. Later I was a bit surprised but pleased to hear that others had had the same experience.
I will do a first for me and try and put some photo’s in this blog, where I start who can say as I have taken over 500 photos.
I and am waiting for the first victim, I expect some one will be daft enough to say can I look at your photo’s. and then whoopiiiiiii.

I did miss Dad when I got back as I used to buy a book on the places that I visited for him, so that he could feel part of the trip. I bought one of the warriors signed by the farmer who found them, he is only there now for a few hours a day. No photos are allowed he does not like his picture taken. Do you think I am a bit cynical when I wonder if they interchange farmers?
My slide show
https://picasaweb.google.com/108100517186681990974/Videos?authuser=0&feat=directlink

Fish and Chips

Had to do it, had to have something English and no chopsticks.
We have had some excellent food but somehow waiting for the food to be spun round on the lazy suzy can begin to get to you.
Especially when every thing seems to be put on on the opposite side of the table to you.
I have had a go at chopsticks but I don't think Parky was at home with it. There were defiantly a few moments when he showed his hand.
Not quite home yet, I am staying close to the airport, sat in the restaurant listening to Elton John.
Can't wait to load my photos
Sent from my BlackBerry® wireless device

Going Home

We are sitting in the hotel lounge ready to go home, every one aware of the long flight ahead and wishing that we could be transported direct to our homes.
It has been the trip of a life time, so many sights and the friendliest people. We have been treated like an oddity with lots of giggles and people getting close enough to have there photo taken with us. Of course we loved it and posed when ever we could. I wonder how many Chinese albums have been ruined with my photo
Sent from my BlackBerry® wireless device

Nearly Over

I am sat in my hotel room in Beijing. This is my last night in China and I have enjoyed every thing we have done.
We had a bit of a hick up when leaving Beijing to join the cruise, the weather changed and it seemed that we were going to be stuck at the airport as every thing came to a holt as it thundered and lightened.
We had already had our flight changed because of the weather, so I think we were expecting the worst.
We were loaded on to the plane and there we stayed for the next five and a half hours.
My seat was very close to the toilet so every one in the world came past me.
Things got a bit excited from time to time and some passengers elected to leave the plane of course this didn't help as cases had to be unloaded which meant more people got irate.
To cut a long story short we finally flew, got to the boat a day late.

Sent from my BlackBerry® wireless device

River Cruise - Here I come....

Today we are having an unexpected break. The flight that we should have taken has been cancelled so we fly later today to go on the cruise.
This morning the group splits in two, one lot heading home and the second has lots more travelling to do (that's me yippee)
My group should have been away from the hotel at something like 4 o clock this morning much to the delight of the other group.
Instead it was us that waved them off, shame
So I will be able to recharge my batteries and keep Parky out of sight.
Do you think I could pack him in some one else's case, now that's a thought.

Terra-Cotta Army

This is why I came, row upon row of Warriors with faces that could be seen in the streets today. I felt quite a lump in my throat as I realised I had made it. All my wishes have come true, well maybe not all but enough to keep me going for several months. I have bought the book and had the farmer who helped to find them put his mark inside. No photos of him not allowed but lots and lots of everything else. Moveing on again tonight meal and show tonight
Sent from my BlackBerry® wireless device

From China with Parky

I am now taking a Parky rest as he got his own back yesterday for my lack of consideration.

After seeing several Palaces walking a very small part of the great wall and getting a tee-shirt.

All this on top of several early morning and all day outings Parky said stop, and stop I have done.

This afternoon I go for a massage, so that should recharge my batteries.

 

The trip is wonderful probably the best holiday ever, and I am even managing Chop sticks how cool is that!!

One Day untill China

Well as the song goes” I’m so excited, I just can’t hide it”

I’m going to China, sorry those words are not on the record.

I have been practicing with my SUPER DOOPER CAMERA. It truly is an amazing bit of kit, it has a 24x optical zoom, and so long as Parkie stays off my shoulder I should be able to take some fantastic pictures.

I have had to buy a new handbag today, one that is big enough to take the camera and all the c—p that I need, the odd pill or two, and a drink to take them with.

I have spilled drinks in several handbags in the past, so I have one that will have the camera separate from any drinks.

I got up and packed this morning just one day to go, I am trying to be frugal as I am travelling down to Heathrow by train.

I did have a lift but by booking in advance with my senior rail card it was £17 each way. Then I was sent an email to ask if I wanted to upgrade to first class for ten pounds, that’s on the main line train I of course said yes.

So it’s now time to check what’s left to do, I think I had better mow the lawns and take my tomato plant to my neighbours for its holiday.

But top of list must get some Chocolate to keep me going while on the train.

I Came Home to Parkie

I have been away at a holiday camp and had a great time good company, lots of laughs and plenty of dancing. I had a ball.

I really didn’t care who was on the floor dancing as long as it was me. I was last to leave and that was four nights in a row.

I also went swimming played putting and bowled. I had such a good time that I forgot about Parkie, so when I got home he really made me pay.

I have been robotic ever since, that feeling of a band around my neck and my hands belonging to the person over the road. Thankfully it seems to be sorting itself out I am resting as this time next week I shall be on my way to China.

I am trying very hard to be good as I don’t want to jeopardise my long awaited trip. I am so looking forward to all the sights.

I have been practicing with my new camera its fantastic. Though I had a bit of a hick up when taking a photo of a very old car with a very elderly couple who had just got married, I have a wonderful picture of my lens cover. MUST REMEMBER TO REMOVE IT.

I have tried to guess what to wear I expect that whatever I take I will be wishing I had something with me that is still hanging up in the wardrobe, but hay what does it matter, all I hope is that Parkie keeps his nose out of things.

I am getting so excited I shall be counting down the days, only 7 to go.

YIPPIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII

Drs Get Rid of Me

I have been with my Drs for well over 20 years and have seen one Dr. for most of the time I have been diagnosed with Parkinson’s. He has been a constant rock for me, I was a bit shaken when I last visited him to find out that he was a few days off retiring. He was good enough to tell me who of the remaining Drs would be the best to see as mine was an ongoing illness.
I was there for absolutely thrown when I had a letter from Lincolnshire Teaching Primary Care Trust and I will quote:-
We are writing to inform you that the practice with whom you are registered with has reviewed their patient list and have advised us that your address is outside of the practice area. This could cause problems for convenient access to the surgery and home visits should they be required. You should seek acceptance by another GP in your area of residence as soon as possible.Your current GP is no longer obliged to visit and treat you unless you have obtained their prior agreement, unless treatment is due to an accident or emergency.
The rest of the letter informs me how to register with another Dr.
I must stress that a lot of Patients have been affected by this, but it has all been done in a very cold and underhand way.
I don’t understand why the letter was not sent out by the Drs themselves especially as the letter sent to me had the wrong initial on it.
I now have to start with not only a new Doctor but also I have to deal with a totally new way of getting my Medication, a new chemist to dispense it. This is also at a time when I am about to try and come off or at least reduce my requip.
So as I have said on many occasions BUM BUM BUM

Fight Back

This morning I went to see my (Parky’s) Neurologist, and we talked about my worries on my addictive behaviour.

When I get back from China I am going to slowly reduce my requip and see if I can manage, as I said before I don’t know which is the better option, do I struggle to cope with My Parkinson’s  or do I struggle to cope with my guilt. Do I just think to hell with it I will live my life as I like until the money runs out. Then again is it best to pull myself up and risk the chance that Parky will take control.

But I know one thing I will fight tooth and nail to stay in control of my life, I am the most cantankerous person I know. I think I had better look the word up to make sure it is what I mean. 

(cantankerous - stubbornly obstructive and unwilling to cooperate)

Yes I have looked it up it does sound like me, wonder what other words describe me, I could make a list like in the readers digest.

I don’t think I will open it for discussion as the flood gates might open.

This was on face book  and I was quite surprised at the different answers.

YOU AND I WAKE UP IN A PSYCHIATRIC WARD TOGETHER. USEING FOUR WORDS ONLY WHAT WOULD YOU SAY TO ME?

It’s all your fault

Where is the bar

Good a friendly face

What did you do?

Just look together again

The first answer was by my youngest so that tells you a lot.

To Jim

Today is the tenth anniversary of the death of my lovely husband.

When we met I was working in a local hotel in the bar and he was in charge of a group of men who were installing laundry equipment in our local laundry.

I was separated from husband number one and was quite enjoying being single,  because  of what had happened I was livening in a mobile home at the side of my parents, plus 2 children and 2 dogs. He had been divorced a while and was living out of a suite case with a room at his parents.

He said he knew as soon as he saw me, but I was running scared I had decided Love was not for me, who wanted a bloke interfering in my life?

Shall I say with his wacky sense of humour which matched my own, and his total love of me I was won over.

He was a romantic, I still have the cards he sent me. When we got married he whisked me off to Florida and we were married on the beach, I had never seen him so serious.

When he was diagnosed with Prostrate cancer he fought long and hard to overcome it as he said it was the first time in his life that he had all that he wanted.

I feel very privileged that for a few years he was my life, and maybe I was meant to there for him shall I say it was destiny  

He kept his sense of humour right to the end teasing the nurses in St Barnabas Hospice in Lincoln

So today is Jims day a day when I can feel the warmth that he surrounded me with,when I can look back and know that he enriched my life.

Thank you Jim

Have I Really Got Used to Parky

Hi, I don’t seem to do this blog as often as I would like too, so does that mean that My Mate Parky has become so much a part of my life that I now take him for granted.

On the days that I become robotic, do I make excuses for the tight grip he has on me? Have I now put the blame fairly and squarely on myself? I know I forget to take the odd pill or two but even after about eight years of medication I still don’t think of myself as a pill person.

If I wasn’t feeling very well before Parky I would take myself off to bed and sleep off anything I had wrong. I used to hibernate myself well.

But boy oh boy I can’t do that now, if I have a lay in and ignore the pill time, I find that the toes on my right foot begins to curl under, and just as I wonder what the heck is happening to me, I have that I DON’T BELIEVE IT MOMENT, Bum I have done it again.

(By the way grandchildren, only nanny can say Bum and get away with it; you will get in trouble with Mum. If you tell her I use that word I will deny everything and blame Parky. Isn’t he useful at times?)

I now realise I am becoming one of the senior members of my family, when did that happen? I can’t believe that I am that old, who’s that crinkly grey haired person that lives in my mirror?

The only senior relative on my mum’s side is her cousin who has come to stay for a week, that’s if they can both stand it.

He is a couple of years younger than her and both are set in their ways, it will be like sorting out a couple of naughty children. I am going to fetch him round to me tomorrow. Or should I say today as I am writing this at some strange time.

I am hoping he can fill me in on some family tree information, so that will keep him amused and give mum a bit of peace.

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.