Come on Christmas

It’s getting to feel a lot like Christmas as the song goes, and guess what I may even be organized this year.

I better not get that cleaver there is bound to be something I have forgotten.

I decided to go away this year go and party, live a bit or even a lot if the company is right. I will let you know when I get back.

It’s a coach trip only as I booked it on line the coach is coming up from the south and I’m heading across country from the opposite direction. The holiday is for singles so as long as there is at least one person who hasn't found a friend on the coach I should be alright. I just don't want to go somewhere and be the spare part. Which happens when everyone else happens to be part of a couple.

Please don’t let it snow until the New Year so that I can drive myself there. I do have a backup plan my big brother. He loves driving and has a nice posh car so I could arrive in style.

I get back from my Christmas break on Sunday and I am then heading down to London for the New Year. My friend and I decided to go and see the firework display for ourselves so with all these plans and a birthday as well I am now getting a bit excited. Then of course our Parkinson’s support  group have a Christmas Dinner which I do a lot of the organizing don’t you just love this time of year.

So if some kind person could take Parky off my hands it would be brilliant as I really don’t have time for him (not much chance of that but I can live in hope)

A Bit Scary

Have I accepted that I have a condition called Parkinson’s?

If it wasn’t for my total dependence on Pills I would say no, but it really comes back to bite me when I go to get a pill and find the one I should have taken four hours before.

Is it really any wonder that I allow Parky to come and really annoy me.

This last week I have been on a Turkey and Tinsel break and had a great time. I had a go at archery, shooting and bowling besides doing quizzes. In the evening there has been dancing and most of the time I have been on the dance floor.

But miss just one of my pills and I begin to stiffen it’s a bit scary at times. I went for a swim on the first day and found it a bit difficult. I am not the best of swimmers but set out to swim the length of the pool, I was out of breath when I got to the end and went to grab the bar only there wasn’t one so I went under. I didn’t want to end up drowning on my first day of the holidays, I managed to claw my way up the wall and as you can see I am here to tell the story.

To be honest it gave me a bit of a fright and I kept it to myself not wanting to admit to my friends or myself just how scared I had felt. Was it the Parkinson’s that made me so breathless or the pills or am I just so unfit?

Stress Free?

I think it is about time I did a bit of updating.

I have been keeping myself away from any stressful places or situations as much as I can.

My motto is chill, and you know what I think it’s working.

I am also having Reflexology, which is absolutely incredible, I felt so relaxed after the first one and my second one is tomorrow so I am looking forward to that.

My wristband is paired up with my phone, not too sure if I am doing ok. What I do know is that I am going to bed a bit earlier as I am still intrigued how it works, how does it know if I am in a deep sleep or a light sleep? Clever thing.

I have also been able to set multi alarms on it so that I can take my pills on time. That’s as long as I have them with me of course, I know it makes a huge difference to me if I GET IT ON TIME.

So with very little stress, reflexology, and my new wrist band I have not had any interference from MY Mate Parky.

I do hope I’m not asking for trouble.  

Another Gadget

I have invested in a sports band after reading about them on Michel J Fox site. I did my usual trawl through the internet and bought one from amazon. Being a bit silly I expected it in a couple of days but didn’t take into consideration that it was from amazon market place.

It has come all the way from Hong Kong so now I just have to set it up, so no wonder I had to wait.

It has been quite mind blowing setting it up, I now have the alarm set so that it vibrates to let me know I need my pills. It is paired with my phone so I can bring up things like how far I have walked how many calories I have burned.

The main reason I bought it was to track how I sleep, when I wake in a morning I am usually in the same possession I was in when I fell asleep. I want to find out how deep I sleep, not sure what I will do with the information, but waking up with everything aching has become a bit of a pain so to speak.

Thought I had set it up last night but obviously I hadn’t got used to it so tonight I will put it to the test

from Pot to Boot

What an Idiot I am, I somehow missed a step and landed flat on the floor. Well not quite flat as I managed to hurt my left foot graze the knee. My palms also have graze marks and to top that off so to speak I have a graze on my face. The thing that hurts most is my dignity.

How could I miss a step, I bet it was Parky?

My big brother took me to the hospital where after the usual long wait I ended up with a pot on my left foot. Next day my daughter took me to the fracture clinic where the pot was replaced with a boot, so I look like I’m wearing a moon boot.

I asked the guy who fitted the boot would I be able to drive with it on as I have an automatic car. He said the best thing was to ring My Insurance Company.

When I got home that’s what I did to be informed that it was up to a Dr to say if I was fit to drive.

The next thing I did was phone my Doctors surgery to be told as they hadn’t seen me I had better get in touch with the hospital.

So I rang the hospital but as it was Friday there was no one there to help me.

Oh well I suppose that means I will have to be good and rest.

 from this









to this

Can't Blame Parky

Well I have ended up doing what I had managed to evade for seven years.

I have a Toyota Yaris with the smart unlock on it, as long as the key is in my pocket or handbag I can put my hand on the door handle and the door opens. I can then start it by pressing a button.

Many times I have taken my handbag to the car to see if the door opens instead of looking through all the compartments. If I go to the car to move it I tend to put the key in my pocket and there is where it was when I washed my trousers. I think I have known that eventually this would happen and am amazed that I have not done it before.

When I opened the washing machine door and saw it in among my cloths I thought it would be well and truly dead.  So I was well impressed when I tried it and it worked. The leather fob didn’t do the washing a lot of good but at least I had used a cool wash.

I wonder if they test keys in washing machines for idiots like me?

The thing is that although I blame most things on Parky I think this is probably all down to me. 

Yes or No to new Gadget?

A gadget that would monitor your Parkinson’s now that is well worth looking at.

Michael J Fox is looking at the possibility that smart phones or exercise bands could be used to collect data about your movements. That’s used alongside medication information, such as have you taken it and what time. It could be used by the Doctors to see how your medication is working and if the information is sent direct to him then there is no reason to worry when your pills are changed.

I’m thinking great where can I get a monitor and how do I get started, then I think hang on a minuet, who is going to collate all this information?

We definitely have a shortage of Doctors in this area, seem like Sunny Skeggy is not every ones idea of a place to live and work.

We have thousands of people who come to stay in mobile homes for holidays, many of them however stay in them for the entire time the sites are open, which could be 10 months of the year.

The emergency services struggle to cope. We have a cottage hospital that from time to time gets threatened with closure and an extremely ageing population.

It’s not just emergency services but the whole infrastructure. Can you imagine how much extra c—p is produced no wonder the aroma from the local sewerage farm leaves a lot to be desired.

I am not against the holiday makers coming in fact without them we would not be a holiday resort.

Somewhere along the line someone (I have no idea who) must see that there is a need to upgrade the basics to cope extra.

So maybe for now I won’t use a smart phone to keep track on myself in case it tells me things I really don’t want to know and then have no one to discuss it with. 

Great Meeting

Well it is the last Friday in the month so it was Parkinson’s get together day. We had a good turnout.

First it was really good to meet our new support worker, I have a feeling that she is going to be a great help to our members, I am impressed.

Then to make things go a little bit better we had a lady from Healthwatch Lincolnshire, this is an independent local organisation giving everyone a chance to “speak up” about their local health and social care services.

Boy had we got a lot to tell her, from the fact that appointments don’t seem to be set up for seeing your consultant to patients not being told that they no longer have a consultant, as he no longer works at the hospital you attend.

 Worry about medication being monitored is a big concern for us all. The cocktail of drugs we are all on makes for a scary time when you get to see a consultant at best every six months.

This is a rural community and whoever we go and see means traveling, so I know it’s an old plea but doesn’t anyone think a Parkinson’s nurse would help to alleviate the problem. Clinics at doctors or small hospitals would help and I’m sure Consultants would cope better with the patients that they need to see.

I see this as a win win situation.

The best benefit of today was that the Parkinson’s Support worker met the Healthwatch worker  so I hope it is a case of WATCH THIS SPACE

On a Mission

I have just come home after a family holiday at the Italian Lakes. Even if the weather wasn’t always that great we have made the best of it and had a brilliant time.

I even managed to leave Parky behind how good is that, because I was sharing a bed room I had no choice but to go to bed at a sensible time and I have slept longer than I can remember for a long time.

No ending up playing games on the computer, no forgetting tablets because I am wrapped up doing something quite meaningless.

I have taken my pills when the buzzer has gone on my alarm, I have walked miles and been fed regularly. I can’t blame my medication all the time for my bad ways so I am now on a mission.

I am going to try to change my late night habits, no not try I am GOING TO DO IT.

A new way of life starts here

I Live by the Sea

I live in a seaside resort that is the holiday destination for many families. We have many attractions and if the weather is good the best of these is a long sandy beach. But the holiday season is extremely short which makes it tough on local businesses.

Many all year round new ideas have been thought about and then come to nothing. I remember a casino and a marina; there was the idea of trips by boat or hovercraft over the Wash to Hunstanton which is on the Norfolk cost and can be seen on a nice clear day.

The latest idea is an aquarium which sounds like a very good idea; it would be in keeping with the surrounding area and a big attraction when the weather is at its usual English best. Let’s hope the local planners jump at it. We may even attract other people to invest in our Seaside and bring it screaming into the 21^st century.

We can live in hopes

Parky Came Too

The short break I have just been on started out fine. On the first day I had been for a walk to buy the shampoo I had forgotten to take with me, and then spent the evening dancing until no one was left on the floor.

The next morning I awoke with a gurgling tummy and cramping pains, this led to a bit of time on the loo. I could cope with that but boy did Parky step in, my medication must have gone through me which was an open invitation to him. He really took control, locked my neck, stopped me from dancing and was his usual pain in the bum.

I have been doing so well that it comes as quite a shock when he’s back. I was timing out before it was time for my next pill, that was four days ago and I’m still under his control. If he thinks that’s how it will remain he is so wrong he may have won a battle but the war isn’t over yet.

Outing with Granddaughter

Today I have been to the Lincolnshire show and taken my eldest granddaughter, being as she had finished her exams and didn’t have to go into school. So it was she and me day.

We were out early and made it to the show ground not long after eight, I have never been there that early before and it was well worth the effort.

The show lasts for two days once a year, what must have started out as a livestock show now has everything you can think off.

We had to leave early but managed about seven hours and covered about a third maybe less of the site. By the time we left it was difficult to get around as there were so many people milling about. So that early start had enabled us to see thing that we would have had trouble seeing later.

The last few hours were spent at the small ring that had things like the police dogs and two girls dancing on the backs of horses. There was a man with the ferrets, and the guy who had vultures and eagle owls. We also saw a demonstration of chainsaws being used to carve birds and mushrooms out of big chunks of wood. I must say it was very impressive.

While all this was going on the Red Arrows were practicing in the sky above us, magic.  

I have had a wonderful day out with my granddaughter, and am delighted to say no Parky. I drove us both ways and never gave it much of a thought, so I am really happy about that.

  

I Have Been Lax

I have been so lax with “My Mate Parky” and that’s probably because everything seems to be going fine.

I now concisely avoid stressful situations; I walk away, so if I upset anyone by doing this well that’s what is called self-preservation.

Perhaps it has been the years of worrying about everyone else that has allowed Parky to come into my life, could stress be the channel he uses to find his way in. It would be interesting to know if Parky people have been more inclined to react to stress.

I went to a Parkinson’s UK meeting in Loughborough which I felt was very informative. I was also very pleased to hear that they wanted our input that’s us the volunteers.

It was very good to hear what other groups do, not only to raise money but also for their members, I couldn't help looking at the gentleman who’s from a group about 30 miles away from me. We agreed it would be great if we only had the same amount of professionals working in our area. We are still short of a nurse and I can’t see us getting one. It seems that a new support worker has been taken on so that’s one step in the right direction.

I have been on holiday, what is new about that I hear you say? I did some archery and some shooting, it was great fun I really enjoyed it. Didn't do too bad for a beginner. I also went on one of those Segway ride on things (I want one). I could zip round and leave the people on mobility scooters standing, mind you it would be no good for shopping nowhere to hang a bag.

Fight is on Again

It has been pointed out to me that I haven’t written my blog for a while so this one will have to be a bit of catching up.

I have had a week away on the Isle of Wight and managed not to disgrace myself like the last time I was there (read my 999 blog 19/4/2013).

The thing I managed to do this time was to forget one of my tablets. I had put all of them into one of those seven day dispensers so that I knew I had extras in case of an emergency. I went to get the first mornings but realized I had completely missed out one that I take twice a day and it was the same in all the boxes what an Idiot. I really dreaded admitting to my friends what I had done but to be fair they didn't make a fuss but I suspect that they also thought I was perhaps more than an idiot. That meant instead of a trip out I was chasing around to get my prescription sorted, I was a bit worried that it would be impossible for me to get them at such short notice. Thanks again to the lovely people who live on the Island I was once again sorted out.

The week before I had been asked to give a talk on Parkinson’s to the local Hospital Watch and me being me jumped in head first, the fact that it was for the same night was a little off putting so I phoned a friend. Her husband has PD and between us we help run the local support group. When she asked if I needed help I said YES. We made a remarkable team; she started by explaining what PD was, facts and figures and that sort of technical stuff. Then I explained what my life was like living with Parkinson’s, I started to stiffen up a bit which I think brought it home to everyone how difficult things can get. I had made a list which I nearly stuck to so I was very pleased that I had managed. Then it was back to my friend who explained about our lack of a Parkinson’s nurse in the area and the general feeling of being abandoned.

We were asked lots of questions which was very encouraging it meant we hadn't put everyone to sleep. We came away on a high as we felt that we may have managed to reach the right people to get the ball rolling once again in a fight to get our nurse.

So now the fight is on we need a PD Nurse.  

Shop on Line

I think I am beating my shingles; the intense pain I have been told that I would get seems to be bearable so that’s a few less pills to take.

I had made a graph so as not to confuse myself; of course it doesn’t help if you forget to fill the graph in. WHAT AM I LIKE?

My spots are not as aggressive now, and I didn’t wake up last night to take pain killers as I have been doing up till then.

I’m also dead chuffed with Parky; I honestly thought he would be in his element. I have even cut down on my Stalevo as I felt I had gone back to staying up late and playing games on the computer. Now that the dose has gone down there have even been a few days when I don’t turn my computer on until I want to do things like this. Yesterday I did our local groups newsletter and then turned off the computer

I’m also hoping that my appetite might improve as I often get a good way through the day and realise that not only have I not had breakfast but I have not had lunch.

Yesterday I decided I needed some food in at least if there was plenty about it might jog my memory so I did shopping on line. Looking at my order it seems that I have gone for puddings and cleaning things with some fruit thrown in for good measure. It’s not the same as wondering around the store looking for inspiration and I am wondering if the bananas I have ordered will be how I like them?

  

Pills Parky or Shingles

How do I juggle pills when I now have a load more to take, I have Shingles so I came back from the Drs armed with antibiotics and pain killers.

I am a bit confused which can be taken together, do I space them out or take them at the same time as my Parky ones????????????

The Dr was very nice he told me it would get worse before it gets better, lovely just what I wanted to hear.

How long do I keep myself away from anyone who hasn’t had Chicken Pox? If I feel bad now how bad is it going to get? That’s just a few of the thoughts going round in my head.

Then to top it all I missed my grandson’s birthday party today at the chocolate café, how bad is that, I’m well miffed.

I had to get a friend to get me some chocolate when she went shopping to try and get over it.

Seems like I had better have an early night, I think I am feeling a little dopey, is that Pills, Parky or Shingles? 

Parky and Web Design

I am trying my hand at web design; our local college is doing a course on a Friday morning starting at nine.  I don’t usually get myself going as early as that so I will have to get to bed early on a Thursday night. MUST REMEMBER ALARM ON PHONE. Better put it out of reach as well so I have to get out of bed to stop it maybe change the ringtone to something very annoying and loud that should do the trick.

I had done the first week then came home to play. Never quite as you remember or should I say as I don’t remember it. I am using one of those dedicated sites, simply follow instructions and do a basic web site for my brother who has taken over our parent’s camp site; all I can say is role on the next lesson. MUST REMEMBER A NOTE PAD, and a pen might come in handy.

You are probably wondering how I managed to set this blog up if you haven’t read my very first one. It was easy my eldest daughter did it and I haven’t changed the basic bits from that day. I still have the same colour scheme and I am still sky diving, well only on the photo.

When I get going I want to do one for my local Parkinson’s group, I may even put a link on here then you will be able to see what a happy lot of Parkies we are in Skegness.

Don't Travel With Me

Although it has been a sad time as I have been to a family funeral, I am delighted that I managed to go by train to the south of London. This meant changing trains and of course the underground. I was very confident as a very kind person on the train had looked up the root I would have to take. A piece of cake it was so simple, from Kings Cross the main line station all I had to do was find the underground, I could do that. Find the Victoria line, again no problem. Get on the train going south, well who could get that wrong? And get out at Vauxhall for the main line south.

The trouble was I hadn’t banked on the Victoria line being flooded and somehow this ended up with quick drying cement in it. Honest I am not making it up, some of the electricity wires were covered in cement. Mind you I only found this out later on the television news.

The thing is I managed and Parky didn’t interfere, how good is that? It has given me quite a boost I went to London and back by myself YIPPY. I had spent quite a while traveling all over the place on the underground as I was directed and redirected without  hardly a whisper from Parky.

The funeral went off extremely well as funerals go. It seems that funerals are the place to see old friends and in this case make new ones. I stayed with a nebour who I had never met before and was made so welcome aren’t there some lovely people about.

Talking about lovely people, three of my daughter’s friends who had obviously been primed by her also played their part in making the day easier for me. Thank you girls it was really good to see you and didn’t I warn you that you would be BLOGGED.

On my journey home the train was delayed as the police had to get on and I think they removed someone so if you want a stress free outing it would be best if you travelled at a different time to me.

Flat Pack Conundrum

I decided it was time that I updated my working area in my office. How come that by sorting one room out I end up making a mess of the rest of the place?

I sent for a flat pack desk, I really enjoy getting stuck into one. I have even volunteered to help other people so that I can get my hands on any kind of flat pack.

This one turned out to be a bit of a nightmare, I followed the instructions (not bad for me) but it wasn't fitting together as it should, I hadn't started cursing but I was very very close.

If you have ever taken on one of those flat packs you will know what I’m on about if not it may seem I am talking nuts.

There are these locking type connecting metal things for joining pieces together. Usually they are in a bag so that you can put them in the holes provided, but it seems someone decided that it would be a good idea to insert them at the same time as the hole was made. That was a very fine idea what they failed to realize some of the bits they were removing remained in the locking piece making it impossible to put the connecting bolt in.

This I found out after a lot of joining and taking apart so then I turned the place upside down looking for something to remove the pieces.

What would have taken me a couple of hours took me a couple of days.

I am sat at it now; the draws are full so is the cupboard so fingers crossed it stays together, maybe it’s a way of telling me to give up flat packs NNOOOOOOOOOOOOOOOO.