Friday, 29 August 2014

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

Saturday, 16 August 2014

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

Saturday, 19 July 2014

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 21st century.
We can live in hopes


Saturday, 28 June 2014

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.


Thursday, 19 June 2014

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.
  


Monday, 16 June 2014

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.

Wednesday, 2 April 2014

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.