Bit of a Yoyo Time

My reduction of my Requip has not gone as smooth as I would have liked. I came down reasonably easy the first two weeks and was quite confident to attempt the third week. I had been dropping 2mg at a time, so I was down to ten. Oh boy that was Parky’s delight he came dropping in like a bomb.

I was so stiff that even with the help of the extra in my other pills I was not coping at all, scared the sh-t out of me. I even had to ask number one daughter to help me off with my bathing costume when we went swimming.

My arms were made of lead and doing small tasks was made so difficult, as I was going away for a couple of days I had to give in and go back to 12mg.

BUM BUM BUM, I just hate the fact that Parky has got such a hold on me, if for some reason I couldn’t get my pills what would happen to me???????????????

The good news is that I am back to being a lot more frugal to the extent that I am starting to worry about the amount of money I have frittered away over the last few years.

I am now being extra careful and at the moment living out of the freezer and the cupboard; it will be concoction time again. When I put a plate of food on the table and say you haven’t had this before and you will probably never get it again as I won’t remember what went in it. Well I have had some cracking meals made this way.

So the quandary is do I stay at 12mg for a few more weeks or do I try again before I see my neurologist?

Back from Wales

I am home after a few pleasant days being taken up hill and down dale by a good friend who invited me to South Wales along with my camera.

Thank you R for being my chauffeur, my guide, and for trying to do the impossible task of getting me to pronounce those Welch names.

The scenery was spectacular and the people very friendly. The weather was a bit hit and miss but who’s bothered it’s only water.

The only thing was as I have been reducing my Requip I found the last couple of days I was not at my best. I know that I tend to go quiet and withdrawn but as Parky makes it difficult to do things, the concentration becomes overwhelming.

The good news is that I am now down to 10mg of Requip in a morning and have only to come down to 8. I know I time out and have to take my other pills at the proper time, so am concentrating on hearing my watch pinging at me every four hours.

I was at a house where the dog suddenly started barking he had heard the alarm before me, but boy do I know if I have gone over.

Parky puts me into robot mode, I start to stiffen. I think my neck and mouth go first, it’s as if I have had a drink too many. I am conscious that I’m slurring and I think I go a bit light headed; my limbs don’t seem to be in coordination with each other.

Optimistic

I have had my appointment with a new for me Neurologist; you can’t believe how much my faith has been restored.

I feel like I have come out of a black hole and found my old self, the one that is going to fight tooth and nail to make Parky behave.

The dreaded Requip is in the long run to be halved, this I will do at a slow pace. I am to be good and take my Stalevo every four hours. I have even bought a watch that has five alarms on it, no excuse now as it is set up.(thank goodness for grandchildren).

My Amantadine has been doubled, so that’s two a day instead of the one that I have been on for years and years.

Then to top that up I see him again in two months, I am over the moon. Doesn’t take a lot to please me???????????????

I feel confident for the first time in ages that I have the backup that I need to cope with Parky.

Perhaps all of us who have a condition Like Parkinson’s would fare better if we had someone who could give us the gift of security.

To know that whatever we are fighting in life is not done in that Black hole of despair is all that we ask.

I asked a doctor recently if she knew anything about Parkinson’s and was given the answer off course she did. I told her that in the past I had seen doctors that had admitted that they didn’t. Her reply they should not be practicing.

When I mentioned the addiction caused by the medication, I got the impression that she didn’t believe what I was saying, so I shut up. I think I would rather have the Doctor who said to me I don’t know much about it but I’m willing to learn with you, than one that is a bit miffed because you asked the question.   

Thank you Ged and Phil

A couple of months ago I found in my emails a list of dates when Ged Roberts would be doing his “Gigs”. Quite to my surprise one of the places was a town in Lincolnshire not far from where I live. I persuaded my friend to go with me, which was easy as like me she likes a bit of a do.

The venue was a new Restaurant with the name of No. 20 in a place called Sleaford.

An evening of tapas with music from Ged Roberts and Phil Gibson from the Drifters. When we left the hotel to go to No.20 there was a couple who overtook us all dressed up. My friend and I looked at each other and commented about the fact that they must be going to the same place why else would they be dressed up on a Monday night.

They turned out to be at the next table and we ended up chatting in-between dancing and eating.

I met Ged when he was the playing and singing for us on a rhine cruise, he writes a lot of music and it was listening to one of his songs on headphones that L realised that I was crying, I told him I couldn’t buy that one as I didn’t think I could cope with it. I don’t know if it’s my strange ways or his excellent memory but he remembered me and also my name.  

We had a cracking evening; the two of them work really well together bouncing off each other.

The food was excellent, the atmosphere great and those around us very friendly

On the Rhine cruise I had been fortunate enough as to have two dancing partners, (perhaps that’s why I was remembered). Unfortunately no spare male dancing partners, but as usual we did not let that spoil our enjoyment.

I even drank sangria and Parky didn’t do a thing about it, although I was late to bed I went off to sleep quite quickly and woke up feeling fine.

Maybe Parky is getting bored, maybe he’s fed up off sitting at home, not that long ago we were in Peru.

He has been a bit of a pain in the bum since we got back, but that could be my fault I am so obsessed with cutting down my pills that I got to the point when I knew I had gone too low, it gave me an insight into how my life would be without those same drugs that have altered me.  A STIFF, SLURRING, NONE TALKING ME.  I would have to ask for help doing the most basic of things, not be able to come and go as I please.

Perhaps it was good to be aware of how life is balanced so that I don’t take for granted all the things I can do even when Parky is holding on tight to me.

Well Ged if you ever read this I think I am about ready to tackle the music that made me cry.

A message to Jimbo

I had a message from this gentleman after I did the blog on Prosavin

“Yes I've got this Parky following me round as well. The bastard has been following me for over 12years and its getting to the stage where he is in the chair and I am under it. Yes I too blame him for most things including shear laziness and lack of drive. Come on Prosavin is what I say. These trials are far too tedious. In the Parkinson’s community there are heaps of people who are being squeezed into a corner with only death as their saviour”

Hi Jimbo

I know where you are coming from, but fight the “B” never let him have the chair and as for death it would also be a “B” if you died one day and they found a cure the next.

Benefits of Parky

I have been reading the comments that people have left on this blog and I want to thank every one of you. I must admit there are times when I wonder have I now rattled on long enough is it time to bring an end to My Mate Parky? I also want to apologies for not replying too many of you.

I started writing this in October 2010.My reason was to get all the things that were building up inside my head out. Have I done that well I can’t say I have, as one thing gets sorted something else manages to slide its way in.

In some ways having Parkinson’s has enhanced my life, I help with my local group and can number among my friends some very special people.

Would I have gone to China last year and Peru this if the threat of how I might be in the future wasn’t hanging over me? I think they would have always stayed on my wish list and what a great experience I would have missed.

I would not have done my sky dive which even now brings a smile to my face,

Thursday I am organizing a stall at a local charity afternoon tea, so instead of being in by myself I shall be hoping to meet fellow Parkie‘s or anyone who wants to know something about us.

I am ever so slowly admitting I have Parkinson’s and please can I have some help, I have told someone very close to me that complaining to me just sets me off and if they really want me to visit they will have to be more positive. To be around negative people is the worst thing a Parkie person can do.

I still stay up a bit longer than I should; I still try to do things by myself because that’s what I have always done. Then I tell other not to be so independent, to ask me if they want help.

But then again is that what I would be without Parky by my side, I expect that is just how I would be but without the excuses that Parky gives me.

That means that for the moment I will carry on blogging, even if no one reads it, who knows one day I might find I have got my head around My Mate Parky

Long-time no Blog

Have spent time gardening between rain showers this week. That’s because I have given up the idea of moving, once again I have looked around and know I can’t leave.

There are not only memories here but a load of possessions, I know that in the future I will have to downsize but for the moment I really can’t face the upheaval.

Hence the fact that I have to get myself into gear and do some sorting out. So as its summer (well supposed to be) it seemed a good idea to start outside.

I have been painting fences, I was hoping to win the lottery and have a brick wall built, but as the win eludes me I will have to stick with my fence panels that need painting every now and then. I must admit that I do like my paint sprayer I think I would have given up after the first panel if I had carried on using a brush.

Parky was not going to be good if I had carried on with a brush but he soon settled down when spraying started. I couldn’t believe how much better it went.

So that’s my reason to try any gizmo I can. No paint spraying No fence painted which would have meant paying someone else to do it. I must be saving loads of dosh.

Did anyone read that there is a link between DDT and Parkinson’s; I think we could have all told whoever was researching that fact that we already knew it to be true.

Sleep me Better

Hi it’s been a while since I did a Parky Blog, I have not felt like putting what I feel into words.

I am waiting for an appointment with a different neurologist and now realise that my appointment with the one I’m with is due. Do I cancel or will I end up not seeing anyone at all.

I really want to sort out my pills and seem to be thinking of nothing else. Then to finish things off when I picked up my prescription I have been given a different brand of Ropinirole, instead of Requip I have something called Ralnea which is the one that I was on when I thought I was going downhill fast.

I just think BUM I can’t be bothered to fight another chemist.

I can’t be bothered to fight at all, perhaps I need another holiday. Tropical skies, bowls of fresh fruit, long cool drinks and pills all sorted.

Parky has been around a bit lately, perhaps more than I myself realise.  It’s not until my friend asks me if I’m feeling better and says she was a bit worried about me that I admit to myself that perhaps I was not up to Par.

I do tend to lock myself away and sleep away my troubles.

So good night all I feel sleep coming on.