Parkinson's Get Together

Today was our once a month Parkinson’s support group meeting, I do enjoy the time we spend together. There is no one who understands a Parkie Person like another Parkie Person, we can laugh about our symptoms, chat about are medication and brag about things we have managed to accomplish.

Today our local Parkinson’s nurse came to have a chat, I say local he works from Lincoln hospital which is about 40 miles away.

Not as many members today but that didn’t stop the ones there from asking a lot of questions.

I found out why my Neurologist told me not to lose weight, it seems the new thought is that we should take into account our weight when sorting out the amount of medication that we need. I suppose its common sense when you think about it.

I have now taken the next step in reducing my Requip from today I am on 8mg in a morning that makes it 12mg lower than my highest. YES.

So long as I can do the things I want to hands wise I am happy. Just got to remember to take those pills on time which is not the easiest of things, if my watch starts beeping and I am in the middle of something I think I will just finish then get them, then it’s usually a BUM BUM BUM an hour later.  In fact it’s a good job that I put the days tablets in a pill box so that I can see if I have taken them or not.

Neurologist then Mr Sedaka

Last Tuesday it was my second visit to my new Neurologist, he gives me a feeling of complete confidence.

I was weighed and had my blood pressure done which I don’t remember happening to me before. I realised that he was watching me from the minute he saw me and was aware of everything.

Medication has been tweaked a bit more so let’s hope things will get a bit easier. I am also pleased to say I drove the 30 odd miles to see him and felt great.

I was good though I let my friend drive back I know she likes to get behind the wheel of my car. My car has smart unlocking which means as long as I have the key about my person or in my bag it will open, so it is a bit of a joke between us that I let her drive but don’t let her have the keys.

Well Thursday I gave in and gave her the spare key the least I could do as we went to Nottingham to see NEIL SEDAKA wow and an extra WOW. It was a great concert, the supporting act was probably no the right one and I think people were getting a bit restless but as soon as Neil came on the atmosphere was electric.

He sang all the songs that I had rock and rolled to way back in the 60’s. Oh Carol, Happy birthday sweet 16, and Calendar girl just three of a long list that brings back so many memories. His new stuff is just as good and of course I bought a C.D.

We had a great time, why has it taken me until I’m nearly 65 to go to a concert? I want more.

I sat next to a very nice man but true to my drop in Requip I didn’t get involved, not much flirting and I didn’t even find out his name.  

When I was at the neurologist he said I had lost weight and he thought I should try to put it back on again about half a stone. I quite like myself a bit slimmer so to go to the concert I dug out a dress that I have only wore a couple of times as it was a bit tight and it fitted. The daft thing is that the zip is in the side and as it has short sleeves and is very,very fitted it’s not the easiest of dresses to get on. That also makes it not the easiest to get off.

It was a good job my friend and I were sharing a room as I would probably have had to sleep in it, Parky was no help what so ever in fact the more I tried the more he hindered so it was J to the rescue. Thank you so much J. I will even let you have the keys again. (Especially if we can go to another concert)

The Real Me???

Next week I go to see the neurologist again and report on my attempt to cut down on requip. I have not managed to get down to the 8mg that he would have liked but 10mg doesn’t seem too bad. It was a bit of a no go trying to get down any more. Parky sure made his presence known he was back like he had never been away, in fact I can’t remember ever being quite so stiff and not in control of my limbs.

I have yo-yoed a bit going down to 10 back up to 12 then after a week trying the 10 again so let’s hope that I can manage to come down the last 2mg. Think I will leave it till after my appointment.

I am not quite as dextrous as I would like to be, but on the plus side last night I was in bed and asleep by 10.30. I woke about every hour but turned over and went back to sleep.

This morning I have excelled myself I have cleaned windows with the help of my latest gadget, a steam cleaner. It is incredible I have steamed the kitchen, the bathroom, the shower room, freshened carpets. It takes a bit of juggling when my hands are not doing what I want them too, but I managed and that’s a very satisfying feeling.

I hope the light at the end of the tunnel is at last a reality, perhaps the real me is not as far away as I had thought.

Is That a Light I Can See?

I have I think started to get used to the drop in medication, was a bit worried when I started to get stiff quite often.

Every ache and pain was the fault of the change in pills!!!!!!!!!!!!!!!

Then there were the times that I had to put my dressing gown on after a shower as my hands didn’t seem to be able to use the towel to dry me. (Oh the frustration)

My friend told me that I looked ill which was very nice of her; and even said her mum had made the same comment when she had seen me. She was very concerned that I was dropping the Requip a little bit too fast (I am back down to 10mg). I value her input as she went with me to the Neurologist as a backup memory, I have taken what she said on board and so I am putting off dropping down to 8mg. So thank you J for keeping your beady eye on me I sure need it.

I am meeting a friend this weekend so want to be able to manage the train journey I also don’t want her to spend the weekend looking after me.

Today I feel a lot more alert, have taken my pills when the alarm on my watch beep beeps. I went to bed before midnight last night and went to sleep.

But most exciting of all I started doing things around the bungalow and forgot to turn the computer on. WOW.

You will notice that it doesn’t take much to excite me.

I am now quite happy to be single and in charge of the remote control in fact instead of spending time on the computer I have been watching some of programs that I had sky +.

I have treated myself to a heated under blanket for my bed, wow what luxury, so off to bed early nice and toasty.

Well what about Parkie?

He doesn’t feel such a threat at the moment; I know that I have good people around me my family my friends and a consultant plus Parkinson’s nurse  who are I know I can talk to.

WHO COULD ASK FOR MORE?

Update on Parkinson's Chat

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 parkie

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.