28/02/11

Feel a bit better today. Still shaking a bit and still feel tired, although I did manage to do some housework this morning. My lovely, lovely wife left me in bed this morning as I'd had a bit of a bad night, and I slept until 8 30 am!! For me this is astounding.

I have still decided I will speak to the PD nurse but she is only available tomorrow. Do you guys have any thoughts as to what I should do?

I notice that it's taken a month or so for things to change. I wonder if it takes a month when you start drugs as well?

I feel I'm at a cross roads with this experiment. We shall see.

27/02/11

I'm really sore today. All over general aches and pains. But my feet and hands are sore and crampy. I slept really badly again and I'm knackered. Shakes are not too bad today. My wife has been lovely as usual. I have decided to contact my PD Nurse on Tuesday to discuss this issue. If I still feel so unwell I will have to go back on the meds.

So it looks like my little experiments has been a failure....all I need when I feel so deflated!

Thanks for the comments and support
.
Chris

26/02/11

I think I'm beginning to feel the effects of my PD really seriously at the moment. I'm so sore and tired and shaky. If it doesn't get better I think I am going to contact my PD nurse to restart the meds. Isn't PD shitty.I'm so tired and cranky at the moment.

And I'm not happy!

I have no energy. I wonder if I made a mistake coming off the meds?

What do you think?

25/02/11

Hello all, I just got back from a road trip to Inverness which was quite good fun. But I was a bit sore and tired all the time. The excess energy expended has taken it's toll and I feel really tired today. I also drunk a bit more alcohol than usual, which is not normally an issue with me. Tired, tired, tired! TV and a nap calls. My shakes are back with a vengeance.

But the latest thing I'm suffering is I am having a bit of trouble moving my right arm and hand. I instruct my hand to move and it doesn't do it. I  have to instruct it more (with more thought than is necessary normally), and finally it does work. But this is not a new dysfunction but is more marked at the moment.

I hope these symptoms will go away with rest...or maybe it's time to start the drugs again. Only time will tell.

Best wishes
Chris

20/02/11

I've noticed the first increase in my PD symptoms since I quit taking Mirapexin and Sinemet. My shakes are a little more pronounced than they used to be. Also my ability to do anything 'fine' (intricate finger work) is a bit affected for the worst. I am not sure if this is permanent or just a temporary thing.

I'm having a short break from tomorrow for 3 days so I won't be blogging. I'll let you know what happens on Thursday.

Best wishes everyone

17/02/11

I feel quite depressed today, and I was last night. Everything seems to be such hard work. Today I had to clean the windows and it took me ages and after, I was knackered. I sat down to have a cuppa just in time to hear Mr Cameron on the TV talking about upcoming changes to the benefits. That filled me with more worry. Hohum!

Strange thing is that I kind of agree with him! While we are talking about embarrassing things, I have to admit that I like country and western and Irish music! Even had my own band once, pre-PD.

I seem to find lots to worry about at the moment. Part of PD? Dunno.

I'm fed up with feeling tired. I feel that I can't keep on complaining to  my wife, who has been nothing but brilliant! I love her so much and I know I am really lucky to know her.

Had an ok night's sleep, 5 hours but woke up really, really stiff and sore.

So, on we go. No choices

I seem to have upset a few people on the PDUK site. I refuse to be subdued by bullying. More of this later

Chris

16/02/11

No change. That's all folks!!!

15/02/11

Just a short one today. No real change to my symptoms. I'm still very tired and still shaky. But no worse than when I was full of drugs. To remind you all I was on Mirapexin and Sinemet.
Have as good a day as you can you guys.

Chris

14/02/11

I hope something romantic happens to you today.

I think that this blog's going to get harder and harder to write because nothing is really happening. Since I've stopped taking the tablets nothing bad has happened, yet nothing good had happened. I still can't play my guitar like I used to, and I don't have the physical skills I need to do my job. Status Quo.

But nothing is worse.

How I wish I could sleep properly. How I wish to feel energetic. How I'd love to get my old life back. How I need to stop shaking! I want to be happy again.

But the answer doesn't seem to be in the tablets I was taking.

Happy Valentine Day everyone.
Chris

13/02/11

No change again today. Bit sore, bit shaky and quite tired.

I've had a good day with my friends and noticed them averting their eyes politely when I tried to spoon a rather liquid yet tasty stew into my mouth. I think we could use this as a measurement of shakiness by weighing how much gravy is on your spoon as it leaves the bowl and how much is still on when you finally get it in your gob!

Today my Gob to Plate ratio was only about .4. So not very good. What's the worst G/P Ratio you've ever achieved!

Seriously, I have a general soreness all over my body. I'm going to take a Ibuprofen tablet and watch some TV.

But, again, I have to stress that these sore days are standard for me. I was the same even though I was taking the tablets.

Best wishes to all
Chris

12/02/11

I've just been reading the PD UK forum and noticed that, on some threads, people are beginning to talk about 'coming off all meds'. I must stress you shouldn't do this by yourself. Get advice from the powers that be.

I'm OK today. I am taking absolutely NO PD drugs and feel OK. I had a crappy nights sleep again and feel stiff and sore. The word OK is the right word. I couldn't run an Olympic race but can so the housework. This is no better or worse than when I was on Sinemet and Mirapexin. My shakes aren't too bad.

I have become truly concerned about the longevity of PD drugs. I have heard they only last 2/5/10 years and then stop helping. IF this is the case I think that's another reason to not start (or stop taking) PD drugs until you really have to. Is there any real evidence of this? Comments please!

I wish all you PWP a great day!

Chris

11/02/11 Part 2

After reading my own blog, I have considered something else about PD, the NHS, my consultant etc. I REALLY DO BELIEVE THEM. I am a scientist and will always prefer evidence based trialled disease treatment protocols. Not for me the airy-fairy world of homeopathy, religion. witchcraft or folk medicine. Give me the main stream medical system any day.

11/02/11

Had a dreadful nights sleep, waking up really sore on four occasions. Each time I had to move from the position I was in to the other side, which was really, really hard to do. I was a bit 'paralysed'. That's not the correct word, I needed to really think about the movements I had to make to turn over. After I had done so I was much better and went back to sleep after a few minutes.

My shakes in my right hand are quite bad today, so much so that it has taken a long time to type this post . I honestly believe that I couldn't do my job as things stand. I worked in a hospital lab doing blood tests and moving tiny amounts of potentially infectious material from one place to another. And I'm so tired!

A while ago, on my last visit to my GP (who is just so sympathetic!!) he suggested I take an NSAID drug called Naproxin for the pain at night. It is patently not working so I will stop taking those as well. I have found that a soluble Solpadene at night gives me some relief for 4 hours. I know they're addictive so I'll only do that when I have to.

My spirits have been lifted as I've just taken delivery of my new car I got on the DLA thing. I've never had a new car before and it's very exciting. Hope I can continue driving, although at the moment, I seem to be very careful about everything.

But all these symptoms were there when I was taking the tablets. Nothing has changed and, as of this moment, I plan not to restart the tablets until things gets worse. I know the prognosis of this disease and wonder what you guys would do. Comments?

Once again, thanks for supporting this blog. It makes it worthwhile for me to write it if someone else is doing so. Please tell other PWP


Chris

10/02/11

Bit sleepy today. In fact I'm a bit down and the shakes are quite pronounced. Still, this used to happen when I was on the tablets.

No change really. So, as of today, I'm going to stay off the tablets.

Best wishes to all

09/02/11

Still no major issues at all. If anything my moments of feeling OK are more numerous although I still get very tired, very quickly. More to come.

08/02/11

Had a bit of a busy day yesterday, but the symptoms of my PD were not particularly bad. Again, I go back to the word 'standard'. I was shaking a bit, but didn't get as tired as I normally do.

So far, so good. I just got another appointment to see the neurologist in May. I'm going to keep this medicine boycott up to then, as long as nothing goes awry.

Chris

06/02/11

Right, I got a bit fed up with my apathy yesterday. I decided to get a bath, dress up well and go and see some people. I was glad I did. The evening, in particular was lovely night although I did fade a bit at the end. From now on I am going to try to get out a bit more often.

That's why there is no blog from yesterday.

Today I'm quite tired, and a bit shaky but I am going out to meet friends again at lunchtime. My symptoms of PD are 'standard', niether more or less than when I was taking the Sinemet and Mirapexin.

I did my tablets this morning, and only took me five minutes to put them in my dispenser. That is pleasing.

My conclusion of the first few days of stopping the meds is that it hasn't made much difference. That begs the question : how many other people are taking meds that aren't making them better?

As the drugs are only to treat the symptoms, not cure the disease, it's probably a good idea for everyone to see if they are actually 'doing the business'.

Do you think you might be taking too many tablets?

Of course you MUST check with your doctor. I won't advocate you going it alone.

The number of readers who are following this blog is slowly increasing. Thank you for following it!

Have a good day everyone

Chris

04/02/11

Today I feel washed out and irritated. My shake is quite annoying and I feel irritated with everything. I don't know if this is due to the normal ebbs and floes of PD or a response to coming off the meds. I'm a bit down today and glad I'm not working at present. I'm worried about everything, particularly the fact that I'm not going to feel better till I die. I used to be so active but now I'm a bit useless.

On the other hand my wife is so lovely and understanding. I'm really lucky to have her. She's been magnificent.

03/02/11

Had quite an active day. although I did drool on my shirt..in public! How great is that. Today I was more shaky than usual so maybe the bad times are starting! Can't sleep at the moment. Not good.

02/02/11

I'm a bit flat today! That's all. I feel fat and tired and I need to get out and get some things going. I had a good nights sleep but am dozy this morning.

I've got upset about the PD Recovery thread on the PD UK website, and had a good old bleat on the internet. Look under the Treatment section, PD Recovery.

Shakes are standard, energy is low and I'm a bit sore today.

Best wishes to all
Chris

01/02/11

Again, nothing really has changed. Feel the same as when I was on the drugs. Nothing to report I'm afraid.

I have been asked if I noticed any changes in my symptoms from the time before I started  the meds to the times when I was taking the full dose of drugs. The answer is no, not really. The reason why I am conducting this test is because I was confused as to what was the disease, what was the side effects etc. I am not sure their has been any change to my symptoms before. during or after treatment.

I think, but I'm not too sure, that I am quite clear thinking about my condition. But I am the best arbiter of how I feel. I'm trying hard not to embellish or make up results.

I've had a couple of comments, thank you very much for being interested. Please spread the word to other interested people. I feel a bit embarrassed about advertising myself anymore.


Cheers for today
Chris