06/03/11

Well, this blog has rather run its course now. There seems little point in carrying on now that I'm taking the meds again. It was an interesting time, one not to be repeated.

My conclusions are that I certainly do have PD, I feel crap with the tablets but crapper without. It also takes a month for things to change after you stop or start meds.

Thank you for following the blog. Best of luck everyone who paid attention. Hope you can sleep!!

Chris

05/03/11

Just exactly the same as yesterday. Maybe I'm having hallucinatory smelling issues because I have a strange smell in my nose. (It's NOT me!!!) My motor skills are markedly reduced today, but the shaking isn't too bad.

Tonight I have to go out to family meal.

04/03/11

I've had a 'middling' day. Nothing extraordinary to say. My movements are very slow and last night I tried to play guitar and my double bass for a few hours, demonstrating the lack of  'fine movement'. Today I wouldn't like to run a race, but I'm ok for daily life.

I'm still taking the 3x62.5 Sinemet.

See you all tomorrow!

03/03/11

Yesterday I managed to take 3 lots of 62.5 Sinemet during the course of the day. Now I know this is silly but I THINK I feel a bit better. I know this is highly unlikely as it takes weeks to work. However, I did sleep better but still feel tired this morning. I have also just noticed that it is still quite slow and hard work to type this post.

So, the experiment ends. I will carry on with the blog, to see how well I get to feel. I will see the Neurologist soon, but today I have to see my GP for some more tablets.

We shall see!

02/03/11 Part 2

Finally managed to get hold of the PD nurse who was polite and understanding. I told her of my decision and she immediately organized for me to do 1 week of 3x62 Sinemet and then up it to 3x125.

It seems that there were notes telling her what to do when I came crawling back to the fold! They were expecting it!

So, I start on the drugs again albeit this time without the Mirapexin. I don't know if it's worthwhile keeping on with the blog.  Might see how long it takes for any improvement. What do you think?

I think it took a month for the meds to clear my system, leaving the disease raw and in full force. I now know what it's like to have PD and have no drugs. Not nice!

Do you think I should carry on with the blog?

I'd like to thank the PD nurses, the neuro and his team and loads of other people

Best wishes
Chris

02/03/11

I'm tired, knackered, exhausted, miserable. shaky, depressed and definitely not happy. My movement skills are not good and I am having trouble typing this post. There is no way I could work at the moment.

I NEED to contact the PD nurse today, to get back on the straight and narrow with something to counteract this feeling.

Last night I lay in bed, awake for the fourth time, and had a little cry! How sad am I?

At least I know what I feel like when I come off the meds. I will not try this again and might print out this blog just to remind myself.

God, I hate PD!

01/03/11

Right, that's it!

Today I made decision to back on the meds. Last night was intolerable. I am so sore and today I was so tired I had to go to bed twice. My motor skills are affected and I'm much slower than I was. Shaking is not too bad.

I tried to contact PD Nurse today but couldn't get through. Will do it tomorrow.

I'm not happy but I understand a lot more. Have to play bridge tonight with some dear friends. I'll try and perk up.

Chris

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

31/01/11

So far nothing significant is happening. I feel the same as I have done for 2 or 3 years. No extra wobbles, pain, sleeplessness, stiffness or anything. Maybe I'm cured!!!!!

I now wait, in trepidation, for the onset of more severe symptoms.

But so far, nothing untoward to report.

I had a walk today but felt a bit unfit, if you know what I mean. Not at the best of my physical form. Are you?

30/01/11

I feel rubbish today. I woke up 5 times last night, and had to move into the spare room to complete my sleep as I was disturbing the other half. I have woken up groggy and tired and simply down in the dumps. My shakes aren't particularly bad but I just feel slow and lethargic...I couldn't run a marathon today!

As from today I am off both the Mirapexin and Sinemet. I haven't started howling at the moon yet, but I'll tell you if I do.

Isn't it strange how variable PD is. Do you guys get this problem? Comments please

29/01/11

Another 'nothing to report' day. I feel standard, neither good nor bad. I'm a bit listless but that's not unusual. My shakes have not intensified with the lack of treatment nor has it gone away. Everything is as it was yesterday!

I know that these drugs need some time to kick in so I assume they take sometime to kick out, if you get my drift. In a couple of days I will have stopped all PD drugs except the NSAID I take at night.

Another thing, after reading all the nightmare stories of gambling, hypersexuality etc I am glad to report that these symptoms never effected me even when I was taking them, so I can't comment on that subject.

I didn't have a drink last night so I didn't have the hangover from hell like I did yesterday!!!

Anyone got any idea of when I can expect changes in how I feel? Days, weeks, months?

It was my Dad's 83rd birthday today. He seems to have more energy than I do.

Best wishes to all
Chris

28/01/11

Really knackered today. Only got to bed at 3am as I was out listening to some music. I had to go back to bed for 2 hours this morning as I was incapable of staying awake.....but this is ALL my fault!!

Otherwise I'm on the same dose as yesterday. I have no significant changes to report. My right hand shake was quite bad but, as usual, no worse than it can be.

I will go to bed early tonight, and see if there is any improvement on today.

I feel the 'punishment' I got from my PD from one night out was excessive. It was a hangover from hell even though I didn't have that much to drink.

I wonder if other people with PD get really bad hangovers? Comments please, I'd like to know I'm not the only one!!

Best wishes from a subdued Chris

27/01/11

Today I am on 2x2 100.25 Sinemet only. Last night I had quite a good nights sleep although I did wake up three times to 'move'. I find that waking up in pain is my major symptom of PD and it starts your day off badly. I have forgotten to state that I have started taking Naproxen 500mg (a NSAID anti inflammatory pain killer) at night to counteract this problem. It seems to work a bit I think, making my night a bit more pleasant.

I feel typically tired this morning, but no different than normally. My shakes in my right hand are constant but, again, no worse than usual. I am going to walk into town to relieve my stiffness but that is again normal for me.

So, even though I have only started this experiment for a few days, and haven't finished weaning myself off the meds, I feel like there has been no significant change to the way I feel. to date.

I wonder if anything will happen, and if so, when?

Thank you for making the effort to follow this post. I am finding it quite cathartic as it forces me to analyse how I feel, and gives me a record for posterity.

If you know of anyone interested in this blog please inform them

Cheers for today
Chris

26/01/11

Sorry that last post was so short but we had visitors.

To carry on, nothing has changed very much, I'm more tired than yesterday but less so than when I was taking Mirapexin. The shakes are around, but not anything abnormal for me and my PD.
If their was any deterioration it in the mobility of my left hand. I feel that my fine movements are less fine than normal but I have bad days and good days anyway.

All in all, no real change.
Tune in tomorrow folks!!!!


Spam

26/01/11

I thought no one was particularly interested, but it seems I was wrong, thank you

I'm completely off the Mirapexin now and have been for a little while. I am taking 2x 100/25 Sinemet twice a day rather than three time a day I was on.

I have had no real change to my well being. If anything I feel a bit less tired through the day and I think that directly related to stopping Mirapexin.

I had a nightmare last night involving a yacht and a fear of the sea, but after I woke up, I was OK.

Chris

End

I am aware that no one is interested, so I'll stop

22/01/11

No difference today, feel OK but not brill. Same dose as yesterday.
We had some friends over to dinner last night but I had to to bed a bit earlier than them as I 'conked out!'
I really want a quiet day and night,
No one from Parkinson's UK is looking at this blog, so I might stop soon...become a follower
Spam

21/01/11

No different. Woke up twice last night but that was to go to the loo as I had a few beers at a pub last night. I went to a music pub where I used to play guitar and sing. I've had to give up guitar but now I have a double bass, which I can still play.

If anything I feel a bit more alert today, but it's too easy to say if thats permanent.

Taking 6 x Sinemet 25/100 today but no Mirapexin

No real change yet

Someones given me a trombone, poor neighbours!

Stopping my PD Drugs

Hi all

My name is Chris, I have Parkinson's Disease, which is miserable but not fatal, and I have decided to stop taking the drugs I have been prescribed. This will be a record of what happens.

20/01/11

Right, today is my first day of this experiment. Today I will take 6 tablets of Sinemet 25mg /100mg. I take these at 10 am, 5pm and at bedtime. I also have been taking 0.52mg prolonged release Mirapexin 1 tab at night.but I will stop taking these from today. After a week of no Mirapexin I will reduce my Sinemet by half and then stop altogether after another week

I feel quite well today. I didn't sleep well as I woke twice with generalized body pain and cramps and it took me ages of tossing and turning to get back to sleep. My tremor is not too bad and I feel this will be a 'good day'. Like all PD patients I have good and bad days.


out of 5 (+++++)

Sleep ++
Tiredness ++
General Well Being +++
Shakes ++++

I'm not a gambler, and have no strange sexual or behavioural issues. I feel as good as can be.