Doesn't Fix Everything


#1
As I have indicated elsewhere, I've very recently started taking Senimet and have been pleased to note that some of my symptoms have definitely improved. But sadly, not all.

In particular my ability to control a computer mouse and hand tools (screwdriver etc) is still significantly difficult. It can take me 30+ seconds to position the mouse over a menu item or icon to click it and I am sometimes having to use both hands on the mouse to try and cancel out the tremor (not very successfully), the hit area I am typically fighting against is an area of about an inch square. Trying to position a screwdriver over a screw head is similarly random. Total randomness, hand just won't settle.

Handwriting is similarly affected - even the craziest spider would win against my attempts to scrawl words using a pen.

Senimet hasn't improved the situation relating to hand control at all. In a way I'm not surprised, hand tremors have been notable for several years, my guess is that with these tremors gradually worsening the brain area which provides control is now long gone, and no amount of medication is going to put that back. The improvements which have been noted with the introduction of Senimet have been with symptoms which have appeared in recent times.

To try and measure whether Senimet migh have improved things I figured that would try to do a bit of serious DIY in recent days, including replacing a kitchen sink - in years gone by that job would have been easily within my capabilities and I'd have knocked that off within half a day no problem. Sadly, although I did manage to complete the job, I now know that will be my last ever attempt at any "serious" DIY. It took me 3 days, my hand/tool control is absolutely haywire and what might once have taken me 10 minutes can now take all day, and that's assuming that I haven't managed to wreck something along the way. It's a real pity because DIY was always my pleasure in life.

#2
Well, I certainly feel for your frustration, but I'm still VERY impressed by your replacing the kitchen sink!

#3
I noticed that when I placed the dinner plate in front of my husband , but placed it further away from him , he managed to feed himself more easily . So persuaded him to try the same thing when trying to write . He seems to manage it better . When you think about it when in confined situations or for example turning it is more difficult .

Don't know if you can make the gist of what I mean but it is worth a try ..

#4
Hi Kazmax

I have been on sinemet for just over three years.

I wouldn't give up on the idea that further improvement is impossible. The plasticity of the brain is more and more accepted, i.e. the ability of the brain to make new connections. And older people are much more able to learn than was once thought. An extreme example is of a child whose brain when she was born was judged to be lacking whatever was what necessary to see but a different part of her brain has taken over and she developed sight. My dexterity improved almost immediately after beginning sinemet but I would say I function even better now three plus years after diagnosis. Whether this is because I am used to the way I am or there is "real"improvement I couldn't be 100% sure.
Certainly the mental improvement continued for several months e.g. The ability to think things through and diminishing tendency to flap about and get flustered which I don't do now at all.

#5
Thank you for those replies, which are appreciated.

In thinking this through a little more, as I have only been taking Senimet for just over a week perhaps I have been too hasty with my comments - maybe my expectations were set too high and it will take time for the magic wand to do its thing. Perhaps one or two of the lighter symptoms were able to respond quickly, but the deeply entrenched variety need a bit more time. And maybe there have been improvements already, but with the mouse/hand control still being very erratic it seemed like nothing has changed.

However I still fancy that that kitchen sink will be the last major DIY project I ever undertake. The quality of my workmanship is appalling - if I'd got a plumber in to do the job he'd have been going home without payment, I made such a mess of the sealant around the rim. It wasn't as if I was faced with a completely new installation requiring running pipework and cutting sinktop holes etc - it was literally a drop-in replacement with relatively minor updates to plumbing and so on. In years gone by I was easily capable of doing the entire job and had all of the tools (powerful router etc), but I wouldn't dare try to operate rotating machinery now.

One thing I have persuaded myself is to look out for a pair of light chain-mail gloves, if there is such a thing. In my desperation to remain an active DIYer I've been nicking my hands something chronic as they bang against sharp edges, or they get on the wrong side of a sharp tool. At least I'm keeping the people at elastoplast employed through my regular contributions :)

And I have recently also had cause to remember what 240v feels like. It feels like a a wake-up call to remember to switch the leccy off if I am going behind a safety cover :grin:

#6
..chain mail gloves...240v...perhaps its time for a hobby not involving power tools?
ever thought of giving dyi lessons? that way your knowledge is used but you keep the same number of fingers.

johnnies point is interesting - many of us experience that tremors are much worse when the fork approaches your mouth, or when you try and scratch your nose.
i believe that this is because when the arm is bent the bicep is contracted and the tricep is extended. the tremor is caused by an imbalance between dopamine and that other chemical. in every pair of muscles (eg bicep and tricep) one is more affected by dopamine. perhaps this is made worse when one of the pair is contracted. so tremor might be less when things are done at arms distance. of course if you can't see that far.... might be worth a try holding the mouse with arm comfortably extended ie where the two muscles feel evenly tensed? if you try it let us know how you got on.
is your tremor bilateral and has it always been that way?
cheers

#7
Distance of mouse from body and straight/bent arm makes no difference to me. Tremor not noticeable at rest, it kicks in at the point where I need to submit the request (like clicking on a button on a screen). Once I have clicked then I can rest on the mouse no problem - until I want to click something else and then my hand goes into spasm again.

This affects both hands equally.

It'll now take me 10+ seconds to click the 'Post' button.....

#8
so the tremor comes on only with fine motor movements and is bilateral?

some things you could try:

1) put your thumb on the click button instead of your fore finger.the thumb is independent of the other four fingers and might work better.

2)if you have a laptop use the touch pad left button to make the click not the mouse

3) use control panel to slow down the mouse movements

4) experiment with bigger/smaller mouses

good luck

#9
Well done for carrying on with the DIY, I still use some power tools but my kids try to stop me.
I don't want to admit that I have stop my DIY projects.

Screwfix and other DIY stores advertise Kevlar gloves to protect your hands.
When I was still working I had bad RSI and had to use a special mouse made by Evoluent (http://www.evoluent.com/) also on Amazon. I know RSI is not the same as PD but they're similar hand issues. They're not cheap so you'd need to try one first but it might help.

#10
I'm a translator and, as such, spend a great deal of time at the computer and obviously had the same difficulty in mouse control. I've recently made some changes to my setup and have found that I can work much more easily and without strain.
What I did was to buy:
- Wireless keyboard and mouse, so I can position my keyboard wherever I
want as opposed to being restricted by the laptop keyboard
- Laptop holder which tilts the lap top to the angle I find most convenient

In common with many other translators I also use voice recognition software, in my case Dragon Naturally Speaking.

None of this is very expensive and can be bought from Amazon.

I find that my output both matches and exceeds what is expected of a 'normal' translator; my clients do not know of my condition because as far as I'm concerned as long as I get the job done, which I do, it's none of their business.

I hope this helps.

#11
Hi Kazmax,

I have just realised that you say you have only been on sinemet for a week. I took three weeks to work up to what is usually regarded as the lowest therapeutic dose, i.e. three Sinemet plus a day. One of my earliest symptoms was a difficulty with fine movement which took the form of a sudden jerk away just as I was on the point, of for example applying lipstick, moving something on the frying etc. pan This sounds similar to the "spasm" you describe. This symptom preceded any tremor as such which developed after a car accident. Are you on a trial of sinemet to aid dx or are you working up a dose?

#12
Sorry, have been offline from these forums for a while. Catching up....

The kitchen sink project has now resulted in us getting a plumber in to do the job properly. That's the first time in my DIY life where I have ever had to call in an expert, I've always been competent with DIY stuff. Basic issue is with the undersink plumbing, the plastic fit stuff won't stay done up - I can't get enough oomph into my hands to do the job properly and whilst I've used gas pliers to tighten the fittings I'm very nervous about stripping the threads.

I had abandoned installing the waste disposal unit shortly after trying to take the job on, and went back to the regular 1.5 sink plumbing arrangement. Which seemed to be okay - until the plastic plumbing underneath gave way last night. At which point I decided that this horse was already dead and there was no further point flogging it. Our friend's son is local and a good plumber, so we'll get him to put this right. If he can fit the waste disposal unit that'd be great. Have to pay, but it's better than having plumbing which could give way.

Teaching mentioned by previous poster - no can do, I need to be able to write legibly on an overhead projector or whiteboard, and that's beyond me now.

Text-to-speech conversion. Yup, already using the version which came with Windows 7 (free). It's actually pretty good, but not perfect and really it's an elastoplast covering a gaping wound - couldn't expect to use that in a regular job.

Have been on Senimet now for just over 3 weeks. Mouse control still abysmal, if there has been any improvement there I haven't noticed it, definitely can't expect to go back and do my regular job as a result. Writing now impossible, though I don't think that's been the result of Senimet. Some improvements noted in other areas, like my foot muscles don't seem to be permanently taught any more.

Less than a month until I see the neurology consultant again. Have also just been advised that I have an appointment at Charing Cross Hospital at the beginning of November. I believe that CXH specialise with Parkinson's, so hopefully with all this activity I will be heading for a formal diagnosis in the not too distant future.

#13
Hi Kazmax
Have you tried a mouse with a roller ball the mouse is static you roll the ball with your finger to move the arrow around your screen then just click I found this mouse in PC world or curry's.
My work colleges found it hard to use but i mastered to it very quickly.
Hope this may help.

#14
Tried the roller ball mouse, my son got one for gaming some time ago so we had one handy. It wasn't at all helpful, in fact it was more of a hindrance - mouse control seemed to be even more erratic than when trying to position the regular mouse on the desktop. Damn hand shakes, it whacks the ball and the cursor is suddenly on the other side of the screen! At least with a regular mouse the movement tends to be limited to a fairly small area (but invariably bigger than the target you are trying to hit).

Have installed SteadyMouse, which has helped a little:

http://www.steadymouse.com/

However it simply smooths out some of the jerkiness - actually clicking on a finite point is still hard, and it doesn't help with keyboard input where I am frequently whacking keys alongside the one's I intended. I used to be a highly competent touch-typist where I could accurately rattle off a word stream like machine gun fire without looking at my hands - now I'm down to typing slowly with just a couple of fingers - and still having to correct mistakes.

My online forum postings have taken a major hit over the last 12 months. I used to be a vocal visitor to many forums around the world in various disguises. Now forum visits and contributing could easily be counted on one hand each month, it's just such a pain now trying to use a PC productively. It's so frustrating trying to type without causing errors or clicking a button or select an option on an online form - there are times when I'm trying to click something and I'm shouting at my hands in frustration at their inability to stabilise! My wife has already been filling out handwritten forms for me for some time, by the looks of it then pretty soon she'll be having to do the same for online forms. I can see the day coming when using a PC is a historical memory.

Had an evening with other local Parkinson's sufferers a couple of days ago. We got discussing (as one does) and I explained my symptoms. A couple of other people reported similar, in fact they were further down the path than I am currently and now can't use a PC at all - so the future doesn't look at all bright for me.

#15
KazMax,
I have been taking Sinemet Plus (25/100) four per day for three months and have noticed that the effectiveness of this med
improves after several weeks of use.
Also be sure to take the tablets with water half an hour before food and take them at regular times through the day.
I take mine at 8am; 11am; 2pm; 5pm.
The good effects then wear off during the evening from 7pm to midnight. This means I am in discomfort in the evenings, so I will ask the nurse if I can take another to cover this period.
Arsene