How does your medication affect you?

I was diagnosed nearly 4 years ago. Initially, I was on a trial (Precept 1347) but that was discontinued and I asked to be put on another trial. I've been on this new trial for more than a year. In this new trial I was definitely getting the medication; no placebo was involved. However, I have noticed some subtle changes in me; nothing big or extensive but noticeable, at least to me. For example, prior to going on my current trial,(Stalevo) I was reluctant to drive to work on the Parkway (in this case, the Palisades Parkway heading towards New York City). Each morning, I would question my confidence level in driving on the Parkway. Invariably, I would find it low and opt to take the side roads to work. Going home in the afternoon, I would make the same decision and take the side roads. My reluctance to take the Parkway was due to speed. I found that I was not comfortable going more than 50 miles per hour. However, after beginning this new trial I found that I had no problem in going at the same speed as the other cars (65 to 70 miles per hour). This doesn't mean that I drive with reckless abandon. I'm a very safe driver, safe to the point of pure boredom but I have no problem with speed.

Another thing has happened. Once people pass a certain age they frequently remark that time is passing faster. It's really our perception of time since there is really no change. However, since going on PD medication my perception has been that time has slowed down.

I seldom gamble, if that is coming to your mind. We go to Mohegan Sun in Connecticut about once every two months, agree to lose a set amount ($100) and never exceed it. I usually quit after losing $60. I exhibit no other flamboyance since starting medication. Excessively boring behavior is not a recognized side affect of PD medication.

Has anyone else noticed changes since starting or changing medication?

All the best.

Lloyd.

...about the gambling. People who have never done so at all suddenly find themselves doing it. I have no inclination that way at all, but I wouldn't tempt the fates.

Other compulsive and destructive behaviors include sex as in chasing after people other than your spouse. Again it happens to people who would never thought they'd be susceptable. Again I don't tempt the gods (and being big and hairy provides a certain amount of safety :-) )

I do notice some obsession on the study of PD itself. It is just about all I read about and I probably put in two to four hours a day. I figure that to be a bizarre blessing of sorts. It might even lead to something important.

My meds are sinemet CR and requip and selegeline. By the way, it is probably unhealthy for me to refer to them as "my meds" like they were family members or something. But what the heck.

When they are "coming on" the first time in the morning, I have a strong urge to stretch and growl and carry on. I used the image of a butterfly tearing at his cocoon and it is apt, although if bears came in cocoons I would choose that.

On a good day, once on i stay on. But some days it is more like a roller coaster. Up and down.

Don't know if that tells you or not. Another good question though.

Thanks for your post Everett:

What I had in mind were more subtle changes but I suppose any change in personality, outlook etc is worth considering. When I was first diagnosed I spent a great deal of time on the web, looking for information on PD. I don't do that anymore, feeling that it kept me from leading a normal life. However, from my past research experience I know there is frequently value in collecting data which initially seems unrelated but which on closer scrutiny may be related. I keep going back to my paper on the Stradivarius as an example because I know it best. I asked one simple question. When did the Maunder Minimum (a cold period in the 17th and 18 th century) start and when did Stradivarius live? Search on the web indicated that they both began life one year apart (1640 and 1641) which indicated that Stradivarius very likely used wood that grew during a cold period in Europe. I guessed that the cold period resulted in slow growing wood leading to closely spaced tree rings, denser, stronger wood (all of which was correct) and enhanced tonal quality (which was also true). This doesn't mean that I'm right about the origin of the sound of the Stradivarius but, rather, here is another point that can be considered. It opens up another avenue for research one that had not been considered before

A similar approach may be made for PD. What are the characteristics of a PD sufferer? I know they differ; my PD seems to be somewhat different from yours or Rosebuds. Identify them, classify them, get a big enough data base and analyse them using something like Factor Analysis. We have the audience (the folks who read NT). I know you started something like this last year but I haven't seen anything recently. The important thing, from my viewpoint, is to collect data without any result in mind. In other words, ask the question, but don't anticipate the answer. Let the data do the talking. It may lead to something.

Time to go home.

All the best,

Lloyd

All the best,

Lloyd

Requip makes me freeze and yawn, rather insignificant side effects. I have no new compulsive urges. I am very afraid of driving on a highway, and I miss driving. I may look into Stalevo.
Did you see, and participate in the PD patient survey from Holland? It appeared here. It was a very thorough list of PD symptom questions, and the results should be interesting.

A question, Lloyd, that you may find interesting - or not....
It is completely off topic, a geology, maybe a meteorology question.
I study physical anthropology for pleasure and because I suffer from insatiable curiosity. At about 40.000 BC mankind suddenly became much more creative than before. new tools appeared, and paintings. For the previous millions of years the tools had hardly changed, and then suddenly Boom, the human brain improved, the tall Cro Magnon appeared, and homo sapiens evolved. What caused the Boom?
We were in Denmark the summer of Chernobyl.....the strawberries and cherries in the garden were twice as big as usual that summer.
If it did that to the fruit - did it have the same effect on babies' and children's brains?
Could there have been a geological event 40.000 (+ 2007) years ago that released Uranium of that magnitude into a part of the earth's atmosphere, an event that caused the Boom.
If you don't want to speculate about this I will not be at all miffed. It tickles my curiosity, you may just think it's silly. I'm an amateur, not a scholar.

birte

Dear Birte:

Thank you for your post and your question about what might have happened some 40,000 years ago. This period of time is referred to as Stage 3 (the name varies depending upon what and where you are studying. I use the oxygen isotope chronology derived from the deep sea record). Stage 3 was characterized by fairly rapid climatic oscillations from warm to cold and back to warm again. By fairly rapid I mean something on the order of 15,000 to 20,000 years. This stage is also characterized by the migration of Cro Magnum man into Europe. He/she could have brought their technology into Europe with them. Interesting that you should mention 40,000 years because stage 3 is becoming an interval of great interest to Paleoclimatologists (people who study the climate of the past). The reason for this is rapid (in a Geological sense) climate change.

I have published a few papers on early Man in Java and Africa. Very frustrating because there are so few remains to work with. It leaves a lot of room (sometimes too much room) for speculation.

By the way are you going to the PD walk in Central Park? I believe it's in April. We will probably go.

All the best,

Lloyd

I keep a spreadsheet, up to date daily, on all my PD symptoms (well I assume they all relate to my PD). So that I can try to analyse their prominence ( I have 27 different symptoms that can appear) and to chart the possible impact of the many potential variables (the weather, drug timing, drug changes, rest periods, physical activity level, physical capability, mood etc) and to try to clearly ascertain if and how I am deteriorating. I then take a summary of this to my 6 monthly Neurologist consultation. I also give myself a score from 1 to 10 on how I feel each day, 10 being very good for me with PD and not me without PD! Mind you I am not sure I can remember how I felt without PD!!!

Interestingly since I have been taking Levodopa (3 years) & Amantadine (18 months) my motor symptoms have all improved significantly and my non motor symptoms have all got worse and new ones have appeared. I suspect I am paying a high price for my motor symptom improvements and I was interested in Steves recent post about under medicating his Sinemet. Its a balance and a highly complicated one at that. 30 minutes with your Neurologist twice a year for such a complex illness is hideously inadequate, so I do the daily symptom analysis to try to help me optimise that 30 minutes and I do an agenda (check list sounds less pompous) for the consultation.

I have established some interesting trends from the daily analysis that I do not think I would have been aware of otherwise. I have been doing this for 18months now.

I do not know if you have analysed your behaviour and symptoms changes in such daily detail, but if not it might be worth a try.

Chris

We could probably do a lot of good by putting together some sort of standardized record/reporting framework such as Chris is using. Maybe something we filled in every three months and posted to a particular forum that docjohn made room for. We already do a weekly checkin thanks to Steve reminding us. Maybe we could do a monthly or quarterly report in but to a sticky to build up data in one place.

Data could include what we are taking, how we are doing, what relevant happenings since last report, etc. Is it worth asking docjohn to set up?

Chris

I don't go into as much detail as you do but I admire you for it. PD robs one of so much drive and ambition. I keep an informal record of the progress of my disease usually on a 6 month to yearly time table. I've only been on two medications (actually it's only one since the first medication I was on was a placebo). So I've only been on STALEVO. I've done well on it. If there has been any deterioration since diagnosis it has been very subtle and difficult to quantify. It's true that we may be attributing other conditions to PD and this may be muddying the water. For example, I have arthritis in my knees and I have to keep reminding myself that it's not PD. In the meantime let me encourage you to continue with your data base. Eventually, PD doctors will realize that this is an additional source of information, and a valuable source.

All the best,

Lloyd

Thank you so much for commenting on my not at all related to PD speculations, Lloyd. Interesting that you have written about the finds in Java and early Africa - so you have also been bitten by the fascinating quest for answers: did Java man originate in the East or did his ancestors come from Africa.....did Java man merge with the later African arrivals, or did his kind die out..... are the finds in Olduwai the oldest, or just the oldest found so far.....
And are we related to the Neanderthals.....!.
One fun thing that anthropology teaches is that all of us humans today are the same race. The less viable races died out. The differences in our appearance were all caused by geography, climate, elevation, latitude, isolation and inbreeding thousands of years ago. I did already say FASCINATING.
But the "rapid" climate changes just could not explain the sudden blossoming of man's imagination and the enhanced size of Cro Magnon. I was looking for a dramatic event - a meteor crash, a vulcano eruption of massive proportion, spewing radioactive Uranium over parts of Africa.....no signs of either???
Sorry to go on and on, and now I'm too tired to write about symptoms, etc. I think keeping 'score' is a really good idea, and setting up a thread for comparison and documentation from all would be brilliant - a big help in keeping track.

We may still go to the NY walk, but have not got ourselves organized yet. It would be very nice and fun to finally meet you and Steve and others from here.

Many thanks again,

birte

without getting obsessed with PD.

I know i am getting worse (like all of us) but I tend to think forgetting all about PD is the best medecine.

Each to his/her own.

Neil.