|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
||||||||||||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
User Guide
Introduction
This note describes as clearly as possible, a method of keeping track of your Parkinson's disease symptoms as you go through the day. The resulting chart can be quite helpful by itself, but its real purpose is to form the input for a computer program which works out the most suitable and effective way for you to take your tablets.
1. What drugs are involved?
The program deals only with tablets or capsules containing levodopa as the key drug. If you are also taking a dopamine agonist (See Table 1), this is does not prevent you from carrying out the analysis; simply make a note of the drug, stating the Name, the quantity taken, and the times when it was taken.
Table 1: Dopamine Agonists
| Parlodel | (Bromocriptine) |
| Lisuride | (Revanil) |
| Permax | (Pergolide, Celance) |
| ReQuip | (Ropinirole) |
| Cabaser | (Cabergoline) |
| Myrapex | (Pramipexole) |
Other Drugs which may have a noticeable effect and should be recorded:-
- Amantadine (Symmetrel)
- Clozaril
2. What do I have to do?
2.1 Define the Range.
| +2 | You need to be able to identify the difference between being under-dosed or over-dosed on your levodopa tablets. (Some people do find that difficult). Take the worst experience that you have encountered, of taking too much levodopa. Assuming that this was a severe reaction, and one that you would not readily care to repeat, and if it happened again you could identify it again, you can label that condition as +2. |
| -2 | At the other end of the range, lies the condition where you have not taken your tablets, and are 'Off' in Parkinson terms. This we label -2. |
| -1 | In between the two extremes, it is possible to define less severe conditions. At a value of -1, you should try to define a condition which is definitely indicative of being under-dosed, but at a level which you could live with if you had to. |
| +1 | Condition +1 should be slightly over-dosed, which can cause slightly jerky movements, slightly stiff muscles, but as with the -1 condition, one which you could tolerate if you had to. |
| 0 | Right at the heart of the range lies Zero: That condition (which I can still achieve at times) can only be described as an absence of symptoms, i.e. You feel normal. Believe me; you will know it when you feel it. |
2.2 Compile a day's record
A daily record starts when you wake up and take your first reading (and probably a tablet or two). Note that many people seem to wake with a condition quite close to zero, even though they have not had a tablet for some time.
There is no need to write down your condition every 5 minutes, or 10 or even every 15 minutes: what I need is enough data to reproduce the line which you sketch in to describe your day. So if not much is happening, I don't need many points. However, if you are an advanced case like me, you may find that you can go from a +2 to -2 condition in as little as 5 minutes. It takes a cluster of points to describe that with precision.
If you take a tablet, you should always record the time, the type and the size of the tablet, as well as your condition.
I also need to know when you have your meals. Write down the time at which you take the meal, and give a rough estimate of the size of the
meal (This really means the ammount of Protein in the meal), by labeling the meal as 'S' 'M' or 'L" (Meaning Small, Medium or Large.)
3.0 Miscellaneous Points
3.1 Hindsight is Acceptable: It quite often happens that you experience a condition which you write down as +1, only to find that things would look a lot more sensible if it was 1.2, or 0.8. You should feel free to make these judgements, after all nobody can argue with you!
3.2 It may seem a waste of time, producing a sketch of the condition plot, than turning it into figures, so that the analysis program can convert it back into a graph, but the initial sketch can tell when things are starting to happen.
3.3 Other Parkinson's - related symptoms which may be suitable for defining a condition:
- Muscular Ridgidity, or loss of muscle 'tone'. This is an easily- identified condition which in my case starts to be a problem at about -1, affecting my shoulders and upper arms.
- Dyskinesias - Sometimes mistakenly interpreted by observers as Parkinson tremor, Dyskinesia is actually caused by taking excessive Levodopa, and consists of random ,uncoordinated or spasmodic movement which can involve the whole body in bad cases. Dyskinesias are typical in cases of 'classic' Parkinson's but a significant minority do not have this problem; They go from stiffness and ridgidity at -2, to zero at the point where the ideal conditions exist, but then, as they take more levodopa, the ridgidity returns. I have not yet been able successfully to examine this version of Parkinson's Disease. At a lower level of overdose, the dyskinesias cause a kind of twisting, grinding movement of the body or arms, which can be very stressful on the joints.
- Shuffling walk. This can be a good measure of condition. The length of a stride can vary from hardly any impairment, to a shuffle which may only move each foot a few inches at a time.
Other suggestions for inclusion in this User Guide are welcome. Please address mail to: Brian Collins, E-mail address bjc@globalnet.co.uk
This site is © Copyright The Adrienne Coles Memorial Trust 2000, 2001, 2002.
The Adrienne Coles Memorial Trust is a Registered Charity with Charity Commission for England & Wales, registration number 1084973.
For more information and suggestions email the webmaster.