When you have a good knowledge of your Parkinson’s and know the difference between being underdosed and overdosed, many doctors will encourage you to experiment a little yourself with the precise dosage and timing of your tablets. Your doctor may, for example, be able to tell you that your total daily dose of Madopar or Sinemet should be roughly so many tablets and encourage you to experiment a little while keeping within this daily total. How you split them up during the day and how you take them in relationship to meals can be varied until, by a little trial and error, you find out what suits you best.
How important is the timing of medication in Parkinson’s?
The timing is not too critical in the early years but, as time goes on, it becomes extremely important for many people with Parkinson’s. This is because they can experience great discomfort and immobility (see the next section on Long-term problems for further discussion of these problems) and so need access to their medication at very precise times. This means that they have to plan their lives and activities very carefully – a loss of spontaneity which some people find very frustrating.
Problems with getting medication at the right times are especially acute when people with Parkinson’s are admitted to hospital, especially when they are on non-neurological wards. The anxiety and distress caused by poor timing of their medication can add considerably to the normal stress experienced by people in hospital. Efforts are being made to increase understanding of these problems among medical and nursing staff – through seminars and through publications, such as the PDS information sheets on hospital admission for lay people and professionals, and their information pack for nurses – but we still hear accounts of bad experiences. We discuss ways in which people going into hospital can minimize these problems in Chapter 13.
I have heard that people should be started on dopamine agonists at first and not levodopa? Is this true? My mother who is 75 has been put on levodopa.
This is a controversial area. Several studies (including those called REAL-PET and CALM PD) were initially interpreted as showing that symptoms in people on dopamine agonists pro-gressed slower than in those on levodopa. This argument is now disputed, although, as mentioned in answers to previous questions, some people on agonists do get fewer involuntary movements, often, however, at the expense of less benefit and increased chance of other side effects. It could be a case of six of one and half a dozen of the other, but at least the doctors have some choice and this should be discussed with you or your mother when treatment has already started. Despite heavy marketing of agonists, levodopa preparations still have a good case to be the initial treatment in some people: when symptoms are severe and a quick good response is necessary or, if drug regimens for other conditions are already complex enough, when the relatively simple dosage regimen of levodopa preparations is an advantage.
Studies, such as PDMED at the University of Birmingham, which randomize people between different classes of drugs are underway to try and answer these important questions. (See their website www.pdmed.bham.ac.uk for further information on PDMED).
I have read in the paper that drugs prescribed for Parkinson’s can cause compulsive behaviour such as gambling. Is this true?
There have been reports in the newspapers following the publication of an article in Neurology (a scientific journal pub-lished by the American Academy of Neurology), which suggested that a rare side effect of dopamine agonist drugs, used to treat Parkinson’s, may be compulsive gambling. There have also been a number of other small studies that have made a link between Parkinson’s drugs and gambling.
Obsessive-compulsive behaviour has been observed in people with Parkinson’s since before the advent of levodopa. Several structural and functional neuroimaging studies have shown that obsessive-compulsive disorder is related to dysfunction in the basal ganglia, the part of the brain affected in Parkinson’s. Some researchers think that obsessive-compulsive behaviour may be an important but unrecognized feature in some people with Parkinson’s and may be related to neurochemical changes in the basal ganglia in the brain that occur as Parkinson’s progresses. A study conducted in Spain found a higher rate of obsessive-compulsive symptoms in people with advanced Parkinson’s disease than those with early Parkinson’s and other small studies have reported similar findings in the last three years.
Low levels of the neurotransmitter serotonin are believed to be involved in obsessions and compulsions. Drugs that increase the brain concentration of serotonin often improve obsessions and compulsions. Serotonin is also believed to play a role in Parkinson’s and is the subject of ongoing research.
Excessive dopamine is also known to cause unusual behaviours. High doses of levodopa and dopamine agonists can occasionally cause behavioural problems, such as obsessive-compulsive behaviour and hypersexuality. However, it must be stressed that these side effects are very rare and, where they do occur, a reduction in dose or change of medication can resolve the problem.
Is it all right to take other kinds of medicines at the same time as those for Parkinson’s?
People with Parkinson’s often have other conditions for which they need medication. Reassuringly, the drugs for Parkinson’s are not upset by other kinds of medication. It is particularly important to stress that, if people with Parkinson’s become depressed, there is no reason for them to avoid normal antidepressant drugs if their doctors think that these will be helpful. You can also take painkillers and sleeping pills.
There are, however, a number of drugs (listed in Table 3.4) which should almost always be avoided by people with
Table 3.4 Drugs to be avoided or questioned if they are prescribed
Trade name Generic name Prescribed for Stemetil prochlorperazine Dizziness Maxolon metoclopramide Vomiting
Fluanxol flupenthixol Depression
Motipress fluphenazine
Motival and nortriptyline Depression Parstelin tranylcypromine
and trifluoperazine Depression Triptafen amitriptyline
and perphenazine Depression
Anquil benperidol Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Clopixol zuclopenthixol Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Depixol flupenthixol Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Dolmatil sulpiride Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Dozic haloperidol Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Droleptan droperidol Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Fentazin perphenazine Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Haldol haloperidol Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Table 3.4 Drugs to be avoided or questioned (continued)
Trade name Generic name Prescribed for
Largactil chlorpromazine Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Loxapac loxapine Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Melleril thioridazine Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Moditen fluphenazine Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Neulactil pericyazine Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Orap pimozide Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Serdolect sertidole Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Serenace haloperidol Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Sparine promazine Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Stelazine trifluoperazine Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Sulparex sulpiride Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Sulpitil sulpiride Hallucinations/Mild confusion or disorientation/
Disturbed thinking
Parkinson’s. This is because they tend to bring on Parkinson’s-like symptoms. The list includes some of the antidepressant drugs, but there are many alternative ones available.
A word of caution is necessary here. We cannot guarantee that the list of drugs given in Table 3.4 is exhaustive, as new drugs are being developed all the time. If you are offered a new drug by your doctor (or any drug which you have not had before, for that matter), it is always worth asking whether it is suitable for someone with Parkinson’s.
Some of the newer antipsychotics are believed to have fewer side effects acting on the part of the brain affected by Parkinson’s, which is why they will be given with caution in people with Parkinson’s who hallucinate. However, these drugs can still make the Parkinson’s worse, so they will be prescribed very carefully and usually at a low dosage. Recent research has suggested that two of the newer antipsychotic drugs, risperidone (Risperdal) and olanzapine (Zyprexa), should be used with caution to treat dementia in people at risk of stroke (the risk increases with age, hypertension, diabetes, atrial fibrillation, smoking and high cholesterol levels) because of an increased risk of stroke and other cerebrovascular problems.
My brother has glaucoma. Does that mean that some Parkinson’s drugs will not be available to him?
There is no major problem for people with glaucoma, especially if the glaucoma itself is being adequately treated. Anticholinergic drugs such as benzhexol (previously known as Artane) will probably have to be avoided, but these Parkinson’s drugs are not used very much now anyway. There is no major problem with levodopa replacement therapy (Madopar and Sinemet) or with dopamine agonists (all discussed earlier in this chapter). The drugs your brother needs for his glaucoma will not upset his Parkinson’s. It would helpful if the Parkinson’s specialist and the ophthalmologist work together when prescribing medication for people like your brother who have Parkinson’s and glaucoma.
Anybody with glaucoma should always bring this fact to the attention of any doctor they see.
There is a PDS information sheet on Eyes and Parkinson’s (FS27).
Does having a pacemaker create any problems in Parkinson’s medication?
There should be no problem with a pacemaker. In the days before levodopa (i.e. treatment before we had Sinemet and Madopar), preparations included a dopa-decarboxylase inhibitor there were some potential problems, but not now. There is no problem with dopamine agonists either. When treatment for depression is also required, the cardiologist may be wary of some antidepressant drugs, depending on the particular cardiac condition you have.
Actually fitting and managing the pacemaker should cause no problems and cardiologists are well used to looking after people with other illnesses in addition to their heart complaints.
I have heard of people with Parkinson’s having too much saliva, but I have a dry mouth which I find very
uncomfortable. Why should this be?
Yes, people with Parkinson’s sometimes have too much saliva, not because more than normal is being produced, but because the continual swallowing which we all do is slowed down, so the saliva accumulates in the mouth and can overflow. The dry mouth which you have is, however, likely to be related to your medication. This could either be an anticholinergic such as benzhexol or one of the antidepressants. Changing the dosage may be helpful but you have, of course, been given these drugs for a good reason, so you need to discuss the various options with your doctor. Once again it is a question of trying to find a fairly happy medium.
Sucking glycerine and honey sweets may help to make your mouth feel less dry, and ice cold water or citrus-flavoured drinks with or between meals can also be helpful.