My son’s involuntary movements distress me greatly and I think he should take fewer tablets but he disagrees. What do you think?
Other people often notice involuntary movements more – and are more disturbed by them – than the person with Parkinson’s. Your son’s argument will be that if he reduces the dose he will feel underdosed and his Parkinson’s symptoms will return. In such a situation, particularly if his movements were severe, we would encourage him to try a reduction in the dose. If he tries and he does feel and look worse, you may have to accept that he is better off with the involuntary movements than without them.
Your son does need to understand that his involuntary movements are a sign that he is on the top dose of treatment that he can take (or even that he is already just over the top), so he should not just take more and more tablets thinking that they will help. The misconception that more is better can lead, in some people, to an obsession with their medication and when the next dose is due. Although this is understandable when people are experiencing severe fluctuations, it can sometimes lead to them taking more drugs that is sensible. People who feel that their total daily dose of treatment is inadequate should discuss this with their doctor, and not simply increase the dose themselves.
My tablets do not seem to last as long as they used to so I have times, just before a dose, when I feel very slow and rigid. Why has this started to happen and what can be done to help?
What you are experiencing is fairly common after several years on levodopa replacement therapy (which is discussed in the first section of this chapter). It is known as the ‘wearing off’
phenomenon for the obvious reason that the effectiveness of the medication ‘wears off’ before the next dose is due. There are various theories about why it happens but no satisfactory explanation exists at the moment. With drugs taken by mouth, the amount of the drug in the bloodstream goes up and down fairly quickly but, in the earlier years of Parkinson’s, the brain is
able to handle these fluctuations and give a fairly smooth response. However, as the years go by, the brain seems less able to do this and the benefit you get from your tablets starts to vary roughly in time with the level in the bloodstream.
There are several possible ways of trying to improve the situation, and you should talk to your doctor or specialist to see which one he or she recommends. There are four main options.
• Keep your total daily dose of Sinemet or Madopar about the same but take smaller doses more frequently.
• Take your tablets before, rather than with, meals so that the levodopa has less competition from the protein in your food, and/or try redistributing your daily protein (e.g. meat, cheese, eggs) so that most of it is taken at your evening meal rather than at mid-day, thus minimizing any disruption of your daytime activities. (Chapter 9 on Eating and diet includes more information about protein in your diet.)
• Consider changing to one of the controlled release forms of Madopar or Sinemet. They keep the levels in the
bloodstream more constant and can reduce the
fluctuations, but most people find that they need a mixture of the controlled release and ordinary forms of the drug.
• Consider adding entacapone (Comtess). This may help to keep the levels of drugs in the bloodstream more constant, although a reduction in the dose of Sinemet or Madopar may be necessary in some people to avoid increased involuntary movements. Alternatively, your doctor may switch you to the combined pill that contains entacapone, Stalevo.
If none of these works for you, your specialist might consider trying dopamine agonist tablets or capsules (there are questions about these drugs earlier in this chapter). If this is the chosen option, it may be necessary to reduce your dose of the levodopa preparation – otherwise you may start getting too many involuntary movements.
My wife has had Parkinson’s for many years and now she can change from reasonable mobility to absolute
immobility in minutes. What causes this sudden change?
Your question contains a very good description of something we call the on/off phenomenon. Some people call it yo-yoing. It usually happens with people (like your wife) who have had Parkinson’s for five to 10 years or so. It is just as you describe, in that people can go from being quite well, with or without some involuntary movements, to becoming immobile, perhaps with recurrence of tremor, all in the space of a few minutes. This phase can last for quite some time and differs from the freezing (described in Chapter 2) which happens whilst walking and which lasts for seconds rather than minutes or hours.
The explanation of these fluctuations is, like the ‘wearing off’
phenomenon, not understood and is a major target for research.
The current explanation is similar to that for the ‘wearing off’
phenomenon. In other words, as the years go, by people become very sensitive to the amount of the drug in their bloodstream and this triggers (sometimes very quickly) changes in symptoms from being ‘on’ (well and able to move around, with or without involuntary movements) to being ‘off’ (immobile with or without tremor).
Improving the situation is even more difficult than for the
‘wearing off’ phenomenon, although the same changes to treatment are usually tried (we have listed these in the answer to the previous question). Your wife’s specialist may suggest that she tries an injected form of dopamine agonist called apomorphine (Apo-go) rather than a tablet form. There is more about apomorphine in the section on Dopamine agonists earlier in this chapter. The PDS has an information sheet on Motor Fluctuations (FS73) which includes information on on-off phenomenon and wearing off.
My mother has great difficulty in swallowing and getting her tablets down is becoming a major problem. Can anything be done to help?
Swallowing can be a problem with Parkinson’s, although it is not very common in the early years. The doctor should check for other possible causes and might refer your mother to a throat specialist for advice. If your mother’s problems turn out to be due to her Parkinson’s, her medication could be reviewed. Anticholin-ergic drugs tend to cause a dry mouth which can exacerbate swallowing difficulties so, if she is taking any of these, her doctor might suggest gradually trying without them.
There are two other things that can be done. First of all, if she finds liquids easier to swallow than solids, there is a soluble form of Madopar called Madopar dispersible which can be dissolved in water. Some changes of dosage and timing may be necessary, and this will be explained by her doctor. There is no dispersible form of Sinemet: standard Sinemet tablets can be crushed prior to use and mixed with liquid or a spoonful of yoghurt, for example. This may make swallowing the tablets easier and speed the rate of their absorption. (Note that Madopar capsules should not be broken). There may be a short period of trial and error until she gets the same effect as with her previous tablets.
Her specialist or GP should also involve a speech and language therapist in treating this problem. They have a special interest in swallowing and can often suggest ways of easing the problem.
There is some more information about swallowing problems in Chapter 10 on Eating and diet and there is also a PDS information sheet (Drooling and swallowing, FS22).
My elderly mother is constantly drooling. What can be done to help?
Overflowing saliva (drooling or dribbling) is quite common in advanced Parkinson’s. It happens, not because too much saliva is produced, but because Parkinson’s slows the natural tendency to swallow and also makes poor lip closure and a bent posture more likely.
There are no easy solutions. The anticholinergic drugs (discussed earlier) and some of the drugs used for depression can help, but anticholinergic drugs can have quite a lot of unwanted side effects, especially in elderly people. The same drugs – and also scopolamine (Scopoderm), used for travel sickness – can be given by skin patches but tend to have the same side effects as the tablets and may also cause sore skin.
Very occasionally surgery or radiation therapy on the salivary glands has been attempted. Although this treatment has been known for many years, it is rarely used as the results are unpredictable and can cause side effects, including an overdry mouth. Botulinum toxin injections are also being used by some doctors. See also the PDS information sheet Drooling and swallowing(FS22).
My husband who is in his seventies has been taking antiparkinson’s drugs for many years. Lately, he has developed terrible nightmares and has hallucinations during the day – sometimes he maintains he can see soldiers marching through the room and so forth. Both of us find this very distressing. Can you explain what could be causing this and whether anything can be done to help?
Thank you for bringing up this problem which is not too uncommon, especially in people over the age of 70 who have had Parkinson’s for a long time (as in your husband’s case). As with many things that happen with Parkinson’s, there is no simple explanation. We know that they are not just a side effect of the drugs because, if people who do not have Parkinson’s take these same drugs, they do not get hallucinations. They are probably partly caused by the Parkinson’s and partly by the drugs.
Virtually any of the drugs used to treat Parkinson’s can be partly to blame. If your husband is on anticholinergics, most doctors would start by trying to reduce them, and then slowly stop them altogether. However, usually it is levodopa replace-ment therapy or a dopamine agonist which is to blame. In some people reducing these drugs can get rid of the problem, but this may result in increasing immobility. In this case a not very happy
intermediate course has to be tried, aiming for reasonable mobility and some reduction in the hallucinations, but perhaps not eliminating them altogether. Although it sounds unlikely in your husband’s case, some people do not find their hallucinations or dreams particularly upsetting so, for them, these difficult compromises are not necessary. If, on the other hand, distressing hallucinations and confusion continue even after significant reductions in the drugs, it could, sadly, mean the onset of dementia.
Drugs that are given to treat hallucinations in other diseases unfortunately tend to aggravate Parkinson’s symptoms so may not help your husband. However, research is continuing into new drugs, which could overcome this problem. They include clozapine (Clozaril), and quetiapine (Seroquel, the current favourite), although all have other side effects and require careful monitoring. Some antipsychotic drugs seem to increase the risk of stroke in patients with dementia or other risk factors for stroke, and in particular, the advice is that risperidone and olanzapine are avoided. See also the PDS information sheet on Hallucinations (FS11).
Whatever the outcome of adjustments to your husband’s drug regime, if you are not already receiving support and advice from your local health professionals, social services or from the Parkinson’s Disease Society, we would strongly recommend that you seek out such help. You may also find some of the suggestions in Chapter 6, Caring for the ‘carers’, helpful.