FAQ's
To follow are a number of questions that are frequently asked by People with Parkinson's, their families and friends.
Any advice contained herein is NOT intended to replace information provided to you by your own Doctor.
1. Do I need a Neurologist or will my G.P. manage my Parkinson's?
2. When should I start medication?
3. What are the medications and what do they do?
4. Are generic medications the same?
5. How long before medications start to work?
6. What times should I take my medications?
7. What are some of the common side effects of medications?
8. How do I know if side effects are normal?
9. Can I adjust the medication myself?
10. Why are my tablets different from my friend's who also has Parkinson's?
11. Sometimes if I'm a bit stressed my medication does not seem to be as effective?
12. What other health professionals should I consider using?
13. Is there a recommended diet for People with Parkinson's?
1. Do I need a Neurologist or will my G.P. manage my Parkinson's?
A Neurologist who specialises in Movement Disorders should be involved in the treatment and management of your Parkinson's. Neurologists are doctors who specialise in conditions of the brain and spine and as a result they generally have a better and more up to date understanding of Parkinson's than your GP. It is important to have a Neurologist with whom you feel confident and at ease as he/she will be managing your condition for its duration.
2. When should I start medication?
Your Neurologist should discuss this with you. Much depends on your life style, your symptoms and to some extent your age. The best time is usually when your symptoms are affecting your ability to FUNCTION whether at work or home. From diagnosis onwards all treatment should be aimed at maintaining function and safety.
3. What are the medications and what do they do?
A person with Parkinson's is missing a chemical Neurotransmitter called Dopamine. If the doctor were to give you some Dopamine the blood/brain barrier that stops poison getting into the brain, would block the dopamine as dangerous. But if your Neurologist gives you Levodopa it crosses the barrier and converts into Dopamine.
When Levodopa was discovered as a valuable treatment for Parkinson's in the 60's the amount that was required for benefit was enormous because Levodopa is also used by the body outside the brain. The early results from the Levodopa saw mobility improve dramatically but nausea and vomiting as severe side effects. People with Parkinson's, however, still chose to take it because of the improvement it made to their mobility.
Then, scientists discovered that if they added a decarboxylase inhibitor to the Levodopa it stopped the rest of the body using up the Levodopa and as a result most of the drug got to the brain. Doses were dropped from 2000 mgs to 100mgs and while the improvements in mobility were maintained adverse side effects were greatly reduced.
Nowadays this refined Levodopa is the first line treatment for Parkinson's and will probably remain so for the duration of the treatment. Other medications may be introduced but they are all extra to your Levodopa and helping it and you to get maximum benefit. Levodopa comes as Sinemet, Madopar and Kinson. In some people the first treatment may be a Dopaminergic agonist and this is a choice for you and your Neurologist to make.
Levodopa is like the petrol in your car. Without it you don't go - well, not too well anyway. It is important to take your medication absolutely correctly particularly as the disease progresses to avoid:
- running out of petrol between doses
- taking more than necessary to treat symptoms
- side effects
- under treating symptoms
- What is the difference between Sinemet & Madopar?
Not much. Levodopa is the vital component and both medications contain this. The only difference is the type of decarboxylase inhibitor that is used. Sinemet contains carbidopa and Madopar contains benserazide. The other minor difference is that Sinemet comes in tablet form and Madopar can come as either tablet or capsule (this can make it easier to swallow).
4. Are generic medications the same?
Yes. Sinemet has a generic brand called Kinson. The key or active ingredients are identical for both medications. On very rare occasions, however, some people do not respond as well to the generic brand. The reasons for this are unknown. It may be something as simple as the colouring agent used in the tablet. Other Parkinson's drugs, and indeed drugs for many conditions, also have generic brands. Why do we have generic tablets? Because the original drug has a cost built into it for all the research that was involved and the pharmaceutical company is given sole rights to produce that drug for a certain amount of time to recoup that cost. Once it comes off the restricted list then other companies can produce the medication.
5. How long before medications start to work?
When you are first prescribed Levodopa you will probably notice a difference in the first two or three weeks depending how quickly the drug is introduced. Drugs affect each person differently and react differently in different people. After the drug is up to a suitable level, we normally (but not always) expect the normal Levodopa to "kick-in' after 20 - 40 minutes but as an individual you may have a different story. It depends on the stage of your Parkinson's, your activity, your food intake, your stress levels etc. Slow or controlled release Levodopa takes up to 60 minutes to 'kick-in'. Other Parkinson's tablets do not have an obvious start time to them as they are working in different ways.
6. What times should I take my medications?
A big issue! Again we are talking Levodopa. Research shows that the amount of levodopa actually reaching the brain has a direct relationship to food. When you are first prescribed Levodopa it is sensible to take it with meals as it may cause nausea.
Once the body is used to it - say 6 weeks - then we suggest that it is taken away from food.
Why?
Because fat and protein in the meal may impact on the levodopa and slow down the absorption of the drug and its transfer across the blood/brain barrier. In a worst case scenario you may only get 20% of the original dose to your brain. The adverse effect of this is that when your symptoms are not being helped by your level of medication the Neurologist rightly adds more Levodopa when the original dose correctly taken probably was adequate taken without food. So to make sure you get the whole dose we say take the dose a minimum of ½ an hour before food or a minimum of an hour after food.
But we also want you not to run out of petrol so it is equally important to time your pills to keep the petrol tank topped up with a regular dose. The time it takes for the medication to run out varies between people and reduces as the disease progresses and your brain is producing less of your own Dopamine which buffers the effect. On average a normal tablet of Levodopa lasts 3-4 hours and a slow release tablet lasts 4-5 hours.
In other words the question is complex and your doctor and you need to take into consideration when you get up, eat, sleep, play, dance, rest etc to design a program that is specific for you.
For other Parkinson's medication the timing is less critical and the K.I.S.S. (Keep It Simple Stupid) principal applies to avoid a complex regime of constant pill taking. In the early disease none of this is critical BUT it may become so and good habits developed early are there for life.
7. What are some of the common side effects of medications?
Early --
Nausea which is not a problem if initially the tablet is taken with food. Education, support and a very slow introduction usually work. Once somebody sees a positive and knows they are fully supported then we are on the winning way.
Dizziness is occasionally a problem and your Doctor will keep an eye on your blood pressure if this is an issue.
Later in the disease we know there are drug induced side effects but the benefits of Levodopa for people with Parkinson's far outweigh these.
Some of these late side effects are:
Dyskinesia or involuntary movements which can be managed with other drugs.
On/off, freezing, festinating. All have a greater or lesser relationship to drugs. But all are manageable with other medication and, importantly, contact with a multidisciplinary team of Specialists in Parkinson's.
Cognitive changes, dreams, hallucinations are sometimes related to particular medication and can also be managed. |
8. How do I know if side effects are normal?
Never assume anything is normal unless you are feeling great. Ask your Doctor.
9. Can I adjust the medication myself?
Not unless you have very good knowledge of its effects. It is best to discuss with your Neurologist about your idea for change. Certainly be an active participant in change by knowledge of symptoms and knowing what drugs do etc.
10. Why are my tablets different from my friend's who also has Parkinson's?
You have a designer disease. Each person has a different set of symptoms, different response to drugs, different lifestyle, and different needs. Treatment should be aimed at you. Certainly know about other drugs but discuss them with your Neurologist to know if they are right for you.
11. Sometimes if I'm a bit stressed my medication does not seem to be as effective?
Recognise that stress, which can be good as well as bad, does impact on your symptoms and the response to tablets may be altered. For everyone, avoid negative stress and try to tolerate the adverse effect on symptoms while enjoying the good.
12. What other health professionals should I consider using?
• A Physiotherapist is concerned with your mobility and safety. The Physiotherapist's role is to offer assistance in improving gait, balance and bed mobility.
• An Occupational Therapist is responsible for looking at all the functional activities of daily living and teaching strategies or introducing equipment to facilitate your ability to remain independent. Writing, hygiene, dressing, food preparation, cutlery, work and play are all the domains of the Occupational Therapist.
• A Speech Pathologist looks at communication and swallowing. Communication is critical in every aspect of our lives. The Speech Pathologist's role is to ensure good volume and speech as well as attending to any swallowing difficulties that may develop. There are an enormous number of muscles involved in swallowing and if the Dopamine isn't getting the message to these muscles, choking may be an issue.
• A Dietician may work with the Speech Pathologist if food modification becomes an issue in relation to swallowing and will also see people with weight loss issues. Dieticians may also be able to assist with interventions that enable medications to be more effective. They may also be able to help with constipation.
• A Social Worker can assist with issues involved in managing life generally and can assist you in accessing community services.
Early intervention is recommended. For details of your nearest services contact Parkinson's Victoria.
13. Is there a recommended diet for People with Parkinson's?
Yes. In the early stages of the disease a normal healthy diet is important. However in the later stages swallowing issues may develop and the normal diet may need to be modified in texture. Some people may find the effectiveness of their medication can be particularly affected by protein. A Dietician can help to ensure adequate protein management. If weight loss is an issue the Dietician will advise on diet and perhaps supplements.
There is a publication available called "Eat Well, Stay Well with Parkinson's Disease" which can also provide information on these issues. It is available from the Parkinson's Victoria office.
The question everyone wants to ask but no-one does. HELP - I'm constipated!
This can be a problem in Parkinson's. Constipation can result from the slowing of the movement of the gastrointestinal tract which may be caused by Parkinson's itself or by the Parkinson's medications. People with Parkinson's, however, can become constipated because they may be drinking fewer fluids and eating less fibre.
The best way to tackle constipation is to prevent it.
Drink fluids, the best source is water. Take a BIG glass of water with every dose of medication. For many that will be 4 glasses a day already.
Eat plenty of fibre. Fruit, vegetables, prunes etc are very good sources. If in doubt consider a fibre supplement (they are available from the supermarket). A small dessertspoon on your cereal every morning may be all you need Speak to a Dietitian about it!!!
Many thanks to Mary Jones of the Movement Disorders Clinic at the Peter James Centre, Burwood, for this information.
