MANAGING PARKINSON'S DISEASE
HOW TO MANAGE PARKINSON'S DISEASE
Parkinson’s disease is a complex condition that affects many aspects of your body, has many symptoms and requires quite complex management. Although medication is important, it is not the only thing that will help manage PD. A whole team of people can help you live well with PD, this includes your neurologist, a speech and language therapist, physiotherapist, occupational therapist and nutritionist. These therapists can be difficult to access in Kenya. One of the most important ways to manage PD is by exercising – it is just as important as medicine and doesn’t cost any money.
MEDICATION
There are several different drugs that are used to treat the symptoms of Parkinson’s disease. New drugs are being developed around the world, but none can cure PD. There are clinical recommendations for how doctors should treat and manage PD. Some of the drugs used to manage the symptoms of PD are:
Levodopa + carbidopa (e.g. Sinemet, Syndopa and other brand names)
Dopamine agonists (e.g. Pramipexole, yours could be called Pexola, or Ropinirole)
MAO-B inhibitors (e.g. Rasagiline or Selegiline)
COMT inhibitors (e.g. Entacapone)
Glutamate antagonists (e.g. Amantadine)
Anticholinergics (e.g. Benzhexol) – these may cause a lot of side effects
These medicines work in different ways to manage symptoms. You won’t take them all and your neurologist will prescribe the most suitable drug for you. When you are prescribed a medication, for example, Sinemet, your neurologist will tell you how much you need to take and how often to take it. You will need to take these every day at the same time. It is important that you take your medication when you are supposed to and not take any more or less than you are prescribed, otherwise your symptoms could worsen. The most important thing is to not miss any doses. Where possible, try to have a minimum of 4-6 weeks worth of medication as products, such as Sinemet, can often go out of stock and can be difficult to find in pharmacies across the country.
The period of time when your medication is working is called “on” time. After some time, usually a few hours, your medication will wear off and you may feel your symptoms start to come back, this is called “off” time. When your neurologist prescribes your medication and gives you a dosing schedule, they will try to make sure that you have as little “off” time as possible throughout the day. This can get more difficult as your condition progresses and your body gets used to the medication. The amount of time you spend “on” might get shorter and you might need to take more frequent doses. If you feel that your symptoms are getting worse before you take your next dose, see your neurologist and you might have to change how much and how often you take your medication. Every person with PD has a different experience and treatment is individual.
Side effects
The medication you take could cause side effects. Not everyone will get these side effects, but it is important to be aware of them in case you experience any. These could include:
Impulsive and compulsive behaviours: such as gambling, spending too much money shopping, over-eating, or focussing on sexual feelings or thoughts
Hallucinations and delusions: a hallucination is when you see, hear or feel things that are not there; delusions are unusual thoughts, beliefs or worries that are not based on reality – these are explored further in the ‘symptoms’ section
Sleep issues: you may become very sleepy and this can happen suddenly without warning, be careful if you are driving
Blood pressure changes: some medication can make your blood pressure fall very quickly which could cause you to feel dizzy
Dyskinesia: these are uncontrolled, involuntary movements that can occur if you have used levodopa for a long time, it looks like you are swaying or wriggling and happens more after you take your levodopa or when you are “on”
You can always read the medication packet for other possible side effects and speak to your neurologist if you are concerned about your medication.
Medication tips
There are several reasons why your medication might not work as well on some days compared to others. Because you swallow your medication, it goes into your stomach. This means that what you eat can affect how medicine is absorbed. Here are some tips to make sure your medication works as well as it can:
You might experience nausea when you first start taking levodopa (Sinemet), try taking your tablet with a biscuit, ginger tea or ginger ale to settle the stomach
If you take medication with a full meal, it might take longer for the levodopa to work – take your levodopa 30-60 minutes before eating a large meal or after eating a meal
Drinking coffee around the time you take your tablet can improve the effect of the medication
Constipation can reduce how effective your medication is – try to reduce constipation and go to the toilet regularly
A high fibre diet (lots of beans, vegetables, grains, fruits) can improve how effective levodopa is
High-fat food reduces how quickly levodopa can take effect, reduce your intake of these
EXERCISE
Exercise is very important for the management of Parkinson’s disease. It can help improve your balance and movement issues, can reduce pain and improve your mood, can help reduce constipation and also has a protective role in the brain. This means it actually might help slow down the progression of PD. Doing just 2.5 hours of exercise every week can slow the progression of symptoms.
There are three main goals of exercise:
Aerobic activity – going for a walk, run, bike ride, dancing
Strengthening exercises – using weights to strengthen your muscles or doing body weight exercises like push ups
Stretching – this will help reduce stiffness
The amount of exercise you need to do is individual, it depends on how much activity you already do. If you usually sit at home most of the day, then getting up to walk around the house or going outside is a good start. You can then build up to doing more and more exercise. If you’re worried about going out of the house, there are lots of exercises you can do at home:
Stand up and sit down from a chair repeatedly to strengthen your legs
Sit down and lift your legs up and down like you are stomping your feet
Raise your arms up and down repeatedly
Hold your arms in the air and ‘call the rain’
Walk up and down stairs if you have them
Play some music and dance
Use a heavy object, like a bottle of water, to do some arm exercises, like bicep curls
If you know how to do ‘yoga’ this can be very good for PD
NEUROLOGISTS
‘Neurology’ is a part of medicine that deals with disorders of the nervous system. The brain, which is affected in Parkinson’s disease, is part of the nervous system. Therefore, a neurologist, who is specialised in treating these types of conditions, will diagnose and treat your PD. Neurologists will know a lot more about how to manage your condition than regular doctors. They will know what to do if you experience side effects, how to adjust your doses, what to do if a medication does not suit you and they will know about all the symptoms you manage in daily life.
In Kenya, there are about 20 neurologists practicing in Nairobi, Mombasa and Kisumu. Most of them are private neurologists but there is a government neurology clinic at Kenyatta National Hospital in Nairobi which runs every Monday morning. It is recommended that people with Parkinson’s disease see their neurologist every three to six months. This is so they can check that your medication is still working well, and you are not having too many “off” periods. Parkinson’s disease is progressive, and this means you will need more medication as it progresses. Because of this, you won’t be able to use the same prescription you were given for more than a year because you will likely need to increase the dose. If you are experiencing any problems and your symptoms are getting worse, book an appointment with your neurologist. Here is a list of the hospitals and clinics in Kenya where you can see a neurologist:
Nairobi
Kenyatta National Hospital
Aga Khan University Hospital, Parklands
General Accident House, Upper Hill
Fortis Suites, Upper Hill
Coptic Hospital, Kilimani
Nairobi Hospital, Upper Hill
Upper Hill Medical Centre, Upper Hill
Mombasa
Coast Neurology Centre, Mikindani Street
Aga Khan Hospital Mombasa, Vanga Road
Kisumu
Aga Khan Hospital Kisumu, Jairo Street
SPEECH AND LANGUAGE THERAPISTS
Some people with Parkinson’s disease can have problems with their speech and communication. Slow or lowered speech might be one of the things you first notice before a diagnosis. As your condition progresses, you might find that you can’t talk very loudly, or your voice trails off as you speak. This can be difficult because being able to communicate with other people is so important. Another issue you might have is difficulty swallowing your food.
Speech and language therapists are healthcare professionals who specialise in communication and they can help you with problems with your speech and swallowing. Speech and language therapists can hep you increase your volume and speed of speech, help with your breathing, facial expressions and help you say words clearly. They can also help with problems you have with eating or drinking, such as drooling, or difficulty swallowing.
There aren’t many speech and language therapists in Kenya but if you think that you might need to see one you can visit the website of the Association of Speech and Language Therapists Kenya to view a list of their members and contact a therapist:
PHYSIOTHERAPISTS
Parkinson’s disease is a movement disorder and people with PD might find that they have problems with everyday movements like walking or getting in and out of a chair or bed. A physiotherapist is a healthcare professional who helps people to keep moving and functioning as much as possible when they have an injury or a long term condition like PD. Physiotherapists can assess how PD has affected your movement, can help you maintain good posture and balance, help you be able to move on your own without assistance and help you remain independent.
Physiotherapists can also give you advice about what exercises you can do at home to help you and show you other stretches to keep your muscles flexible. If you have trouble sitting down or walking, a physiotherapist can teach you techniques to make this easier, so you can carry on doing things for yourself for as long as possible. They can also help with your strength and balance, if you experience ‘freezing’ (suddenly stop and cannot start moving again) when you walk, a physiotherapist can give you tips about how to deal with this. If you have pain in parts of your body a physiotherapist can help you with ways to reduce this pain. Most hospitals in Kenya will have a physiotherapist, if you think you need to see one, ask your neurologist to refer you.
OCCUPATIONAL THERAPISTS
Parkinson’s disease can make everyday activities more difficult to do, such as getting dressed, doing up a tie, eating, getting washed or getting out of bed. An occupational therapist can help you continue to do these activities by giving you practical ways of doing tasks more easily. For example, if you have a tremor and you can no longer button your shirt or do your tie up, an occupational therapist can give you ways to manage your tremor and exercises to make these tasks easier. They can recommend changes in the home, like rearranging furniture or suggest ways to help you do certain activities. An occupational therapist might visit your home to see whether making any changes in your house could make daily tasks easier. If you think you might need some help from an occupational therapist, ask your neurologist to refer you. You can also get in touch with the Kenya Occupational Therapists Association who will be able to refer you to a therapist in your area:
Website: www.kotakenya.org
Email: info@kotakenya.org
SUPPORT GROUPS
A support group is a place where people with a certain condition, like Parkinson’s disease, meet to share their experience, learn from others and give each other support and encouragement. The meeting times of each support group in Kenya can be found in the 'events' section of this website. You can attend meetings by yourself, with family or friends. If you can’t go yourself, a family member can go on your behalf.
Sometimes neurologists who diagnose you and prescribe your medication can be too busy to answer questions you might have during an appointment. Support groups are places that you can come to ask questions, learn from other members, learn from guest speakers, get advice about how to manage symptoms or tips about where is best to buy your medication. Not many people know about Parkinson’s disease and you might sometimes feel that you are suffering alone. Being part of a support group is like being part of a family who understand all your challenges and know what you are going through. Get in touch for more information about the support groups.