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Most people living with early onset Parkinson’s disease see their neurologist every three to six months initially, then every six to 12 months. However, if you are experiencing severe symptoms or have issues with your treatment, more frequent visits may be required. As Parkinson’s is a complex disease, which can be difficult to diagnose – particularly in early onset – it can go undiagnosed for quite some time.
Due to the range of symptoms, and an individual’s response to medication, treating Parkinson’s can be complex. Being prepared before visiting your neurologist will help you to get the most out of your appointment. It is a good idea to write questions down or complete the following checklist to help you to remember everything you want to ask or tell your neurologist.
You can either fill out the form online and then send it to your email or right click to save it to your PC ready for printing. There are a lot of symptoms included on the checklist that not everyone experiences. It may be helpful to keep a copy of form you complete for your own record.
Your drugs do one or more of the following:
Increase the amount of dopamine in the brain
Act as a dopamine substitute, stimulating the parts of the brain where dopamine works
Block the action of other factors (enzymes) that break down dopamine
What medication will I take and when will I start?
When you receive your diagnosis, you and your specialist will make a decision about whether to start treatment straight away or wait until your symptoms progress. Medication in early onset might be delayed if symptoms are very mild and they are not impacting on your daily life.
When you start medication, you will be given specific instructions on when to take it and if it is to be taken with or without food. This information is important to ensure the medication’s effectiveness.
You may be prescribed levodopa, dopamine agonist or a MAO-B inhibitor. Which medication you take depends on how much your symptoms affect you and other factors such as your age and your lifestyle. Most people find they tolerate their treatment well and will return to their specialist for review. This is when your specialist or Parkinson’s nurse will increase or decrease the doses or frequency, or add new drugs, until your symptoms are as well-managed as possible.
Before leaving the clinic you should get the contact details of your Parkinson’s nurse or the clinic’s phone number in case you have any problems with side effects. It is important that you are aware of any changes you are experiencing and it might be helpful to keep a log of this for the first couple of weeks.
Every person with Parkinson’s has a different experience of the condition, so your specialist, Parkinson’s nurse or pharmacist will work with you to find the best combination of treatment that is best for you as an individual.
Finding the best drug, dose and timing won’t happen straight away. Your treatment regime will usually need adapting as your Parkinson’s symptoms change over the years.
Planning a medication routine is something that should be a joint decision between you and your healthcare professionals. If you are prescribed medication, make sure you ask about what you are taking, when to take it, and any side effects.
Like any drugs, medication for Parkinson’s can have side effects. This means that some things you may think are Parkinson’s symptoms could be side effects of your medication.
Below we have listed some side effects that are important to be aware of. Medication affects everyone differently; it is important to follow the instructions and never to suddenly stop taking your medication without medical advice.
People who experience impulsive and compulsive behaviours can’t resist the temptation to carry out an activity – often one that gives immediate reward or pleasure. Behaviours may involve gambling, being a ‘shopaholic’, binge eating, internet usage or focusing on sexual feelings and thoughts. This can have a huge impact on people’s lives including on family and friends.
Not everyone who takes Parkinson’s medication will experience impulsive and compulsive behaviours, so these side effects should not put you off taking your medication to control your symptoms.
If you have a history of behaving impulsively you should mention this to your GP, specialist or Parkinson’s nurse.
Asking your specialist to make changes to your medication regime or adjusting the dose that you take is the easiest way to control impulsive and compulsive behaviours. So if you are experiencing this side effect, tell your healthcare professional as soon as possible to avoid the problem getting worse.
Some Parkinson’s medications can make you very sleepy. Sometimes this happens suddenly and without warning. Make sure you know what safety precautions you need to take – if you can drive, for example.
Sometimes it can be hard to know whether your sleep problems are part of the condition or whether they are a side effect of your Parkinson’s medication. It’s important to talk to your healthcare professionals to find out the cause of these problems.
There are some Parkinson’s medications that can make your blood pressure fall very quickly, causing you to feel dizzy or faint, particularly if you have had low blood pressure in the past. Increasing the amount of liquid you drink can help. Your specialist or Parkinson’s nurse will be able to prescribe medication to ease this side effect and give you other tips, so be sure to speak to them for more advice
There are some Parkinson’s medications that can make your blood pressure fall very quickly, causing you to feel dizzy or faint, particularly if you have had low blood pressure in the past. Increasing the amount of liquid you drink can help. Your specialist or Parkinson’s nurse will be able to prescribe medication to ease this side effect and give you other tips, so be sure to speak to them for more advice
We all know how important exercise is to our overall health. When you are living with Parkinson’s disease, staying active can actually help slow the progression of the condition. Many of the symptoms associated with Parkinson’s can also be better managed with exercise. Find an activity you like as there’s more chance you’ll stick with it. Regular exercise can help improve your strength, balance, posture and flexibility, and keep your heart and lungs healthy.
The right exercise can help people with Parkinson’s remain physically activity and reduce discomfort from pain and other symptoms affecting mobility. Exercise done in a group setting can contribute to living a more sociable and active lifestyle, and help improve sleep. It can even assist with issues that many people don’t talk openly about, such as constipation or problems with mood.
Many people with Parkinson’s also talk of exercise as a way of taking back some control in order to manage their symptoms, with some going as far as to say it helps them “fight back” against the condition. It is recommended to do at least 2.5 hours of exercise per week.
As Parkinson’s affects everyone differently, there is no one perfect exercise to suit everyone. Professionals recommend varying the types and intensity levels of the exercise you do. This approach will help you to stay active in a way that works for you and your condition.
If your symptoms are mild, focus on vigorous exercise such as gym sessions, running, cycling, tennis, circuit training or high-intensity workout classes. There are now many online classes that are a good option for people who are motivated by sticking to a schedule.
You may choose a form of exercise that targets specific symptoms, like balance or strength, or take a more general approach to improve your overall health and well-being. Exercises such as yoga, tai chi, pilates and table tennis are ideal for improving strength, balance, mobility, coordination and flexibility. Taking regular brisk walks and gardening are also good forms of exercise.
Remember, the best type of exercise for you is one that helps you to feel good, and remain as fit and well as possible so you can manage everyday life.
It is important to do a variety of exercises that will work on the upper and lower body for strength and flexibility. Balance exercises are also beneficial for the management of Parkinson’s disease. Talk to a physiotherapist or your health professional who knows about Parkinson’s for more advice and to plan the right exercise for you, especially if you’re just getting started.
Nigel likes kayaking and makes good use of the lakes close to his home. He finds the exercise beneficial for improving upper body strength and flexibility.
Parkinson’s hasn’t stopped Paddy from cycling. A keen cyclist for many years, he finds getting out on his bike helps him stay strong and keep his balance in check.
Yvonne started power-lifting a few years after being diagnosed with Parkinson’s. She finds it great for upper body strength.
Mary uses skipping as a way to get her heart rate up, work on her co-ordination and balance and loosens up stiff shoulders
Fiona enjoys year-round sea swimming. She says it’s helpful for tackling muscle stiffness and staying fit.