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The beginning of your journey through different Parkinson's stages

As Parkinson's is a very individual condition, it is hard to predict the different Parkinson's stages for each person. What we do know though, is that there are many things you can do to help you manage the effects of the condition so as to maintain as good a quality of life as possible.

Are there any changes I could make to help me stay in control?

Yes, there are many changes you can make to help you stay in control and remain independent. Adapting your daily routine is one important way that you can help yourself. Choose a time in the day when your medication is working well to embark on any strenuous activities, and always pace yourself, taking rests if needed. 

There are also many types of specialist equipment to help with activities such as washing, dressing and eating for example. Occupational therapists are trained to help people to maintain their independence and adapt to disability. They can advise on special equipment and modifications to your environment or daily routine. 

Many people also devise their own strategies for coping with some difficulties - see Coping strategies videos for a range of ideas. For other helpful hints on everyday living see Helpful hints.

See also Living well.

Will I be able to continue at work and should I tell my employer?

As with most things to do with Parkinson’s, how it affects your work will be a very individual matter. You may have a very good relationship with your employer and want to open up to them about your condition. You will also need to think about how your work will affect you physically, especially if you have a demanding job. You may also find working becomes more challenging as the symptoms progress. In short, there is no standard reply. Many people continue to work for years whilst others find that the illness progression or the nature of their job makes it harder to continue working for long.  

See also Work.

Can I still drive and if so will my insurance increase?

Many people continue to drive safely after their diagnosis. Speak to your doctor, who, depending on your own personal fitness, should be able to advise. Parkinson’s can sometimes affect a person’s ability to drive because of the symptoms they experience or their reaction to medication. Remember too that due to the changing and progressive nature of Parkinson’s you may need regular check-ups, just to check that you are still able to drive safely.

Note: If you do drive you must ensure that you comply with any legal obligations. These will depend on the laws of the country you live in, but those likely to be applicable in all European countries are:

  • Notifying your national driver and vehicle licensing body of your diagnosis. They will advise you of the steps you need to take to retain your driving licence. This may involve contacting your doctor to confirm your fitness to drive, a medical exam or driving test. Some countries may issue a licence for a fixed term, usually renewable provided your ability hasn’t deteriorated sufficiently to make you unfit to drive.
  • Informing your insurance company. You should tell the company of any health change that may affect your driving. In most countries it is an offence under road traffic legislation to make a false statement or withhold information for the purposes of obtaining a certificate of motor insurance. Anyone who drives when considered unfit will invalidate their insurance cover.
  • Reporting any subsequent changes in your driving ability to the driver and vehicle licensing body and your insurance company.

Unfortunately, some companies do apply extra charges to insurance premiums, despite the disability discrimination legislation that exists in many European countries. However, you should be able to find a company that will provide a competitive quote, so set aside some time to shop around for a deal.

Your local Parkinson’s or disability organisation may have a list of recommended insurance companies or be able to advise further.

See also Driving.

How will my family and friends be affected? When do I tell them?

Parkinson’s affects more than one person, it reaches beyond to family and friends and affects their daily lives and the relationships you have too, for example you may need more help with daily activities, and the roles and responsibilities of these loved ones may evolve in order to help you with your Parkinson's. 

When and how much you decide to tell those close to you, and how much you want to involve them initially is a personal decision based on how close your relationship is and how you think they will react. If you don’t want to say anything at first that’s fine, but many find that it helps to confide in those close to them sooner rather than later so that they can be supportive. They may then be able to help you find out more about Parkinson’s and how to adapt your routine so that you can maintain a good standard of living.

See also Relationships & communication and Family and friends.

Who can help me adjust to the changes at work and at home?

There are experienced professionals who can help you adjust, in particular occupational therapists and physiotherapists (depending on the country in which you live) who can assess your home, work and leisure activities, and offer advice on solutions to overcome the obstacles that may set you back you in certain tasks. 

By addressing any difficulties that you may have, (especially if you are referred early), the therapist can ensure that you maintain as much independence as possible, and adapt more effectively as Parkinson’s progresses. Because Parkinson’s is a progressive condition, occupational therapists are likely to remain in contact with you and your family for many years.

Some larger companies have welfare officers who are trained to help those with special needs, and they may be able suggest some changes within your workplace that will help you.

When and how much you decide to tell those close to you, and how much you want to involve them initially is a personal decision based on how close your relationship is and how you think they will react. If you don’t want to say anything at first that’s fine, but many find that it helps to confide in those close to them sooner rather than later so that they can be supportive. They may then be able to help you find out more about Parkinson’s and how to adapt your routine so that you can maintain a good standard of living.

See also Relationships & communication and Work.

Can I continue to drink alcohol?

You will need to check with your doctor if alcohol can be consumed with the medication you are taking. In many cases a moderate consumption (around two units per day) is fine, and may even have beneficial effects on the heart. A “nightcap” may also help you get off to sleep more easily, but you must check with your doctor or pharmacist that this is ok for you.

Medication should not be taken with alcohol, and when building up the dose of a new medication alcohol should generally be avoided.

Keep in mind that alcohol can make any incontinence problems worse, and ‘long’ drinks, such as beers and lagers, tend to have a worse effect than ‘short’ drinks, such as spirits. 

How will my daily life be affected?

Parkinson’s is such an individual and personal condition, it affects everyone differently so it's difficult to say to how it will impact on your everyday life. Many people find they can carry on as usual with hardly any problems for some time, but as the illness progresses you will probably find that you need to adapt your routine to make life easier for yourself.

The kind of symptoms you experience and how well your medication controls them will be a big factor, so keeping a close eye on how effective your medication is and communicating well with your doctor is crucial in managing your Parkinson’s and allowing you to continue your usual activities. Keeping in contact with friends and doing the things you enjoy are also important for you to maintain a positive attitude and ensuring that you continue to lead a good quality of life.

If over time you find some activities start to get difficult, talk to your doctor and other healthcare professionals, they may be able to suggest adaptations or specialist equipment that can help you continue to do these things for longer. 

See also: 

What will my treatment involve?

There is no single, optimal treatment because Parkinson’s is such an individual condition. We’re all built differently and your own symptoms will evolve over time. You will need to work together with your doctor to find the right balance of treatments for your specific symptoms.

In the beginning, a single medication or a combination of different medications can be used. Medical treatment is started in low doses and increased gradually. Furthermore, medication is always individual and can vary greatly between people and can also cause side effects. Therefore, medical treatment for people with Parkinson's requires regular follow-up appointments by a physician with a good knowledge of the condition so that adjustments can be made as required.

Symptoms can be effectively controlled, often using a combination of the following:

It’s always important to understand the choices of treatment offered to you, so if you are ever unsure about your options or find some information difficult to understand, please discuss with your doctor who will be able to talk you through everything.

Can I take part in a clinical trial?

Research is a key aspect of Parkinson’s and there are many research projects and trials in various countries. But before considering taking part in one always discuss with your doctor and seek his advice as to whether or not your participation may have an impact on your current treatment plan. It could be very helpful to contact the national Parkinson’s association1, 2 in your country as they may be able to provide further details so that you will have as much information as possible with you when you discuss with your doctor.

For further information, including the trial process, benefits and risks to participating, see Clinical Trials.

References:

  1. Our members
  2. Other Parkinson's organisations
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