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Living with Parkinson's

Receiving a diagnosis of Parkinson’s takes time for both you and your loved ones to come to terms with as there’s no doubt that the condition will have an effect on many areas of your lives.

However it is a case of living with Parkinson’s rather than letting Parkinson’s define you or your life. The way that you approach the condition will have a huge impact on how it affects your life both now and in the future, and you friends, family and colleagues will take lead from how you deal with your condition.

Life with Parkinson’s is not always easy but focusing on it one day at a time and trying to have a healthy lifestyle and positive outlook will help you to manage the lifelong condition. Read on for more about exercise, diet, alternative therapies and daily life with Parkinson’s.

Exercise

Exercise is AS IMPORTANT AS MEDICATION. Keeping active is good for your physical well-being and your mental health too. Moving regularly is important for people with Parkinson’s in managing symptoms and keeping muscles moving.

At times, it may take a little more effort for you to exercise – especially if you feel muscle stiffness or feel tired. It is worth making the effort though because otherwise, you may fall into a vicious circle of not exercising and this can lead to further mobility problems as muscles and joints become stiffer and weaker.

It is important to find an activity or exercise that you enjoy and which you can fit easily into your day- whether that’s SMOVEY, walking with your dog, cycling, playing a team sport, swimming, spending time in the gym or countless other activities.

Smovey is a health and wellness tool that was invented by a man who has Parkinson’s and you’ll find loads of testimonies on this site from people that have claimed smovey has improved their quality of life. Also check out www.smoveyhealth.com

An activity such as Nordic walking may be worth investigation – as it gives a great cardiovascular workout but uses poles that aid posture and balance.

Yoga can be beneficial in working on flexibility, muscle strength and posture – in light if some of the symptoms that accompany Parkinson’s. It can also help increase body awareness and is a relaxing activity.

If you are thinking of taking up yoga, make sure you find a teacher that matches your needs and understands that you may need to modify some poses due to your condition.

There are many benefits to taking regular exercise. It works winders for the whole body – all of the organs, muscles and bones benefit from regular activity and it also helps your posture, flexibility and your central nervous system.

Keeping active can also help you to counteract stress in your life and help you sleep better at night. Getting involved in a team activity such as bowling, tennis or sailing can help you to form new social circles.

If you feel your movement is not good enough to take exercise or you are starting a new exercise regime, talk to your doctor or ask to be referred to a physiotherapist to help you work on improving your mobility.

There may be some days when you feel tired or not up to exercising but don’t let that get to you – just make sure that you make the most of the days when you are feeling good and try and make exercise a regular part of your week.

Diet

Eating a healthy well balanced diet is important for everyone, including people who have Parkinson’s.

For most people with Parkinson’s there is no special diet to follow but you should follow the general advice given for healthy eating. Some people living with Parkinson’s may have an issue with protein.

Make sure you eat a wide variety of foods each day and eat regularly (try to have three main meals a day with small snacks in between or six smaller meals throughout the day.)

Food Groups

A balanced diet means choosing appropriately from the different food groups each day:

  • Starchy foods: each of your meals and snacks should have starchy food (high in carbohydrates) such as bread, potatoes, rice, pasta, oats, crackers and cereals.
  • Fruit and vegetables: aim to have five a day from this group – whether they’re fresh frozen, canned or dried.
  • Dairy products: try to have three to five servings’ of dairy foods each day – a serving is a third of a pint of milk, one small yoghurt or a small matchbox portion of cheese.
  • Meat, Fish and alternatives: Aim for two or three servings each day from this group. Choose from red or white meat, white or oily fish, eggs or pulses (beans, chickpeas, peas etc) and nuts.
  • Fatty and sugary foods: These foods should be eaten in moderation – they include soft drinks, cakes, biscuits, chocolate, crisps, sweets and fast foods.
  • Fluids: It is important to drink plenty of fluids – aim for 8 to 10 cups of fluids every day. Fluids can include water, fruit juice, squash, milk, tea and coffee. Keep tea and coffee to a maximum of four to five cups a day as the caffeine in these can lead to dehydration.

Having a healthy weight

It is important to have a healthy weight for your height and build – being overweight or more commonly in Parkinson’s, underweight, can have effects on your health.

Weight loss can occur due to the extra movements associated with Parkinson’s. There extra movements can be tremor or dyskinesia (involuntary and/or uncontrollable movements). both of which can burn up extra calories. If you are prone to extra movements, you may need to increase your calorie intake to avoid weight loss.

Equally, it can be easy to gain weight if you become less active due to your Parkinson’s and are eating the same amount of food as previously.

If you need advice on weight management, talk to your doctor or ask to see a registered dietitian.

Protein in your diet

Some people find that protein (which is found mainly in meat, fish, eggs, dairy products, nuts and pulses) can stop their Levodopa medication from working as well as it should.

This is because Levodopa is an amino acid and will have to compete for absorption with the amino acid produced from dietary protein.
For this reason most people benefit from taking their Levodopa 45 minutes before meals or 90 minutes after meals (though you should check if this advice applies to you with your doctor or Parkinson’s nurse)

Vitamins and minerals

There is no evidence that taking extra vitamins, minerals or antioxidants will improve your Parkinson’s symptoms or slow down the progression of the condition.

It is always better to try and get your vitamins and minerals directly from a well-balanced diet. However, if you feel you are lacking in a vitamin or mineral, talk to your doctor about possible supplementation. Some vitamins, when taken in large doses, can cause side effects.

People with Parkinson’s are likely to get osteoporosis (a thinning of the bones) and so an adequate intake of calcium and vitamin D is vital to keep bones strong and healthy.

Calcium is mostly found in diary foods such as milk, cheese and yoghurts along with some vegetables, tinned fish and fortified cereals and juices.

Vitamin D is mainly sourced from the sun via the skin. However, we do not get a lot of sun in Ireland so you should look to get Vitamin D through food sources such as eggs, oily fish, margarine, fortified milks and cereals.

Drinking alcohol

Generally, unless your GP, specialist or Parkinson’s nurse have advised you not to drink alcohol, a small amount, such as a glass of wine or a beer every now and again, should not cause any problems.
People can respond to alcohol in different ways, so talk to your medical professional if you have any concerns.

Remember to take into account any medication you are taking for other conditions. Alcohol can also cause problems with low blood pressure.

If you are trying to lose weight, remember that alcohol is high in calories.

Men and women should not drink more than 14 units of alcohol a week. It’s important to spread out alcoholic drinks throughout the week. Keep at least 2 days each week free of alcohol and avoid binge drinking.

Remember that alcohol can affect your sleep. Although it can make you sleepy, it can also produce a lighter, more restless sleep.

Another effect of drinking alcohol at night is nocturia – the need to get up and go to the toilet, which again will disturb your sleep. If you experience nocturia, you may find it helpful to avoid drinking any fluids in the hours before bedtime.

Working, Driving and travelling

Work is not only a way of making a living, it can also be important for confidence, self-esteem and personal satisfaction. Work can be fulfilling and give us a sense of purpose.

If your treatment is carefully managed and you have plenty of support, it’s possible to continue working for many years, depending on the type of job you have and how your symptoms progress.

Sometimes, you may need to make changes to your working life. This could be something relatively simple like reducing your hours, or it might be something more significant like changing career or taking early retirement.

The most important thing is to stay as informed as you can about your rights in the workplace, and use all the support available to you.

HOW AM I PROTECTED AGAINST DISCRIMINATION IN THE WORKPLACE?

The employment equality acts (1998;2004) make it illegal for an employer to discriminate on grounds of disability
It is against the law for an employer to discriminate against you because of your Parkinson’s.

Employers also have a duty to make changes to the way you work to help you continue doing your job. These are known as reasonable adjustments, and are explained more in the next section.

WILL I STILL BE PROTECTED DURING PERIODS WHEN I’M FEELING FINE?

Yes. The law protects people who have fluctuating conditions like Parkinson’s, which are likely to change and develop over time. This means that you’re still protected even when your symptoms are not affecting your ability to carry out ‘normal’ day-to-day activities.

These activities may include:

  • walking
  • reading and writing
  • carrying or moving things
  • concentrating and learning
  • having a conversation or using the telephone

SHOULD I TELL MY COLLEAGUES ABOUT MY CONDITION?

It’s entirely up to you whether you tell your colleagues about your Parkinson’s. But the important thing to know is that you don’t have to tell your colleagues if you don’t want to.

You can take time to decide what you think is best for you in terms of what, if anything, you tell them. You may want to think about things like how your condition may affect you and your colleagues in the workplace, how noticeable your symptoms are and what your relationship is like with the people you work with.

You may wish to discuss your decision with someone you trust outside of work, or speak to others, with similar experiences.

IF I DO WANT TO TELL MY COLLEAGUES, WHAT IS THE BEST WAY TO DO THIS?

If you do decide to tell your colleagues about your condition, you may like to spend some time thinking about what you want to tell them and how you want to do this. You may want to tell them about Parkinson’s in detail or you may prefer to be less specific and just let them know you have a health condition.

You may find it helpful to talk to your manager about how to tell your workmates. For example, you can tell them yourself or ask your manager to do it for you.

Some employers run education sessions, where an expert will come in and talk about a particular health issue to educate and inform employees. You could discuss running a session on Parkinson’s and decide whether or not you would want to take part in this.

Driving

Not everyone with Parkinson's will experience problems with driving or be unable to drive, but it is important you tell the DLA and your insurance of your diagnosis.

The company will require medical reports to support your claim that you can continue to drive. Your premium shouldn’t increase as a result of you informing the insurance company of your condition
Safeties first, if you change your medication or start to feel less than 100% able to drive, do NOT drive!

Travelling

Lots of people with Parkinson's travel – there should be no reason for the condition to stop you from enjoying trips abroad.

If you're planning a break for yourself or someone else with Parkinson's, you may just need to do some extra planning to make sure the holiday meets your needs.

Think about what sort of holiday would suit your needs. For example, are you an independent traveler or would you prefer to take an organized tour? What type of accommodation would be best? Perhaps you would rather travel by rail than air.

It's a good idea to chat to your GP, specialist or Parkinson's nurse about your plans.

They can check if there's anything you need to take into consideration, such as how much medication you'll need.

When you book a holiday or travel, explain what you need clearly to your travel or booking agent.

Be careful not to assume that people will understand what sort of assistance someone with Parkinson's may need.

Before you travel, ask your GP, specialist or Parkinson's nurse for a medical certificate or letter that explains you have Parkinson's and lists the medication you're taking.

You might need this for when you go through customs or if you are taken ill.

If you're carrying syringes or needles, make sure your doctor explains why you need them in the medical certificate or letter they provide.

Airports have very strict rules about taking sharp objects on board, so you may be asked why you are carrying them.

Ask your GP to provide you with a prescription for extra medication to cover the length of your trip. For example, if you are going on holiday for 2 weeks, take 4 weeks' medication just in case.

Also, check if you're able to get specific drugs in the country you're travelling to – the drug company should be able to advise you about this.

Always carry your medication in the original packaging and keep it in your hand luggage.

If you are passing through security at an airport, it's useful to keep your medication together in a clear, sealable bag.

Planning for the future

With Parkinson’s, it is often useful to try and deal with issues as and when they arise. However, that does not mean that you cannot also plan to the future, being able to think ahead and enjoy what life has to bring. Look at what you can do when it comes to medications, organizing care and look after your financial planning.

Medications

The best time to look at the next treatment steps is when your medication is working – don’t wait until it is no longer working to plan

Organizing care

It is very important that you retain a sense of independence and as your condition progresses; modifications to your home and/or work pace can help you to keep doing things for yourself.

There is a time when you’ll need to put plans in place for your care. As your Parkinson’s progresses further you may need to have residential care or assistance in your own home, whether it is through a trained professional or through your family or friends providing care for you.

It is a discussion that may be difficult for you and for others but having an early discussion about it can help to eliminate some of the worry about the future.

Financial planning

We all tend to put our financial affairs on the long finger but it is important to have a plan in place, particularly if you may have to stop working or need additional care.

You should check out any financial supports you may be entitled to and also make sure your legal affairs are in order.

All information came from Parkinson Ireland and Parkinson Uk.

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