Middle Stage or Maintenance stage Parkinson’s

Life with Parkinson’sStaying HealthySocializingCommunicationMaintaining RelationshipsDealing with EmotionsLeisure ActivitiesCarrying out Activities of Daily LivingTravelingInteraction with othersAccepting or Rejecting Help from others

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Living with Parkinson’s can be difficult most of the time but you can help change that by improving your lifestyle. Here’s how.

Staying healthy is extremely important, as good health is the key to a better and easier life with Parkinson’s. Here are some ways in which you can stay healthy:66_ParaS_Exercise

Exercise

Exercising helps to release happy hormones called ‘endorphins’. Endorphins not only help to get you in a good mood, but also help to keep you healthy and active. You must exercise for at least 30 minutes to one hour every day. Exercise may include walking, physiotherapy, yoga, dancing; working out at the gym and anything else that keeps you active.To know more, visit our section on Physiotherapy for Parkinson’s

 
Healthy Eating Habits

You must eat a healthy and well balanced diet, making sure to include all the nutrients like proteins, carbohydrates, vitamins, minerals, fiber, calcium and fats in your meal. Eating your meals on time is also important.To know more download our resources on Diet and Nutrition for Parkinson’s

Sleep
The brain recharges its dopamine overnight. Most people find that a good night’s sleep leads to a good day. For these reasons it is important to get a good night’s sleep.

To know more download our resources on Tips to maintain sleep hygiene for PwPs

Regular Health Check-Ups with the Doctor
Parkinson’s is a progressive condition and the symptoms of Parkinson’s are likely to change over time. Hence it is important that you visit your doctor every six months to assess any developments that may have occurred in your symptoms. In addition, getting your overall health checked regularly is also important.

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You must make a special effort to go out and socialize, meet and interact with people. There are many activities that are enjoyed more when we do them with other people. Sometimes due to Parkinson’s, you might feel that you can no longer enjoy these activities with other people which may cause you to feel isolated and lonely. However, just because you have Parkinson’s, does not mean that you must refrain from engaging in such activities. Staying connected with others will keep you occupied and active, distract you from the immediate problems related to the condition, and decrease feelings of loneliness.

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At times people with Parkinson’s don’t enjoy socializing because they feel that their family members or friends who don’t have Parkinson’s do not understand what they are going through. If you wish to meet other people who have Parkinson’s and share your experiences with them as well as learn about their ways of coping with Parkinson’s, you can join a support group for people with Parkinson’s.

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Dopamine plays an important role in the working of the muscles of the body including the face and throat muscles. A lack of dopamine production in the brain can cause difficulties in speech, volume of voice and facial expressions. Due to this deficiency, communicating becomes difficult for people with Parkinson’s. Although being unable to communicate well with others or being misunderstood and having to repeat yourself is very frustrating, it is important that you remain patient with yourself. Keep practicing some facial exercises and voice exercises to help you to communicate well.

To know more, visit our section on Speech Therapy for Parkinson’s

Having Parkinson’s may affect your relationship with family members and with others who are close to you. You may perceive their behavior and/or commitment towards you to be different after your diagnosis. You may feel that they don’t understand what you’re going through or aren’t helping you enough or that they are helping you or interfering too much.

Sometimes you want to vent your anger and frustration and the only people around are your family members. This may lead to arguments and fights between you and your loved ones. But you need to spare a moment to think about how your diagnosis of Parkinson’s has affected your loved ones. It may not have occurred to you, but your family members could be experiencing the same emotions that you are; they may be as scared and unsure and angry about your Parkinson’s as you are.

Even though the illness has only afflicted you and you are the only one experiencing the symptoms, you are not the only person in your family living with the condition. Your family members too are experiencing and living the condition with you. Therefore, it is important to be understanding and patient with each other.

One way to protect your relationships with your family members is to communicate your feelings to them and talk about the problems you are facing. Communicating with your loved ones helps to reduce misunderstandings. Moreover, together you all may find different ways of dealing with the problems you may be facing.

Another way to strengthen your relationship is to try and keep your family members involved in helping you manage Parkinson’s. It will be more beneficial for you as well, to not try and deal with Parkinson’s alone. Your family members may stay involved by accompanying you to the Support Group, or you all could do physiotherapy together, he/she may help you with your medications.

Even if it is in a small way, involving the people who care about you will not only help them to understand your condition better, but it will also help them to know that they are making a difference.

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At times, people with Parkinson’s feel that they might soon become completely dependent on their family members and might fear becoming a burden on them. Being unable to do things independently and having to ask others for help to carry out your routine activities might be very frustrating and upsetting for you. What is important for you is to accept these limitations. Everyone is capable of doing certain things and incapable of doing other things. We must focus on what we can do rather than on what we cannot. This will help us to accept ourselves as well as to stay optimistic and positive.

People with Parkinson’s may experience extreme sadness of mood and anxiety. This could be due to the Parkinson’s itself or due to the effects of the medication. It is important to acknowledge these emotions and to get the required help.

Depression
It is natural for everybody to feel sad at times, or to get upset by things. However, after a while or if they are put in another situation, then they may no longer experience these emotions. Sometimes, people tend to experiences these emotions for an extended period of time and their mood may not change despite being in a different situation. Along with this feeling of sadness, they may also experience a loss of interest in their work and activities, feelings of hopelessness, worthlessness and guilt, pessimism, increase or decrease in appetite and sleep etc. Such a condition is known as clinical depression”.

If you experience such a state for a prolonged period of time (2 weeks or more) and it begins to affect your routine activities like work, sleep, appetite, physical activity and relationships, you must bring it to the notice of your doctor and seek help from a professional. A professional who will be able to help you with this would be a psychiatrist, a psychologist or a counselor. Here are some ways in which you could deal with the depression:

  • Exercise, as doing so releases endorphins which help improve your mood. You can take up exercise in any form like yoga, physiotherapy, walking, swimming, dancing etc.
  • Take up a hobby, whatever makes you happy. It could be art, music, dance, traveling, praying, conducting prayer meetings, preparing for religious functions etc.
  • Spend time with family members and loved ones.
  • Share your thoughts and feelings with your loved ones.
  • Be optimistic and reinforce yourself with positively framed statements.
  • Focus on what you can do.
  • An important point to remember is that, in periods of sadness and depression, you may not feel like initiating any activity, but it is imperative to take those first few steps. Push yourself in participating in activities that you used to enjoy and you will be surprised to see how energetic that will make you feel.
  • Maintain a Thought Dairy – Whenever a negative thought occurs to you, jot it down immediately in your dairy along with what triggered this negative thought. When you feel better, review these thoughts and question yourself whether there are alternative, more positive ways to think. Example- You may have had difficulty in communicating clearly today (trigger) which made you automatically assume that you will have speech difficulties every day and that you will no longer be able to communicate with your family (negative thoughts). However, this may not be entirely true. You can reason with yourself that I haven’t really had speech difficulties every single day, they occur sometimes and I can always participate in speech therapy to improve its clarity.
  • A little sunlight everyday- A minimum of 15-30mins sunlight exposure is an excellent mood booster. Aim to go out for a walk or sit in your balcony before 9.30am or after 4.30pm.

Anxiety
In our day to day lives, we all tend to feel worried, anxious or afraid of certain things or events that may occur. At times, some people might worry, be afraid or anxious without any clear reason for it and may be unable to control these feelings. It might affect and interfere with his/her daily activities and they may have physiological complaints of sweating, upset stomach, restlessness, increased heart beat, palpitations, and headaches. This is known as “clinical anxiety”. If you are experiencing these symptoms for an extended period of time, you must contact your doctor, a psychiatrist, a psychologist or a counselor. Here are some simple techniques to deal with your anxiety:

  • Meditation and deep breathing exercises
  • Yoga and Physiotherapy
  • Talking to others
  • Use positive imagery to calm yourself. For example, imagine the waves of a sea brushing against the shore and retreating back into the waters. Imagine the pure golden sand shining in the sunlight.
  • Postponing the worrying: Keep a specific time in the day for worrying and whenever you feel anxious during the day, remind yourself that you will worry only at that time for the decided amount of time.
  • Positively reinforce yourself with positive statements.
  • Distract yourself from the anxiety-causing situation.
  • Look at the problem from an outsider’s point of view. Think about what you would tell a loved one if he/she was experiencing this.

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After being diagnosed with a chronic condition like Parkinson’s, many people stop doing things that they love or that make them happy. However, it is important to remember that there is no reason to give up the things that we love because of Parkinson’s. Engaging in these activities will help to improve your mood and to keep you active as well as help you take control of your Parkinson’s.

At times, due to the symptoms of Parkinson’s, carrying out daily activities becomes difficult. If you have difficulty doing these simple things in public, it might be cause for great embarrassment which may make you want to avoid social situations completely. However, that is not the solution to such problems. If you face any difficulty while you are out, you must learn from that experience and think about ways to tackle such problems in the future. Remember that an important way for people to see what Parkinson’s is, if they see and interact with people who have Parkinson’s.

Here are a few common problems that people with Parkinson’s face in carrying out their daily activities along with some simple techniques to enable you to conduct these activities more easily.

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Dexterity
Dexterity refers our ability to perform task with our hands and can include tasks like writing, eating with a spoon, holding your plate, buttoning your shirt, tying your shoe laces, taking out money from your wallet etc. Due to tremors or stiffness, carrying out such activities might get difficult. To improve grip, one can use a pen or a spoon with a thick handle; one can use Velcro shoes instead of ones with laces, buttons on the shirt can be replaced by Velcro and pants with elastic can be worn instead of those with buttons; a larger wallet can be used to facilitate handling it in public etc.

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Fatigue
People with Parkinson’s are likely to experience excessive fatigue during the day. This is because they have to put in more effort to get simple tasks done. In addition to this, some people with Parkinson’s also have cognitive difficulties, which makes tasks like planning, remembering, following complex instructions etc. difficult for them. The best way to overcome these problems is to lead a healthy lifestyle. That includes regular exercise, sleep, eating healthy and having medications regularly and on time.

With Parkinson’s being a condition that mainly affects movements, traveling can become quite a task. The most important thing to remember is that you must always plan ahead. By planning ahead of time, you will be able to organize everything that you need as well as decide on what mode of transportation you will take and arrange for the same. While it is important that you always have your medications at the times given by your doctor, if you know that you are going to be going out, you can take your medications a little later so that when you are traveling, you will be on your on-period for longer. If you tend to lose your balance easily, make use of a walking stick to help you keep balance.

Here are some problems that many people with Parkinson’s may face while traveling along with simple solutions to these problems:


Driving

One major concern for people with Parkinson’s is whether they would have to stop driving. Many people with Parkinson’s are able to drive for many years after the diagnosis. However, there are many others who are not. As each person’s symptoms and rate of progression of the Parkinson’s is different, each one’s ability to drive would need to be assessed.

If you have Parkinson’s and try to drive, you may sometimes have difficulty in:

  • Reacting quickly to avoid a crash
  • Turning the steering wheel smoothly
  • Applying the gas pedal or push down the brake

Staying fit and active will help maintain your muscle strength that you need to drive. This will help keep you safely behind the wheel and on the road.

While assessing your ability to drive, firstly, it is important to speak with your doctor. If he/she feels that it is safe for you to drive then you can make a decision. After your doctor has given you the thumbs up, an easy way to decide whether you are safe to drive or not, is to ask yourself whether you would feel safe to drive with your loved ones in the car with you. Another way to know if you are fit to drive would be to see what your loved ones have to say. If you, your doctor and loved ones are confident about your driving, then you may go ahead and drive.

Your doctor can also refer you to a center or a specialist who can give you on and off-road tests to see if and how your Parkinson’s is affecting your driving. The specialist may also advise training to improve your driving skills if your Parkinson’s still allows you to drive safely. Improving your skills could help keep you and others around you safe. You can also call your local hospital and rehabilitation facility to find an occupational therapist who can help with the driving skills assessment.

If you can STILL DRIVE SAFELY and DO, observe the following MUST DOs:

  • Obtain a ‘Disability Certificate’ which must state that you are fit to drive with or without modifications to the vehicle. Always carry this certificate with you in the vehicle.
  • Obtain permission to drive from the R.T.O., who will endorse your driver’s license.
  • The front and back of your vehicle must have the ‘HANDICAPPED’ sign.
  • Inform your Insurance company about your handicap; you will get a rebate on the annual premium payable by you.
  • Explore the possibility of modifying your vehicle:
    – Power steering
    – Auto transmission
    – Steering knob for single hand control
    – Other driving controls depending on disability, e.g., left or right
    – Swivel driving seat for easy entry & exit

IN ANY CASE always wear your safety belt when you are driving or riding in a car. Make sure that every person who is riding with you also is buckled up. Wear your safety belt even if your car has airbags.

Caution
Riding a two wheeler may be unsafe after having been diagnosed with Parkinson’s.


Public Transport

Using public transport can be very difficult, and even more so for someone with Parkinson’s. It is important to remember that when you are traveling, you have an identity card or a small diary in your pocket or your purse. This should have your name, contact number and address and can also include other details like the names of your medication and the timings. In the event of an emergency, someone would be able to contact your family.

– Trains

If you find it difficult to travel in trains due to your Parkinson’s, you can apply for a disability certificate.

Once you are granted the certificate, you will be allowed to travel in the disability compartment of the train. Here are some handy tips to remember while traveling by train: make sure that the train has stopped moving completely before attempting to get in; make sure that you are either the first person to get into the train or the last; while climbing in the train, make sure that you hold the handle for support.

– Bus
While traveling by bus, make sure that the bus comes to a complete halt before getting in; enter only from the front door so that the driver will not start before you enter; keep change handy in your pocket or purse so that you don’t have to struggle in the moving bus; while getting down from the bus, you can always tell the driver that you have difficulty getting in and out of the bus so to allow you to get off the bus completely before moving ahead.

– Rickshaws and Taxis

Traveling by rickshaws and taxis can also be very difficult for many reasons.
Firstly, there are times when you may find it difficult to get a rickshaw or a taxi and are left standing on the road for long periods of time. One way to avoid standing on the road, waiting for a rickshaw or a taxi would be to get contact numbers of some rickshaw or taxi drivers and if you know before-hand that you will be traveling, you can contact them and ask them to take you.

Secondly, the rickshaw or taxi drivers may start driving before you have gotten in completely. In order to tackle this, you can inform the driver that you have a problem and that he should only drive once you have gotten in properly. Getting into the taxi or rickshaw can also be difficult.

Tips for getting in safely
While getting in, make sure that your back is facing the seat, then sit on the seat making sure not to bang your head on the roof of the vehicle, next take the leg facing the vehicle inside followed by the other leg. Once you have gotten in, make sure you are sitting comfortably. Only once you are comfortable you can ask the driver to start.

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Being a Person with Parkinson’s (PwP) in the community- For information on this, visit our section on Getting Involved

Often it is seen that due to Parkinson’s, people affected tend to reduce socializing and outings; you may feel embarrassed by your symptoms or you may feel that you have no friends who are going through the same this as you are. But it is important to remember that you must not give up doing things that you love because you may feel conscious or afraid that people are looking at you.  The best way to overcome all these reservations is to face them.

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Most people may notice your symptoms but not comment on them. On the other hand there may be some people who might notice your symptoms and ask you about them. What is of importance here is that if people are staring at you, you shouldn’t think it is because they want to ridicule you or that they have bad intentions; in fact they’re probably staring at you because they are unaware of what these symptoms are they can see or they might know someone who has similar symptoms, or they might just be curious.

You must learn to think of the situation in a positive way. Instead of getting upset and feeling embarrassed, be honest about having Parkinson’s and take this as an opportunity to enlighten the other person about Parkinson’s. This technique will not only help in not letting Parkinson’s take charge of your life, but will also help you to spread awareness about Parkinson’s.

Remember that the more easily and openly you accept your condition, the easier it will be for you to deal with such situations positively.

Moreover, you must try to see the benefits of meeting other people in a situation similar to yours. Joining a support group will give you such an opportunity. It will give you a chance to gain insight about how to cope with such issues and various other aspects of your life. Join a support group today.

There may be times when you are faced with situations where people are unable to understand what you are going through or what Parkinson’s is and they may respond in a way that is unsatisfactory to you. This might upset and frustrate you. You should understand and remember that Parkinson’s is still a lesser known illness in India. Therefore, it is not possible for someone who does not have Parkinson’s to understand what you are going through. Having such an understanding in mind while explaining to people what you are going through, will help to reduce your frustration.

There may be times when people would offer to help you or would go ahead and help you without asking you or there may be times when you ask for help. There may also be certain times when you don’t require the help or may like to do the task on your own. For such times, you must learn a good way of accepting or rejecting help. The most important thing for you is to communicate when you need the help and when you don’t. Unless you communicate to others about whether you need help or not, they will not know. Always remember that while asking for help or rejecting help offered, you must be polite.