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Introduction

Ten things every Parkinson's patient should know

  • Remember the importance of having a positive attitude
  • Establish a good relationship with your doctor
  • Learn as much as you can about your disease
  • Exercise daily
  • Take your medication on time, exactly as prescribed (we suggest that the patient should arrive at the exact timings by trial and error, finalise them with the doctor and then stick to them)
  • Don't let the disease consume you. You are the master
  • Do some community service so that, emotionally, you get your focus off yourself
  • Join a support group
  • Remain as independent as you can and for as long as you can
  • Live each day to the fullest and never lose hope

Tips on taking your medication

  • As a PD patient, you must take medicines for the rest of your life. There is no escape. You need to accept this fact and be comfortable with it. You must understand the effect that each medicine has over your body and mind. Modern medicine, if taken intelligently, allows you to live a comfortable life for many decades
  • PD drugs are usually introduced in low doses and are gradually increased over weeks or months. PD drugs often take several months to develop their full beneficial effects. So, you have to be patient
  • Don't stop taking your medication abruptly or change the dosage without consulting your doctor
  • Sometimes, drugs at the existing dosage start causing severe side effects. Don't worry. But, consult your doctor because you may need minor adjustments in your drug regime
  • If you feel nauseous from your medicines, take them just after meals. For the best results while using Levopoda, take the drug one hour before or one hour after your meal. This increases the absorption of the medicine and you get a more reliable response from the drug
  • Take your medication exactly on time. Missing a dose by even 15 to 30 minutes can result in a sudden 'off' which may need more than one dose of medication and many hours to recover from
  • Carry your medicines with you at all times. Keep a few doses, a bottle of water and a few biscuits with you always. You can utilise these if you get stuck in traffic
  • On some days, you may feel worse than before. Don't panic because P.D. progresses very slowly and not on a day-to-day basis

Tips for travelling safely

  • If you are going out of town for a few days, carry complete sets of your medicines. One set with you and the other in your luggage. Also carry a letter from your doctor stating that you have Parkinson's disease and that you are fit for travelling. Without this, airline personnel have the authority to offload you if they think that you can become a liability or nuisance during the flight
  • Carry a water bottle with you at all times
  • If you are going on a long trip, rest a day before leaving and a day after arriving. Drink extra water on the day before and the day after you travel. You need not drink extra water on the day of travel if you wish to reduce the number of visits to the bathroom
  • If you are travelling through different time zones, take your medicine while travelling as per the place of departure. Change over to the destination time after a nights sleep
  • If you have medical insurance, carry it with you
  • Pace the itinerary of your trip so that you don't get overtired. Allow extra time for dressing, eating, and walking in unfamiliar settings
  • You may need one or two extra doses of Syndopa on the day of travel. Don't worry

Tips for avoiding falls

  • You should avoid falls as aggressively as possible and take whatever measures are necessary for this. A fall can result in a hipbone fracture which can compromise your mobility. A bedridden patient develops a cascade of complications which becomes increasingly difficult to manage.
  • Remove shaggy carpets. It is very easy to trip on an upturned corner and fall
  • Watch out for items like toys and pencils underfoot, as you can slide on them and fall
  • If you have a dog, keep it tied up so that when you are walking it doesn't weave between your legs playfully, causing you to trip
  • Keep walking devices nearby. Sometimes, a metre away could become a bridge too far
  • Install grab bars or slide railings in your bedroom and bathroom
  • Keep your bathroom clean and dry

Dental health in PD

  • Dental health in PD is often overlooked by the patient and the doctor. Dental health can affects nutrition resulting in weight loss, causes cardiovascular problems, and especially in older patients, the problems can have serious consequences. Tremor rigidity and weakened swallowing ability can make dental examination and procedures more difficult
  • Use an electric toothbrush. Due to rigidity in wrists, you may find it difficult to manipulate the toothbrush to reach all parts of the jaws
  • If you are vegetarian, then you must floss once a week. Non-vegetarians should floss daily
  • Most Parkinson's patients have a habit of crunching their jaws and grinding their teeth at night. It damages the teeth and erodes the biting surface. Ask your dentist to make a nylon separator which will fit your upper jaw and you can wear it on the upper teeth at night and prevent the upper and the lower teeth from coming into contact at night

Tips for sleep problems

  • Most Parkinson's patients can initiate sleep easily but find it difficult to maintain it. Most sleep disturbances are caused by excess medication remaining in the body from the last dose of the day. Here are some tips to help you sleep well
  • Try to take the last dose of anti-Parkinson medicine 3 to 4 hours before your bedtime
  • Avoid stimulants like coffee within 6 hours of bedtime
  • Do not take long naps during the day
  • Keep yourself physically busy and participate in activities
  • Avoid using your bedroom for activities other than sleeping, such as reading or watching TV
  • The following may be of help:

- A warm glass of milk before bedtime
- A massage
- A hot shower or bath
- An expression of affection

  • Avoid feelings of guilt, resentment, regrets, jealousy, etc. at bedtime. Try to settle any issues before going to bed
  • If all of the above fail, see your doctor and get yourself checked for depression

Tips for living with PD

  • Learn about your illness
  • Some people may tell you not to read too much about PD. The more you read about it, the more you will be afraid of the symptoms
  • Parkinson's disease does not respond to ignorance. The more you know about your disease, the more you can co-operate with your doctor in deciding the doses, timings and overcoming side effects, etc.
  • Reduce your stress level, put your needs first
  • Over the years, as you slow down more and more, your capacity to do work will diminish. Do not stress yourself by accepting deadlines which you can't keep
  • Do not be self conscious about the visible symptoms of your illness
  • The more conscious you are, the more these symptoms will be aggravated
  • Keep your sense of humour
  • Surround yourself with loving and nurturing family and friends
  • Eliminate people who are a drain on your energy
  • Tell people about your illness
  • After diagnosis, some of the symptoms are easily visible. So, if you don't tell people that you have PD, they will draw their own conclusions. Since P.D. is not very well known, people's estimate may vary from alcoholism to AIDS. Once they are aware of the correct situation, nobody minds it
  • Keep a positive attitude. While it is natural to mourn the loss of function and independence, you should not get stuck in self pity and isolate yourself from friends. People experience greater misfortunes everyday, so count your blessings and be happy

Tips on making your home safe

  • Arrange furniture so that there are clear walking paths throughout your house
  • Place furniture in strategic locations so that you can hold on to it when you are in need of support
  • Remove castors or wheels from your furniture
  • Increase the lighting throughout your house
  • Store daily-use products like towels, food and medication between the waist and eye level so that you don't have to bend down or reach up with difficulty and lose your balance in the process
  • Put glow-in-the-dark tape or stickers on light switches and door handles to locate them in the dark
  • If you have diminished sensitivity to heat, set your water heater thermostat to 40-50OC so that you don't accidentally scald/burn yourself
  • Install hand railings in the stairway
  • If possible, cover your bedroom floor with laminated wooden tiles which are commonly available these days and are very helpful and prevent serious damage if you fall
  • Attach a rope to the foot of the bed. The other end should be in your hand when you lie down. When you want to get up, pull on the rope and rise up

Grooming tips for Parkinson's patients

  • Dressing is easier when your medicines are working. So, plan to dress when you don't feel rushed. Allow enough time to get ready
  • If your balance is unsteady, sit on a sturdy armchair when you dress
  • If the soap slips out of your hands often while taking a bath, put the soap in a full-length nylon stocking and tie this stocking to the tap
  • Cut your nails right after a bath. They will be less brittle, making them easier to cut
  • Use an electric toothbrush which is battery operated
  • If your hands shake while shaving, start using an electric razor. This will help you avoid cuts
  • While putting on your shirt or coat, always dress your weaker side first. While undressing, take the garment off the strong side first
  • Dress in front of a mirror. This will help you find the sleeves and match button holes. Button your shirt from the bottom up and you will be less likely to skip a button
  • Replace buttons and zip fasteners with velcro
  • Choose the right shoes. If you have a shuffling gait, soft rubber soles make walking more difficult. Hard leather soles can be very slippery on linoleum or ceramic floor tiles

Tips on mobility

You can use the following tips and tricks for better mobility.

Tremors

  • Holding the limbs in a variety of positions may lessen tremors
  • Hold on to something
  • Press your upper arm against your body

Getting up from a chair

  • Tuck your feet in
  • Try swinging your shoulders left and right a few times as far as you can, and then get up
  • Slide forward to the edge of a chair. Place your feet on the floor, 6 to 8 inches apart, hands on the sides of your chair. Lean your body forward from the hips. Rock forward and down with your arms and lead with your head to stand
  • Stand for a moment to get your balance before moving off, heel first

Difficulties turning in bed

  • Tie a knotted rope, lay it on the bedcovers and tie it to one foot of the bed. Sit up by pulling on it
  • Try sheets made of shiny material such as nylon or satin
  • Take 3 deep breaths; lift your head up and over, while reaching your arm across your body. If stuck, slide your heels up the bed, lift your bottom up and move to the side of the bed

Sitting from lying

  • Roll over first, slowly swing your feet out, lift your head and push away from the pillow, up to a sitting position

Freezing

  • Stop trying to walk. Just relax
  • Maintain a correct posture, keep your heels down
  • Try to bend or lift one leg, or swing your arms
  • Drop any article on the floor and step over it or pick it up
  • Walk with rhythmical music, heel first
  • Look through doorways, not at them
  • Lay a strip of white adhesive tape under the doorframe; the visual impact of the line should activate your non-automatic responses
  • Get a friend to rock you gently
  • Another simple aid is a walking stick. It helps you extend your reach
  • Fix your eyes on a position ahead

Changing direction

  • Consciously stop
  • Correct your balance
  • Lead with your head and let your body follow
  • Start with slightly smaller steps
  • Turn in a wide circle

Shuffling

  • Stop and relax for several seconds, keep your head up
  • Fix your eyes on a position ahead
  • Lead with your knee
  • Practice walking over markers
  • Place your heels firmly on the ground and widen the gap between your feet
  • Try counting – use metal heel caps or arms as cues
  • As you walk, repeat 'heel-toe', 'heel-toe', 'heel-toe' to yourself. Put your feet on the floor heel first and then toe, while walking
  • Practice marching with your feet apart

Other mobility strategies

  • Break up long movement sequences into separate steps and do only one movement in the sequence at a time
  • Avoid doing two things at once, such as carrying a tray of drinks when walking or talking when writing
  • Consciously think about each movement before you do it
  • Rehearse it in your mind's eye before you start moving
  • Carefully attend to each movement while you are doing it

Choking

  • The caregiver should learn the Heimlich maneuver and use it immediately when choking occurs

Excessive salivation

  • Try keeping a clove in your mouth
  • Swallow often

General tips for better speech

  • Do deep breathing exercises daily
  • Learn relaxation techniques for the head, neck and shoulders, and practice them
  • Take a deep breath before speaking
  • Swallow before speaking
  • Use short sentences with frequent pauses
  • Speak slowly and deliberately
  • Face the listener and then speak

Miscellaneous tips for Parkinson's patients

Exercise: It is important for a patient to make certain that his/her body is strong and flexible. Simple activities like stretching, walking, running and swimming are ideal for building strength.

Clothing: Parkinson's disease reduces motor skills. This can make buttoning of shirts and pants difficult. Go in for loose (but not flapping) clothing, with elastic waists, pull-on shirts and dresses with minimum buttons, zippers, hooks or ties, as well as slip-on or velcro fastened shoes. This becomes important in the later stages of the disease.

Compensating Tactics: Think about ways to overcome problems associated with Parkinson's disease, like dropping money from the valet while fumbling for change. Compensate for this problem by getting a large valet or use a debit/credit card. Similarly, you can change delicate porcelain tableware for more durable plastic crockery.

Take Naps: Parkinson's disease can interfere with restorative sleep, even though many people who have the disease suffer from fatigue. Take a short nap a couple of times a day to keep your energy up.

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