Managing with Parkinson's

Living & Managing

Many, many people have lived with Parkinson's disease or cared for a Parkinson's patient. Take control: Know what they have learned.

Since Parkinson’s disease (PD) is a chronic condition, it is important to develop and maintain a solid PD management plan. Research has shown that those who take an active role in their care see an improvement in their Parkinson’s symptoms.

Managing your care means not only finding the right doctor, but ensuring you are prepared for your visit and talking to your doctors about the right issues. It means, not just taking your medications, but keeping track of when you need to take them. It also might mean using other complementary therapies (speech therapy, physical therapy, occupational therapy).
People with Parkinson’s are best served by a multi-disciplinary approach that provides not only the expertise of a PD specialist, but also the help of a physical therapist, speech therapist, nutritionist and social worker. Some people also require medical consultants in areas such as psychiatry and neurosurgery. It is important that these healthcare professionals are aware of each other and communicate regularly, and that they all know the full list of treatments and medications that each is prescribing.

A research made by Drs. Lawrence Kutner and Cheryl K. Olson for Brainlink says that dancing helps managing Parkinson's Disease. The video in this link further explains what it can do to help patients. 

Sarasota Memorial rehab therapists and their Parkinson patients demonstrate the benefits of LSVT Big therapy. The in-home and outpatient physical/occupational therapy program is based on the successful LSVT LOUD speech treatment for people like Michael J. Fox managing Parkinson's

Living and Coping (webmd.com/parkinsons-disease/guide/parkinsons-living-managing)

10 Important Questions to Ask Your Doctor About Parkinson's Disease

1.	Why did I develop Parkinson's disease?
2.	What are my treatment options?
3.	What are the pros and cons of each treatment?
4.	What short-term and long-term side effects can I expect from the treatment? Is there anything I can do to minimize them?
5.	Can you recommend any support groups for my family and me?
6.	Are there any non-drug options that might help? What lifestyle modifications can I make to help me feel better?
7.	Are there any foods, supplements, or over-the-counter drugs I should avoid?
8.	Where can I find out more about Parkinson's disease?
9.	How can I relax and manage stress?
10.	Are there any clinical trials I can take part in?

Day Plan for Parkinson’s

Parkinson's disease can affect many aspects of a person's daily life. However, with careful planning and activity moderation, the effects of Parkinson's can become much less stressful and intrusive.

The following suggestions offer guidance to overcome some of the difficulties associated with the disease.

• Plan periods of rest. Be sure to get plenty of rest. You may need to plan at least one rest period every day. If you have swelling in your feet or ankles, elevate your legs when you are resting or sitting for prolonged periods. Avoid working long days. Rest between recreation and leisure activities.
• Conserve your energy. Using less energy with daily tasks can help you have more energy to do more activities during the day. You may need to cut down on some of your activities or use energy-saving devices or techniques. If daily self care or home care activities are too tiring, discuss this with your doctor.

  Energy Conserving Tips for Those With Parkinson's Disease

• Simplify your tasks and set realistic goals. Don't think you have to do things the same way you've always done them.
• Plan your activities (chores, exercise, and recreation) ahead of time. Space them out throughout the day. Do not schedule too many things to do in one day. Do the things that take more energy when you are feeling your best.
• If needed, rest before and after activities.
• If you become tired during an activity, stop and rest. You may need to finish it on another day or when you feel less tired.
• Do not plan activities right after a meal. Rest 20-30 minutes after each meal.
• Ask for help. Divide the tasks among family and friends.
• Get a good night's sleep and elevate your head when sleeping. Be careful not to nap too much during the day or you might not be able to sleep at night.
• If your doctor says it's ok, you may climb steps. You may need to rest part of the way if you become tired. Try to arrange your activities so you do not have to climb up and down stairs many times during the day.
• Avoid extreme physical activity. Do not push, pull, or lift heavy objects (more than 10 pounds) that require you to strain.

Getting Dressed With Parkinson's Disease

• Get dressed while sitting in a chair that has armrests -- this will help you keep your balance.
• Roll from side to side to get pants over your hips. You can do this while sitting in a chair or lying down on your bed.
• Wear clothes that are loose fitting and have elastic waistbands.
• Choose wrap-around clothing instead of the pullover type. Also choose clothing that opens in the front, not the back so you don't have to reach behind you.
• Wear clothing with large, flat buttons, zippers, or Velcro closures.
• Use a button hook to button clothing.
• Use a dressing stick if you have shoulder weakness to get your coat or shirt on or off.
• Use a zipper pull or attach a leather loop on the end of the zipper to zip pants or jackets.
• Wear slip-on shoes or buy elastic shoelaces that allow you to slip your shoes on and off without untying the laces. Use devices such as a sock donner and long-handled shoehorn for additional assistance.

  Bathing With Parkinson's Disease

• Use a shower chair if necessary.
• Use a hand-held hose for showering and bathing.
• Use a long-handled sponge or scrubbing brush.
• Use soap-on-a-rope, bath mitts, or sponges with soap inside or a soft soap applicator instead of bar soap.
• Use lukewarm water, as very hot water can cause fatigue.
• Sew straps on towels to make them easier to hold while drying.
• Place a non-skid rug on the floor outside the tub to dry your feet so you don't slip.
• Put a towel on the back of your chair and rub your back against it to dry. Or, use a terry cloth robe instead of a towel to dry off.

Going to the Bathroom With Parkinson's Disease

• If needed, use a bedside commode.
• In the bathroom, use an elevated toilet seat and/or safety rails to assist standing from a low surface.

Grooming With Parkinson's Disease

• Do all of your grooming (shaving, drying your hair, etc) while sitting.
• Use hairbrushes and combs with built-up handles or handles with finger loops.
• Use toothbrushes with built-up handles or use an electric toothbrush.

Eating, Drinking, and Parkinson's Disease

• Don't rush your meals. Allow the extra time you need to finish your meal. Rest your elbows on the table to provide more motion at your wrist and hand.
• Sit with your knees and hips bent at a 90-degree angle in a straight-back chair.
• Use utensils with built-up, lightweight handles, or use a "spork" -- a spoon and fork in one. Use a rocker knife for cutting food.
• Use a non-skid mat to stabilize objects on the table.
• Use a plate guard or plate with a raised lip to prevent food from spilling.
• Use a long straw with a non-spill cup or use a plastic mug with a large handle.

Cooking With Parkinson's Disease

• Use the back burners and keep pot handles turned inward.

To Prevent Drooling or Salivating

• Suck on hard candy, lozenges, or gum to control excess saliva
• Use a straw when drinking to strengthen the muscles of the lips, mouth, and throat.

Writing Tips for Parkinson's Disease

• Use large print, instead of script writing. Try using weighted pens or pencils and wrap black electrical tape around the barrel for additional grip.
• Use magic markers and large tablet on an easel.
• If you have difficulty using writing utensils, try typing notes or letters on a computer or typewriter.

Parkinson's Disease and Shopping

• Call ahead to make sure the store has the item you need.
• Call ahead to reserve a wheelchair or tri-wheel cart if you aren't planning to bring your own.
• Call a taxi or ask a friend or family member to drive you.

Cleaning Tips for Those With Parkinson's

• Use long handles on sponge mops, cleaning brushes, dust pans, brooms, or window washers.
• Sit to fold laundry, wash dishes, iron clothes, use the sweeper, mop the floor, or to plug in appliances at low outlets. Adapt counters so that you can reach them from your wheelchair or from a sitting position.

Sitting and Standing

• Bend slowly at the waist and touch your toes before trying to rise from a seated position.
• Once standing, remain in place for a few seconds before trying to walk. This will help you regain your balance.
• Place an additional cushion or book to add height to your chairs and add firmness, this will help you to decrease the distance when sitting or standing.
• To make it easier to get out of bed, tie a sheet to the bed post and knot the other end so you can grasp the sheet to rise to a sitting position.

Easing Cramps, Spasms, or Tremors Due to Parkinson's

• Massage (or have someone else massage) your legs nightly to relieve leg cramps.
• Take warm baths and use heating pads to help relieve muscle spasms and ease cramps.
• Use mineral ice to relax sore joints and muscles.
• Squeeze a small rubber ball to reduce hand tremors.
• At first indication of a tremor, if possible, try lying on the floor, face down, and relaxing your body for five to 10 minutes.

Parkinson's Disease and "Freezing"

• Count your steps as you walk.
• Rock in place from foot to foot to get moving again if you become frozen.
• Have someone place their foot in front of you, or visualize something you need to step over, to get moving again.

Other Tips for Those With Parkinson's Disease

• Purchase a small battery-powered alarm pillbox to help you remember yourmedication schedule.
• Use a speaker phone or telephone headset to ease the problem of hand tremors while talking on the phone.
• Install an intercom system or purchase walkie-talkies to make contact within the home easier.

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Parkinson’s Travel Tips

The difficulties of Parkinson's disease don't have to interfere with traveling, which should be an enjoyable experience and not limited or avoided because of the disease. But planning ahead is key to avoid these difficulties. The following guidelines should help to make your next trip anxiety-free.

Tips for Traveling With Parkinson's Disease

• Always try to travel with a companion.
• Place the names of your doctor, insurance company, emergency contact, and medications in your wallet or purse.
• Carry identification stating that you have Parkinson's disease.
• Use a "fanny" pack or backpack so that you have both hands free to balance as you walk, especially if walking any distance.
• Pack snacks and carry a water bottle to take medications.
• Wear comfortable, loose-fitting clothing and good walking shoes.
• When making hotel reservations, request a room on the ground floor or near an elevator. Ask if they have rooms that are handicapped-accessible; these usually include grab bars in the shower and bathroom and have wider spaces between furniture for wheelchair access.

Traveling With Parkinson's Medications

• Always have at least a day's dosage of medication in your pocket or purse.
• Try to carry all of your medications with you, in the event that your luggage gets misplaced.
• Pack enough medications to last the entire trip.
• Do not rely on out-of-town, or especially out-of-the-country, pharmacies for refills.
• Check with your doctor about any over-the-counter drugs, such as those for motion sickness or diarrhea, before you leave.
• Find out if your medications are "sun-sensitive" and plan accordingly.
• Carry a list and schedule of medications with you.
• If possible, use a watch with an alarm or an alarm pillbox. If you are traveling with time changes it may be difficult for you to remember on your own.

Travel by Car

• Many Parkinson's medications can cause drowsiness, particularly after eating. If you are driving, take a nap before you go and avoid eating for two to three hours before departing.
• Do not overestimate you abilities. While you may be capable of driving short distances to and from home, a longer road trip may require much more stamina. Either break the trip up into shorter distances with frequent stops, or share the driving with someone else.

Travel by Air

• Request a non-stop flight and an aisle seat.
• Check as many bags as possible, but remember to keep your medications in your carry-on.
• Use airport shuttles, or ask for a wheelchair if your gate is a far distance.
• Ask for early seating for a few extra minutes to board and get comfortable.
• Use the bathroom before you get on the plane. Airplane bathrooms are often small and not handicapped-accessible.
• If you are on a restricted diet, request a special meal in advance.

Travel by Bus or Train

• Wheelchair lifts are generally available for entrances and exits.
• Seats can generally be removed to accommodate wheelchairs.
• Try to get an aisle seat near the exit to make getting on and off easier.

Parkinson’s: Preventing Falls

Falls are a big risk for people with Parkinson's. Here's a great checklist for reducing this risk.

Parkinson’s Disease: Exercise

Exercise will not stop Parkinson's disease from progressing; but, it will improve your balance and it can prevent joint stiffening.
Exercise is very helpful in maintaining or increasing the capacity to be active and mobile, decreasing rigidity and stiffness, improving balance and coordination, and helping with gait. Patients are advised to begin exercising regularly as soon as they get a diagnosis, since exercise can help delay the onset of new symptoms.
In the early stages of the disease, it is typically possible to choose any exercise program that would interest you with or without Parkinson's, as long as it builds in stretching and targets all parts of the body. If freedom of movement and balance are impaired, a physical therapist can help develop an appropriate exercise regimen. Or your doctor may be able to refer you to an exercise class specifically for Parkinson's patients. As is true for anyone, it's important to get a green light from your doctor before beginning a vigorous regime, particularly if you have any heart conditions.
Some activities that are highly recommended: yoga and tai chi for balance and flexibility, and walking and swimming for aerobic conditioning. A weight training program may be recommended as a way to improve strength and balance.
People who experience lightheadedness upon standing, a fairly common occurrence in Parkinson's patients that is related to a drop in blood pressure, should stop exercising if they feel this way while working out.

Parkinson’s Disease: Diet

People with Parkinson's are advised to eat a well-balanced diet that is high in antioxidants. The body functions better when it is well-nourished, and many health experts believe that antioxidants may play a role in slowing the progression of age-related diseases. Foods rich in antioxidants include prunes, blueberries, blackberries, strawberries, raspberries, raisins, and spinach. Because many people are troubled by constipation, fiber is also a key component of the diet. Good sources include bran, fruits, vegetables, beans, and whole-grain cereals and breads. It's also important to drink six to eight glasses of water daily.
Malnutrition is sometimes a consequence of Parkinson's, perhaps because the patient becomes depressed or experiences nausea as a side effect of medication, or begins to have difficulty swallowing. If he or she loses interest in food, or struggles to chew or coughs and chokes while eating, it may be helpful to consult a physician for advice or for a swallow study, during which an X-ray will reveal whether an administered liquid is passing into the trachea rather than the esophagus. If swallowing is the issue, it may be possible to address the problem by cutting food into tiny pieces and by sitting up straight during meals. Or the patient may be helped by speech or occupational therapy. Patients who experience swallowing difficulties should also consider taking nutritional supplements.
Protein and other foods interfere with the absorption of levodopa (the key ingredient in Sinemet or Stalevo). It's advisable to take Sinemet or Stalevo at least 30 minutes, and preferably an hour, before or after meals to ensure effective absorption. If the drugs produce nausea, they can be taken with crackers.

Coping With Parkinson's Disease

Depression commonly complicates the course of Parkinson's. It has been estimated that clinically significant depression is twice as common in patients with the disease as it is in patients with other medical illnesses. Signs of depression include trouble sleeping or sleeping too much; problems with concentration, weight loss or gain, anxiety, or irritability; panic attacks; lack of pleasure in usual activities; and crying or moodiness.
It's important to let your physician know if you feel depressed. You may be referred to a counselor for assistance adjusting to the changes chronic disease brings to your life and the life of your family. An antidepressant may help to relieve the symptoms of depression. Besides improving the spirits, treating depression may slow cognitive decline and keep a person active longer.

Parkinson's and Swallowing Problems

Many people with Parkinson's disease have difficulty swallowing because they lose control of their mouth and throat muscles. As a result, chewing and managing solid foods can be difficult.

Parkinson's and Sexual Problems

With the onset of Parkinson's disease, the development of sexual problems may be frustrating. However, there is hope for the patient with Parkinson's disease in being able to restore sexuality, or improve problems that may develop.

Parkinson's and Constipation

In some people with Parkinson's disease, constipation may occur due to the improper functioning of the autonomic nervous system.

Parkinson's and Lightheadedness

Orthostatic hypotension can be caused by the disease itself or by the medications used to treat Parkinson's disease. Almost any of the commonly prescribed Parkinson's disease drugs can cause or worsen lightheadedness.