The Importance of Remaining Independent

In any discussion of the symptoms of Parkinson disease (PD), the loss of personal independence is often an important issue.  Parkinson’s disease is a progressive disorder affecting mobility, dexterity, and balance.  Activities of daily life—such as buttoning a shirt collar or fastening a bra strap — become more difficult as the disease advances.  People with PD are often embarrassed and frustrated by their increased dependence on a spouse or caregiver.  Caregivers also report more depression, anger, and apathy in patients as they come to need more help and become more limited in their activities and capabilities.

Frustration is understandable.  The best course of action for PD patients combating their limitations is for them to complete daily activities for themselves.  Even if this takes more time, it helps patients retain dexterity and a sense of normality.  For the caregivers, this means going against their instinct to help.  Although helping may seem a kindness to caregivers and people with PD, assisting patients with daily tasks is a slippery slope.  Aiding someone with PD to button a cuff or lace a shoe on one occasion makes it more likely that they will seek help the next time.  Eventually patients becomes more reliant on the caregivers, less able to complete the task unassisted, and more frustrated by his or her own increasing limitations. 

Encouraging patients to complete tasks for themselves reinforces the central objective of their management, namely, the conservation of personal independence.  Clear communication between patients and caregivers on the importance of remaining independent is necessary.  This helps to avoid the impression that caregivers who decline to help with daily tasks are uncaring or hostile and thus to avoid the development of tension between patients and caregivers.  

People with PD should attempt to do everything themselves, even if it takes longer, is getting more difficult, and causes irritation.  For difficult daily activities, it may help to think of the tasks as a component of physical therapy (in addition to regular exercise and any therapy that has been prescribed).  The importance of accomplishing daily tasks independently despite the physical limitations of PD cannot be overemphasized.

Caregivers must remain supportive but not “enablers” of dependency.  Caregivers must let PD patients accomplish daily tasks on their own as much as is possible.  Allowing more preparation time may be helpful when planning an activity.

People with PD must commit to completing all daily activities unaided for as long as possible.  When it comes to personal independence and a disease like PD, truly, if you don’t use it, you lose it.

The Importance of Socialization

Man is, by nature, a social animal. – Aristotle, Politics

Interacting with other people is crucial to our well-being.  Social involvement helps shape our own identity, bolsters perception of our self-worth, and enables our simultaneous involvement as an individual and as part of a collective.

Just as social interaction benefits many aspects of our lives, isolation is detrimental to health [1].  A review of studies of hospital patients in isolation showed a negative impact on mental well-being and behavior, including higher scores for depression, anxiety, and anger [2].  A meta-analysis of studies of subjects in social isolation showed that without regular interaction with others, people experience more mental health issues, poorer health outcomes, and die younger [3].  Moreover, social activity and engagement correlate with significantly higher quality of life and life satisfaction scores in people living with a disease or disability, compared to those without disease/disability [4].  In quantifying predictors of quality of life in patients with Parkinson disease (PD), investigators found social isolation was second only to physical mobility as a factor in predicting poorer quality of life outcomes [5].

Recently diagnosed PD patients often report that they manipulate social interactions to hide PD symptoms – primarily tremor.  Because their motor symptoms are so visible, PD patients are less inclined to attend social gatherings.  They feel, for example, that others are staring at them or feel uncomfortable in their presence.  

What we try to convey to our patients— and what should be understood by all people with PD— is that we all differ from each other, but that these differences are usually of no importance.  Friends know and accept that someone has a tremor, just as they perceive another friend is growing bald or has gained weight.  People with PD are actually harming themselves by withdrawing and not enjoying life and normal social interactions.  Socialization combats cognitive decline [6] and gives people a sense of purpose and belonging.  

PD is typically a slowly progressive illness and patients should continue to live their lives as fully as possible.  People with PD can, and should, pursue their regular hobbies and recreational activities, particularly those that include social interactions.  Many patients with PD continue to play golf, participate in runs, travel and learn about other cultures, attend yoga and tai chi classes, audit college courses, join dance groups, lead book and gardening clubs, and so on.  While PD may add a wrinkle to these activities, it should not prevent patients from fully engaging in and enjoying them. 

Remaining socially engaged has significant positive benefits, both mentally and physically [7].  While having PD can interfere with self-esteem, previously enjoyed social and recreational pursuits remain important, feasible, and beneficial for patients. 

References

1. Cacioppo JT, Hawkley LC. Perceived social isolation and cognition. Trends Cogn Sci (Regul Ed). 2009; 13(10):447-54.

2. Bassuk SS, Glass TA, Berkman LF. Social disengagement and incident cognitive decline in community-dwelling elderly persons. Ann Intern Med. 1999; 131(3):165-73.

3. Holt-lunstad J, Smith TB, Layton JB. Social relationships and mortality risk: a meta-analytic review. PLoS Med. 2010; 7(7):e1000316.

4. Jang Y, Mortimer JA, Haley WE, Borenstein Graves AR. The Role of Social Engagement in Life Satisfaction: Its Significance among Older Individuals with Disease and Disability. Journal of Applied Gerontology. 2004; 23:266-278.

5. Forsaa EB, Larsen JP, Wentzel-larsen T, Herlofson K, Alves G. Predictors and course of health-related quality of life in Parkinson's disease. Mov Disord. 2008; 23(10):1420-7.

6. Williams KN, Kemper S. Interventions to reduce cognitive decline in aging. J Psychosoc Nurs Ment Health Serv. 2010;48(5):42-51.

7. Fried LP, Carlson MC, Freedman M, et al. A social model for health promotion for an aging population: initial evidence on the Experience Corps model. J Urban Health. 2004;81(1):64-78.

Parkinson's Disease and Constipation

Of the non-motor symptoms that accompany PD, one of the most widely reported is constipation.  While no golden rule regarding regularity exists, if a person goes more than 3 days without a bowel movement, the stool in the intestinal tract begins to harden and become more difficult to pass. 

While certain symptomatic medications for PD can lead to constipation in some people, the more likely cause is abnormal function of a part of the brain that regulates smooth muscle activity in the intestines.  One of the hallmarks of PD is slowness of voluntary movement, also known as “bradykinesia”.  In a sense, a similar slowness can be thought of affecting the muscles of the digestive tract.  The stool takes longer to travel along the intestine, more fluid is drawn out of the stool, and a harder, denser formation results.  This is more difficult for the person to pass.

Chronic constipation can be a very trying issue, but there are many things that a person can do to alleviate it.

Get Enough Fluid

Consuming enough fluid is crucial to combating constipation.  The recommendation is to drink at least 6 to 8 glasses (~48 – 64 ounces) of fluids per day, regardless of whether it is water, tea, coffee, juice, etc.  Note that the fluid requirements increase in hot weather.  Also be aware that some people may be upset by certain fluids e.g. too much coffee makes some people jittery, while too much milk may make some people constipated and give others diarrhea.

Healthy Diet

Eat a well-balanced diet with plenty of fiber.  Fiber is found only in plant foods. Foods highest in insoluble fiber are whole grains including: whole grain bread (which must contain at least 3 grams of fiber per serving as shown on the nutritional content label), cooked dried beans, and fruits and vegetables with edible skins. Fruits with edible seeds— such as strawberries—have the most fiber.

Wheat bran is an excellent source of insoluble fiber. People who experience constipation should aim for 25 to 35 grams of fiber daily. If you’re not used to eating whole-grain foods, or apples and potatoes with the skin, it is best to increase the fiber content gradually. Bloating and gas may occur as the system tries to adjust to larger levels of fiber. Products like Beano can prevent extra gas formation and may therefore help when the fiber content in the diet is increased.

Bulk Formers and Hyperosmolar Laxatives

Some people have found that the daily dose of a bulk former can keep constipation at bay.  Bulk-formers (Metamucil, Citrucel) are not digested but absorb liquid in the intestines, forming a soft, bulky stool. The bowel’s normal evacuation process is then stimulated by the presence of the bulky mass.

Healthcare providers may recommend a hyperosmolar laxative (Miralax, Sorbitol) for patients with chronic constipation.  Hyperosmolar laxatives act as hydrating agents that draw fluids into the intestine. Higher water content in the intestine results in softer stools.  It is important to drink a lot of water for the laxative to be effective, and to reduce gas and cramping.  Please consult your primary care physician before starting any regular use of a hyperosmolar laxative.

Exercise

Regular exercise is not only good for your heart, breathing, and mood, it also helps the intestinal tract to push stools along.  Exercise stimulates the contraction of intestinal muscles, and efficient intestinal muscles move stools out quicker.

Massage and Honoring the Urge

Manual belly massage from the bottom of the ribcage to the top of the pubic bone, performed 2-3 times daily, is said by some to send mechanical signals to stimulate the bowel.

Train yourself to honor the urge to have a bowel movement and be accepting of the notion that it won’t always occur first thing in the morning or only at home.  The natural position for evacuating the bowel is squatting, so things like raised toilet seat devices may hinder successful movement.  Placing your feet up on a small bench while sitting on the toilet can aid your body’s natural functions.

If all of these things do not adequately relieve constipation, consider adding regular prune juice to your diet. 

You can also mix what is known in hospitals as the Prune Juice Cocktail.

Mix together:

1/2 cup applesauce

2 tablespoons wheat bran (“miller’s bran”)

4-6 oz prune juice

Refrigerate. 

Take a tablespoonful per day at first, gradually increasing until you find the amount that works best. Most people find this mixture quite palatable.

If all of these remedies do not prove helpful, it is important that you speak with your primary care provider and ask what else can be done.  If you do not respond well to the options detailed above, your doctor may suggest Senna, a vegetable-based natural laxative.  It is important to avoid using laxatives or suppositories, unless directed by a physician.  While laxatives may provide temporary relief, allowing your body’s natural system of waste disposal to operate is a wiser course than relying on a stimulant.  Laxatives, over time, may damage the lining of the colon.

Exercise and PD

It’s something everyone should do, and yet, not enough of us exercise regularly.   Time and time again, exercise has been proven to be beneficial for all aspects of our health, but it is still hard to start—and harder to maintain— a regular regimen.  For people with Parkinson’s disease (PD), which directly affects range of movement, exercise can be even more daunting.  However, for people with PD, the benefits of exercise take on a whole new level of importance.  PD is diagnosed most commonly between the ages of 50-70, an age range that also corresponds with increased risk for cardiovascular issues.   It is known that regular exercise lowers the risk of heart attacks and strokes, and current medical opinion is that exercise may slow the progression of PD [1] and encourage the brain to regulate dopamine use more efficiently.  In short, exercise can be a neuro-protective agent.

So what’s the catch?

Most of the issue comes from how we think of exercise.  More often than not, it is running/jogging that comes to mind, when one hears the word ‘exercise’.  While a good cross-section of the public does it, only a few probably enjoy running.  Moreover the mobility issues associated with a disease like PD may make running or jogging more unappealing.

The good news is that you don’t have to run.  You don’t even have to jog.  You can just walk.  

Thirty minutes of walking, be it on the street, on the track, or in the park is just as beneficial to you as running. A 2013 study published in Arteriosclerosis, Thrombosis, and Vascular Biology concluded that equivalent energy expenditures by moderate (walking) and vigorous (running) exercise produced similar risk reductions for hypertension, hypercholesterolemia, diabetes mellitus, and possibly coronary heart disease (CHD) [2].

The Center for Disease Control and Prevention (CDC) recommends regular moderate exercise for all people, especially those over the age of 50.  Specifically, the CDC states that exercise helps to maintain the ability to live independently and reduces the risk of falling and fracturing bones, and the risk of dying from coronary heart disease and of developing high blood pressure, colon cancer, and diabetes, and reduces blood pressure in some people with hypertension.  For people with diseases like PD, exercise helps improve stamina and muscle strength, reduces symptoms of anxiety and depression, fosters improvements in mood and feelings of well-being, and can help maintain healthy bones, muscles, and joints, helping control joint swelling and pain associated with arthritis [3].

Activity is the key word for PD patients and you will find activity encompasses a lot more than walking and running.  Things like yoga, tai chi, dancing, and boxing workouts (non-contact) are all types of activities proven to be beneficial in helping to manage PD symptoms.  While more research is needed, initial studies on the benefits of a regular low-impact activity (e.g. tai chi) show that balance and coordination improve, reducing the risk of falls [4].  

When it comes to activity, along with the possible benefits of increased well-being and stability, what should be highlighted is dose/frequency.  A symptomatic medication only works if you take it regularly, in a dose high enough to combat symptoms.  The same is true for the benefits of exercise and activity; walking once a week for 10 minutes isn’t going to help much, but walking 5 days a week for 20-30 minutes will.  

So back to the opening sentence, how to start and maintain a regimen?  Our colleagues at the NPF have created a one-page tip list that could be beneficial in kick-starting your exercise routine.

The take-home message is that people with PD don’t have to run marathons to access the protective benefits of exercise.  Moreover, there is a wide swath of activities that can help with PD issues.  Before embarking on any exercise program, it is important that you consult with your primary care provider and they agree that your plan is realistic and safe for you.  A check-in with your neurologist would be good as well, but less essential (you may prefer to impress them with the results down the road).  What is important is that you don’t start and stop because you aren’t seeing the results after a couple of weeks.  As our medical director is fond of reminding patients, when it comes to neuro-protective agents, you’ll never know how well it’s working, because none of us can predict the progression of your PD.  It is crucial, however, for body and mind to remain active, healthy, and engaging in life.  

Stay Active!

PDCRC Team

1. Ahlskog JE. Does vigorous exercise have a neuroprotective effect in Parkinson disease?. Neurology. 2011; 77(3):288-94.

2. Williams PT, Thompson PD. Walking versus running for hypertension, cholesterol, and diabetes mellitus risk reduction. Arterioscler Thromb Vasc Biol. 2013; 33(5):1085-91.

3. http://www.cdc.gov/nccdphp/sgr/olderad.htm, accessed on June 3, 2015.

4. Li F, Harmer P, Fitzgerald K, et al. Tai chi and postural stability in patients with Parkinson's disease. N Engl J Med. 2012; 366(6):511-9.

Parkinson's Disease and Hospitalization

Hospitalization is not something that most people plan for; however, for patients with Parkinson disease (PD), planning is imperative.  Patients with PD are hospitalized more often and for longer durations than similar-aged populations [1].  The initial reasons for hospitalization of persons with PD are not related to their PD in most cases.  Although higher incidences of hospitalization may relate to the motor disturbances of PD, other reasons of hospitalization are those that commonly affect anyone over the age of 50, such as cardiac incidents, pneumonia, and other infections [2].  However, treatment of PD can complicate an in-patient stay and thereby extend hospitalization time and delay recovery.  

The National Parkinson Foundation (NPF) has created a program called Aware in Care (http://www.awareincare.org/pd-and-hospitalization/) that provides a small kit containing items to help PD patients while hospitalized.  In addition, there is guidance on how to best help educate healthcare professionals on the disease and a summary of 10 steps to optimize healthcare.    Advice is also presented for hospitalized patients with special issues related to PD, such as DBS placements or acute balance issues.

Patients should inform every doctor, nurse, or healthcare professional with whom they come in contact that their medications must be taken at their regularly scheduled times.  This is important because most hospitals do not allow patients to control their own medications.  Emergencies, shift changes, and other care interruptions may delay medication regimens.  Missing a scheduled dose of medications can affect comfort, dexterity, gait, and other motor functions.  In rare instances, care disruptions can be grave or even life-threatening.  

What the Aware in Care program strives to do is educate PD patients on issues related to hospitalization, so in turn they may advocate for themselves and ensure their needs are met by hospital staff.  Most health care professionals are not movement disorder specialists, and many do not understand the specific needs and issues surrounding PD, which makes advocacy on the part of the patient of the utmost importance.  

If you are a person with PD or know someone who is, please consider ordering an Aware in Care kit from the NPF.  They are provided free of charge, and with a little effort can be stocked and ready for any eventuality that leads to a hospital stay. 

NPF Helpline and Telephone Order Number for Aware in Care Kit

1.800.4PD.INFO (473-4636)

http://www.awareincare.org/

References

1. Low V, Ben-Shlomo Y, Coward E, et al. Measuring the burden and mortality of hospitalisation in Parkinson's disease: A cross-sectional analysis of the English Hospital Episodes Statistics database 2009-2013. Parkinsonism Relat Disord. 2015; epub ahead of print.

2. Aminoff MJ, Christine CW, Friedman JH, et al. Management of the hospitalized patient with Parkinson's disease: current state of the field and need for guidelines. Parkinsonism Relat Disord. 2011;17(3):139-45.