Living with Parkinsons Disease
When first diagnosed, patients may deny their illness. This takes multiple forms; they question the diagnosis; travel from specialist to specialist in the hope that the diagnosis is incorrect; avoid medical appointments or avoid evaluation; refuse to tell anyone (including family and friends); and refuse dopaminergic treatment, even if warranted. Denial can be a barrier to seeking appropriate treatment and support. It can also serve a positive function in creating an attitude of “I’m going to fight this and not let it control me.”
Going from being a well individual to someone with a chronic, progressive disease is a major transition, and in Parkinson disease, one accompanied by more psychological issues than motor problems early in the disease. There is a sense of disbelief (it can’t be), anger (why me?), and then a gradual acceptance that this is a disease that one must learn to live with successfully.
The biggest adjustment is the realization that one will never return to the pre-illness state and the sense of obliviousness one used to have about one’s body. The patient’s strongest wish is to return to normal. Often patients will tell their physicians “I just want to get rid of this symptom.” It is another adjustment to recognize that the treatment goal is not to extinguish all signs of the illness (which lead to over-treatment of Parkinson disease), but to maintain functionality.
In the wish to avoid being labeled by the illness or identified by it, patients often refuse to tell anyone about the diagnosis. They do not want others to know they have a chronic illness, or to be labeled a patient or, even worse, an invalid. They fear that suddenly they will be viewed differently by their family, children, friends, employer, or work mates. Their privacy may feel violated. Not all patients experience this to the same degree; age of onset and the point at which they are in their career may influence their reaction. The decision to discuss or not discuss the diagnosis is an individual choice that each patient must make, taking into account the specific impact it may have for them.
Having a chronic illness raises concerns about who we are (our sense of identity) and what we may face in the future. The patient is often concerned with:
•Will this interfere with work? •Will this interfere with economic well-being? •Will this interfere with roles as a partner, spouse, parent? •Will this interfere with other relationships? •Will this change privacy, autonomy, independence? •Will this change the customary way of life now enjoyed? •How quickly will the disease progress? •Will I become an invalid? •How will the disease be managed? •Will adaptation be successful?
A chronic illness, and one with known progressive qualities, always produces an unknown sense of the future. Patients struggle to understand and control the disease. The level of control over the course of the disease is limited. However, patients can control and influence how they adapt to the disease and and how they manage it.
Adapting to the illness is difficult for patients. They must adjust to having a diagnosis, recognize that their life is being changed, maintain their independence, and at the same time acknowledge when seeking help is appropriate. They need to recognize that at times they may feel helpless in the face of the disease, but that they can adapt and live full lives with it.
As PD progresses, patients may have difficulty in adjusting psychologically to the challenges that PD may present. This can result in problems not only for the patient, but impact on others close to the patient. These difficulties can include:
•Persistent high levels of anxiety •Intrusive thoughts •Body self-absorption •Hypersensitivity •Social withdrawal •Inability to tolerate frustration •Anger •Depression
If problems such as these persist, they should be discussed with a physician. Psychological services may be helpful in resolving them. It should be emphasized that adapting to a chronic illness can be a difficult journey. The fact that one is having difficulty is not a sign of character weakness or failure. Facing the problems and seeking help require courage and resourcefulness.
Adapting to Parkinson disease and managing the disease includes making adjustments over time in several areas:
•Lifestyle & work life •Concerns of the spouse or partner •Telling the children
Lifestyle & work adjustments
As the disease progresses, some changes are required in lifestyle. Hobbies, once enjoyed, may become more difficult. Although one may no longer be able to do the specific hobby (playing a musical instrument, for example), a related activity can be substituted and enjoyed (attending a concert or listening to music). Patients are often very creative about substituting activities for things they feel they can no longer do. Mountain hiking may be changed to long walks along the beach. Joint activities with a partner/spouse may need to be creatively changed. Playing golf may mean 9 holes rather than 18, or watching matches rather than playing them. Although all these changes represent a painful loss to the patient, adjustments can be made successfully with time.
Lifestyle for each patient is an individual matter and changing it requires a thoughtful assessment of what is most important about the current lifestyle, what can be adjusted, and what has to be completely changed. It is helpful to discuss potential changes with those most impacted by any decision – spouse, partner, family. Lifestyle changes can be induced by changes in employment, finances, or disability.
Many Parkinson disease patients have successful, satisfying work lives, and often early in the disease make no changes in their normal work habits or routines. As Parkinson disease progresses, patients may need to evaluate what they can realistically continue to do and what needs to be altered. Patients can create enormous frustration in themselves and their partners by refusing to make any accommodations to the fact that they are more symptomatic. Some patients have deliberately over-medicated themselves to get through a stressful, demanding job, only to end up prematurely disabled by motor fluctuations later. It is very important to discuss concerns about ability to perform at work with a physician. Certain problems may be addressed by adjusting PD medications, but others may not be helped.
It is important to ask:
•Can you continue to function in your job at the same level? •If not, what part of your job has become more difficult? •Can adjustments be made so that you can address those difficulties at work? •Can you continue your job with different expectations? •Is anything at work a safety risk for you? •Can you change your job to one more appropriate to what you can do? •Should you consider disability?
Analyzing the work environment, job duties, performance standards, and job complexity and type, may provide clues as to what adjustments can be considered. Fatigue at work is often cited as a major problem. Check whether PD medications may be contributing to the problem. Can medications be adjusted? A mid-day nap during the lunch-hour can be restorative. Schedule important business meetings or difficult tasks at a time in the work day when you tend to feel your best. Can you reduce your hours, over-time, travel time? If writing becomes difficult, can you use a computer to take notes? If changes in voice volume become problematic in meetings, can someone else on the team do the presentation? Safety risks at work need to be assessed. Tasks once safely performed may now pose a safety risk. Climbing/descending a ladder or carrying boxes with both hands may be hazardous if balance is a problem.
Not all positions allow for individual adjustments, such as changing one’s work schedule or job assignments, and it may be necessary to include your employer, union representative, manager, or team leader when considering any changes.
The Americans with Disabilities Act (ADA) entitles all qualified individuals the right to a job, regardless of disability. It also requires reasonable accommodations in the workplace for a disabled worker. This can include adjustments in work schedule, work assignments, or modifications in the workplace for equipment or devices. In seeking a new job, after diagnosis, the law prohibits employers from inquiring about health status, until after you have qualified and been offered the position, and only if it directly impacts on specific areas of performance.
Telling your employer
Telling your employer that you have PD is a highly individual decision. Many factors go into the decision: job vulnerability, fear of reprisal or discrimination, fear of impact on future work evaluations, the need to explain changes in your performance, and the sense of an employer’s willingness to make adjustments in job duties or performance time-lines. However, if your job poses any hazard for you to perform, openness and honesty is crucial for your safety. Employers may have noticed some change in your performance, and bringing it up for discussion may give them an opportunity to understand the situation and make adjustments to your benefit.
Work provides a satisfying arena for individual accomplishment and satisfaction. For most Parkinson disease patients there is no reason not to continue working. However, there may come a time when working becomes increasingly difficult and too demanding, frustrating or unrewarding. Many of us identify closely with our chosen career, and giving it up may be very painful to consider or do.
Having a chronic illness raises many concerns for the spouse, partner, or family of a Parkinson disease patient. They too worry about the unknown future, the risk of disability, job loss, economic loss and increased dependence. They too can suffer from anxiety and depression.
It is important to engage your partner in discussions of your fears or concerns, so that a dialogue can occur. It is important for your spouse to feel that they too understand the disease, and what are appropriate expectations for a PD patient at different stages of the disease process (Am I expecting too much or too little from the patient?). Include them in physician visits, so they too have an opportunity to ask questions or raise concerns that they have. These are the individuals in a patient’s life that provide important support and care.
Some partners have great difficulty adjusting to the required changes when someone has a chronic illness, an illness that will not get better but will likely get worse. Discussion may prove too anxiety-producing for them; they refuse to engage in any discussion of Parkinson disease and, often by default, provide little support to the patient facing the illness. It is not necessarily deliberate in intent, but an avoidance of situations that create anxiety. The health of the relationship and future planning related to Parkinson disease depends on this being resolved, and professional assistance may be required. Each couple handles things differently, but avoidance or resentment by either partner threatens the relationship and successful adaptation to the illness.
Role change in Parkinson diseaseD is not uncommon. As the patient no longer is able to do things they once could, the spouse/partner may need to assume these responsibilities. These role changes are individual to each couple. They can include handling finances, gardening, cleaning the house, driving, ironing, duties related to children and/or grandparents, or entertaining at home. The list is endless. Role change is complicated by several things. We all carry within us an idealized view of our role and the role of others. Some roles we may be delighted to let go of, others we feel as a profound loss. Some roles are new and must be learned. Some we have done all our lives and resent giving up. The “breadwinner” patient may feel a sense of loss of confidence or loss of status within the family, if they no longer are the primary wage-earner.
Another factor influencing role change is the attitude of the person assuming the roles that the patient can no longer perform. It is not a minor adjustment for patients and their families. It has the potential to create problems in the relationship and build resentment by either partner. It is critical for the patient to do what one would in any good relationship, i.e., discuss concerns, address fears, plan before any change is needed, and evaluate the change. Is it working?
•What roles do you currently have in the family? (bread-winner, gardener, cook, fiscal manager) •What roles are becoming more difficult for you? •What about the role is difficult? •Can the role be broken down to different tasks? •Can you continue all the tasks, some of them, or none? •Can some of the difficult parts be handled by someone else - your partner, child, hired help? •Is the one assuming the role knowledgable, ready, and willing to take it on? •Which roles are critical to the family’s well-being? •Will the person assuming the new role feel overwhelmed, burdened, anxious? •What measures can be taken to reduce anxiety and burden?
Role change is a major transition for the patient and for any others involved. It is accompanied by many feelings, some positive and some negative, which can feel overwhelming and in the process raise feelings of disappointment, resentment, and anxiety.
Most patients and their families adjust rather well to changes in their role pattern, but one cannot assume everyone will have an easy time of it. It is important to discuss these things before any changes are actually required, giving everyone a chance to assess, plan, and adjust for the future.
Telling your children
Patients may be reluctant to tell their children that they have been diagnosed with Parkinson disease. Often this reflects a fear that their relationship with their children will alter and that they will be seen differently by them - no longer the strong, in-charge parent, but a weaker version of what once they were. A chronic illness impacts on children as well as a partner and telling them may enable them to cope with changes that they may be observing but do not understand. An open discussion can be beneficial to all concerned. Young children can understand if the information is presented simply and as a matter-of-fact. They will take their emotional cues from the patient. If the patient is matter-of-fact, children will not feel overwhelmed or burdened by the information. Children will benefit from the opportunity to ask questions, voice their fears (is it contagious, will you die?) and seek reassurance. The patient will benefit from the opportunity to explain the changes that their children may be observing, explain why they may not be able to do certain things, and establish realistic expectations for what they can do with their children.
Adolescents, already often embarrassed by just having parents, may find it difficult to accept the physical changes that accompany Parkinson disease. Children may go through similar stages as the patient (denial, resentment, anger, acceptance) as they attempt to understand the changes in their life. If children are having difficulty in accepting the situation, professional counseling can be considered but is usually unnecessary.
Help can be obtained in several ways. It may involve seeking assistance and permitting others to help the patient at home or at work; seeking help from specialists for specific PD problems; obtaining help from an agency that specializes in particular services; hiring help, such as housekeeping, shopping, and gardening services; obtaining help through the use of auxiliary aids; seeking help from support groups; and seeking knowledge from PD organizations to help the patient and their family through the course of the disease.
Patients may be reluctant to seek help. It may mean recognizing that symptoms are worse or some new ones have developed. It may mean spending more time with specialists when patients are already seeing multiple physicians. If patients are reluctant to pursue a referral to physical, occupational, or speech therapy, let that be known to the physician. It will permit an honest discussion, and one in which reluctance can be addressed. Reluctance at one point in time can change to willingness at another time. This process can be frustrating for the family member who is expecting the patient to immediately act when the patient is unwilling to do so.
Patients value their independence and have their own internal view of what makes oneappear old or disabled. Certain auxiliary aids threaten the sense of independence (real or not) and signal to the patient that they are disabled or will now appear old or disabled to the public. Often suggestions related to using a cane, walker, or wheelchair are met with great resistance. Although the patient is clearly unstable and could benefit from an auxiliary aid, they avoid using them as they are a visible sign to the world, and a signal to themselves that they no longer are completely independent. Patients have their own internal time line before they are ready to adapt and accept something that might threatentheir sense of self or independence. If it appears that patients are reluctant, keep the discussion open, be understanding, and allow the patient to articulate their hesitation.
Support groups offer help from those afflicted with the same disease. Members can relate to the problems you are experiencing, or offer helpful tips, as they themselves have experienced the same problems. Some groups are face-to-face, whereas others may be internet chat rooms. Patients are often reluctant to attend a support group, as they fear seeing what they may become. It is important to investigate the group being considered. Talk to others who are part of the group, ask about the group process – is it a small, intimate group or a large group that changes members each time, or one that has monthly speakers as its main focus? If one group does not have appeal, try another in the same geographical location, as they may differ considerably.
Whatever help is needed, it is critical for the patient and family to remain open to using it. Resources may be available, but not utilized. Obtaining help is one of the major contributions patients can make to managing their own disease.
The above information was contributed by Mariann Di Minno, RN, MA, and Michael J. Aminoff, MD, DSc, of the Parkinson’s Disease Clinic and Research Center at the University of California, San Francisco.