Adjusting to living with Parkinson's

Integrating the ongoing changes that become necessary as Parkinson’s disease progresses. Living with Parkinson’s disease is a process of continual adjustment for the person who has it as well as family members and caregivers. Many people are able to make relatively few accommodations for five to 10 years or more after diagnosis, provided that anti-parkinson’s medications control their symptoms with few side effects. During this time the disease continues to progress, however, and subtle changes are taking place whether or not they are readily apparent.

Physical Adjustments

As it is typically physical symptoms that cause a person to seek the medical attention that leads to a diagnosis of Parkinson’s disease, it is the physical changes of the condition that become the focus of treatment and adjustment. A key question all people diagnosed with Parkinson’s disease have is, What will happen to me? Unfortunately there is no clear answer to this question. There is neither predictability nor consistency to the progression of physical symptoms. some days the body seems to work almost normally, while other days it behaves as though possessed. Simplifying the physical environment makes these variations easier to accommodate. Removing throw rugs, for example, eliminates potential obstacles when walking becomes difficult. Replacing round doorknobs with lever-type handles, adding railings in bathrooms, and rearranging kitchen cabinets to minimize reaching and stooping are other changes that are easy to make early on.

Conscious focus on physical functions seems to improve them for many people. concentrating on moving one foot in front of the other, for example, as though lifting it through the effort of thought, sometimes overcomes problems such as freezing of gait. Focusing on the tremor in a hand can sometimes temporarily calm it. Making every effort to continue using the body to the fullest extent possible helps to keep the body functioning as well as possible. Learning to compensate for changes, from brushing teeth with the less-affected hand to switching to slip-on shoes gives a sense of control.

Emotional Adjustments

Many emotions flood through a person who receives a diagnosis of Parkinson’s disease. Fear and worry often lead the list as concerns about what the future holds more to the forefront, exacerbated by the unpredictable nature and many unknowns of the disease. There are fears and worries about what will happen to the person with Parkinson’s as his or her body changes with the disease’s progression. There can be disbelief or denial. once a pattern of familiarity settles in regarding symptoms, frustration and anger might step in, as the person questions why this has happened to him or her. Depression and anxiety are common companions, as both elements of and responses to the symptoms of Parkinson’s disease. Mood swings are also common.

As in any life-altering situation, it is important to have others to talk with and share these emotions. Friends and family need to know that it is all right that they do not have answers. What matters is that they are willing to listen, comfort, empathize, and support. structured support groups, often sponsored by local Parkinson’s disease organizations, senior centers, and health care centers, provide a safe environment for sharing reactions and feelings with others who are having similar experiences.

Social and Relationship Adjustments The diagnosis of Parkinson’s disease is a shock to family and friends as well. They are concerned for the person diagnosed, of course, and for themselves as well. What does this mean for their relationship with the person? The person who has Parkinson’s disease also has these concerns. it is important to be open and honest in communicating about worries and fears. It is also important to recognize that relationships with spouses or significant others, children, siblings, and friends continue.

A person with Parkinson’s disease sometimes is reluctant to socialize, especially when symptoms are less effectively controlled. gait and ambulation difficulties might make a brief trip to the grocery store take three or four times longer and appear awkward enough to draw attention. changes in bladder function alter the context of nearly any social outing. Yet with compassion, planning, and a sense of humor, adaptations not only are possible but also help to maintain joy and pleasure in living.

Planning and Preparation for Future Needs It is challenging to plan for the unknown yet essential to prepare for the future. There are many facets of planning to consider, from medical care and insurance needs to the possibility of assisted or residential living arrangements. Who will be the primary caregiver? Who will make care and other decisions for the person with Parkinson’s disease when that becomes necessary? Making these determinations before the needs arise averts much anguish among family and friends, allowing the person’s wishes to be fulfilled to the extent possible. Financial and estate planning makes management of assets more efficient and effective.

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