I have been asked by a number of people for access to some of my older blogs, particularly those that are no longer available on the American Parkinson’s Disease Association Uniquely Young Onset blog. I have also been asked to repost some of my writings from other venues.
Although we tend to think our neurologist is treating the Parkinson’s disease, the truth is that his actual scope of treatment is quite limited. The bulk of the treatment will be provided by people who have no medical training.
A physician evaluates the symptoms, progress, and response to the therapies she has previously ordered. Based on the medical knowledge and clinical experience that doctor has acquired, she then prescribes medication, supportive interventions such as PT, advice about disease management, and as time allows, answers to questions the patient or accompanying family member might have. A new appointment is arranged and a new patient arrives. Other than email exchanges and perhaps a phone call or two, this typically is the extent of the neurologist’s involvement in overall PD treatment.
The actual delivery of any treatment is typically made by the patient and/or the family. When the illness is a chronic one such as PD, there can be both physical and cognitive changes that limit the patient’s ability to provide himself treatment. When this happens, medical care for the disease falls almost completely upon family members. Regardless of whether the actual treatment is delivered by a patient or a family, the result is a feeling of being drafted into a job they have never been prepared or trained for.
At best, this system for treatment delivery is going to be haphazard. Some will master it but a sizeable number will not. Those of us who are sophisticated medical consumers may fare reasonably well in providing effective treatment. However, adequate and effective delivery is going to be confounded by factors such as education and socioeconomic status, among others. And, as treatments get more complex, as they do over the course of PD, it is increasingly likely they are going to be administered by the dictates of convenience, misunderstanding, and best guesses.
Anyone with PD who has been hospitalized can confirm this to be the case. Long-standing habits of drug administration are disrupted by med-cart schedules and the workload of the nursing staff. The experience of hospitalization demonstrates that even health care agents who should be reasonably knowledgeable do not necessarily follow a neurologist’s orders.
This is an area we have all tacitly agreed not to look at too closely. However, we need to initiate a discussion.
The present system is much like throwing someone in a river and expecting (or hoping) they will learn how to swim. I have spoken to enough physicians frustrated by their patients’ seeming inability to follow carefully crafted treatment designs. This is often described as outright non-compliance. I have also spoken to plenty of men and women who are frustrated by disappointing effectiveness of these treatments. The problem, I think, is that we are spending far too much time and resource in educating families with PD about the disease and its effects and far too little in teaching nuts and bolts management.
Time after time, we rely on patients and their families to forge a plan for treatment delivery, causing a perpetual rediscovery of strategies already proven to work. As the focus of the Parkinson’s community increasingly shifts to matters of quality of life, it is critical we do not ignore the most basic impediment to that goal. At present, there is no training system for optimal PD management in place for those who will actually be delivering the care, nor are there quality controls in place to increase the likelihood that this management is accurate.
Yet, because of the high level of involvement of academic institutions and non-profit groups, we do have the resources to make this happen. It an pretty much be done in the same methodical way research is conducted. Manualized and video-based training with phone and web-based follow-up provides both quality programming and a high level of quality control.
High quality PD treatment does not arise from a partnership between physician, the patient, and the family. It arises from a clear understanding that continuity of care is needed and the family and patient are a critical component for allowing this to happen. Teaching our lay treatment team members what to do and how to do it enhances the overall quality of care.
Parkinson’s disease presents challenges all year long but it can be particularly challenging when traditional holidays roll around. Holidays are stressful for everyone but for individuals with PD, that stress is magnified many times over. One way to ease the stress is to recognize aspects of the disease that are particularly problematic. Here are a few thoughts for getting through the season:
Fatigue is a fact of life for individuals with PD from very early in the disease process. When we see family and friends in a festive atmosphere, the natural tendency is to enjoy as much time as possible with them. However, when one has PD, it is easy to forget that because there is a limited amount of energy available, one can easily tire. Over the short term, the body is like a battery. Draw too much energy too quickly and it becomes impossible to muster up action for anything but the most routine activities. Pacing is the key here. Think quality over quantity and chose activities which are meaningful and enjoyable.
The holiday season focuses a great deal on gifts, which in turn puts considerable pressure on people to shop. This presents the threat of becoming part of the throngs of people at stores and shopping malls. With advancing PD, crowds can be a source of anxiety. Thus a person may be torn between a desire to become part of the seasonal generosity and a fear of encountering an ocean of people. The internet is always a good alternative to in-person shopping but sometimes, it makes sense to schedule shopping for times when fewer people are out and about, like weekday mornings just as the stores open.
PD can make communication slower. The need to gather thoughts that do not come as quickly as in the past, coupled with changes in voice volume that make it a challenge to be heard, can present real conversational challenges. Conversation is a dynamic, evolving process that is impossible to predict and prepare for. This is particularly the case when a group is large. It is possible to minimize frustration by interacting within smaller groups, preferably one-on-one as possible.
The holidays increase the risk for depression for all of us. When we add PD to that mix, the risk for sadness and loss of enjoyment becomes very high. Increased stress increases the intensity of depression so all of the techniques discussed thus far are very helpful in limiting mood problems and perhaps even turning them around. Emotions and memories of seasons past often affect our perception of holidays. This can be a time when a person most feels the losses that come with PD. Push back against the depression by resolving not to allow it to steal the warmth of the holiday from you and your family. If the depression feels overwhelming, seek out professional help early so you do not lose the opportunity to form new memories.
The greatest enemy of a warm, enjoyable holiday is expectation of what a holiday should be like. Being as modest as you can in your expectations allows you to be surprised rather than disappointed. There is no ideal holiday only the holiday we make happen.
I wish all a warm, happy holiday.