MAKING THE MOST OF YOUR APPOINTMENTS WITH DOCTORS AND OTHER PRACTITIONERS

“It’s amazing what you learn when you listen to people with Parkinson’s”

(Professor Robert Iansek, Neurologist specialising in Parkinson’s disease, Melbourne 2001)

Your chosen health practitioners can be of enormous support in your journey to wellness. They may also be enormous obstacles to be overcome. By choosing the right practitioners, and learning to communicate in the best way, you can create a team of helpers who will be partners on your great adventure.

Your Health Practitioner Team (HPT) may consist of one or more of the following; Neurologist, General Practitioner, Naturopath, Herbalist, Homeopath, Bowen Therapist, Masseur, Acupuncturist, Cardiologist, Rheumatologist, Urologist, Functional Neurology Chiropractor, etc. The extent of your current HPT will largely depend on the length of time since you first displayed symptoms of Parkinson’s disease, other sets of symptoms (seen as separate “diseases”) you may be seeking treatment for, your sense of adventure and responsibility in dealing with your health issues, and your belief about your rights and obligations regarding doctors.

Let us be very clear about this most important area of our health care. There are excellent practitioners in every modality – Western Medicine and Complementary Medicine. There are also very bad practitioners in every modality. And sometimes it is difficult to know the difference!

GOOD HEALTH PRACTITIONERS

A “Good Health Practitioner” is one who suits our needs at the moment and is prepared to be a partner or companion on our journey. Our choice may change as our health changes. Some important criteria are:

Location: is the practitioner easy to get to? While you may need to travel significant distances to reach the best person for your needs, where the choice between two is equal, choose the one easier to reach. Do not be seduced by claims of being the “foremost expert” in Parkinson’s disease, for instance, and travel long distances to get there. This generally means that they have more interest in the disease than they have in you, and the extra travel means extra stress on your body and mind.

Personal Description: do you prefer dealing with a man or a woman? Do you relate best to younger or older people? Do you prefer working with someone of a particular racial or religious background?

Experience/Qualifications: given that any practitioner you choose will hold at least the basic, legal qualifications for their modality, do you prefer to see someone who has undertaken extensive post-graduate studies to extend their knowledge or someone who has extensive practical experience with challenges similar to yours? Or can you find someone with both?

REVIEWING YOUR RELATIONSHIP

If you have entered this program, you have been diagnosed with Parkinson’s disease, and so have probably seen one or more Neurologists and/or General Practitioners. You may also be working with one or more Complementary Medicine Practitioners or other specialists. This, then, is a good time to review your relationship with each practitioner, and make a choice to continue seeing that person, or look for a replacement, or discontinue that particular form of medicine. Answer the following questions about each practitioner – you may want to write the answers down:

• Is your Health Practitioner patient and willing to explain the rationale for tests and treatments to your satisfaction?
• Does he or she share options with you and allow you to participate in decision-making?
• Is your Health Practitioner interested in partnering with you and helping to educate you, rather than just issuing orders and expecting you to follow them?

• Does your Health Practitioner believe in, work with, or encourage al­ternative, holistic, or complementary approaches? If they are a Complementary Medicine Practitioner, do they support the benefits of Western Medicine and help you make choices in that regard, and express willingness to work with your Western Medical Practitioners?

• Does your Health Practitioner take time to get to know about you and your feelings? Does he or she truly listen?
• Does your Health Practitioner answer your questions, and not rush through your visits without covering your key concerns, and not become impatient when you ask for further expla­nations?
• Does your Health Practitioner and his or her office staff treat patients and others with courtesy and respect, not keep you waiting excessively, and return calls or faxes within a reasonable amount of time?
• Will your Health Practitioner read materials you provide to him or her?
• Does your Health Practitioner encourage you to do your own research?

(Paraphrased from pp280/281 of “What Your Doctor May Not Tell You About Parkinson’s Disease”; Jill Marjarma-Lyons, Neurologist, Florida, USA; Warner Books, 2003)

My Experience

My personal and clinical experience shows me that there are still very few Health Practitioners who meet all of the criteria listed above.

General Practitioners: are often constrained by the medical system in their country that demands that the doctor sees a large number of patients each session, limiting consultation time to around 10 minutes or even less. This places great strain on the doctor and precludes them from becoming as involved as they wish in their patients’ health. A number of General Practitioners in Australia have left medical practice because of this pressure, or moved into “Integrative Medicine” so they can spend more time with each patient. Western Doctors are trained to diagnose disease and give treatment for the symptoms; and most do that well.

Integrative Medical Practitioners/Holistic Doctors: are usually doctors who have become frustrated with the limits of Western Medicine and the pressures of General Practice, so look to “Holistic Therapies” to help their patients. Unfortunately, spending extra time means they charge very high fees (often $200 plus for the first 40 minute consult) that cannot be claimed as rebates, and demand many tests that may or may not be relevant. Integrative medical training seems not to include the art of listening or taking a full life history and making accurate assessments of needs from that information. A few Integrative Doctors also become linked to multi-level marketing companies and “push” those products whether they are the best for their patients or not.

Integrative/Holistic Doctors can be valuable allies on your journey, but you need to make sure that you tell them exactly what you want to achieve, be wary of paying for a large number of tests on the first visit until you have established an understanding with them, and be constantly be aware that these doctors remain bound to their training of diagnosing symptomatic processes leading to disease, and treating those. They certainly are more likely to treat such things as gut dysfunction, nutrient deficiencies or surpluses, obesity and dietary abnormalities than traditional Western Practitioners, but I am yet to have contact with any practicing Western Medical Practitioner (Integrative/Holistic or otherwise) who understands or chooses to work with changes to the hypothalamus in early childhood, and the results of this.

Neurologists: are doctors specialising in the workings of the brain and nervous system. They spend twelve years or so gaining knowledge and experience in General Medicine, then more years focusing on this limited part of human existence. There is no doubt that Neurologists have a very deep knowledge of the mechanics of sets of symptoms diagnosed as various “diseases”. This knowledge is often very helpful in that it can guide us to choosing particular ways to help ourselves.

Neurologists focus on identifying particular “diseases”, understanding the disease process as seen by Western Science, and treating that particular process with a variety of exogenous (outside) therapies such as pharmaceutical drugs and surgery.

Few Neurologists allow the possibility that we can help ourselves, or that we are the real “experts” on our body. However, there are a few, and I “share” patients with several who are quite comfortable with their patients finding their own way to improve health, even though the Neurologists concerned do not fully understand my work and choose not to make contact with me. If you can find an open-minded, supportive Neurologist, you are, indeed, lucky.

Naturopaths: are “general practitioners” of Complementary Medicine. They are trained in a variety of modalities that may include nutrition, herbal medicine, homeopathy, dietary supplements, Flower Essences, counselling, bodywork and others. Most have a general practice covering all types of health issues. Many are open minded about patients exploring a wide range of healing modalities. However, some Naturopaths demand that their clients do everything that they ask and only that. Some also oppose the use of Western Medicine in conjunction with Complementary Medicine, and this is unfortunate and, occasionally, dangerous. A growing number of Naturopaths, unfortunately, are becoming linked to various multi-level marketing companies and basing their practices around these products. These are practitioners to avoid at all costs.

Homeopaths: are highly skilled in the art and science of homeopathic medicine. This modality can be of enormous benefit when used wisely and in conjunction with other self-empowering therapies. Homeopathy is probably the best proven medicine practiced today with thousands of studies proving efficacy and safety. Many of these studies are double-blind, randomized, placebo controlled trials – the “gold standard” of medical evidence.

Homeopathy cannot, despite all claims, “cure” Parkinson’s disease. But then, as discussed earlier, nothing can “cure” any person or any disease; but we can get well.

Herbalists: are skilled in the art and science of dispensing herbal medicines to improve health. Again, these medicines can be enormously valuable as part of our journey to wellness, but not as an exclusive therapy. Beware of arrogant practitioners who claim they can “cure” you.

Other Medical Specialist: may be urologists, cardiologists, rheumatologists, etc. These people may be very helpful while symptoms persist. Remember, however, that most degenerative symptoms are the result of the long-term degenerative process described in earlier eClasses. They are NOT “separate diseases”. As you improve your health and reverse the process leading to the development of Parkinson’s disease symptoms, these other “diseases” will also reverse (slowly) and, over time, you can become completely well, if you persist and are truly dedicated.

Remain in contact with your specialist while you need to, but remain aware that YOU are the answer to all unhealthy symptoms. Be wary of undertaking invasive or toxic therapies (toxic drugs or surgery) unless they are required to save your life in the short term. And don’t just take the doctor’s word for that. Do your own investigating. One of my clients was told that if he stopped taking a particular drug, he would die. But the drug was damaging his body so severely, he was likely to have a significantly shorter life anyway. Over two years, we improved his health and, very slowly, reduced the drug in question until, today, he is free from that drug and the health condition it was treating no longer exists.

SO YOU WANT TO CHANGE PRACTITIONERS!

It is your absolute right to change health practitioners at any time. Don’t allow yourself to be trapped into an unsatisfactory medical relationship because some smart medical “expert” or legal representative, or union, or health-care insurer tells you that you must. You are the only “expert” on your body, and only YOU know who best suits your needs today.

When looking for a new practitioner, make some telephone calls first and ask questions like the following:

• Are you accepting new patients at this time?
• Is a physician/doctor referral required?
• Are you an individual or group practice?
• If I have an appointment with you, will I be seen by you or by another doctor/practitioner?
• If I’m going to see another doctor/practitioner, will I have advance notice?
• Who covers for you when you’re unavailable?
• How long in advance do I have to make an appointment?
• Do you keep slots open for emergency appointments?
• Do you charge a fee for unintentionally missed appointments? How much is it?
• Do you accept patient phone calls?
• Are calls scheduled for a specific time of day?
• How soon do you typically return calls?
• Do your nurses return calls for you?
• Is advice given over the phone?

• Do you accept patient e‑mails?
• Do you accept patient faxes?
• What are your customary fees?
• Do you accept my health insurance coverage or Medicare, or are rebates available?
• Is full payment required at the time of the appointment?
• What hours are you available?
• Do you refer patients to alternative treatments/western medical practitioners?

If a doctor’s office isn’t interested in providing you with at least some of this information in advance, then you move on to someone else who is more responsive. Doctors who don’t recognize that patients are clients to whom they provide a service often aren’t productive in the long run.

(With thanks to Jill Marjama-Lyons, M.D., Neurologist, Florida, USA. Paraphrased from “What Your Doctor May Not Tell You About Parkinson’s Disease”, pp 279/280, published Warner Books 2003)

MAKING THE MOST OF YOUR CONSULTATION

Even the most patient, understanding Health Practitioner has a limit on the time he/she can spend with you. Health Practitioners are also “only human”, so need lots of information from you in order to assess the advice most valuable to you.

To gain the best value from any visit to any practitioner, it is wise to be prepared, and follow some guidelines. The ideas below have been gleaned from my own experience, talks with a large number of Health Practitioners over the past ten years, and discussions with hundreds of clients who have experienced both good and unsatisfactory visits to practitioners.

• Take someone with you if at all possible. A friend, spouse, child, parent, sibling, carer. A lot of information will be exchanged during any consultation, and two people can hear and absorb much more than one. Your companion can listen more objectively, as they are not as caught up in the “emotion of disease”, so may hear some information more clearly than you.

• Ask your companion to participate in the conversation if they see you becoming stressed or agitated. Prepare them beforehand to speak some calming words to you, or to ask your practitioner to wait a moment.

• Take Rescue Remedy (Bach Flower Remedies), Emergency Essence (Australian Bush Flower Remedies) or similar with you, and use it as often as need during the consultation to keep you calm and open to hearing what is said.

• Whether you have a companion or not, take notes during the consultation and/or record the conversation. Remember that your practitioner’s notes reflect their understanding of the conversation, and your understanding may be different. Your notes/recording may clarify important points for you.

• Before the consultation, write down all the information you wish to pass on to your practitioner, and all the questions you want to ask. You may want to prepare these in such a way that you can pass a copy to your practitioner, but talk through the information anyway to make sure your practitioner understands.

• Prioritise your questions, number them, and write clearly and succinctly. Make sure you are asking the question you want to ask. For instance, if you want to ask, “How can I work to reduce or eliminate my dopamine agonist drug?” don’t beat around the bush and ask “Are you sure this dopamine agonist is helping me?” You may want to know about a specific therapy. Be direct and ask that, rather than enquiring about “new therapies” or similar.

• Be aware that your Health Practitioner may not be able to answer every question. If he/she can’t provide the information you need, ask them where you may be able to get it.

• Be absolutely honest with your practitioner. If you notice certain symptoms are worse or better, say so. If you are unhappy with some form of treatment, say so. If you are investigating or trying other therapies, tell them. Your practitioner can only treat you in accordance with what you tell them and their observations in the short time you are together. In my experience, clients have struggled with some symptoms for many months because they simply did not point them out to me. Once known, it was easy to bring relief. Sometimes they have been experimenting with other therapies (and they have every right to do that), but didn’t tell me because they thought I might be upset. Unfortunately, some therapies offset the gains previously experienced by neutralising the work of Bowen or the Aquas, or similar. Many months were wasted in my frustrating attempts to help before they told me of the new therapies, and we were able to resolve the matter.

• Do not leave until your questions are answered as far as the practitioner is able, unless he/she genuinely runs out of time (this can happen). In that case, obtain a promise of written answers, or make another appointment soon to gain answers. If your practitioner needs to do some research to answer your question, ask when you can call to obtain an answer.

• Take your Journal to every visit to every practitioner, as this is the record of your health progress. Your pre-consultation notes may include extracts from your Journal, or you may wish to highlight significant points and tag those pages so you can easily refer to them during the consultation.

• Write up a summary of each visit as soon as possible after. Perhaps on the way home, or as soon as you get home. Put your notes in order, transcribe any recorded information, write down your impressions – were you happy with the conversation or disappointed? Did you get what you wanted from the consultation? Was there any effect on your symptoms before/during/after the consultation? Did the value of the consultation outweigh any stresses or disadvantages?

• Keep a portable file of your health care. This can include notes on previous consultations, test results, X-ray or MRI reports, letters to and from practitioners, and so on. Keep these in a portable expander file, or filing book (there are a large range of practical solutions available these days) so you can take it to any consultation and refer to matters as needed.

• Ask for, and insist on, a copy of any test results obtained by your practitioner. You paid for the test/scan, and you have a right to the results. Too many tests have “disappeared” in large clinics or hospitals after the patient “unexpectedly recovered”. You have a right to a complete record of your wonderful adventure. If your practitioner does not hand over the results, or fobs you off, put your request in writing and keep a copy. In Australia, you are entitled to copies of all tests and scan reports, and doctor’s notes via the Freedom of Information Act. Working tough this is ponderous, so it is much better to gain cooperation from your practitioner where possible.

When you review each consultation, if you feel positive and happy, that your questions were answered to the best ability of the practitioner, and that you are able to look forward to your next visit, then you are with the right practitioner. If, on the other hand, you feel upset, depressed or agitated; if your symptoms have been exacerbated, or you could not get answers to your questions; if you felt that the practitioner, or a member of their staff, was rude or impatient with you, then you need to think about finding someone else.

I want to close this eClass with some more words from Jill Marjarma-Lyons, M.D., Neurologist, from Florida in USA.

“Just as positive, caring words can have a dramatic impact upon patients by giving them hope, encouragement or guidance, negative, unfeeling, or carelessly chosen words can do just the opposite, by taking away hope and creating unwanted fears, anxiety, or depression. One of my patients told me that the first doctor she saw who diagnosed her with Parkinson’s disease said, “Do you think you know more than me about Parkinson’s disease? You just let me tell you what to do. I’m the doctor here.” Needless to say, she never went back to see him again.

We are all guilty, myself included, of saying things we regret, or simply not thinking before we open our mouths, and not realizing the impact of the words we are about to say. In the world of medicine, we have to do a better job; we have the power to hurt or help with the words we say.

And so if you are a person with Parkinson’s, I strongly encourage you to seek out health professionals who talk to you on your level, listen, and are positive in their behaviour – especially in the words they use. I also encourage you to let them know if they have said something that has upset you. Dialogue should be a two-way street, and you should always voice your opinion loud and clear. Good, effective communication will allow you and your health care partners to provide better treatment for you.”

(“What Your Doctor May Not Tell You About Parkinson’s Disease”, page 289, published Warner Books 2003)

Dr. Marjarma-Lyons’ words are true for all health Care Practitioners; doctors, specialists, naturopaths, Bowen therapists, counsellors and many more. You have the power to choose practitioners who treat you respectfully and honestly, and who walk a positive pathway with you towards recovery.

Create a team of positive, loving people. You deserve it.

References

• COLEMAN John ND; “Stop Parkin’ and Start Livin’”; Michelle Anderson Publishing, Melbourne, Australia, 2005.