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Regaining Control of Your Life – A Neurologist’s Viewpoint, part 1

Professor Sharon Hassin-Baer

Professor Sharon Hassin-Baer is a neurologist who specializes in Parkinson’s Disease and Movement Disorders. She is head of the Movement Disorders Institute at the Sheba Medical Center in Tel Hashomer, Israel and holds many academic and managerial positions at a national level. We were honored to have the opportunity to sit down with her for an in-depth conversation. In this first part of our talk with her we focused on the role of the patients and their family members in managing the disease, as well as on patient career and patient empowerment

Article Main Questions:

Patients often go to their doctors and expect them to save them from their illness. How do you ensure that patients are actively involved in their own care?

This is a very important issue. Our role as doctors is to empower our patients by educating them, by giving them tools to face the challenges that will appear further down the road – and they surely will. Some challenges are a direct result of the disease, while others are caused by the treatment or even by the reaction of others. The more knowledge and tools I give the patient to help them manage on their own, the better I am being at helping them.

From the moment a patient comes into my clinic, I explain to them what they're up against. My colleagues are always laughing at me. My colleagues ask me: why do you tell your patients about all the side effects they might have? Once they hear the list of side effects, they'll start imagining they are having them. I take the opposite approach: I prepare my patients. I tell them: you may have this, which is a side effect, but you may also have that, which is actually a desired outcome of the drug.

There must be a great sense of anxiety when a patient is diagnosed. What is your approach to managing patients’ expectations regarding the progression of their disease?

When a patient comes to see me it's usually after they've been diagnosed, and they need to understand what they're going to be facing. They still have hope that their condition might not progress at all. Sometimes they come to me for a final diagnosis. They want me to make a final ruling, that they really do have Parkinson's.

I tell them, “Parkinson's is now part of your life, making things a little more difficult.” Fortunately, modern medicine has come up with many drugs over the past fifty years that can alleviate symptoms, in particular Parkinson's motor disturbances. My goal is to give them a sense that at every stage of the disease, it is possible to reach stability. People can be stable for very long periods of time - months, even a year or two. True, it's a progressive condition, but we have tools to cope with it. Sometimes the patients suffering from the most debilitating anxiety surrounding their diagnosis are those who later cope remarkably well and have good quality of life. There are countless examples of patients who have reached far beyond anything they could imagine.

When a new patient comes to see me, I tell them that they may have some tremors, move a little slower, and that this is what happens with Parkinson’s and we can treat it. We gradually progress toward more potent solutions that are just right for the patient – not too much, but not too little. We can also treat a very broad range of non-motor symptoms – constipation, urinary problems. Once a symptom appears we address it. A patient can decide whether to live with it or take a drug to manage it. Then I tell them that their situation is manageable, that people manage their symptoms successfully, and I share other patients' stories with them.

Usually my message is: it's a condition that happens, it's not because you did something wrong. I want to help reduce people's guilt and anxiety by telling them: it's a common condition, many people around us have it and you don't even know it. It is something we can manage. Sure, it sounds scary, maybe you've done some reading and it frightens you, but we can manage it. Your job as a patient right now is to be present at every stage of the disease in order to improve your own quality of life. This means doing things you enjoy, that matter to you, being there for those who are important to you and enjoying their company and allowing yourself to live a good life with this disease. It is treatable. There are many different options for addressing the different aspects of the disease, and some people maintain a very good quality of life over many years with this condition. You have to think about here and now, not about what might happen twenty years down the road. You have to have hope, I can't expose them to all the negative aspects right away. We all know what will happen in twenty years. If I am seventy years old now, I'll be ninety. We know what being ninety-year-old is like and what kind of health issues ninety-year-olds have. We can't help it; we are born, we grow up, and we get old. As we get old, all kinds of challenges arise. It's a fact of life; the circle of life isn't something someone just conjured up.

One of the most reassuring things I tell patients is that life isn't over once the diagnosis is made. You can live with this thing. I tell them that getting diagnosed isn't easy for anyone. That they are not alone in their grief and sadness, but that we can push through it and reclaim their quality of life. It will be a slightly different life, but they can choose what to do with it and even be highly accomplished.

One of my patients is a fifty-year-old lady who used to be a superwoman. Good-looking, skillful, successful, in a good relationship, and all of a sudden she was hit with Parkinson's. She completely broke down and felt absolutely worthless. She came once to see me, after which I didn't see her for a while. Nine months later she came in again and said that she had not taken any medication and instead exercised a lot, because that was what she had been told to do. Now she is slowly accepting her condition and she realizes that she can keep on living with it.

Every person goes through their own process, and that process is individual both in length and in depth. I take them through it step by step, trying to stop them from thinking what might happen ten years down the line.

They may have seen other patients around them with strong tremors, bad dyskinesia, who are hunched over, who drool. I tell patients: "I don't know what form your Parkinson's will take, but you might end up having a great outcome. Let's wait and see. You might feel perfectly fine and say – 'It was worth it; my life has value. I spend time with the people I love, I enjoy being there for my children."

Little by little, patients realize that they aren't making an effort only for themselves – they're also making an effort for their significant other and children.

I always show them the full picture. I tell them that they might get better with treatment, but I also remind them that there is always some degree of uncertainty and that I can't tell them exactly what changes they might undergo or how significant those changes might be.

How does a patient’s family come into play when managing treatment?

Treatment goes beyond the individual patient. Thankfully, most patients come in with family members, and I always consider the people who live with the patient and support or can potentially support them. This tells me about their social support and helps me better understand the patient. We talk about whether they should tell their children about the condition, when would be the right time to do so, how much should be shared with the patient's employer, whether to get the extended family involved. We also talk about the role of the spouse and close friends.
We give a lot of attention to patients' significant others. A patient's most immediate relative, usually their spouse or one of their children, often becomes their case manager. At some point along the way, depending on the patient's condition, the case manager becomes the focal point of treatment management.
We should support case managers, give them some responsibility, but not put everything on their shoulders. And many times, we as doctors can help them strike a happy balance. I sometimes ask the patients to bring their children along so that we can decide together what part of the challenge each can undertake. For example, parents might be very protective of their children, saying that they are very busy. When I ask: "well, can't they come over once every two weeks?", I find out that the parents hadn't even asked. They are so protective that the child might even feel alienated. Sometimes when children lend a helping hand it makes them feel better about themselves, too. They feel happier and more valuable.

We have to be mindful of case managers' well-being, too. We need to allow them to put aside any guilt they may carry and remind them to take care of their own health – both emotionally and physically. They often neglect their own health as they care for a Parkinson's patient. One way we approach this is by talking about the patient's welfare. We ask, "How can you care for your husband or wife if you are sick yourself? You have to take care of your own health."

I also encourage case managers to get help and support, not to become full-time caregivers. For example, if they qualify for benefits and there is appropriate space at home, they can hire a live-in caregiver. I see many people who sacrifice themselves to help alleviate the patient's suffering. Sometimes, even when they do decide to get help from a caregiver, the spouse still has a hard time taking a step back. They sometimes feel that only they know what's best. Part of our job is to keep the patient’s family on even keel, too. I encourage patients to do things together that make them happy, to lift each other's spirits. I also come across people with no support structures – divorced people with no one to support them, people who have never developed any meaningful relationships. This can be tough.

A person’s occupation plays an important role in many people’s sense of identity and meaning. When working people are diagnosed with Parkinson’s, what decisions are they facing with regard to work?

The whole issue of retirement is a big one. I often get asked: Should I stop working now? Do I have to stop working? Often, people don't want to retire, but they struggle to keep up with a demanding work environment. Sometimes the disease appears right before a significant career leap. These are incredibly talented, accomplished people and I need to help them decide what to do with their career. They also wonder whether they should share their diagnosis at work. Parkinson's is often visible externally, even on the patient's face. A patient's face sometimes offers a glimpse into the disease.

As a doctor you don't always know what to say because you're not there with your patient at their workplace. For example, if they have a cognitive impairment which slows down their thinking while their work is a high-paced one, it can be very challenging. I always ask patients what they want. How do they think they are perceived at work? Has anyone noticed any difference? Are they getting by? Do they enjoy working? And that gives them the answer they're looking for.

Discovering the disease is an opportunity for a change of course. It's an opportunity for patients to do what they truly love doing. They can try to think what they haven't accomplished yet, what they've wanted to do that they've neglected, and realize that they can still enjoy all these things. For example, a person who hasn't taken the time to cultivate hobbies because they were busy working, constantly looking for the next challenge, now realizes they have Parkinson’s, and that life can be different. They start taking care of themselves, listening to themselves, discovering new skills they didn't know they had and spending more time with family. Some of my patients have cut back on work and they couldn't be happier.

On the other hand, some patients go too far by interpreting their disease as meaning that they are completely dysfunctional. I try to lead them towards activities that are within their abilities. A lawyer may find it hard to argue cases in court, but they can still work as a lawyer. A university professor who struggles with preparing lecture slides can get a research assistant to help them. This lets them stay at work longer and feel valuable.

Do you encourage patients to find other resources outside the clinic and be proactive about managing their condition?

I refer patients to associations and societies for patients with Parkinson's disease because many activities take place within associations, and some activities are even available online. This also enables people to share their experiences. That's another reason why I encourage patients to take part in these activities - to hear other patients' experiences and find encouragement.

Some incredible patients become Parkinson's influencers and role models, like the professor of Economics who took up ballroom dancing. In addition to improving his own condition, he also spread the word across Israel. This is a man who not only took the initiative and found what worked best for him, he also shared his discovery with everyone. He set up dance centers in collaboration with dance teachers, advertised them using his standing in the community, and made this field attractive to health care professionals as well. I tell patients about inspiring cases.

Those who manage their disease proactively and put themselves out there to help and empower others have a big effect on many other patients, especially nowadays given today's social media. At some point, proactive patients start giving back to the community. I have many patients who become mentors to other patients. We also now have online conferences and community activities. People have more access to resources, and this helps patients to manage their own disease. That's something we didn't have before.

Do you feel that media coverage helps patients become more informed? Is there a limit to the role of mass media in discussing medical issues?

When patients come to me and ask to undergo a particular procedure even though it might not be right for them, I tell them that things are more complicated than their depiction on television. Recently there was a story in the news about an older patient who was treated with Deep Brain Stimulation (DBS) and then went on to play soccer. In this particular case it wasn't doctors, or the industry, who promoted this treatment – it was a particular patient or the patient's family, and that might be misleading for some patients. Patients see this sensational information that quickly becomes the talk of the day. By over-simplifying this highly sensitive, complex medical information, we are giving patients a very strong bias that essentially takes away their right to choose what's appropriate for them.

I find this very upsetting. My first reaction to this was anger – how could they do such a thing? It's so simplistic, even misleading, to present things in black-and-white, as if to say that everything was terrible before the procedure, and now everything is perfect. Only doctors who work in this field know how complicated such a surgery is at that age. There is no magic bullet. But with this kind of strong message any patient would say: "I have to get one myself." However, life is more complicated than that, especially with these patients and with this procedure.

THIS ARTICLE DOES NOT PROVIDE MEDICAL ADVICE and is not a substitute for professional medical advice, diagnosis or treatment. If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment immediately. Never disregard professional medical advice or delay in seeking it because of something that you have read on this website or in any linked article, blog or other materials.


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