Parkinson's Disease Patient Handbook (eBook)

Introduction:
I Have Parkinson’s Disease, Now What?

Deborah Hall, MD PhD

Getting a diagnosis of Parkinson’s disease (or PD) for most patients can be unexpected or downright shocking. Fortunately, there is a large amount of information and many people who are trained to help you navigate this new journey. Our understanding of what happens in the brain in Parkinson’s disease is much better than many other brain diseases. There are proven therapies that can improve symptoms and quality of life. In many situations, these therapies are prescribed by physicians and team members who devote their entire careers to treating Parkinson’s disease patients and moving the science forward. Our team has experience in treating all types of Parkinson’s patients, young and older, men and women, tremor dominant or not, and offer this handbook to be a guide in your own journey with this disease.

“At the time my husband was diagnosed, we didn’t know much about PD. I was aware of excessive movements. It wasn’t a devastating diagnosis. We said ‘OK, oh well’. We made a commitment to sign up for every symposium and read books about this disease. We wanted to keep it from moving it along too fast. My husband is Japanese and raised in the Buddhist tradition and he believes that birth and death are on a continuum. He is less afraid than others might be. It also makes my life easier in taking care of him. He has acceptance and determination to do his best every day. I count my blessings every day.”

(Kitty)

“When I got the news, I was knocked off my feet about the diagnosis. I am a breast cancer survivor and I thought that I had used up my bad luck in my life having cancer. I had retired at 62 and it was not a year and four months later and I was diagnosed. I remember that I was on a trip and had walked all over the place and when I came into my room and I started shivering. I realized that I was having a tremor and it was terrifying. As a nurse, I thought I had a brain tumor or spread from my prior cancer. This just came out of nowhere. It completely floored me. I went to see my PCP and I had done some research. I said, “I am worried I have PD” and the PCP said the same thing. My husband was not with me and I think he might have been in denial.”

(Lynn)

Basics of Approach

This handbook has been designed to give you information in many areas that are disease related. Your personal approach to the disease may depend on your personality. Some people will spend some time grieving before thinking about telling others or considering medications. Other people may choose to gather information, engage friends and family to help make decisions, and talk to others with Parkinson’s disease. For each person, this journey is different. What is clear is that many decisions you make in the disease can impact your quality of life and your symptoms.

In general, the symptoms and signs of Parkinson’s disease are different from person to person. What one person experiences may not be the same as a friend or family member with Parkinson’s disease. This is important to remember when talking to others, looking up information on the internet, or attending group events. One patient may have primarily tremor and constipation and another patient may have mostly balance problems and memory loss. The reason for this is that the disease changes at different rates and in different brain regions from person to person. In the next chapter, an introduction to Parkinson’s disease will explain the background and signs of the disease in more detail.

Treatment will also vary depending on the types of symptoms and stage of disease. Patients early in the disease who may not need medicine will want to increase their exercise and consider research studies that test medicines or therapies to slow the disease down. Later in the disease, patients may need fine tuning of their dopamine medication regimen, physical or speech therapy, or consideration for surgical therapies. Later chapters in the handbook will address medication, non-medication and surgical therapies for Parkinson’s disease.

“I am an eternal optimist and I was hoping it was something other than Parkinson’s disease. I did want to find out and know. That was 20 years ago and there was much less information. I was pretty morose for 6 weeks after my neurologist gave the diagnosis. There was a lot of uncertainty about what the diagnosis meant. I didn’t know what the treatments or management were. But, I feel like the resiliency of the human spirit wins out. You can throw your hands up in despair or deal with it.”

(Lamar)

“When my husband was first diagnosed, he was very hesitant to tell others that he was diagnosed. I kept urging him because I thought people would be more empathetic. Eventually, the word got around and it was fine. When he did start to tell people, he did not experience anything negative. He was fortunate, I think.”

(Kitty)

Your Parkinson’s Disease Team

Most Parkinson’s disease patients will see a neurologist or movement disorder specialist for their care. When patients are suspected to have Parkinson’s disease, their health provider will refer to a neurologist for diagnosis. Patients who live in a rural area without access to a neurologist may be primarily managed by their primary care provider. A general neurologist is a physician who has spent three or more years training in neurology, the specialty of diseases of the nervous system. Movement disorder neurologists have an additional 1-2 years of training in Parkinson’s disease and other movement disorders. They tend to be located in academic centers or larger cities. The team of individuals who are involved with your care in a clinic setting may include a number of individuals. Neuropsychologists are trained to perform memory or ‘cognitive’ testing and can do counseling for patients and families. Advanced practice providers, such as physician assistants or nurse practitioners, can help the physician with return visits or new patient intakes. Nurses and medical assistants support the team with patient check-in, patient phone calls, and completion of paperwork. Some neurosurgeons are trained in Parkinson’s disease interventions, which may be recommended for some Parkinson’s disease patients.

“My husband was diagnosed 23 years ago. We were pretty aggressive about staying informed and getting in touch with his doctor at Rush University when we have concerns or there are health changes between appointments. We rely on the expertise of the Movement Disorders Group at Rush and take advantage of patient education materials. It’s been just in the past two years that PD has limited my husband to any degree and he knows how fortunate he is to remain this healthy for this length of time.”

(Dorothy)

“When I was diagnosed, I felt I had to wait and see what was going to happen. When I met my neurologist at Rush, she was so upbeat and I really hit it off with her. She was new to the facility and I didn’t want to wait. I just had the feeling that what the doctor thought whatever the disease threw at me, there were tools in the toolbox that could be used. I wanted to think about medicines and came back a couple of weeks later. She gave me some options for treatment and I started on medication later that year.”

(Lynn)

“My initial diagnosis was negative. I was alone and I didn’t bring my husband with me. It was outside of Rush, the doctor said, “I hate to tell you this but you have Parkinson’s Disease”. I didn’t know people other than Michael J. Fox. One of my closest friends was a therapist and she had a husband with a best friend who had have Parkinson’s Disease. He was getting his care at Rush so I came to Rush too. My first exam was so different at Rush. I was such an uplifting experience and that there was hope. We became a team. What I said to him mattered and he listened and together we formulated a cocktail. I have been in control and in shape ever since.”

(Sherry)

Personal Commitment

Parkinson’s disease is disease that requires that you, the patient, to take an active role. Your health providers want to partner with you to give you the best quality of life possible and this requires a personal commitment to work together as a team and to follow recommendations that may be challenging.

This could mean exercising every day when you do not feel motivated to do this. This could mean setting an alarm to take a medicine at an unusual time of the day. This could mean asking for help from a caregiver for an activity you are used to doing on your own. These recommendations are supported by science, a lot of which has been conducted at Rush University Medical Center.

“Besides going to the Rush symposiums, we also joined support groups and special exercise sessions. The first one we did was the Hubbard street dance program. That became a great support group for us. It was fun dancing with each other. We also made friends with other newly diagnosed patients. Tools that I used to cope with my husband’s diagnosis included books. One of the best books was Arthur Kleinman’s the “Soul of Care”. He sums it up well. You become very much aware of your own needs and what you need to do to be a...