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Patient perspective: Parkinson disease

Patient perspective: Parkinson disease
Author:
Steven S Hamel
Section Editor:
Kelvin L Chou, MD
Deputy Editor:
April F Eichler, MD, MPH
Literature review current through: Feb 2022. | This topic last updated: Nov 08, 2021.

INTRODUCTION — This topic was written by an individual patient diagnosed with Parkinson disease (PD). It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

(See "Clinical manifestations of Parkinson disease".)

(See "Diagnosis and differential diagnosis of Parkinson disease".)

(See "Initial pharmacologic treatment of Parkinson disease".)

(See "Management of nonmotor symptoms in Parkinson disease".)

(See "Palliative approach to Parkinson disease and parkinsonian disorders".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10th to 12th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:

(See "Patient education: Parkinson disease (The Basics)".)

(See "Patient education: Medicines for Parkinson disease (The Basics)".)

(See "Patient education: Parkinson disease symptoms and diagnosis (Beyond the Basics)".)

(See "Patient education: Parkinson disease treatment options — education, support, and therapy (Beyond the Basics)".)

(See "Patient education: Parkinson disease treatment options — medications (Beyond the Basics)".)

BACKGROUND

Signs and symptoms — The early stages of Parkinson disease (PD) frequently go unrecognized. They are noticed but get assigned to some other cause. For me, I have been a lifelong recreational athlete, with a multitude of orthopedic injuries. The physical and cognitive challenges of early PD were completely different for me. There was no obvious cause, and no easy remedy. As symptoms accumulate, you wonder, is this anything?

During a ski trip about eight years before my diagnosis, I could only turn in one direction. My right foot felt like it was cemented in the boot. But it didn't prevent me from skiing altogether. Some skills dropped from one outing to the next, with a year or two in between. Other changes were more precipitous, like losing the ability to shoot a basketball between the fall and spring the year I was diagnosed. (See 'The 'a-ha' moments' below.)

Aging gets the blame for most symptoms. Stiffness in the shoulders was attributed to prior rotator cuff surgeries; a dragging of the right foot was assigned to multiple knee procedures. Aging is a great big file to which you can assign puzzling symptoms. It's easy and requires little thought. It discourages further scrutiny.

Cognitive changes — In my late 40s, I was concerned about my aging brain. Whenever I discussed it with my peers, the feedback was, "Yeah, me too." How do you know what is normal? I did a lot of reading about brain aging and how to combat it. I was convinced that routine was the enemy.

I left my job of 23 years to change it up. I was an air traffic controller at a local en route center, a place where I knew hundreds of people. I took a new job at an airport tower. The change, learning all new names, faces, and different work procedures, would challenge my brain to be bigger, faster, stronger.

It was a good theory. In practice, it was much more difficult than I ever imagined. I was a 45-year-old trainee, learning a new game at one of the busier towers in the United States. I was certainly challenged. I was also convinced that my inability to remember rules and rote information was poorer than what would be considered normal for my age. I retired two years earlier than my longtime plan. It was not solely because of poor cognition, but my performance was not up to my standards, so it played a role.

The 'a-ha' moments — My family had a good time making fun of my loss of smell, before any of us realized its meaning. Twice after letting Rocky, our dog, out for his late potty break, I let him back in after he'd been sprayed by a skunk. I could taste the odor in my mouth, but it wasn't very strong. I rather enjoyed not smelling something burn in the kitchen; it seemed like a net gain to lose some of my senses. I never questioned why.

Getting worse at sports was harder to brush off. Once, after my son and I were hitting softballs in a batting cage, he proudly posted video of his old man driving pitch after pitch deep into the netting. I could at this point play softball and basketball at a level I was proud of. A year later at the same cage, I was timing the pitch, stepping into the swing, and the ball would barely reach the pitching machine. Dead bat, I assumed.

An early spring day brought my biggest "a-ha" moment. My basketball court had thawed from winter. I shot the first ball about 20 degrees off-line, 5 feet short. Complete airball. I laughed and kept shooting. Shot after shot was way off target. I noticed my right arm wouldn't extend to finish the shot. I had "gator arms," as it's known in hoop circles. I tried from the foul line, where I always tested myself in sets of 10. I couldn't reach the front of the rim. A free throw required the energy of a half-court shot. I went inside, and for the first time, I told my wife there was something wrong with me.

Seeking medical care — Seeing a doctor was always on my backburner. Meanwhile, time and the aging process marched forward. New to my arsenal was walking while dragging my right foot, and no arm swing in my right hand, which was beginning to tremor on and off. My father had essential tremor, no big deal.

Maybe the biggest change was my voice fading into oblivion. My wife was always telling me to speak up, that my voice was becoming a whisper. I also had prostate problems, an upcoming knee replacement – plenty to keep the medical community busy.

Finally a urologist — Urinary incontinence had become a real issue. Very strong urges, having to go just minutes after I had last emptied. Tough symptoms for a guy with a hobby of tail-gaiting at sporting events. My primary care physician said my prostate seemed fine and couldn't explain the issues I was having. A highly recommended urologist checked me out and found little reason for my troubles. He prescribed medication to help with the incontinence and told me to see a neurologist. It was already on my list, but it was now time to make the call.

DIAGNOSIS — The neurology appointment seemed routine. I was seeing him mainly for the urology part. He asked about the tremors and had me perform some tests that included watching me walk. We discussed my gait, and I did some other nondescript exercises. Then he said, "You probably have Parkinson's." That was it. No further details or explanation. We actually laughed about it on the drive home. What a quack.

It was maybe a few days later that my wife and I were on our laptops, and she directed me to a website that she found. The heading was something like, "12 signs that you may have Parkinson's." Tremor, small handwriting, weak voice, loss of smell, lack of arm swing while walking, rigidity in the shoulder, trouble swallowing, slow and small movement, urinary frequency with strong urges. Check, check, check. And yet I had dismissed the diagnosis and the doctor. I had no idea what this meant, or where to go from here.

Upon follow-up, it was explained that there is no test for Parkinson disease (PD), it was a clinical diagnosis. They ordered a DaTscan, which I was told over the phone was not indicative of PD. The report seemed to say the opposite, and I asked my primary care physician for his opinion. He contacted the neurologist, and a second call presented the results as confirmatory.

It was now obvious that this was real, but I had lost confidence in the neurologist. He told me I would need a movement disorder specialist going forward. I asked around for respected names and came up with a wish list. The big names were all booking three months out.

TREATMENT — I had a lot of time to self-educate while waiting to see the movement disorder specialist. I now see this gap in time as an egregious disservice in my treatment. The internet led me to believe that medications were to be avoided for as long as possible. You can really draw some wrong ideas without direct communication.

I kept two separate doctors as my movement disorder specialists, meeting them both within a month of each other. It was such a relief to do specific testing of my memory and cognitive skills. With a purposeful diagnosis and baseline in front of me, my questions were being answered. My fears of medication were heard, and the effects of medication use versus avoidance were laid out loud and clear. I understood the benefits and risks of my options.

A plan was becoming clear. My future was changed from prediagnosis, but I was shown a path to living with the disease via specific plans and expected outcomes.

COMMUNICATION — In hindsight, I struggle to state what should have happened the day that I was given the diagnosis, in part because I didn't believe it to be true. Until my DaTscan, I was holding out hope that the whole thing was a big mistake. Acceptance took a long time.

The general neurologist's recommendation to seek a movement disorder specialist was given in a very direct manner. He left me no doubt that he believed this to be an almost mandatory direction. I appreciate that he showed me a path to the best possible care, and he gave me a few names, which were consistent with the names that others had given.

Initial communication with the specialists was great. Both gave me all the time I needed to answer my questions. They were very knowledgeable and answered my concerns. One practice was at a large urban healthcare center, nationally renowned, but ultimately too big for my taste. I chose to continue with a suburban office that had a more personal feel. I am able to speak to a human by phone.

One of the most important aspects of the initial consultations was the inclusion of my wife in every aspect of treatment. The reality of the diagnosis bears a heavy weight on the family, and that was demonstrated from the beginning.

IMPACT

Psychological — The psychological aspect of Parkinson disease (PD) is a great burden. PD reminds you of its presence first thing in the morning, when you pour a cup of coffee, or when you're asked to sign a check. Going out requires a bathroom strategy. Boarding an airplane is an exercise in self-control, quieting a dozen or so phobias of what could go wrong.

Loss of executive function is exhausting. Driving a car is less of an involuntary action than a necessary feat of multitasking. Your brain will not allow you to finish making the toast without shifting focus to the two bowls in the sink that need to be rinsed; then you end up in the pantry wondering what you came for. You often quit conversations midsentence, completely forgetting what was being discussed.

Family — Family members are forced to suddenly shift their goals and expectations. The future of growing old gracefully takes a hit. A majority of patients will end up unable to care for themselves, many with dementia.

Understanding the limitations of a formerly efficient person must be frustrating. Spouses adopt new strategies to help their partners function more effectively. Making lists, texting reminders, using visual aids such as calendars. A well-discussed date or task simply vanishes from memory, as if it never existed. Names of longtime neighbors and extended family are easily forgotten. Communication is difficult. The weak voice is probably my wife's greatest frustration.

Cosmetic — As a person with PD, I believe I could identify a fellow patient in a crowd with a high degree of accuracy. This is without considering the tremors that the public believes are the signature symptom of PD. At its very core, PD affects the ability to control movement in the entire body. The facial movements can be rigid and slow to respond. A person with a masked face stares too long, and their face no longer reflects the emotions they are feeling accurately. They appear to be uninterested, not paying attention, or even intensely angry.

I first encountered PD in a group setting at my first session of Rock Steady Boxing (RSB) (see 'Exercise' below). I noticed a very similar facial mask in most of the crowd. I later looked through recent photos and discovered, not surprisingly, that I also wear the mask. Combine this with a low, monotone voice, and a once-confident conversationalist is now very awkward socially.

Before knowing of my PD, I had social encounters where acquaintances would ask if I was okay, with respect to my health. It began to be obvious that I wasn't aging in a handsome fashion. I couldn't explain a weight loss of 20 to 30 pounds. I only connected these events later, after my diagnosis.

How I look publicly shouldn't matter, but it has changed the desire to be social. My slow, heavy movements are always on display. I drag the affected-side foot when I walk. The affected arm doesn't swing. I order food differently, favoring handheld foods rather than risk putting on a show with shaky utensils.

Negative changes — PD takes the human body to a sloth-like state. That's the best way I can summarize it. Movement becomes short and slow, posture becomes bent. Speedy movements like throwing a ball can't generate momentum. It takes a fraction of a second longer to move the foot from the gas to the brake, which borders on unsafe. Handwriting becomes illegible. Shaving the face is an adventure. Swallowing is hard; even emoting is muted.

Cognitively, the memory is affected. Most people report losing recall skills and being forgetful as they get older. I wish I could explain how it is different with PD. I can't, other than that most people with PD will agree that it has a completely different feel to it.

Positive changes — I've tried to chronicle what PD is. It is not curable. It is livable. It is not a death sentence. There is hope for treatment. There are medications that treat individual symptoms effectively. It is a progressive disease, meaning it will get worse. There is a belief, backed by science, that you may have a say on the speed of progression.

Research has shown that specific exercise regimens can significantly slow the progression by targeting balance and coordination, along with fast explosive actions and brain-teasing activities. Patients with PD can live full and active lives decades after diagnosis.

REFLECTIONS AND ADVICE

Where I am now — Parkinson disease (PD) is marked in time by your date of diagnosis, which I find to be lazy. When I was diagnosed, I know for a fact that I had the disease for close to eight years. This is worrisome, because the clock has been ticking. Yet it also demonstrates that the progression is slow.

I have gone from not wanting to tell anyone to being very open about it. I come from a large, close family. My diagnosis was in the fall, and I didn't want to ruin the holidays. Also, I really didn't know how to answer all the questions being presented. PD felt like it was my burden to shoulder, and obviously my wife's. Now that it is more obvious in my movements and appearance that something isn't normal, I have become more open. I wear T-shirts with the Rock Steady logo and inspirational slogans. I find extra motivation to be an example to my PD family.

I have the good fortune to be retired, which allows me to treat fitness as a job. I exercise almost every single day. This is a luxury that most patients don't have. I know many who have far more debilitating symptoms than I have. I feel their pain, and I wonder how they do it.

My future is uncertain, just like anyone else. I have a greater urgency to address bucket list items, and I hope the ever-changing landscape of medicine comes up with a breakthrough treatment from which all of us can benefit. I enrolled in a study in which I gave a punch biopsy sample that might help in the diagnosis of PD. I'm open to doing others. My biggest hope is for a miraculous solution – one that returns me to the basketball court or the side of a snowy mountain. Pollyanna, sure. But I prefer that, in lieu of wondering when my next symptom may arrive.

What will my day look like a year from now? — With any luck, I'll head to the bathroom for a shower, a shave, and to brush my teeth. All of which will remind me that I'm not normal. Breakfast will let me know that I don't swallow pills or food easily, and hopefully I won't spill my coffee.

I'll grab my gym bag and head out for the gym. On the way, I will turn up the radio and sing to some oldies at the top of my lungs. This is a strategy from voice therapy to keep the vocal muscles from getting weak. It's kind of fun, and I enjoy the looks I get from other drivers. I'll keep a larger gap than normal behind cars, due to the slow movement of my right foot going from gas to brake. Sometimes I wonder how much longer I will drive.

My workout will be brain teasing, with fast, long movements. I will try to focus on the body parts that are slowing down, without obsessing over what I'm neglecting. Many of the gym regulars are aware of the PD participants in the boxing class. They often ask me how I'm doing, and without fail I tell them that I'm fine. Things could be a lot worse.

What I have learned — I have become a much more emotional person, which is on the list of PD symptoms. I recall it being called "weepy," which is accurate. A routine oldie on the radio can make me weepy with little justification.

PD is called a snowflake disease, meaning that no two people will have the same set or sequence of symptoms as the disease evolves. Every PD journey is unique to that person. I think this aspect of the disease is quite unique to PD.

I have come to face how little the average person knows about PD. This brings about a peeve that many of us share. To most, PD means that you shake and twitch, and Michael J Fox has it. That was the extent of my knowledge prediagnosis, so I get it. The assumption is, if you're not shaking much, you're dealing with it fine.

Ask a person with PD how they're doing, and they'll usually say "fine." End of conversation. Fox, in his latest book, says that if pressed for more, he responds with, "How much time do you have?" At times, you wish more people understood; in reality, it's probably best not trying to educate others.

Don't give in — Before diagnosis, as the early symptoms began, I took some pride in how I dealt with them. The early tremors made shaving my face an adventure, as I emerged with a dozen or so facial nicks daily. I took pride in becoming a lefty. I became adept at shaving, eating, even doing crosswords with my left hand. The dexterity arrived quicker than I expected.

What I didn't realize was that's exactly what Parky wants! My dominant hand became a spectator, sitting idle while my left hand reached across my body to shift the car into gear. It was quickly becoming a hanging piece of meat. I forced myself to relearn my former way. It isn't easy, and I have regressed in many ways. Never, though, without a fight.

Use it or lose it — This is the most frequent advice I give. I've had workout shirts made with the slogan. It's not some hackneyed catchphrase, it is a way of life. It is a movement disorder, so get moving. (See 'Exercise' below.)

Former baseball player Kirk Gibson was asked during an interview how he was dealing with PD. He said that once you understand it's a different lifestyle, and accept it, the new lifestyle can become rewarding. The most proffered piece of advice to the newly diagnosed is along the lines of, "Exercise is the key to everything."

RESOURCES

Exercise — There's something for everyone to tease the brain and resist the physical decline. It's all about knowing where to look. There are dance classes. Alan Alda dances to marching bands in his basement. Ballroom dancing is a popular therapy. Bicycling has been shown to slow the progression of Parkinson disease (PD).

Rock Steady Boxing (RSB) is a 501(c)(3) nonprofit organization, which gives people with PD hope by improving their quality of life through a noncontact boxing-based fitness curriculum. RSB was my particular life-changing institution; there are many more.

The definition doesn't do it justice. It is so much more. Most "fighters" consider it a way of life. Every exercise is aimed at a Parkinson symptom. Fast hand and arm movements fight the heavy arms. Jumping rope and quick foot movements improve balance. There are brain teasers and memory games. But more than that, it is a support group of people who understand the struggle.

RSB makes fighters feel younger, and not so alone. I joined and couldn't get enough. Twice a week turned into four times a week when I found a second gym in another community. I suddenly had dozens of fellow fighters to communicate with, all of us sharing experiences and methods of dealing with PD.

Services — The community of PD services is vast. I was connected to a local university where speech therapists are finishing their degrees. The school was looking for patients with whom graduate school students could practice voice therapy. We had no shortage of volunteers to accept this free training. Everybody wins.

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