In 2005, shortly after I was diagnosed with Parkinson’s disease, I began a marathon reading campaign to learn everything I could about the disease and what I was facing for the rest of my life. As a result, I concluded I must focus on four things: walking, talking, eating and sleeping. While other important issues merit consideration, these four demanded immediate attention.
Walking, or rather difficulty walking, is an early sign of Parkinson’s disease. As the disease progresses, postural instability increases the risk of falling while walking. Falling and breaking a hip or arm or cracking your head are real dangers. Although I move with great care, I have fallen many times, in building lobbies or on the streets of New York City, San Francisco, Paris, Rome, and Buenos Aires. I was usually with friends, but sometimes I was alone. Accidental pushes or bumps by hurried pedestrians caused most of my falls, so crowded streets are dangerous. In the last two years, occasionally I have experienced a steep drop in blood pressure, then a brief dizzy spell, and finally a fall. To date, my tumbles have caused only minor head injuries and one severe arm injury. Walking is one of the best forms of exercise and exercise is proven to lift the spirits, strengthen the muscles and possibly improve mental function. Next week I will post my piece on walking, Stumble, Tumble, Trip and Fall.
Talking, second on my list, is also vital. Early in the steady downhill progression of PD, the voice begins to change. Different people suffer this change at different times. In my case, a few years before my diagnosis I was told by several people that my voice sounded “gravelly.” In the years following my diagnosis, people increasingly requested that I “speak up.” As my voice grew soft and I started to mumble, my family and friends began to complain. Finally, around 2009, one of my PD doctors said he was getting hard of hearing and requested I speak louder. We both laughed when I said, “So, I can’t speak and you can’t hear.” That was when he suggested a solution to my speech problem. It saved my life because it allowed me to re-engage with family, friends and my business. I fear I would have crawled into a hole, curled up, and died without his solution. I will tell you all about my talking problems and solutions in a future blog.
We all know that eating is necessary for life. For many PD patients, food is boring because they have lost part or all of their sense of smell and sometimes their sense of taste. I, for example, lost my sense of smell a couple of years before my diagnosis in 2005. I have had two “smell tests” since then and failed both, confirming that I have no sense of smell. I still have some sense of taste, especially spicy food, but not much. To the extent that meals are social occasions with friends I enjoy them, but the food itself is uninteresting. PD patients often lose weight as meals lose their appeal.
In addition to losing its allure, eating is, for PD patients, potentially dangerous in at least two ways. The first danger is the risk of choking. PD patients must cut food into small bites, chew well, and swallow carefully. Most critical is to not talk with food in your mouth. Choking while eating and talking is a real risk and choking to death is a danger. Just like it is difficult to walk and talk, it is difficult to eat and talk. Soft foods like pasta are better than steak. As strange as it may seem, PD patients can choke on their saliva and seem to bystanders that they are choking to death as they cough and cough and cough. The second risk is that you may inhale, or aspirate, some food or liquid. Upon occasion, I have suffered from acid reflux in the middle of the night and then inhaled it. I feel like I cannot breathe, the acid burns, and I panic every time. Aspiration can cause pneumonia, so if you suffer from this, you should ask your doctor to order a swallowing test. I had one done and it gave me great peace of mind to realize that I was not going to choke to death on saliva. Also, swallowing experts will teach you how to swallow. In a forthcoming post, I will share my solutions to this very real and frightening problem.
My fourth linchpin is sleeping. In addition to the sleeping problems that plague the general population, PD patients frequently suffer in other ways that make a restful night’s sleep a rare and difficult thing to achieve. Some of these PD problems are severe muscle cramps, especially in the legs or feet, restless legs, uncontrolled jerking, difficulty moving or turning over in bed, wild and vivid dreams and nightmares, and a frequent need for urination. Inability to get a good night’s sleep leads to daytime sleepiness, which may cause mood changes and depression. Depression may lead to difficulty sleeping and the whole process feeds on itself. In a future blog, I will discuss my solutions for sleep, such as they are. I will also in a separate blog discuss my thoughts on depression and the difficulties is poses for PD patients.
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