Parkinson's Never Sleeps

Parkinson’s is like rust, it never sleeps. Slowly and inexorably progressing in all its ways, Eroding my health and affecting the quality of my life more and more every day. Progressive, degenerative, incurable, neurological brain disorder. Moments of feeling okay interspersed with varying degrees of discomfort while getting a little worse each day.

At first it wasn’t too bad. I thought I could handle it. My right hand shook a little but I didn’t mind. It took Restless Leg Syndrome to get me to the doctor. I couldn’t lie in bed at night. My legs were jumping up trying to run around the room with me chasing after them and escorting them back to bed only to immediately bounce back up again. What is going on here, what’s happening to me? The doctor told me I had PD, prescribed some meds, and said come and see me if it gets worse. Of course it got worse, not too bad at first, but slowly and progressively developing until it completely changed my life.

One year later I thought this isn’t too bad. I can handle this if it stays this way. RLS under control with meds, right hand shakes a little more, meds make my head feel a little funny, but my movement and balance are good and I can take care of myself. It stayed that way for two years and then:

Three years later I became James Bond’s favorite bartender. All my drinks were shaken not stirred. Tremors in both hands and sometimes my legs and body as well. My body ached and had painful leg cramps many mornings. I began to have trouble with balance and stability and moved in one of three modes: normal movement most of the time, the PD shuffle when tired, and sometimes late at night and especially when dark I careened around the room like a pinball. Little old ladies wanted to help me while shopping. Kind people offered me their seat on the bus and I was not embarrassed to take it. The effort to accomplish the every day and necessary - shaving, bathing, eating, brushing my teeth, putting my shoes on - became more difficult. PD is a physical disease that takes an emotional toll. The effort involved to do daily tasks slowly wears you down over time. It’s a double whammy. PD affects the bodies ability to function and also robs you of the energy necessary to perform tasks. Do the dishes - are you kidding , I’m just happy I had the energy to make dinner. But as my body shrinks in on itself and my abilities diminish my spirit grows stronger. Sense of humor intact.

Seven years after diagnosis with PD and I now use a walker when going outside and sometimes late at night to get around the house. It is not absolutely necessary but it makes it easier especially now that my balance is not as good and my right leg freezes so I can’t move it. Sleepless nights make for fatigued days. It takes two or three times longer and increased concentration to accomplish simple tasks that I once did without thinking. I am concerned about the possible future side effects of the meds as I take more to combat more frequent and powerful off periods. My mind is still good but I worry about how much longer I can perform the necessary activities of daily living without requiring help. Growing old is part of life and we all suffer the slings and arrows of aging but I miss who I was and am saddened by what I am becoming.

What will the future bring? I don’t know. I accept that PD is progressive and will get worse but believe I have some influence in determining the progression of the disease. What am I doing to deal with it? I learn all I can about PD so I can make intelligent decisions to best deal with it. Partner with my doctor to make the best comprehensive medical plan for my unique symptoms. Take my meds as prescribed and let my doctor know how they are working. Exercise, exercise, exercise as much as possible as it is the only thing we know of that can slow the progression of the disease. The more I exercise the better I feel. Be socially involved and engaged with life and the PD community. Appreciate as much as possible the good things I have. A healthy mind and positive attitude is the greatest asset in fighting the disease.

Parkinson's Myths And Facts

What a long strange trip Parkinson’s has been. Made stranger by far due to how little I knew about it and the misconceptions I had before I was diagnosed. Parkinson’s is great teacher. I learn new things every day. Seven years into it and I am still learning how to best take my meds correctly. Many of the biggest misconceptions about PD revolve around Levodopa (Sinemet in the US and Madopar in the EU) and other PD meds.

LEVODOPA AND PD MEDS: Levodopa is the most effective drug for treating PD physical motor symptoms. It does not stop working after a number of years. Levodopa does not become less effective with long term use. You need to take more because the symptoms progress and the disease gets worse. A friend with PD has been using Levodopa for 16 years.

Levodopa does not cause or increase PD symptoms or make them worse with long term use. Clinical trials have proven that PWP administered Levodopa were better off than those given a placebo. Results of conclusive studies can be found on the web.

Some people believe they should wait as long as possible between doses. Levodopa is most effective when taken before the previous dose wears off. If you wait too long the new dose may not kick in at all.

FACT: Levodopa competes with protein for absorption and so should be taken an hour and a half to two hours after eating and a half hour to an hour before eating. Levodopa does not treat all PD symptoms but it helps make many motor symptoms more livable.

TREMORS: Tremor is the most noticeable and best known symptom of Parkinson’s but it is a major misconception that everyone with PD has tremors. Only about 70% of PWP have tremors during the course of the disease. Be thankful if you are in the 30% who don’t. The reverse is also not true. Not all people with tremors have PD. There are many different kinds of tremors. Ten million people in the United States, for example, have essential tremors and one out of five people over the age of 65 shakes but doesn’t have PD.

FACT: 7 to 10 million people worldwide have PD. There are about 60,000 newly diagnosed cases each year in the US and about 18,000 in the UK.

SYMPTOMS: All PWP know that PD is not only a physical motor symptom disease. Many feel that the non motor symptoms are worse: depression, anxiety, apathy, sleep disorders, cognitive symptoms, constipation, bladder problems, sweating, sexual dysfunction, fatigue, pain, cramps, tingling, and lightheadedness.

FACT: No two PWP have the same exact symptoms that progress in the same way.

CAUSE: It is not true that genetics is the main cause of PD. Researchers estimate that less than 10% of cases are genetic. The cause is not fully known but environmental factors and a persons lifestyle are also important. Most researchers believe it is an interaction between genetic and environmental factors. That is, a person’s genetic makeup will determine the effect of an environmental exposure. Genetics make you a candidate for PD and environmental exposure triggers it.

PD PROGRESSION: Many people, when first diagnosed, believe the disease will stay the way it is and not get worse. PD always progresses and in time may become mentally and emotionally exhausting and physically debilitating. It seems to have a mind of it’s own and symptoms and intensity will vary from person to person and  day to day. Some days better and some worse.

WHAT YOU CAN DO: Some people think their life is over when diagnosed with PD. So much of how you fair with the disease is up to you. Fight back. Be an active participant with your doctor to get the best comprehensive treatment plan to improve your quality of life and suffer as little as possible. Learn all you can about the disease so you can make intelligent decisions. Exercise as much as possible. Exercise is believed to slow the progression of the disease and also helps you feel better. Be active and engaged with life. Get involved with the PD community. Your local PD community is a wealth of information and support. Be good to yourself.

Final fact: Were you diagnosed with Parkinson’s? You may not have it. Estimates of PD being misdiagnosed, especially in its early stages, range from 30% - 50% of the time. It goes both ways. Doctors may tell you that you have PD when you don’t or that you don’t have it when you do.