Sharing our Experience of Illness

In the last couple of month I've developed a problem involving circulation to my toes and foot. The formal name is "acrocyanosis." Colloquially it's called "blue [or purple] toe syndrome." Though the medical literature describes it as painless, what I have hurts. It's commonest in younger people and uncommon in someone my age.

I'm a strong believer in the potential value in learning from others who have a similar condition, but Google didn't produce much, and the diagnosis was not listed on the excellent Patients like Me website. I respect the physicians I've been dealing with, but I was hoping for practical tips about coping from people who have experienced the condition themselves.

While I was musing about the topic of peer networks, my friend and former colleague Al Martin published a post exemplifying what I had in mind in his always engaging Age with Spirit blog. I don't have the condition Al is writing about (Parkinson's Disease), but if I did his post would be a treasure.

Years ago a patient of mine who was about the age I am now developed post herpetic neuralgia, a painful condition that can follow shingles. The pain added to the depression I was treating her for. Like Al, she was an activist, and she wrote about her experience on the web. A young woman from the UK contacted her. My patient, a wise and generous person, "coached" the younger woman on coping with chronic pain. I assume the coaching was helpful to the woman in the UK, but I know it was helpful to my patient.

The famous "twelfth step" in AA is perhaps the best known expression of the idea of peer support: "Having had a spiritual awakening as a result of these steps, we tried to carry this message to alcoholics..." Here's what AA says about the twelfth step:

Here we turn outward to our fellow alcoholics who are still in distress. Here we experience the kind of giving that asks no rewards. ..When the twelfth step is seen in its full implication, it is really talking about the kind of love that has no price tag on it.

My patient with post herpetic neuralgia felt a kind of love for the young person in the UK. If I had Parkinson's Disease, I would feel a spirit of solidarity and love coming to me through Al Martin's post:

This posting is a personal look at my experiences with a chronic brain disease -- Parkinson’s Disease (PD) -- in contrast to the way that the experience looks to others. We view problems that affect the brain with particular dread, because we see the brain as the determinative of who we are as people. Diseases may seem fearful or tragic to those who don’t have them, but the experience may be quite different for the person with the problem. Friends often aren’t comfortable asking about the details, and the person with the problem may not feel comfortable volunteering them spontaneously. As a result, an important part of someone’s interactions can be governed by assumptions. In the following paragraphs are some of my experiences with PD. This posting is a personal look at my experiences with a chronic brain disease - Parkinson’s Disease (PD) -- in contrast to the way that the experience looks to others. We view problems that affect the brain with particular dread, because we see the brain as the determinative of who we are as people. Diseases may seem fearful or tragic to those who don’t have them, but the experience may be quite different for the person with the problem. Friends often aren’t comfortable asking about the details, and the person with the problem may not feel comfortable volunteering them spontaneously. As a result, an important part of someone’s interactions can be governed by assumptions. In the following paragraphs are some of my experiences with PD.My story begins in 2008-09.

For some time, I had noticed a deterioration of my handwriting, which I attributed to the kind of tremor and unsteadiness that lots of older people get when they try to do fine work   I also noticed trouble buttoning my buttons. In fact, I asked a friend of mine, a neurosurgeon, if he noticed any similar difficulty with aging. He laughed that his terrible handwriting had gotten worse, and passed it off as normal aging. In the latter part of 2008, I began to notice chronic fatigue and over the next few months, the fatigue worsened, and I began to lose weight. My immediate concern was some hidden form of cancer, and in early 2009, I saw my internist, who, although he didn’t say it, had the same concern. He began ordering tests, at first a panel of blood tests and a chest x-ray, and eventually a CT scan of the abdomen. All of them were normal, and we were stumped.

On a chance, I mentioned the trouble that I had over two years, deteriorating handwriting and poorer coordination of my right hand.   He referred me to a neurologist, who within 10 minutes told me that I had PD. Among other things, he could see the stiffness in my movements and noticed that I didn’t swing my arms when I walked. He referred me to a Parkinson’s specialist, who confirmed the diagnosis and started me on one of the milder drugs for the disease.   It helped. My symptoms were very mild at the time. No one else noticed them. I could do virtually everything that I used to do, and my fatigue lessened. I was surprisingly incurious about the disease. I had, of course, learned a little about PD in medical school, the rhythmic tremor (which I didn’t have), the stiffness, rigidity, lack of facial expression, and the tiny shuffling steps. I didn’t want to know any more. As long as I was functioning well, I wasn’t interested in knowing more details about where this train was going.

Although tremor is the best-known symptom of PD, its hallmark is what is called bradykinesia, a slowing of movement and stiffness of muscles that eventually can result in immobility. PD is due to death of nerve cells that produce the neurotransmitter Dopamine, particularly in a midbrain collection of deeply pigmented neurons called the Substantia Nigra (black substance). This lack of Dopamine results in the typical symptoms of PD, tremor, bradykinesia, rigidity and difficulty with balance. As PD has become better understood, it is clear that the disease causes much broader symptoms including difficulty with speech, voice, swallowing, constipation, weakness, double vision and in some dementia. It is a disease that is readily treated with medication early on, but which progresses despite treatment with medication eventually becoming less effective.

My reaction to being told I have PD was very consistent with the well-known process of grieving any loss. The first stage for me was denial. I was told that I had PD. I knew what it was supposed to do, but I felt almost no emotion. The long-term consequences were abstract to me. My symptoms were mild; I could do almost anything that I used to do, and it wasn’t visible to others. I didn’t speak about it to friends. The few times that I did, the friend would look like I just said I had untreatable cancer and say something like, “Oh my god; I’m so sorry,” which I wasn’t ready for at that point. At times, I questioned whether I needed the Dopamine medication or even whether the diagnosis was correct. Maybe I would be the one where it didn’t progress or would spontaneously go away. When I saw someone with severe PD, I might be briefly shaken, but then put it out of my mind.

After 3-4 years, it became evident that the disease was slowly progressing, and the diagnosis was undeniable. I threw myself into an exercise program in the hope that through muscle strength, it could be overcome. I read that exercise, particularly that which involves movement, like biking, swimming, walking or tai chi, is important because it does help loosen the muscles, but I couldn’t exercise my way out of the disease. What started as a little stiffness, at times has become the sensation that my muscles are in glue and that any sustained physical effort is very hard. My voice has become soft; I tend to walk with a stoop and my face transmits less expression unless I pay attention to it. When I get up from a chair, I have to take several shuffling steps to get my balance and my legs moving. With PD, one’s muscles don’t automatically cooperate as they used to. It is said that you are damned to a conscious life, because you need to concentrate on everything you are doing and how to do it.

I am aware of what advanced PD looks like to others. Moving slowly with stuttering steps, a trembling hand and a blank stare showing no emotion makes it appear that the person is not really there. I am not at that point, but if I live long enough I probably will be. Similar to someone who has had a severe stroke, outside impressions may be worse than the reality. The disability is real, but most PD patients are mentally intact despite responding more slowly. Most PD patients are quite ‘with it’ and anxious to be engaged socially.

PD seems to hold a particular place in people’s minds as a terrible progressive disease from which there is no recovery. True as that is, most people with Parkinson’s live long and productive lives, albeit with handicaps that must be addressed. But as with any chronic disease, one manages the best one can and usually remains the same person inside of all of the daunting, outward physical signs. It is important to patients like me that people around us realize that, or one can become socially isolated.

Eventually, as with any chronic disease, I have to plan for the future. Planning for later is of course wise, but it confronts me with a reality that I would just as soon forget. As the complications worsen, I have to deal with more limitations. As much as the limitations may look terrible to someone on the outside, one learns to live within them and find new sources of satisfaction. It may sound Pollyannaish, but in some ways, it is a good time to grow internally, a time to appreciate life in a deeper way, to take one day at a time and to appreciate the companionship of people I care about. We don’t get to choose our diseases, and the worst curse is to withdraw and become isolated because your illness makes people anxious.