Name: Judith Pernice
Judith Pernice and Parkinsonís support group
I had the opportunity to meet with a Parkinsonís support group led by psychologist Judith Pernice. Over the course of several weeks I was able to establish relationships with many Argentines who are currently suffering from Parkinsonís disease. These people allowed me to have a glimpse inside their lives and their experiences with Parkinsonís Disease.
It was interesting to hear the experiences of those who were there at the bi-weekly meetings. At first I was worried about stepping into their lives, but everyone was very hospitable, and they were more than willing to answer my questions and share their experiences. They all seem to have a profound respect and understanding for one another within the common ground that is Parkinsonís Disease.
Talking about the physical effects of Parkinsonís is one thing, but through personal stories, I have learned that the disease is much larger than that. At the first meeting, I talked to a woman, Elizabeth, whose husband had been diagnosed with Parkinsonís disease seven years ago, when he was 54. At first the symptoms were not so apparent, and he was able to cope, but as the tremors became worse, he retreated back to his motherís house and has since refused to leave. That was more than two years ago. His wife says he feels ashamed of the effects of the disease. She attends these meetings seeking understanding of his condition and continual wonders how she can help him.
I asked about how their lives had changed as a result of the onset of Parkinsonís disease. It was interesting watching people as answers to my questions began filling the room. ďI only sleep 4-5 hours a night,Ē one said, as a general nod of agreement passed throughout the room. Everyone agreed overwhelmingly that everything seemed to slow down. No one was able to operate at the same pace they had in the past. The muscle rigidity and reduced coordination affected their ability to button buttons, put on watches, tie shoes, and slip on a pair of pants.
In addition to the many physical problems is the debilitating effects of depression, which, more often than not, accompanies Parkinsonís Disease. Fighting a slowly debilitating disease is extremely difficult. They all agreed that accepting the fact that they had Parkinsonís Disease was one of the most difficult things they had to do in their lives. One woman went to 10 different doctors before she accepted the diagnosis (In some cases, this is not so out of the ordinary, because misdiagnosis is not uncommon).
ďOnce the patient accepts the fact that they have Parkinsonís Disease, the next step is to live for todayĒ says psychologist and Parkinsonís victim Judith Pernice.
Many people get caught up in the fact that they will probably not get any better. One man worries about the possibility of dementia that affects a percentage of patients. Many worry about the impact that their disease will have upon themselves and their family and friends. Through this group, I found out it is not uncommon for many Parkinsonís patients to slip away from family and friends as they dip into depression. They donít want to be a burden, they donít want people to stare, and they donít want to face their future, so they slowly slip away from those they care about.
In most countries, the general public does not know much about Parkinsonís disease. Many Parkinsonís patients have erratic movements, and are not able to negotiate turns as they once did. Sometimes these problems cause the police to think they are drunk or on drugs. The physical effects of Parkinsonís disease are often very embarrassing for the victim. People shy away, as they donít know how to react to these ďdifferent peopleĒ, and onlookers are sometimes concerned that these affects could be contagious. People most often fear what they donít understand. The people in this support group encourage the general public to learn something about the disease.
It was great to see the group interacting with each other. There was another fellow, Jose, who was struggling with the loss of his job. He was a baggage loader at the airport, but as the affects of Parkinsonís set in, he no longer had the strength needed to perform his job. He was struggling with feeling helpless, unable to provide for his family, and being unable to contribute. The whole group talked about different possibilities for him and provided him with a sense of hope and support. He went away with the idea of starting a small plant nursery.
It was interesting as I watched him through the course of the almost two-hour meeting. He came into the meeting as calm as could be, but gradually his medication wore off. He soon began tremoring, and he removed himself from the group, pacing outside the circle with erratic movements. Less than a Ĺ hour after he took his medicine, his body returned back to a normal state, and he even showed me that he could touch his toes without a problem. He was required to take medication three times a day at 7:00 a.m., 1:00 p.m., and finally at 7:00 p.m.
At another meeting, a woman came in recounting the story of her disease. She was a very proud woman and was struggling with her diagnosis. Finally, in tears, she admitted that she was completely ashamed of her condition. The group offered support, and, more importantly, understood what she was feeling. Finally, a sense of calm came over the womanís face as she realized she was not alone in this fight.
These meetings were a tremendous experience for me. They helped me gain a greater understanding of the disease and enabled me to become more comfortable with it. My own struggle is accepting my fatherís condition. As a son, my father is one of the most important people in my life, a symbol of strength upon which I can always depend. As long as he is strong, I can always be the little boy that was led around by his every move. Now, as I see Parkinsonís chipping away at his physical health and agility, I see a part of me struggling with its consequences. I find a part of me screaming at him as he slows down or shakes as he is struggling to tighten a tiny screw, I am screaming, ďDonít let this happen to you dad!Ē This just canít happen the man who can fix anything. I take the affects of his Parkinsonís personally, as something that is being taken away from me!
These meetings helped me tremendously to understand what might be going on in his head, the changes that he is going through, and the daily battle he must be fighting. While I will continually struggle with his disease, I believe, as a result of these meetings, that I can more effectively fight with him. I need to learn to take it one day at a time and not look at the future as something destructive. He is the same powerful person I have always known. Despite his diagnosis with Parkinsonís, he will continue to shape and share my life as he has since the day I was born.
This realization came full circle on my last session with my new friends as a new fellow came into the group. His father had been just been diagnosed with Parkinsonís, and he was looking for guidance as to how to deal with the disease. The group sat him down and explained a few facets of the disease. He was just beginning his journey with Parkinsonís, a disease that affects millions.