Hard Times

The sun lights the waiting room but the fluorescents are on overhead anyway. The woman next to me eats Pringles from a long red can as the young couple across the aisle fill in sheets of paperwork on a clipboard. I try not to look at his face; the right side is significantly swollen with a line of black stitches running the length of his nose. He wears his black sweatshirt hood over his head, not wanting to be noticed. A girl with pigtails and shiny black boots ambles around the thighs of an man at the check-in desk. He signs to her, looking down, his lips move in words, repeating the sign again. His hair is grey. He is unshaven, wearing beige linen. As they pass me I notice his daughter's hearing aid is bright green behind her left ear.

The patient appears in the waiting room with his son. His steps tentative, he walks with both arms bent, shuffling and trailing behind his son. The son cuts his mother off, encouraging his father to speak at the beginning of the visit. The father describes a fall in the shower, where he split the head of his humerus. His voice is light, feathery. His face reveals no emotion. The wife takes up the thread as the patient stalls. She is freckled with dark red hair. She speaks adjusting her gaze to the people in the room, describing her husband's last day at work, when he said he couldn't do it anymore. He gave up practicing medicine afraid he'd make a mistake, and a patient would suffer.

They have no health insurance. The spouse is hoping to get a full time position with health benefits in the company where she works, leaving the husband alone at home. With no patients to occupy his mind, a painful arm and limited contact with others, his depression has darkened. The physician behind the desk talks about decompensation; how a urinary tract infection, cold, flu or broken arm will intensify the Parkinson's disease. Pain amplifies the symptoms of PD, making sleep elusive and scarce. Without sleep patients are prone to hallucinate. As he goes through the physical exam, the clinician emphasizes he believes in providing pain medications to patients in pain, it's what the prescription is for. Later, the ailing doctor can wean himself. The right hand of the broken arm is swollen from disuse. The other doctor encourages the patient to use his hand; squeeze a ball, move individual fingers.

He would like to order physical therapy, but he knows the patient has no insurance and no Medicare. He encourages the patient to exercise, perhaps with a stationary bike, citing a recent study where the benefits of exercise on the brain were sizable. The wife gathers the prescriptions to leave, rising from her chair. Her coloring and substantial body mass contrasts sharply with the angular knees that poke from beneath the taupe trousers of her husband. Indeed, he has lost twelve pounds in the two weeks since the last appointment. What will he weigh when he returns?

Searching

The patient brought his wife, copies of MRIs, a DVD of the brain, and multiple copies of his medical records. The doctor of the day took the page listing all his symptoms. He admitted he'd been to several neurologists, Shands Hospital and the Mayo Clinic before arriving in the new examination rooms with the movement disorder specialist, one second year medical student, one undergraduate psychology student and a writer.

The list of symptoms was long. For some reason the first complaints he reported were not typical of PD; a feeling he was ill, that something was wrong. His mind felt clouded. He gave up exercising, believing he shouldn't do the things he used to do. No more rollerblading or riding the bike. He felt his ability to walk was different, compromised. The wife thinks his face has become unexpressive and blank. Maybe the largest problem is the high blood pressure- he takes four medications, and still the nursing staff recorded a diastolic pressure close to 180.

The wife is a nurse and agreed to monitor the blood pressure for a week and report on her findings. The doctor felt reluctant to prescribe medications until he was knowledgeable about the blood pressure and his heart, requesting an MIGB study.

Upon examination, he had no visible resting tremor, though his wife reported his left hand did tremble. With two arms outstretched, a fine shake quivered in the fingers of the left hand. Distracted by trying to pat and turn, pat and turn the right hand, the doctor felt some cogwheel rigidity at the muscles near the joint of the left elbow when moving the arm from flexion into extension.

As completely as possible the patient documented all the symptoms he experienced- from a strange feeling in the skin of his face, to nausea, to the certain feeling he had that there was something wrong with him. He even suggested that perhaps some symptoms were all in his head, because he'd lost the ability to distinguish the important symptoms from the ones that simply indicated he was sixty- five- like the crick in his neck he occasionally felt.

What could this doctor give him that other one's failed to do? The specialist in movement disorders told him he probably had a parkinsonian syndrome, which one was still unclear though he favored Shy- Drager, because it explained the blood pressure involvement. The physician gave him an hour. He sat with him and listened to him and his wife speak about the changes he's experienced. He ordered a heart test and requested monitoring of his blood pressure. Would this be enough?

Viartis

http://www.viartis.net/parkinsons.disease/news.LR.htm
14th January 2009 - News release
michael j.fox foundation funds six new approaches

The Michael J. Fox Foundation is funding six new approaches for Parkinson's disease. Two of the projects are assessing the effects of drugs normally used for other medical disorders. One team will investigate the potential of Simvastatin (a drug currently used to treat high cholesterol) to reduce dyskinesia in Parkinson's disease. Another team will assess the effect of Isradipine (a drug for high blood pressure) in its ability to relieve dopamine producing neurons from degeneration that occurs in Parkinson’s disease. The biochemistry of these two drugs is completely unrelated to Parkinson's disease. The Foundation does admit that these approaches seem irrelevant to Parkinson's disease, but claim preclinical studies suggest they might be beneficial.

The Foundation is funding four other projects, including three new types of drugs. One of them aims to show "cerebrospinal fluid based biomarkers measuring microtubule-mediated transport of cargo molecules in neurons are altered in people with Parkinson’s disease." This study is very remote from the known biochemistry of Parkinson's disease, and so does not have the potential to result in anything of practical significance. Funding is also being provided for three new types of drugs: ER-beta selective agonists, type 7 phosphodiesterase (PDE7) inhibitors, and Multiphosphatase Inhibitors. The primary fault in Parkinson's disease is insufficient dopamine formation. Yet none of these three drugs, even in theory, has the potential to increase dopamine formation.

The front page of the Michael J. Fox Foundation web site claims, "We don't just fund research. We fund results." However, despite their good intentions, none of their numerous projects has ever resulted in anyone ever being rid of Parkinson's disease. This is largely because of the faulty scientific basis on which their projects have been based.

Irritated by the negative tone, I emailed the site stating I think one need limit one's negative feedback until a qualified individual could respond to the criticism. I could care less what his opinion is. Unless he can tell me he has an educational background suitable to comment on the funding decisions of the Michael J. Fox Foundation, he needs to keep his mouth shut. I sent the email and began to explore who and what Viartis is.

It seems the site provides information about recent news on Parkinson's disease; information one could acquire through the internet. Though one might assume it is there solely to enlighten, it may have other intentions. Wikipedia, the encyclopedia free and open to input by most people, has banned the individual they claim is Keith Bridgeman, and the person behind Viartis. They claim he has edited the work of other professionals, sending users of written content to Viartis sites. Banned from Wikipedia since June 22, 2006 editors suspect he has infiltrated the on-line encyclopedia and posted information under other aliases- over 400 of them. They call such entities the 'sockpuppets' of General Trojo.

Others suggest the person is a science teacher. Actual students of the teacher think there must be a mistake in identity. According to some, this person is also involved in sailing lessons. Times in which Keith Bridgeman altered information on the Wikipedia, Parkinson site seem to correspond to hours in which pupils would be engaged in test taking or free on break from regular classes.

Whether a mistaken identity, or truly a teacher with a calling to Parkinson's disease, the site would take a lot of time to construct and maintain. News of PD accrues daily. My father, an English teacher in the public schools of Chicago, Illinois never had the time to devote to anything more than grading papers and perhaps watching the evening news, when I was a child.

The nerve the negativity hit was research. In our times, all efforts to clarify issues of PD are worthwhile. All sources of funding provide hope. The Foundation of Michael J. Fox is not without brains, experience and intelligence. They will fund only the best chances- the sea of proposals is deep and money is tight.