What I’ve Found About This Disease
I start this section on PD with summary and conclusion. A wade through details follows, only for detail waders.
PD is not a new disease; references date back 3,000 years. Even fact that PD is brought on by dopamine depletion in brain was recognized in 17th century. Why then is the PD field still dealing with symptoms and control, and not diagnosis and cure? Is it because PD is an aging disease?
Reminds me how medical field has dealt with CLL. As luck would have it, JV and I contracted progressive diseases that are branded “aging diseases.” Are we supposed to apologize for being old? “Listen medical researchers don’t spend too much time on our maladies, we’ll be dead in no time anyway.”
Would evolution of PD diagnosis and treatment be different if children got PD? Odd thing to say or wish for but question is pertinent. For example, children rarely get CLL, for younger set it is lymphoblastic leukemia, and a cure for this type of leukemia was found several years ago. Tragic thoughts of children dying from leukemia, helped drive media, research dollars, and cleared political obstacles. No such luck for PD and CLL diagnosis and treatment.
As for possible cause in JV’s case, a link between PD and pesticides has been established. JV was raised on a farm on Chicken Run Road in Southern Indiana. Her father died from cirrhosis of liver, probably from exposure to pesticides used in farming. He was a teetotaller, ruling out alcohol as cirrhosis cause.
JV’s (2013) late development of PD could be caused by same pesticides that killed her father. JV remembers noticing “shakes” among many farming relatives living in same region.
“The risk of Parkinson’s disease clearly increases with exposure to certain environmental toxins, such as pesticides. Pesticides, herbicides, and fungicides are potent toxicants that may cause disruptions or damage to the neurological system, including your brain.
What is perhaps most concerning is that even ambient exposure to pesticides has been found to increase the risk of Parkinson’s disease considerably, and this was further confirmed by new research linking the disease to extremely low-level pesticide exposure.”
Does it help to know JV’s PD could have been caused by exposure to pesticides as a child growing up on a farm? Given state of art of PD detection and treatment…No.
Would it have helped to know JV was at risk of PD so steps could be taken to prevent PD onset? No, again.
Such preventive steps are unknown at this time. We may be getting better at detecting brain signs of PD, but what should be done about them is unknown.
In a sense JV was in a “watch and wait” program without scientific basis. I (with CLL) was in a “watch and wait” program but clinical trials justified treatment delays.
In JV’s case she “waited” until hand tremors and foot dragging led to her eventual PD diagnosis. By then nerve damage causing low dopamine levels had already occurred.
Given the undeveloped medical response to PD, JV had no choice but to “wait.”
In this day and age, can you imagine someone saying it’s better to catch cancer late? An oncologist who practices this way would soon lose his/her license. A neurologist is under no such constraint.
How to prevent PD, how to detect it before outward signs, how to “cure” PD? These medical milestones are out there in future, perhaps far out in future. 1 million PDers, including JV, in US are waiting for these answers.
Details on Parkinson’s
Wikipedia sums the history of Parkinson’s pretty well.
Human stem cell research may offer new treatments for hundreds of diseases, but opponents of this research argue that such therapy comes attached to a Faustian bargain: cures at the cost of the destruction of many frozen embryos. The National Bioethics Advisory Commission (NBAC), government officials, and many scholars of bioethics, including, in these pages, John Robertson, have not offered an adequate response to ethical objections to stem cell research. Instead of examining the ethical issues involved in sacrificing human embryos for the goal of curing fatal and disabling diseases, they seek to either dismiss the moral concerns of those with objections or to find an “accommodation” with those opposed to stem cell research.
An ethical argument can be made that it is justifiable to modify or destroy certain human embryos in the pursuit of cures for dread and lethal diseases. Until this argument is made, the case for stem cell research will rest on political foundations rather than on the ethical foundations that the funding of stem cell research
Michael J. Fox
Possibly worse than making fun of someone’s disability is saying that it’s imaginary. That is not to mock someone’s body, but to challenge a person’s guts, integrity, sanity.
To Rush Limbaugh Michael J. Fox looked like a faker. The actor, who suffers from Parkinson’s disease, has done a series of political ads supporting candidates who favor stem cell research, including Maryland Democrat Ben Cardin, who is running against Republican Michael Steele for the Senate seat being vacated by Paul Sarbanes.
“He is exaggerating the effects of the disease,” Limbaugh told listeners. “He’s moving all around and shaking and it’s purely an act. . . . This is really shameless of Michael J. Fox. Either he didn’t take his medication or he’s acting.”
Limbaugh, whose syndicated radio program has a weekly audience of about 10 million, was reacting to Fox’s appearance in another one of the spots, for Missouri Democrat Claire McCaskill, running against Republican Sen. James M. Talent.
But the Cardin ad is similar. It is hard to watch, unless, for some reason, you don’t believe it. As he speaks, Fox’s restless torso weaves and writhes in a private dance. His head bobs from side to side, almost leaving the video frame.
“This is the only time I’ve ever seen Michael J. Fox portray any of the symptoms of the disease he has,” Limbaugh said. “He can barely control himself.”
Later Monday, still on the air, Limbaugh would apologize, but reaction to his statements from Parkinson’s experts and Fox’s supporters was swift and angry.
“It’s a shameless statement,” John Rogers said yesterday. Rogers, Fox’s political adviser, who also serves on the board of the Parkinson’s Action Network, added: “It’s insulting. It’s appallingly sad, at best.”
“Anyone who knows the disease well would regard his movement as classic severe Parkinson’s disease,” said Elaine Richman, a neuroscientist in Baltimore who co-wrote “Parkinson’s Disease and the Family.” “Any other interpretation is misinformed.”
Fox was campaigning yesterday for Tammy Duckworth, a congressional candidate, outside Chicago, when he alluded to Limbaugh’s remarks. “It’s ironic, given some of the things that have been said in the last couple of days, that my pills are working really well right now,” he said, according to a report on the CBS2 Web site.
After his apology, Limbaugh shifted his ground and renewed his attack on Fox.
“Now people are telling me they have seen Michael J. Fox in interviews and he does appear the same way in the interviews as he does in this commercial,” Limbaugh said, according to a transcript on his Web site. “All right then, I stand corrected. . . . So I will bigly, hugely admit that I was wrong, and I will apologize to Michael J. Fox, if I am wrong in characterizing his behavior on this commercial as an act.”
Then Limbaugh pivoted to a different critique: “Michael J. Fox is allowing his illness to be exploited and in the process is shilling for a Democratic politician.”
Limbaugh’s shock at Fox’s appearance is a measure of the disease’s devastation, advocates say. Contrary to the charge that Fox might not take his medicine to enhance his symptoms, the medicine produces some of the uncontrolled body movements.
“Stem cell research offers hope to millions of Americans with diseases like diabetes, Alzheimer’s and Parkinson’s,” Fox says in the Cardin ad. “But George Bush and Michael Steele would put limits on the most promising stem cell research.”
Fox has appeared in ABC’s “Boston Legal” this season. In his scenes, taped over the summer, Fox does not shake or loll his head as he does in the Cardin commercial, but does appear to be restraining himself, appearing almost rigid at times.
A source with direct knowledge of Fox’s illness who viewed the Cardin ad said Fox is not acting to exaggerate the effects of the disease. The source said Fox’s scenes in “Boston Legal” had to be taped around his illness, as he worked to control the tremors associated with Parkinson’s for limited periods of time.
A disorder of the central nervous system that affects movement, often including tremors.
In PD cells that produce dopamine start to die (Kristeen Cherney, Healthline). 60+ is typical age of PD onset. Life expectancy is about the same as general population, particularly for those who have lived with PD for 10 years or more.
More than 200,000 US cases per year (incidence). About 1 million are living with PD (prevalence).
- Can’t be cured, but treatment may help
- Requires a medical diagnosis
- Lab tests or imaging often required
- Chronic: can last for years or be lifelong
Requires a medical diagnosis
Parkinson’s often starts with a tremor in one hand, although 30% of PDers do not have tremors at onset.
Other symptoms are slow movement, stiffness, and loss of balance.
People may experience:
- Tremor: can occur at rest, in the hands, limbs, or can be postural
- Muscular: difficulty standing, difficulty walking, difficulty with bodily movements, involuntary movements, muscle rigidity, problems with coordination, rhythmic muscle contractions, slow bodily movement, stiff muscles, or slow shuffling gait
- Cognitive: amnesia, confusion in the evening hours, dementia, or difficulty thinking and understanding
- Sensory: distorted sense of smell, loss in contrast sensitivity, or loss of smell
- Sleep: daytime sleepiness, early awakening, nightmares, or restless sleep
- Whole body: dizziness, fatigue, poor balance, or restlessness
- Speech: impaired voice, soft speech, or voice box spasms
- Facial: jaw stiffness or reduced facial expression
- Urinary: dribbling of urine or leaking of urine
- Mood: anxiety or apathy
- Also common: blank stare, constipation, depression, difficulty swallowing, drooling, falling, fear of falling, neck tightness, small handwriting, trembling, unintentional writhing, or weight loss
PD can’t be cured, but treatment may help.
PD and Activities of Daily Living
Those with PD benefit from exercise. Some stiffness, soreness may be eliminated by regular workouts. JV walks, swims, plays tennis. Healthy diet, social interaction, sufficient rest also are beneficial.
PDers should be encouraged to keep a gratitude journal (GJ). Idea is to get in habit of writing in a GJ every day or several times a week. In GJ list 5 things for which you are grateful. Not just list, explain why. Avoid repeating yourself. Research has found routine keeping of GJ lowers blood pressure, eases anxiety, and my help dealing with depression. GJ entries may seem forced at 1st, but keep at it. As GJ becomes habitual, you will look forward to these periods of positive reflection.
A brain-PD connection even has been found. “Benefits of gratitude start with the dopamine system, because feeling grateful activates the brain stem region that produces dopamine. Additionally, gratitude toward others increases activity in social dopamine circuits, which makes social interactions more enjoyable.”
Medications can help control the symptoms of Parkinson’s.
Other treatments: Benztropine,
Bromocriptine (Parlodel ), Selegiline (Eldepryl), Cabergoline, Carbidopa/Levodopa, Rivastigmine (Exelon), Ropinirole (Requip), Entacapone (Comtan), Tolcapone (Tasmar), Pramipexole (Mirapex), Rotigotine through the skin, Rasagiline (Azilect)
Lifestyle: Physical exercise specialists.
Neurologist: Treats nervous system disorders.
Primary care provider (PCP): Prevents, diagnoses, and treats diseases.
While Levadopa was a breakthrough in PD treatment, taking it for long periods can lead to dyskenisia…rapid shakes and movements…that can be worse than tremors and shakes that levadopa was taken to control in 1st place. These involuntary movements are not part of the disease itself. Dyskinesia is a side effect of levodopa — the gold standard medication for Parkinson’s motor symptoms tremor and rigidity — and can significantly impact quality of life.
“If we could control dyskinesia, it would probably be the biggest change in terms of how we treat patients,” said Susan Bressman, MD, chair of the Department of Neurology at Beth Israel Medical Center in New York City, in an MJFF video on dyskinesia.
Physicians have long thought that dyskinesia arose with long-term use of levodopa, so patients may delay starting medication and live with disabling symptoms in an attempt to “save” the window of efficacy before dyskinesia begins. While more recent research is showing that levodopa-induced dyskinesia may be influenced more by stage of disease than length of medication use, a treatment for this side effect would be a game-changer for many patients.Dyskinesia — involuntary movements that look like smooth tics or uncoordinated movements… are a side effect of levodopa.
Making an accurate diagnosis of Parkinson’s — particularly in its early stages — is difficult, but a skilled practitioner can come to a reasoned conclusion that it is PD.
The main role of any additional testing is to exclude other diseases that imitate Parkinson’s disease, such as stroke or hydrocephalus. Very mild cases of PD can be difficult to confirm, even by an experienced neurologist. This is in part because there are many neurological conditions that mimic appearance of Parkinson’s.
A person’s good response to levodopa (which temporarily restores dopamine action in the brain) may support the diagnosis.
JV’s response to carbadoba/ levadoba was immediate; she lost her foot dragging and was able to walk upright. This would suggest for her PD was correct diagnosis.
Reliable and standard diagnostic tests for PD have yet to be developed. Researchers are working on an accurate “biological marker,” such as a blood test or an imaging scan. To date, the best objective testing for PD consists of expensive specialized brain scanning techniques that measures dopamine system and brain metabolism.
Before Levadopa, PD caused severe disability and death in 25% of patients within 5 years, 65% within 10 years, and 89% within 15 years. PD mortality rate was 3 times that of general population matched for age, sex, and race.
After Levadopa, PD mortality rate dropped 50%, life span was extended by many years; unfortunately levadopa seems to slow but not eleminate PD progression. Levadopa treats visible PD symptoms not underlying PD causes.
American Academy of Neurology notes the following characteristics may help predict PD progression.
• Advanced age at PD onset, and initial rigidity/hypokenisia helps predict (1) rapid rate of motor progression; (2) early development of dementia; (3) early tremors may help predict a more benign PD course and longer Levadopa benefit.
• Males with co-morbiditoes and balance issues exhibit higher rates of PD motor progression.
• Advanced age of PD onset, dementia, and decreased responsiveness to Levadopa and other PD meds may help predict earlier nursing home placement and death.