Why Parkinson’s Disease Is So Scary: No Cause No Cure But It’s Not A Killer
Robin Williams’ suicide on Tuesday was partly related to his diagnosis of Parkinson’s Disease, the actor’s wife revealed on Thursday.
Robin’s sobriety was intact and he was brave as he struggled with his own battles of depression, anxiety as well as early stages of Parkinson’s Disease, which he was not yet ready to share publicly,” Susan Schneider said in a statement.
For Williams, knowing that his Parkinson’s would progressively get worse was “an additional fear and burden in his life,” a family friend told CNN.
What is Parkinson’s Disease?
About 1 million Americans suffer from Parkinson’s, a progressive neurological disorder that afflicts movement, balance, and speech. Famous patients-turned-advocates include Michael J. Fox, Janet Reno, and Muhammad Ali.
For Parkinson’s patients, the constellation of symptoms can vary widely. Tremors and vocal spasms are common some sufferers even find themselves unable to walk through doors, feeling as though their feet are stuck to the ground.
And for a professional performer like Robin Williams, who built his career around physical comedy and rapid-fire patter, the looming symptoms may have been especially terrifying.
Some researchers think there may be a genetic link that makes some people more susceptible to Parkinson’s, although that’s not been proven.
But five years after his Parkinson’s diagnosis, Grant has a different outlook.
Please Fill Out This Form And Print Legibly
Doctors office staff, please take note of this one. I cringe whenever I see a new doctor and have to fill out reams of paperwork. My handwriting is atrocious it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.
Also Check: Does Weed Help With Parkinsons
You Said You Spend A Lot Of Time In Your Office Writing What Are You Writing About These Days
About Parkinsons mostly, and about death. Death is supposed to be a scary subject, but I find that in the context of Parkinsons, it is not so scary. My first Seattle neurologist told me that it was good news that Parkinsons would not kill me, that I would die with my disease, not of it. At first, I bought into his assumption that longevity was better than brevity. But I have since then wondered why he thought it good news that my disease would not kill me. As I grow older and as my disease progresses, I have begun to question whether it is really preferable for my disease to slowly but inexorably rob me of the ability to live independently, to deprive me of one after the other of my abilities to walk, work, build, speak, write, move, take care of others, take care of myself? He seemed to assume that a long, miserable, dysfunctional life was better than a short, happy, functional life.
He wanted me never to give up hope that scientists would discover a cure. Surely he knew then what I have since figured out: that even if a cure is soon found and fast-tracked through the FDA approval process, it will not bring those dead cells in my brain back to life.
To order Parkinson Pete on Living and Dying with Parkinsons Disease, ask your local bookstore to order you a copy, or order one directly from Amazon.com in either a Kindle or a print edition.
Don’t Miss: Can Stress Cause Parkinson’s
Oligomers Disrupt Cell Membrane Integrity
In the new study, the researchers observed what happens when a protein called alpha synuclein malfunctions and forms into clusters called oligomers, which are toxic to brain cells.
They used solid-state nuclear magnetic resonance spectroscopy to characterize different structural features of the oligomers and then examined how the features influenced their interaction with the cells. They used brain cells from rats as well as brain cells sampled from human brain tumors.
The study is significant because the team found a way to keep the normally unstable oligomers stable for long enough to observe a level of detail that has not been seen before. Once they form, oligomers very quickly either enter cells, dissolve, or turn into long fibers.
It is a bit like if you put a piece of extremely hot metal on to a plastic surface, explains co-senior study author Dr. Alfonso De Simone, of the Department of Life Sciences at Imperial College London. In a fairly short space of time it will burn a hole through the plastic.
He suggests that the oligomers ability to disrupt the integrity of the membrane is a crucial step in the process that eventually kills the brain cell.
Levodopa Makes Symptoms Worse
Another misconception about levodopa is that it can make Parkinsons disease symptoms worse. This is not true.
It is important to note that levodopa can cause other motor symptoms, such as dyskinesia, which refers to involuntary jerky movements. However, the onset of dyskinesia is to the progress of the underlying disease rather than how long an individual has been taking levodopa.
Therefore, doctors no longer recommend holding off on taking levodopa until later in the disease.
According to the American Parkinsons Disease Association , dyskinesia does not generally appear until the individual has been taking levodopa for 410 years. The APDA also writes:
Dyskinesia in its milder form may not be bothersome, and the mobility afforded by taking levodopa may be preferable to the immobility associated with not taking levodopa. People with Parkinsons must weigh the benefits from using levodopa versus the impact of dyskinesia on their quality of life.
Tremor is perhaps one of the most recognizable symptoms of Parkinsons disease. However, some people develop nonmotor symptoms before tremor appears.
Also, some individuals do not experience tremor at any point during the diseases progression.
Speaking with MNT, Dr. Beck explained, About 20% of people with Parkinsons disease do not develop a tremor. Although scientists do not know why this is the case, Dr. Beck believes that tremor severity, in general, might depend on which brain regions the disease affects.
Recommended Reading: Functional Limitations Of Parkinson Disease
Potential Neurotropism Of Covid
At this time, we know very little about SARS-CoV-2 in the brain. Post-mortem studies on patients with SARS, however to have suggested the presence of viral particles in central nervous system tissue,.
A recent publication examining the localization of SARS-CoV-2 in 27 people who died from COVID-19 demonstrated that 36% had apparently low levels of SARS-CoV-2 RNA and proteins in the brain, although they did not report the cellular localization or regions examined, and the signals may not have been present within the brain parenchyma. A second study similarly reports detectable SARS-CoV-2 RNA in four of 12 brain samples, although again the signal may not have been from brain parenchymal cells.
While there is, at this time, little evidence that SARS-CoV-2 enters the brain parenchyma, there are multiple means by which the virus might be able to do so. Preclinical animal studies report that after intranasal inoculation of SARSCoV in transgenic mice that overexpress human ACE2, or MERS-CoV in mice overexpressing human dipeptidyl peptidase 4, SARSCoV and MERS-CoV can invade the brain, possibly via transit through the olfactory nerves, to reach CNS nuclei, including thalamus and brainstem we note, however, that these mice over-express the viral receptors, and these reports do not model normal infection routes.
What Do You Wish You Would Have Known When You Were Diagnosed That You Know Now About Living With Parkinsons
I wish I had known it was not my fault. I had come to think that rotten health was at least in part punishment for unwise or immoral behavior. If I smoked I would get lung cancer. If I ate too many Snickers bars I would have lots of cavities. If I overate I would get obese and have heart trouble or diabetes. If I drank and drove I would have an accident and lose an arm. If I didnt use a condom in my condo, I would wind up with a problem or a condition. What had I done to bring on freezing of gait? Surely, I thought, if I had exercised more or longer or differently, I could have held off the onset of FOG.
I now feel guilty that my Parkinsons is so hard on my wife. Until two years ago I did most of the driving. Now Anne does all of it. Until six months ago I carried the full trash barrels out every Tuesday morning and carried them back in empty Tuesday afternoon. If I try to do that now, I trip and fall, so Anne has to do it. Almost no one can understand me when I speak now, so Anne has to answer all the phone calls, do all of the runs to the post office and the bank, and has to arrange all of my medical appointments.
Guilt moves in mysterious ways.
Recommended Reading: How To Help A Person With Parkinson Disease
I Have The Same Problem
Sometimes, people respond with this statement when I comment about one of my symptoms :
- having to sit down when I put on my shoes
- losing my balance all the time
- inability to multitask
I think well-meaning people say they have the same issues because they dont want me to feel alone in experiencing these challenges. After all, they can develop over the natural course of aging. Most people do not understand, however, that I used to be very sharp mentally and was a strong athlete and dancer before I was diagnosed. That makes these symptoms much more glaring for me.
Can You Say More About Freezing Of Gait
The freezing has nothing to do with temperature and everything to do with immobility. FOG seems to result from a disconnect between the brain and the feet. My brain tells my feet to step forward, but my feet refuse to move. It is as if they are suddenly glued to the floor. FOG is dangerous.
Most people lean in the direction they want to walk and then pick up the lead-off foot and step it off in the desired direction. Then the other foot comes forward, takes the next step, and off they go. People with FOG, however, lean in the direction they want to go, but sometimes their feet refuse to follow there. The body continues to move in that direction, however, and you tumble forward. Sometimes the feet do take a couple of steps forward and then freeze. The momentum carries the body forward, past the suddenly immobilized feet, and the body tumbles down again. The feet can freeze without warning any time, but most FOG patients learn that their feet are especially subject to freezing as they are approaching an open doorway, an elevator, or the entrance to and the exit from an escalator.
Read Also: Parkinson’s And The Mind
Environmental Factors In Parkinsons Disease
Here are environmental factors that may play a role in the development of Parkinsons disease:
Although environmental exposure to these and other toxins is of continued research interest, its hard to determine if any one substance is a culprit. Most often, individual cases of Parkinsons disease result from a complex interplay between genetics and environmental and other factors.
Recommended Reading: Nutrition And Parkinsons Disease
Related Conditions And Causes Of Parkinsons Disease
Many conditions can cause symptoms that are similar to those of Parkinsons disease, including the following:
- Essential tremor
This foundation was founded in 2000 by the actor Michael J. Fox, who received a diagnosis of young-onset Parkinsons disease in 1991. Take a look at Parkinsons 360, the foundations guide for living with Parkinsons. Or if youd like to join a Parkinsons research study, visit the Fox Trial Finder.
With a mission to empower people with Parkinsons, this foundation funds research geared toward improving care and treatment for the disease. Sign up for their newsletter to receive news updates and information about Parkinsons resources. Or if you need help connecting with a health professional, call the foundations helpline at 800-4PD-INFO .
Don’t Miss: Can People With Parkinson’s Drive
Establishing Pd Research Priorities
The NINDS-organized Parkinsons Disease 2014: Advancing Research, Improving Lives conference brought together researchers, clinicians, patients, caregivers, and nonprofit organizations to develop 31 prioritized recommendations for research on PD. These recommendations are being implemented through investigator-initiated grants and several NINDS programs. NINDS and the NIHs National Institute of Environmental Health Sciences held the Parkinsons Disease: Understanding the Environment and Gene Connection workshop to identify priorities for advancing research on environmental contributors to PD.
Research recommendations for Lewy Body Dementia, including Parkinsons disease dementia, were updated during the NIH Alzheimers Disease-Related Dementias Summit 2019 .
The Neglected Side Of Parkinsons Disease
Parkinsons disease may not be an epidemic, but its more common than you might think. Approximately 1,000,000 Americans suffer from the illness, with 60,000 new cases appearing each year in the United States alone.
This neurodegenerative disorder, which is both progressive and incurable, usually begins around age 60, so neurologists believe that its prevalence is likely to increase dramatically with the graying of the nations population. But Parkinsons disease shouldnt be thought of only as an affliction of old age it can also strike considerably earlier in life, a fact that has become well known through such prominent examples as Michael J. Fox and Muhammad Ali .
Figure 1. Although Parkinsons disease is normally an affliction of old age, it can strike considerably earlier in life. Three-time world heavyweight boxing champion Muhammad Ali , for example, was diagnosed with Parkinsons disease at the age of 42, just three years after his final fight. He is shown here in a 1965 match with Floyd Patterson.
Read Also: Can Steroids Cause Parkinson’s Disease
You Are Lucky You Dont Have Tremors Or Your Symptoms Could Be Worse
Parkinsons is progressive and unpredictable. Its impossible to know where my symptoms might be six months from now, let alone six years from now. Just because I dont exhibit a particular symptom now does not mean I will never have it. At times, Parkinsons feels like the sword of Damocles hanging over my head.
What Are The Symptoms Of End
Stage four for Parkinsons disease is often called advanced Parkinsons disease because people in this stage experience severe and incapacitating symptoms. This is when medication doesnt help as much and serious disabilities set in.
Theres an increased severity in:
- How you speak a softer voice that trails off.
- Falling and trouble with balance and coordination.
- Freezing a sudden, but temporary inability to move, when you start to walk or change direction.
- Moving without assistance or a wheelchair.
- Other symptoms such as constipation, depression, loss of smell, low blood pressure when going to stand up, pain, and sleep issues.
Many times someone with advanced PD cant live on their own and needs help with daily tasks.
Stage five is the final stage of Parkinsons, and assistance will be needed in all areas of daily life as motor skills are seriously impaired. You may:
- Experience stiffness in your legs. It may make it impossible to walk or stand without help.
- Need a wheelchair at all times or are bedridden.
- Need round-the-clock nursing care for all activities.
- Experience hallucinations and delusions.
As Parkinsons disease progresses into these advanced stages, its symptoms can often become increasingly difficult to manage. Whether you or your loved one with end-stage Parkinsons lives at home, in an assisted living facility or a nursing home, hospice services can optimize your quality of life and that of your family members as well.
Read Also: Balancing Exercises For Parkinson’s Patients
How Do You Die Of Parkinsons Disease
Asked by Deb Nigra 431 votes
Parkinsons disease, a chronic, progressive movement disorder characterized by tremors and stiffness, is not considered a fatal disease in and of itself, though it may reduce life expectancy by a modest amount. It is often said that people die with Parkinsons rather than of the disease.
People who are healthy when diagnosed will generally live about as long as other people in their age cohort, said James Beck, the vice president for scientific affairs at the Parkinsons Disease Foundation, which is involved in research, education and advocacy. It is not a death sentence.
Since Parkinsons generally affects people later in life patients are typically given a diagnosis in their 60s patients often die of unrelated age-related diseases like cancer, heart disease or stroke. But the most common cause of death in those with Parkinsons is pneumonia, because the disease impairs patients ability to swallow, putting them at risk for inhaling or aspirating food or liquids into their lungs, leading to aspiration pneumonia.
Do you have a health question? Submit your question to Ask Well.
Natural Methods Of Treatment For Parkinsons
Best foods for Improving Parkinsons:
Adding nutrition-dense, fresh, organic whole foods, such as greens, vegetables, fruits and more can be beneficial for people with Parkinsons.
- Raw foods Raw green, vegetables and greens are high in antioxidants and can fight inflammation and pain in the body.
- High fiber foods: Foods rich in fiber can help with bowel functions that can be a problem for those with Parkinsons.
- Healthy fats: Healthy fats, such as avocado, coconut, nuts, seeds and wild-caught fish can improve brain and neurological functions, as well as ones mood.
- Cold-pressed oils: Cold-pressed oils are rich in essential vitamin E and can reduce inflammation.
- Omega-3: Omega-3 supplements and foods rich in omega-3s, such as wild seafood, algae, seeds and nuts, can boost dopamine levels and improve inflammation.
- Fresh vegetable juices: Green juices can help with hydration and constipation.
- Moderate protein intake: Keeping protein intake low to moderate can improve symptoms.
- Green tea: Green tea is rich in antioxidants and can elevate dopamine.
Remove Foods that Can Make Parkinsons Symptoms Worse:
- Avoid excessive protein
- Remove any potential food allergens and foods you may be sensitive to
Supplements That Can Improve Parkinsons
Along with a healthy diet, specific supplements can help the progress and symptoms of Parkinsons disease :
Exercise for Parkinsons Disease
Tips for exercise:
Acupuncture for Parkinsons
Don’t Miss: Does Parkinson Disease Make You Tired