Michael J. Fox is finding “hope in the wreckage” of Parkinson’s
In his latest book, “No Time Like the Future: An Optimist Considers Mortality,” actor Michael J. Fox refers to his 30-year experience with Parkinson’s disease as a “lesson in humility.”
Fox is now 59; he was diagnosed at 29 after starring in TV shows like “Family Ties” and in classic movies such as the “Back to the Future” trilogy. This is his fourth memoir that focuses on his Parkinson’s journey, which now includes aging on top of spinal surgery and other issues. Fox, whose Michael J. Fox Foundation raises millions for Parkinson’s research, admits it’s hard to be continually making lemonade when life hands him lemons. But, he writes, even in the midst of a pandemic, there are “fragments of hope in the wreckage.”
Parkinson's disease occurs when nerve cells, or neurons, in the brain are impaired or die and stop producing the dopamine that controls movement, according to the National Institute on Aging. Nearly one million people have Parkinson's disease in the United States, according to the Parkinson’s Foundation. That’s more than the combined number diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease (or Amyotrophic Lateral Sclerosis), the foundation says.
In light of Fox’s latest book about Parkinson’s, we talked to Karen Lynch, MD, a neurologist at Neurologists of Cape Cod in Hyannis, about the latest in Parkinson’s care and treatment. (Her responses have been edited for length.)
How do you define Parkinson’s?
It’s a movement disorder of slowness of gait, stiffness and, one of the big hallmarks, tremor at rest. It could slow gait (walking) but also other movements including facial expressions, which could be quite subtle. Often it can present as someone who tends to take small steps instead of big strides, a shuffle or hesitancy.
How does Parkinson’s develop?
Typically, very slowly. It can be a few years and patients can be under the radar for quite a long time before they come to a primary physician or even a neurologist. The big symptom that most people will notice is the tremor, but many Parkinson’s patients won’t have a tremor. Issues like stiffness and slowness can be missed because obviously, when you think about it, anyone who gets older is going to be stiff and slow for varying reasons – arthritis, low back issues for example.
Fox has had Parkinson’s for 30 years. How quickly does it progress?
If you’re getting it in your late 70s or 80s, it does seem to progress more quickly than someone younger. For someone in their 70s, it could mean 5-10 years with minimal or mild disability, however as with many neurological conditions, there is no fixed rate of progression and patients can move at different paces, with the changes overall slow. Generally, after a decade with the disease, patients will have some form of disability that is impactful. The unfortunate thing is that under the Parkinson’s “umbrella” we have related conditions and they can have a very different path. That includes Lewy Body dementia, multi-symptom atrophy (MSA) and Progressive Supranuclear Palsy (PSP). Those three are more rapid, in part because they tend to affect other systems, not just movement. Typical Parkinson’s Disease is very slowly progressive.
If it can be confused with other conditions, how is Parkinson’s diagnosed?
It’s always important to have a neurologist check if there’s anything that just seems amiss -- somebody who’s falling more or gradually deteriorating more quickly than their peers. We have a scan that can confirm Parkinson’s Disease when perhaps it is not clear: a DaTscan, which we can perform at Cape Cod Hospital, in the Nuclear Medicine Department. It essentially looks at the basal ganglia, which are the main areas of the brain where the pathology of Parkinson’s lies. It measures the dopamine that’s being produced. People who have Parkinson’s Disease don’t have enough dopamine and it is read as a scale on the scan.
There has been a lot of research into Parkinson’s in the last few years, including the use of immunotherapies and STEM cells. How is Parkinson’s treated now?
A lot of [new therapies] are still in animal models. Meaning, apart from maybe some of the medications where they were looking at repurposing medications, most of it is quite experimental. Dopamine replacement is still the best standard of care. L-Dopa the active form has been around for decades, discovered in the 1950s. It still remains the best option to increase dopamine reduced in Parkinson’s Disease.
In addition, areas of the brain that are degenerating in Parkinson’s and don’t produce dopamine may be targets for deep brain stimulation (DBS). It’s essentially a very small electrode that is placed in the brain to stimulate the neurons and improve the motor (movement) symptoms. A Parkinson’s Disease expert can continue to program and adjust it using a small device outside the body. It tends to be used for younger, generally healthy patients who don’t want to be on dopamine for an extended time or to supplement current therapy.
How is exercise used to help Parkinson’s patients?
Biking and programs like Pedaling for Parkinson’s seem to have significant longevity, in terms of efficacy, both in reducing progression of disease, but also reducing the need for patients to be on higher amounts of medications. In addition, boxing programs have come out as being extremely beneficial. On the Cape, there is an excellent organization called Rock Steady Boxing. They have classes and exercises programs, where clients perform routines/repetitive movements, (boxing), use all four limbs with the addition of working on vocalizations (yelling, shouting out). In my practice, patients involved with Rock Steady Boxing programs tend to do extremely well in their condition – less disability, less medications, slower disease progression for example.
What do you wish people understood about Parkinson’s?
A lot of people get extremely worried when they are told of this diagnosis, and it certainly is a life altering illness with no cure. However, for the vast majority , the progression is quite slow, with the average being 15 years. So, when patients come in and they are in their 80s, this is something, with good neurological care and multidisciplinary approach (PT/OT, exercise), they can manage and live with. Our younger patients similarly have a wealth of new medications on the market, an explosion of research and new methods of managing PD symptoms available when we partner with the right experts.