Jeremy Otte, director of outreach & education, and Dale Luedtke, a musician with Parkinson disease, were featured on The Morning Blend, a morning talk show on TMJ4 Milwaukee. Check it out!
Educating the Educated About Parkinson’s Disease
This column appeared in Parkinson’s News Today.
I went to the dermatologist yesterday for a skin check. Those of us who have Parkinson’s disease (PD) should make a habit of getting a yearly check because our condition increases the odds of getting skin cancer. The Mayo Clinic reported that patients with Parkinson’s “were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s.”
So, I had an appointment with the dermatologist. After a thorough body check and five biopsies, I was free to leave. The nurse stayed back with me after the doctor left because I struggled to move. She asked when I was diagnosed with Parkinson’s. After I answered “2004,” she replied, “Isn’t that young for Parkinson’s?” Not as young as when the symptoms began 10 years before that, I wanted to answer.
She followed that question with another: “Did it run in my family?”
No.
“Not even one relative?”
No.
“Are you sure?”
Yes.
While I dressed and walked out to where my husband waited in the car, I shook terribly. That’s something I hadn’t done in quite a while. I was sure it was the combination of numbing five different areas with an intrusive needle and the anxious feeling that came over me with the news that spots could be cancerous. However, what caught me almost more off guard was the nurse’s questioning.
I guess what surprised me is how uninformed so many still are.
I have spoken to groups about my 20-year journey with Parkinson’s disease. I write about it on my blog. I am open about it with others. I have written articles for several different publications. I am a PD advocate. I know a lot about the disease. I just figure others do, too. What surprised me most about her questions was that she worked for a dermatologist who should be very familiar with PD since the disease can highly affect the skin.
As patients, our job is far from finished.
As long as we live with PD, we are responsible for getting information about this disease out to everyone we can, as best we can. Not just to newbies in the patient club, but also those in the medical fields. Perhaps the patients and caregivers should hold a conference for medical professionals instead of the opposite. After all, we are living PD day to day, feeling it moment by moment. As my movement disability specialist once told me, “You patients are the experts. The doctors take their cue from you.”
If that is true then we need to be proactive with the hand we’re dealt. We must educate those around us, whether they’re a patient, nurse, caregiver, doctor, dental hygienist, or medical transporter. It’s going to take a whole lot more than answering the question of whether Parkinson’s disease is hereditary — it was obvious to me the nurse wasn’t buying my answers.
Exercise can improve non-motor symptoms of Parkinson’s disease
Exercise has potential to improve non-motor as well as motor symptoms of Parkinson’s disease (PD), including cognitive function, report investigators in a review published in the Journal of Parkinson’s Disease.
PD is a slowly progressive disorder that affects movement, muscle control, and balance. While traditionally regarded as a movement disorder, it is now known to be a heterogeneous multisystem disorder — in recognition of the significant impact that non-motor symptoms have on the quality of life of individuals affected by PD. It is widely acknowledged that physical exercise improves motor symptoms such as tremor, gait disturbances, and postural instability. However, the effect of exercise on non-motor symptoms in PD, especially cognitive function, is less clear.
The number of older people with and without PD that experience cognitive impairment is steadily increasing worldwide. It is associated not only with a substantial rise in healthcare costs, but also affects the quality of life of both patients and relatives or carers. Up to 57% of patients suffering from PD develop mild cognitive impairment within five years of their initial diagnosis, and if they survive more than ten years, the majority will eventually develop dementia. The underlying neurophysiological mechanisms for cognitive decline in PD are not completely understood, but an accumulation of amyloid plaques, mitochondrial dysfunction, and neurotransmitter changes are all suggested to contribute.
A comprehensive literature review was conducted by investigators from the Institute of Movement and Neurosciences, German Sport University, Cologne, Germany, and the VasoActive Research Group, School of Health and Sport Sciences, University of the Sunshine Coast, Queensland, Australia. The studies reviewed included investigations of the effects of coordination exercise, resistance exercise, and aerobic exercise on domain-specific cognitive function in patients with PD. “Physical exercise is generally associated with increased cognitive function in older adults, but the effects in individuals suffering from PD are not known,” explained lead investigator Tim Stuckenschneider, MA.
The researchers identified relevant studies published before March 2018. There were 11 studies included with a combined total of over five hundred patients with PD with a disease severity from stages 1 to 4 on the Hoehn & Yahr scale, which is used to describe the symptom progression of PD. In four studies, positive effects of exercise on cognition (memory, executive function, and global cognitive function) were shown with no negative effect of exercise on any cognitive domain. Furthermore, disease severity was generally improved by exercise interventions.
The investigators concluded that all modes of exercise are associated with improved cognitive function in individuals with PD, however, no clear picture of which exercise mode is most effective emerged as they may influence cognitive function differently. Aerobic exercise tended to improve memory best, but different forms of exercises such as treadmill training or stationary bike training may have different effects, although both are considered aerobic exercise. Future studies are needed that directly compare the effects of different exercise modes, as the number of high-quality research projects is still limited.
“The potential of exercise to improve motor and non-motor symptoms is promising and may help to decelerate disease progression in individuals affected by PD,” observed Stuckenschneider. “Exercise therapy needs to be, and often already is, an essential part of therapy in individuals with PD. However, it is mostly used to treat motor symptoms. As part of a holistic therapy, the potential of exercise to maintain or improve non-motor symptoms such as cognitive function in individuals with PD needs to be acknowledged, and the most effective treatment options need to be defined. This will not only help practitioners to recommend specific exercise programs, but also ultimately improve the quality of life of the individual. Our work shows that ‘exercise is medicine’ and should routinely be recommended for people with PD to help combat both the physical and cognitive challenges of the disease.”
WPA on the Radio!
WPA Executive Director Gary Garland was interviewed by Milwaukee Radio Group host Andrea Williams last week. Listen here!
Manganese and Parkinson’s: Mechanism may explain link
In the human body, manganese aids blood sugar regulation, bone formation, and immunity.
However, exposure to excessive levels of manganese may trigger Parkinson’s-like neurological symptoms. Manganese builds up in the basal ganglia area of the brain.
Researchers have known about these links between manganese and Parkinson’s for decades, but new research helps elucidate the mechanisms behind these associations.
Anumantha Kanthasamy, the Linda Lloyd Endowed Chair of Neurotoxicology at Iowa State University in Ames, led the new research.
Manganese helps transfer a faulty protein
Parkinson’s disease is characterized by clumps formed by misfolded alpha-synuclein protein. These protein aggregates are toxic to neurons.
Kanthasamy and colleagues set out to investigate how these misfolding proteins might interact with manganese to trigger the progression of Parkinson’s.
To do so, they examined data from mice and blood serum samples collected from eight welders. As a group, welders have a higher risk of prolonged manganese exposure. The research also examined a control group of 10 people.
The analyses revealed that welders with exposure to manganese had higher levels of misfolded alpha-synuclein, which puts them at a higher risk of Parkinson’s.
Additional cell culture tests showed that misfolded alpha-synuclein was secreted through small vesicles called exosomes into the extracellular space. In other words, the vesicles enabled the proteins to travel from cell to cell and further spread the misfolded protein.
The scientists also isolated alpha-synuclein-containing exosomes from alpha-synuclein-expressing cells that had exposure to manganese and delivered them to a brain area in the mice called the corpus striatum. This induced Parkinson’s-like symptoms in the mice.
Manganese seemed to accelerate the “cell-to-cell transmission” of alpha-synuclein, which, in turn, led to neurotoxicity. Kanthasamy and colleagues explain:
“Together, these results indicate that [manganese] exposure promotes [alpha-synuclein] secretion in exosomal vesicles, which subsequently evokes proinflammatory and neurodegenerative responses in both cell culture and animal models.”
“[W]e identified a possible mechanism involving the exosome-mediated, cell-to-cell transmission of [alpha-synuclein] during exposure to the environmental neurotoxicant,” write the authors.
Findings may lead to earlier detection
According to the National Institutes of Health (NIH), around 50,000 individuals in the United States receive a diagnosis of Parkinson’s each year, and 500,000 people currently live with the condition.
Though the condition does not yet have a cure, diagnosing it earlier may prevent irreversible brain damage and help accelerate human clinical trials of new drugs.
The results that Kanthasamy and colleagues have just published may help scientists devise a new diagnostic test for Parkinson’s that could detect the disease much earlier on. The results may also help scientists test how effective new Parkinson’s drugs are.
“As the disease advances, it’s harder to slow it down with treatments,” Kanthasamy says. He adds: “Earlier detection, perhaps by testing for misfolded alpha-synuclein, can lead to better outcomes for patients. Such a test might also indicate whether someone is at risk before the onset of the disease.”
However, the study authors also caution that their findings are still experimental, and that such a diagnostic test may not be available for years.
For Caregivers: When and How To Say “No” to Caregiving
When is it time to say “No”?
How does a caregiver know when he or she can no longer manage the daily caregiving routines and planning responsibilities? What signals alert the caregiver that he or she is in trouble of getting lost in caregiving? Can a caregiver who cherishes a loved one set limits on responsibilities without feeling guilty or morally bankrupt? These are questions at the heart of successful, long-term caregiving. Unfortunately, for most caregivers, these questions do not arise until they are feeling overwhelmed and depleted.
Being able to say, “No, I can no longer continue to provide care in this way,” may not only save the caregiver from emotional and physical burnout, but can also open up opportunities of shared caregiving responsibilities with others while deepening the level of honesty and openness in the relationship.
Saying “No” may seem like a harsh statement to a caregiver who prides herself on being a helpful, kind and loving person. In fact, most caregivers choose to become one because they feel a moral imperative to do so. This imperative may come from a number of sources including family relationships and roles, friendship ties and social expectations.
Families often select the primary caregiver from cultural norms such as the youngest unmarried daughter or the oldest son as being responsible for a parent’s care. Friendship ties provide many single elders with caregivers who act in lieu of local family members. In the United States, the social norm is for family and friends to provide care to elders first before the government.
Current statistics show that the majority of elder care is provided by families and other members of an elder’s informal social network. Proximity is also a component in caregiving. The closer one is geographically to a loved one, the more likely he or she will become the caregiver. Personal values derived from one’s faith or spiritual practices may lead a person to feel called to provide care. Moral decision making based on humanistic values such as, “Everyone has the right to stay at home if they choose no matter what,” may encourage a person to become a caregiver.
Wherever the imperative is coming from, the role of the caregiver is intimately linked to that person’s code of ethics and the way in which the person chooses to act in his or her own life.
What does saying “No” mean anyway?
Is it a final giving up of duties that implies the caregiver is ending the relationship and leaving a loved one to fend for himself? Maybe the “No” means, “I’m tired and feel trapped.” Maybe the “No” means, “I have failed to be all I could be as a caregiver.” Maybe the “No” means, “I can’t do what you want me to do and I feel inadequate.” Or maybe the “No” just means, “ I am so tired, I have to stop.” The word “No” can have different meanings for different people. “No” doesn’t necessarily have to have a negative connotation attached to its meaning. “No” can be understood as a pause, a time for reflection, a breathing period or, “Let’s stop and talk this over. Things need to change.” Exploring the meaning of “No” for the caregiver is often the first step in establishing better emotional boundaries.
Healthy emotional boundaries are important in helping the caregiver distinguish between his or her own needs and the needs of the person being cared for. Boundaries remind the caregiver and elder that their relationship is between two adults and that there need to be expectations of mutual respect and autonomy for the relationship to be successful.
The ideal time to discuss caregiving boundaries is in the beginning when both people are new to the process of developing this special relationship.Talking about needs in a calm and supportive way allows each member to feel the other’s concern while acknowledging that the relationship will have some limitations.
In an idealized world of caregiving, the care recipient could turn all problems over to the caregiver without any worries or stress and the caregiver would have limitless capacity for love and work. But neither of these situations is realistic. Getting off to a good start by talking about boundaries as part of a healthy relationship lays the groundwork for developing emotional resilience and flexibility to respond to an increase in the elder’s care needs, while managing the inevitable caregiver stress.
In practice, most caregivers address the issue of their own limits after the caregiving relationship gains full steam. Caregivers often get inducted into helping through a sudden major health crisis of a loved one (such as a heart attack) or by the slow but steady process of taking on tasks and responsibilities for the elder as she experiences aging and the loss of function. In either situation, the caregiver and care recipient aren’t necessarily thinking about being in a relationship but about getting the jobs done that need to get done.
In the first instance, addressing the immediate and critical health care needs of the elder takes precedence over long-term care planning. However, as soon as the elder is stable, the time is right for the caregiver to discuss boundaries and limits.
In the second instance, caregivers need to raise the issue of boundaries as soon as they begin to detect the first signs of their own stress or burnout. Signs such as avoiding the loved one, anger, fatigue, depression, impaired sleep, poor health, irritability or that terrible sense that there is “no light at the end of the tunnel” are warnings that the caregiver needs time off and support with caregiving responsibilities.
Setting emotional limits involves a process of change with five key steps.
First, the caregiver must admit that the situation needs to change in order to sustain a meaningful relationship. Without change, the caregiver risks poor health, depression or premature death. The primary caregiver is such an important person to the elder that impaired caregiver health puts the elder at further health risk.
Second, the caregiver must reconsider personal beliefs regarding what it means to be a good caregiver. Since the caregiver generally has moral expectations of his or her own behavior, redefining what “should” be done to what is reasonable and possible to do can be a liberating moment. This may include lowering some expectations of one’s ability to do things and delegating tasks to others.
Third, the caregiver needs to identify key people (friends, family or professionals) who can support and guide the caregiver through this change process. Frequently, caregivers join support groups with other caregivers to reinforce their commitment to change or hire a geriatric care manager coach. A support group is also a place to express anger, anxiety, frustration and sadness about the caregiving experience instead of inadvertently having these feelings pop out during a tense conversation with a loved one.
Fourth, the caregiver needs to develop communication tools to express the need for boundaries. Honesty and simplicity in talking about feelings and needs does not come easily; particularly if one is not familiar with having these types of direct discussions.
Lastly, the caregiver must be able to sustain this new approach while allowing the elder time, to react and express his or her feelings about the changes. Readjusting the balance in any relationship takes time, especially when both members have competing needs.
There is a simple but effective communication approach that can help caregivers express feelings and set boundaries.
This approach encourages the caregiver to speak from an “I” point of view, in a non-accusatory fashion, expressing the caregiver’s limitations or feelings and offering an alternate solution. Some examples of “I” statements are:
- “I can no longer drive you to all of your medical appointments due to my work schedule and my limited time off. I know this will be a change for you. I suggest we look into other transportation options such as the Busy Bee Medical Transport Service.”
- “Mother, I am unable to continue with the responsibility of cleaning the house weekly. I want to spend my time with you on other matters. I know it’s hard to let newcomers help, but I think it is time to hire a homemaker service you would be comfortable with.”
- “Dad, I can no longer assist you down the outside stairs. I am worried about your safety and mine. I believe we need to build a ramp for easier access to your home. I have found a carpenter who has reasonable rates for construction.”
In each of the above statements, there is a presentation of what the speaker cannot continue to do, an acknowledgement that the change will have a consequence for the elder and a suggested solution. No attempt is made to make the elder feel guilty about the effort the caregiver is expending or the caregiver’s stress level.It is understood the elder knows the caregiver is working hard.
Setting the boundary is the caregiver’s responsibility. There is, however, an invitation for discussion and joint problem solving. At first, expressing boundaries in “I” statements may feel awkward, but with practice, caregivers can learn to raise difficult topics by establishing a comfortable atmosphere for discussion.
Initially, the caregiver may experience resistance on the part of his or her loved one to dialogue about changes as to the provision of care. Gentle persistence is needed to attend to the need for new boundaries. Discussions that can be introduced at a time when both individuals have lower stress and are feeling quiet and comfortable with each other are discussions that have a greater chance of success.
Avoid making decisions about change during emergencies. Waiting until the situation is calm, and both parties can take time to think through issues, creates an atmosphere of joint decision making and ownership of the outcome. Making changes in small steps toward a larger change gives everyone a chance to adapt comfortably.
Caregiving is a dynamic relationship that evolves over time. As caregiving tasks increase, so will stress on the caregiver. A caregiver and his or her loved one will manage this challenge successfully if each person is able to express directly what he or she needs, wants or can do. A relationship that allows for and respects boundaries and individual limitations can expand to include other caregivers without the risk of lessening the importance of the primary relationship that sustains the elder in the aging process.
WPA Podcast
We recently launched a Podcast/Online Radio Show!
We will create a new episode every other week, and we’ll interview doctors, people with Parkinson’s, caregivers, therapists and more!
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