“Ambiguous loss and anticipatory grief” – Webinar notes

Recently, the Parkinson Society of British Columbia (PSBC) offered a webinar for caregivers on coping with ambiguous loss and anticipatory grief, featuring Trevor Josephson, a counselor with Peace Arch Hospice Society. Mr. Josephson defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change. He said:

Ambiguous loss can be a response to psychological absence – i.e., a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e., a loved one who is physically unavailable or living away from home.

Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.

Mr. Josephson offered recommendations to caregivers for coping with and managing these feelings. He encouraged caregivers to “re-define hope” in order to “discover new landscapes of hope in a world of ambiguity.” He said:

Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.

The speaker cited multiple books by the author Pauline Boss, MD, including the 2006 book, “Loss, Trauma, and Resilience.” To learn more about Dr. Boss, visit her website, www.ambiguousloss.com.

This webinar was recorded and can be found here:

https://www.youtube.com/watch?v=BsvLOTj6510&feature=youtu.be

Though this webinar was offered by an organization focused on Parkinson’s Disease (PD) and the two examples shared were about couples coping with PD, nothing in the webinar is PD-specific. …which is why we are posting the notes here.

Lauren Stroshane from Stanford Parkinson’s Community Outreach website attended the webinar and shared notes.

Robin

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Ambiguous loss and anticipatory grief
Webinar presented by the Parkinson Society British Columbia
March 25, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Trevor Josephson, is a clinical counselor and clinical manager at Peace Arch Hospice Society. He defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change.

Ambiguous loss can be a response to psychological absence – i.e. a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e. a loved one who is physically unavailable or living away from home. Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.

As Parkinson’s diseases progresses over time, many caregivers find themselves experiencing these kinds of loss and grief, which can lead to feeling isolated. Although discussing these issues is difficult, it is also important for anyone in a caring role.

True for BOTH ambiguous loss and anticipatory grief:

  • A normal reaction to an uncommon loss experience
  • Can compromise relationships
  • Can result in complicated grief
  • May threaten the ability to cope

Many aspects of personhood may be lost: lost aspects of former personality, loss of identity and sense of control over one’s life, loss of meaning in life, and loss of the expected or planned future. Family members may feel frozen, missing the person their loved one used to be, and yet the loved one is still there – just different. Families cope with grief in different ways, according to their cultural, spiritual background, past experiences, and resources available to them. 

Possible outcomes of these feelings can include a sense of sense of hopelessness or helplessness, uncertainty about one’s own identity, depression, anxiety, social isolation, and impeded grief. Complicated grief stretches on for a long time, sometimes years or even decades, and may make it difficult for someone to function.

What can help someone living with ambiguous loss?

The speaker cited works by Pauline Boss, MD, including her 2006 book, “Loss, Trauma, and Resilience.” The goal is to build resiliency to live with ambiguous loss or anticipatory grief long-term, as there may be no solution to make these feelings go away. Sometimes it is necessary to adjust our natural need for control and certainty in life, to accommodate change and factors over which we have little or no say.

What helps?

1. Finding or making meaning: making sense of your losses.
* Name your problem.
* Making meaning is a responsibility – no one else can do it for us.
* Reaching out for and accepting support from others.

2. Understanding the role of control: adjusting the need for control and accepting uncertainty.
* Accept lack of control.
* Decrease self-blame.
* Don’t focus on uncertainty.
* Focus on what you know and can control.

3. Who am I now? Weathering the change of identities: 
* Be honest about the changes in yourself and others.
* Discuss roles and expectations. You can include younger family members in this discussion as well; often, they want to be included.  
* Be open to change. 

Try to avoid negative thinking, such as thinking that you caused the situation, or that you should just “get over” your feelings. It is okay to normalize anger and guilt, but try to express your feelings in a healthy, non-harmful way. Accept ambiguity; practice both/and thinking: rather than feeling one specific way to the exclusion of other feelings, you can feel both love for the person you are caring for AND grief that they are no longer who they used to be.

Case study: Barb and Ed

Barb was diagnosed with PD in 2017. Her early stage symptoms included difficulty walking and tremor. Later, she developed more advanced symptoms such as difficulty eating certain foods and significant fatigue. She started having good and bad days. Her husband Ed is her care partner.

“Being part of a community helps. Staying connected with family and friends.” – Ed

Case study: Sharon and Don

Sharon was diagnosed in 2005 and lived at home with her husband Don, her primary caregiver. She started to have many falls leading to trips to the emergency department, with increasingly serious injuries from stitches, contusions, and cracked ribs, eventually to a broken neck. Don made the difficult decision to move her to a care facility in 2019.

“I really do miss my wife… who and what she was before the Parkinson’s but there’s nothing I can do to change that other than to recall and cherish good memories.” – Don

Redefining hope: discovering new landscapes of hope in a world of ambiguity

Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.”

Advice from members of the audience who have personal experience with these feelings:

It can be hard to get yourself to a new support group due to the fear of the unknown. But think of it as doing something just for you, something necessary, and try to get there. It really helps.

Regular exercise, such as going out for walks, can really improve your mood as well.

Connect with neighbors and friends to prevent yourself from becoming isolated.

Takeaways:

  • Naming these feelings makes coping easier.
  • Ambiguous loss is more than just an individual experience; it is imbedded in the community.
  • Ambiguous loss can change relationships with family and friends. Being flexible in one’s thinking style and perspective can help create meaning and hope.

 

“Pain in Parkinson’s” – Webinar notes

Recently, the Davis Phinney Foundation (dpf.org) presented a webinar on pain in Parkinson’s Disease (PD), featuring movement disorder specialist Janis Miyasaki, MD, with the University of Alberta, Canada. Depending on how pain is defined, it is quite common in PD. Certainly the same is true for the disorders in the Brain Support Network community.

Dr. Miyasaki explained that pain is a very personal experience that varies greatly between individuals. What one person calls significant, debilitating pain, another person might call a minor twinge or ache that doesn’t alter their daily habits.

During the lengthy question-and-answer session, Dr. Miyasaki was asked what concrete things people can do to help with pain on a daily basis. Her reply:

  • Take your medications regularly.
  • Try to have a daily bowel movement! Your medications will work better and you’ll feel better overall. Increasing your hydration, fiber, and physical activity can help keep your bowels moving regularly.
  • Address any mental health issues. Sleep, pain, movement, and apathy are all exacerbated by anxiety and depression.
  • Don’t blame everything on your PD; keep in mind that you may have other issues at play that need to be managed too.

This webinar was recorded and can be viewed here:

www.davisphinneyfoundation.org/webinar-pain/

Lauren Stroshane with Stanford Parkinson’s Community Outreach attended the webinar and shared her notes. See below.

Robin
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Pain and Parkinson’s – Webinar notes
Presented by the Davis Phinney Foundation
April 6, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Dr. Janis Miyasaki is the Director of the Parkinson and Movement Disorder Program at the University of Alberta, Canada. She helped develop the first neurologist-led palliative care program in the world.

She explained that pain is a very personal experience that varies greatly between individuals. What one person calls significant, debilitating pain, another person might call a minor twinge or ache that doesn’t alter their daily habits. Depending on how you define pain, the number of people with Parkinson’s Disease (PD) who experience it varies widely.

What types of pain do people with PD experience?

People with PD experience similar types of pain as the general populace. Pain classification is broken down into these categories: 

  • Musculoskeletal pain: Particularly common in those of us over 40, this refers to pain in the muscles and joints, whether due to old injuries or arthritis, among other causes. Movement tends to improve this type of pain; because those with PD tend not to move as much, this type of pain can be exacerbated by PD.
  • Neuropathic pain: Damage to the sensory system impairs the sensations being transmitted back to the brain. Sometimes this causes numbness, but sometimes it causes pain. In this case, the brain is perceiving pain or discomfort due to the damage or disease affecting the nerves. This type of pain varies widely, but may be felt as sharp, shooting, burning, tingling like “pins and needles,” creeping, or stabbing pain.
  • Pain related to treatment: Some people with PD experience pain when their medications are wearing off or kicking in. This transitional period sometimes triggers dystonia, or abnormal contractions of the muscles, which can be painful.

Chronic or recurrent pain can often get in the way of exercise, which we know is so important for those with PD. For those who have been sedentary for years or decades, and are trying to increase their activity, it can be challenging to get used to the pain that often comes with becoming more active.

Neuropathic pain tends to be constant all day, or may be worse when resting, whereas musculoskeletal pain often comes and goes depending on activity and fatigue.

Dr. Miyasaki noted that most of her patients with PD will exercise diligently if she tells them to. Just like any athlete starting out, you need to start gradually. A good rule of thumb is to do a moderate amount of exercise for 35 minutes, 5 times a week. Moderate exercise means being slightly short of breath while trying to keep up a conversation during your exercise.

As your endurance improves in terms of muscular strength and cardiovascular fitness, it will take more effort to get to that point of being slightly short of breath. For some patients, taking medications before exercise can be helpful, to make sure they feel “on” and can move as well as possible. For those who have musculoskeletal pain, try taking some ibuprofen or acetaminophen about an hour ahead of time, to help with discomfort.

For those who are experiencing a lot of pain, that can be a sign that something is wrong! Maybe your form isn’t correct, or maybe you are pushing too hard. It is also possible you have an injury or other unrelated medical issue. Don’t discount pain entirely; it is always possible there is something else going on that needs to be ruled out – you can get other illnesses besides PD! Have a good relationship with your primary care doctor and consult them as needed.

Treatment of pain

Non-steroidal anti-inflammatory drugs (often called NSAIDs) are often taken over-the-counter to treat pain, fever, and inflammation. These include medications like Advil (ibuprofen), Aleve (naproxen), Aspirin (acetylsalicylic acid) and others. NSAIDs can be hard on the stomach, with potential to cause peptic ulcer disease or bleeding. Taking them can be fine in small amounts, but there are safer options.

Tylenol (acetaminophen) is an important mainstay of pain management, often considered the first step in the “pain ladder.” There is nothing intrinsic about PD that changes how pain is treated; for those who tolerate acetaminophen well, it is a good medication to try for pain in moderation.

Editor’s note – Make sure not to exceed the maximum recommended daily dose of acetaminophen (Tylenol) which is 4000 milligrams (mg) per day, due to the risk of liver damage. Check the dosage on the bottle and be aware that many over-the-counter medications include acetaminophen, and you need to take that into account to avoid taking too much overall. Some of the many over-the-counter drugs that often contain acetaminophen as one of the active ingredients include Nyquil and Dayquil, Mucinex, Robitussin, Dimetapp, Excedrin, Sudafed, and Theraflu, among others. Check the active ingredients on the label or ask the pharmacist if you aren’t sure.

Physical methods such as cold therapy or heat therapy can also be very beneficial but must be used cautiously due to the risk of injury; if someone is immobile and cannot maneuver themselves off the ice pack or heating pad, then they need to be carefully supervised to ensure safety.

For individuals who experience painful dystonia – abnormal muscle contractions, usually in the hand or foot – when their medications are kicking in or wearing off, sometimes decreasing the overall amount of PD medication they are taking, if it has been increased significantly over time, can actually help decrease the painful dystonia by providing a smoother “on” period without as much fluctuation in doses. 

If dystonia is prolonged, severe, and disabling, but someone still responds well to levodopa, then surgery such as Deep Brain Stimulation or an intestinal levodopa pump (Duopa) may provide smoother therapy without the painful wearing-off or kicking in dystonia. In some cases, injections of botulinum toxin (Botox) can provide temporary relief, but must be repeated every 3 months to main effectiveness.

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Question and Answer Session

Q: How does neuropathic pain differ from overdoing it in exercise, and how can I tell the difference?

A: Neuropathic pain tends to occur spontaneously and be consistent throughout the day, as opposed to musculoskeletal pain which tends to come and go depending on time of day or activity. When you know that you’ve increased your activity, chances are, the pain is associated with your activity. A physical therapist can be very helpful in helping to sort out injury from normal pain.

Q: Is my dystonia caused by PD?

A: There are other causes of dystonia as well. Does it occur relative to your PD meds? Then you can say that it may be related to your PD and its treatment. If we stop the levodopa, you might not have the dystonia, but you also might not feel “on,” ever. It is due to progression of the illness. As time goes on, the brain is less able to handle the levodopa consistently, causing motor fluctuations, dyskinesias, sometimes dystonia. It is important to get your symptoms evaluated by a neurologist to determine if there might be another cause of the dystonia, and to learn about treatment options.

Q: I often experience leg cramping at night – is this related to PD?

A: It may be. Cramping, pain, stiffness, and tremor sometimes reemerge overnight. See if a dose of levodopa taken during the night (put it at your bedside so it’s accessible). If that is not helpful, see your neurologist or primary care doctor to rule out other possible causes of nighttime leg cramps.

Q: I started using magnesium for muscle cramping in my legs and it has been helpful. Is this something you recommend for your patients?

A: It’s important to go on a case-by-case basis and speak with your doctor before trying something new. For some people, magnesium may be helpful. There are a lot of different causes of leg cramps so it’s important to be evaluated.

Q: Is there any link between PD and pinched nerves?

A: No, there is no connection that we know of between PD and pinched nerves (herniated discs). Both tend to occur as we get older.

Q: How does pain affect mental well-being?

A: People who are already anxious and depressed tend to rate their pain higher than someone who is not anxious and depressed. Pain that is unrelenting is often also a cause of anxiety and depression. If someone has pre-existing depression, it is very important to treat that as well. 

People are sometimes reluctant to take medication for mental health issues; many of us grew up in the era of “pull yourself up by your bootstraps, keep a stiff upper lip.” But in PD, depression and anxiety are associated with real neurochemical changes in the brain. For those with PD, treatment for anxiety or depression is like taking a vitamin – replacing what has been lost.

Q: What is your opinion of cannabidiol (CBD)?

A: A substance found within cannabis (marijuana), CBD is sometimes used medicinally as it does not produce a “high” like THC, another compound in marijuana. CBD is commonly used and legal now in Canada. Studies have found that it is less effective than antidepressants such as duloxetine, but it may be slightly more effective than acetaminophen or ibuprofen.

People are attracted to it because it is perceived as “natural,” but keep in mind that lots of the substances that we use from the pharmacy originated from the natural environment – Aspirin is derived from wintergreen, for example.

There are possible side effects with CBD, such as hyperemesis syndrome (uncontrolled vomiting), lack of mental clarity, apathy, and cognitive changes. CBD also is not regulated – you don’t necessarily know what you’re getting, in terms of purity. It often has THC even if it says pure CBD, which can cause psychiatric effects like hallucinations that are very concerning in PD.

Q: Does deep brain stimulation (DBS) for PD help with pain?

A: If your pain is related to dystonia when your medications are kicking in or wearing off, then DBS may be helpful since it provides a steady state of therapy and oral medications can often be somewhat reduced.

Q: Can you elaborate on the “pain ladder” you mentioned?

A: We always want to start with the least risky and invasive methods to reduce pain. Cold or heat therapy can be beneficial, as mentioned previously. Stretching can be very helpful as well, though depending on the motivation and cognitive abilities of the individual, they may need help from a care partner to encourage and assist with stretching.

Next on the ladder are acetaminophen and ibuprofen. After that comes stronger NSAIDs like naproxen, then antidepressants or medications that might have antidepressant abilities, like Tramadol or duloxetine. Next come anti-epileptic medications that have been found to help with pain, such as gabapentin and pregabalin; these are higher up on the ladder because they often cause sedation or increased risk of falls in those with PD. At the top of the ladder are opioids, if your pain has not been relieved by these previous steps. These have the potential to cause a lot of side effects. Sometimes those with PD can experience relief even with doses that are very small. Palliative care doctors are often accustomed to treating cancer patients who may need much higher doses than those with neurodegenerative illness; in some cases, a fraction of a small dose is enough to help manage pain in those with PD.

Q: What is neuro-palliative care?

A: Palliative care is a multidisciplinary branch of medicine that aims to improve or maintain quality of life and decrease suffering for those who have serious illness. Neuro-palliative care integrates this approach with neurologic care for those in the later stages of degenerative neurologic diseases like PD. The team should include a neurologist with palliative care training, or a neurologist/palliative care specialist dyad working together.

In the later stages of PD, the individual often needs a walker or wheelchair and has significant swallowing problems, and can benefit from visiting a neuro-palliative care clinic in addition to their existing care team.

Dr. Miyasaki’s clinic tries to help people who have unaddressed symptoms, couples who have caregiver burnout, and pain as a significant problem. For ongoing needs, it’s really hard to access ongoing neuro-palliative care; it’s not widely available among other medical centers. Hopefully that will change in the future!

Q: Is shortness of breath a symptom of PD?

A: It can be. Once again, it is important for the primary care doctor to examine you and rule out any cardiac or respiratory issues that could be happening. If everything else is ruled out, then it may be your PD, and is often related to medication wearing-off anxiety. If that is the case, consider whether there are any cognitive issues, and also if the anxiety is being managed. Sometimes getting the anxiety under better control can really improve the shortness of breath. 

Q: When should I consider DBS surgery?

A: Probably sooner than you think! It’s not a last resort. DBS doesn’t improve symptoms beyond your best “on” with levodopa. That’s why we want to make sure patients have a response to levodopa before surgery. DBS can provide you with less “off” time and often a reduction in oral medications. If you have dyskinesias or other side effects from levodopa, then being able to treat with DBS and decrease medication can be a major benefit.

To be a surgical candidate, ideally you’re still having some good response to levodopa and are still cognitively doing well, still active physically. Many people wait until they’re in their 70s and may not have as much benefit from DBS, and more likely to have surgical complications and cognitive decline.

Q: What are some concrete things people can do to help with pain on a daily basis?

A: As Buddhists would say, living is a painful condition. We get to decide what we will do to try to mitigate it.

  • Take your medications regularly.
  • Try to have a daily bowel movement! Your medications will work better and you’ll feel better overall. Increasing your hydration, fiber, and physical activity can help keep your bowels moving regularly.
  • Address any mental health issues. Sleep, pain, movement, and apathy are all exacerbated by anxiety and depression.
  • Don’t blame everything on your PD; keep in mind that you may have other issues at play that need to be managed too.

“How to avoid burnout in the middle of a pandemic” – Lifehacker.com

The article describes the symptoms of burnout:  “People who are burned out are often detached from others, feel drained and unable to cope, and lack their usual energy. They also often experience physical symptoms such as headaches or stomachaches.”

Some useful suggestions for avoiding burnout are shared, including:

  •     stay connected with others
  •     shift your standards
  •     set boundaries for yourself
  •     schedule time for yourself
  •     change your environment
  •     move your body
  •     list your fears

I liked all the suggestions except for getting a side hustle (which is why I didn’t list it above).

Certainly this article applies to avoiding “caregiver burnout” as well. The full article is copied below.

Robin

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https://vitals.lifehacker.com/how-to-avoid-burnout-in-the-middle-of-a-pandemic-1843322169

How to Avoid Burnout in the Middle of a Pandemic
May 7, 2020, 4:30pm
by Rachel Fairbank
Lifehacker.com

Burnout is defined as a state of emotional, mental and physical exhaustion brought on by prolonged stress. Given the nonstop barrage of stressors these past few months, many of us are probably well on our way to developing burnout, if we aren’t there already.

“Burnout is chronic stress gone awry,” says Sheryl Ziegler, a psychologist and author of the book “Mommy Burnout: How to Reclaim Your Life and Raise Healthier Children in the Process.”

Stages of burnout

The stages of burnout include a honeymoon phase, in which a person devotes extra time and energy to dealing with their stress; followed by mitigation strategies, when a person is crankier than usual but is still trying to juggle everything; followed by chronic stress, a point when people have an even harder time coping and often find ways to detach themselves from others; and finally, by full-blown burnout.

If these stages sound familiar, well, at least you’re not alone. As a society, we seem to be on a path to burnout together. We started in those ambitious first few weeks with big plans: We were going to learn how to bake and knit! After a few weeks of trying to juggle quarantine and work from home and homeschooling and job loss. Now we all seem to be stuck in a phase of chronic stress, either lashing out at the people around us or detaching from the world at large.

“A lot of people are in the second and third stages right now,” Ziegler says. “We are all here.”

That said, there are strategies that we can employ, even in an era of physical distancing and omnipresent fears about our health and safety. These are some of Ziegler’s recommendations for avoiding burnout during a pandemic.

Know the signs of burnout

“Knowing the signs of burnout are really important,” Ziegler says. What stage you might be in will vary, and it’ll look a little bit different for everyone. People who are burned out are often detached from others, feel drained and unable to cope, and lack their usual energy. They also often experience physical symptoms such as headaches or stomachaches.

As Ziegler points out, it’s normal to be stressed and anxious, given everything that is going on. But just because this stress is understandable doesn’t mean we can’t find ways to cope.

Stay connected with others

We may have to practice physical distancing, but that doesn’t mean we can’t be creative about staying connected with others. When it comes to preventing burnout, strong social connections are key.

As Ziegler suggests, in addition to friends and families, lean on online communities that might share some of your concerns. Whatever your situation is, whatever your struggles are, there are people out there who can relate. Make sure to prioritize these connections, as they will help buffer you from burnout.

Shift your standards

It is okay to cut down on the number of hours of school each day or to say no to extra job duties at work. As Ziegler points out, as much as we want to do everything, there just aren’t enough hours in the day. It’s important to be selective about what we take on as well as practical about what we can accomplish, given our constraints.

Set boundaries for yourself

Boundaries are really important, especially in these times. Boundaries can help make your workload and home life a little bit more manageable. It’s okay to say no to things, it’s okay to adjust your expectations, and it’s okay to prioritize what’s most important.

Schedule time for yourself

If we put a meeting on our calendars, we do everything we can to make sure we show up to it. Caring for yourself, in whatever form that takes, is just as important.

“Every day, schedule time for yourself,” Ziegler says. “When we are under stress, we don’t tend to squeeze in healthy things for ourselves.”

So carve out a time for yourself. Put it on your calendar and give that time as much priority as a work responsibility. Your mental health and wellbeing is important.

Have a change of environment

Even small changes of environment can help keep us from feeling overwhelmed. This could be as simple as moving from the living room to kitchen or going for a short walk around the block. Given that we are all at home all the time now, a small change of environment will go a long way toward helping us feel mentally refreshed.

Move your body

As Ziegler points out, there’s a big connection between staying active and maintaining good mental health.

“People have to remember working out is good for your mental thoughts,” Ziegler says. As we are a lot more sedentary than usual, moving can help us stave off some of the effects of abrupt changes in our routines.

Even if you only have ten minutes, it’s worth fitting in a few calisthenics or a quick walk.

Practice mindfulness with your diet

Being at home all day while stressed means a lot more snacking and a lot more unhealthy foods. Unfortunately, although in the short term, reaching for a bag of chips or a carton of ice cream feels good, when it comes to balancing stress, these snacks hurt more than they help. Being mindful about what you are eating will help in the long run.

Power naps are rejuvenating

If you have twenty minutes, consider taking a power nap to boost your energy and productivity. Find a quiet spot, set the alarm and do your best to relax. If it’s hard, Ziegler points out that power napping is something that gets easier with practice.

Early afternoon, when your concentration and ability to focus is suffering, is a good time for a power nap. Twenty minutes is the sweet spot, as 30-60 minutes can leave you feeling more tired than when you fell asleep. Of course, if you’ve got 90 minutes for a full nap, that also works, but that’s harder to carve out of your schedule.

Notice your words

Words have a way of becoming reality. “We have to notice our words,” Ziegler says. Allow yourself to vent, allow yourself to release all your fears and worries, but then find a way to pivot and channel your fears and worries into something productive.

A side hustle can help you feel in control

If you are worried about your job security—or if you have been laid off—developing a side hustle can be a productive way to pick up new skills while also giving you a way to regain control over your situation.

Now is the time to think about what other skills you have you can use to your advantage. If nothing else, this will help you regain a sense of purpose, which is key to weathering periods of potential burnout.

List your fears

There are so many fears and anxieties in the world right now, and for good reason. Instead of bottling up them all up, Ziegler suggests listing them all out and then—and this is the key part—coming up with strategies for how you would cope if the worst happened.

“Give yourself your moment,” Ziegler says. “Then, stop, and make a plan around it.”

Are you afraid of losing your job? Not being able to pay rent? Getting sick and needing someone to care for your children? Name these fears, then start making plans. Just the act of thinking through them will help your regain a sense of perspective and control.

Right now, the world is a scary and stressful place. There is no avoiding it. However, even in the middle of all these worries and anxieties, there are still actions we can take to help mitigate the worst effects. Adjust your expectations, carve out time for yourself and do whatever is in your power to preserve your sanity for the long run. Because it’s going to be a long run.

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Rachel Fairbank is a freelance science writer based in Texas. When she is not writing, she can be found spending time with her family, or at her local boxing gym.

“Freezing of Gait: why and how?” – Lecture notes

A neurologist spoke on “freezing of gait” (FOG) at the early-April Insight 2020 conference. FOG occurs when an individual finds that his/her feet “stick” to the floor or shuffle forward in short, unbalanced steps, while they are trying to walk forward. FOG can make it difficult to get around and often precipitates falls. The lecture is a rather technical explanation of how FOG occurs. FOG is present in Parkinson’s Disease (PD) and all of the atypical parkinsonism disorders.

Insight 2020 was the largest online conference for people with PD, their caregivers, and those who work with the PD community. Lauren Stroshane from Stanford Parkinson’s Community Outreach attended the virtual conference and took notes on some of the talks that seemed most interesting. Copied below are her notes from a talk by neurologist Dr. Aasef Shaikh from the Cleveland Medical Center on the topic of FOG.

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Freezing of gait: why and how?
Speaker: Dr. Aasef G. Shaikh, Assistant Professor of Neurology at Cleveland Medical Center
Insight into Parkinson’s Conference, April 2, 2020
Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Freezing of gait (FOG) occurs when an individual – most often, someone with Parkinson’s Disease (PD) – finds that their feet “stick” to the floor or shuffle forward in short, unbalanced steps, while they are trying to walk forward. Many with PD will experience some degree of FOG over the course of the illness; it can make it very difficult to get around, and often precipitates falls.

FOG is a context-dependent phenomenon: it doesn’t happen in every situation. Scenarios that commonly trigger FOG include:

  • Walking in a narrow hallway
  • Going in and out of a doorway or threshold where the flooring changes
  • Walking in a busy room with many people around, such as a grocery store

What is the common element in all these scenarios that leads to FOG in those with PD? It is not just a motor issue. Gait and balance in PD involve multiple systems. 

Action and perception are closely linked; if you perform a repetitive physical task and you perceive that you did it well, such as taking a step forward, then your brain interprets this as successful and repeats it. There seems to be a mismatch in PD between the perception of walking versus the action of walking. Postural changes and muscle rigidity often alter one’s center of gravity and ability to maintain normal balance; these also play into the likelihood of falls and freezing.

Visual and spatial processing difficulties are also common in PD and contribute to FOG and falls. If your brain is struggling to determine whether a dark shape at the end of the hall is a shadow, a table, or a dog, this can trigger freezing. Changes in depth perception, blurred vision, and double vision can occur in PD as well and are called binocular disparity. Tiny eye movements called saccades are normal for our regular visual processing; in PD, these saccades are often abnormal, making it more difficult for those with PD to scan their visual environment. Interestingly, those with Deep Brain Stimulation (DBS) implants seem to have improved eye movements compared with those who do not have DBS.

Putting all these factors together, as a person with PD is walking forward in their environment, impaired visuospatial processing and visual problems make it difficult to get a correct read on their surroundings, while motor issues and impaired ability to perceive their own movements make it difficult to know where in space their own body is. This mismatch seems to confuse the brain, leading to FOG as the brain struggles to figure out what to do.

“Neuropsychological symptoms of Parkinson’s disease” – lecture notes

A neuropsychologist spoke on neuropsychological symptoms of Parkinson’s Disease (PD) at the early-April Insight 2020 conference. Since these neuropsychological symptoms — cognitive impairment, attention, visuospatial processing, executive functioning, apathy, and disinhibition — have relevance for the atypical parkinsonism community, we are sharing the lecture notes here.

Insight 2020 was the largest online conference for people with PD, their caregivers, and those who work with the PD community. Lauren Stroshane from Stanford Parkinson’s Community Outreach attended the virtual conference and took notes on some of the talks that seemed most interesting. Copied below are her notes from a talk by Australian neuropsychologist Dr. Luke Smith.

This excerpt is worth highlighting as we see this same issue in the atypical parkinsonism conditions:

People with PD sometimes describe themselves as having a memory problem. Yet, in the speaker’s experience, many of those people who undergo cognitive testing are actually shown to have a learning problem, not a memory problem. Memory has 3 stages: learning (taking in new information), storage (like a computer; keeping the information), and remembering (retrieving the info when you need it).

This is a good excerpt too as lack of insight is very common in the atypical parkinsonism conditions, especially Lewy body dementia and progressive supranuclear palsy:

Executive functioning is best described as the most complicated aspects of our cognitive function: planning, anticipating the outcome of actions, problem-solving, controlling instinctive responses to stimuli, and having insight into one’s own condition. It is another aspect of cognition that can be impacted by PD. Sometimes the loved ones of those with PD may feel that the affected person is in denial of their condition – but it may just be a lack of insight due to the disease.

Robin

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Neuropsychological symptoms of Parkinson’s disease  
Speaker: Dr. Luke Smith, Clinical Neuropsychologist
Insight into Parkinson’s Conference, April 2, 2020
Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Dr. Luke Smith, is a clinical neuropsychologist in Melbourne. He discussed changes in cognition, social cognition, behavior and personality that can occur in those with PD, as well as support options.

Dr. Smith sometimes finds it strange that PD is classified as a movement disorder, since the disease affects far more than just our movement. The basal ganglia, which is the area of the brain most affected by PD, was originally thought to be responsible only for movement. We now know that this part of the brain also greatly impacts how we think, feel, and behave. The frontal lobe and parietal lobes of the brain are also affected in PD; these areas impact “executive” or decision-making function (frontal lobe), and visual processing (parietal lobe).

Minor changes in thinking or memory are called mild cognitive impairment (MCI). This may show up on cognitive testing, but likely is not impacting the individual’s day-to-day life. Those with PD are at higher risk of having MCI.

Parkinson’s disease dementia (PDD) occurs if MCI has progressed into more severe problems in memory or thinking, impacting the person’s ability to perform normal functions like driving a car, managing finances, or cook a meal. Looking at the prevalence of these issues in PD longitudinally, most research suggests that, for those who have lived with PD for ten years or more, about half would probably meet criteria to be diagnosed with PDD.

Changes that can occur in thinking: 

The amount of time it takes for a person with PD to process information often increases. Keeping up with a fast conversation or a rapid-paced movie can become more difficult; it may feel like the world is moving faster around you. Changes in attention and concentration may also occur. Attention span is defined as how much information you can take in at one time; the average amount of information a normal adult can absorb is about 5-7 bits of information at one time without repetition of the information. For those with PD, it may be only 3 bits of information that they can take in at once. Divided attention – often called “multitasking – becomes more difficult for those with PD as well. For some people, working memory – the ability to keep multiple small amounts of new information in your mind at once – is affected as well, manifesting sometimes as difficulty with mental arithmetic.

Visuospatial processing tends to be affected in those with PD. This means the ability to understand visual stimuli. Those who have a dog know that their dominant sense is that of smell; dogs are highly driven by their noses. Similarly, most humans’ dominant sense is our sight. Our eyes take in the raw data and our brain makes sense of that data. For those with PD, the way they interpret that data is no longer working normally. This can manifest, for instance, in difficulty putting together IKEA furniture, or problems for those who make their living as architects, contractors, artists, designers, or others in highly visual fields.

People with PD sometimes describe themselves as having a memory problem. Yet, in the speaker’s experience, many of those people who undergo cognitive testing are actually shown to have a learning problem, not a memory problem.

Memory has 3 stages:

  1. Learning – taking in new information 
  2. Storage – like a computer, keeping the information
  3. Remembering – being able to retrieve that information when you need it

For those in early to moderate PD, often, their memory is fine. It may be that they aren’t taking in as much information to be encoded in their memory storage. When someone has a true memory problem, it is step 3 – remembering the information off the top of your head – that is the issue. For people with PD, receiving a prompt or hint can help recognize the memory, allowing them to retrieve it. This is called recognition memory, and is usually still quite strong in those with PD.

By contrast, Alzheimer’s disease (AD) is another common neurodegenerative disease that affects memory quite differently than PD. Those with AD suffer from deterioration of their long-term memory: who they are, where they live, who their family is. For those with PD, memory often becomes less efficient, but long-term memory remains intact.

Executive functioning is best described as the most complicated aspects of our cognitive function: planning, anticipating the outcome of actions, problem-solving, controlling instinctive responses to stimuli, and having insight into one’s own condition. It is another aspect of cognition that can be impacted by PD. Sometimes the loved ones of those with PD may feel that the affected person is in denial of their condition – but it may just be a lack of insight due to the disease.

Some of those with PD may have trouble recognizing certain facial expressions in others, particularly unhappy or angry expressions. This ability to recognize social cues is called social cognition. Figuring out an idea of why another person may be feeling a certain way is called theory of mind.

Additionally, those with PD may experience something called pseudobulbar affect – the tendency to show excessive emotion in response to outside stimuli, regardless of how they actually feel inside. An example may be crying for no reason, or laughing uncontrollably at inappropriate times.

Changes in behavior and personality can also occur in PD, since these aspects of oneself are controlled in the frontal lobes. Apathy is the most common change that happens in those with PD, and can be quite frustrating for caregivers or family who are trying to motivate the individual to do things they formerly enjoyed. Impulsivity, also called disinhibition, may start to do things without considering the consequences. An example may be rudely commenting on someone’s appearance, when in the past, they would never have done so. 

If you or a loved one are noticing some of these issues, the first thing to do is seek help with a medical professional.

What to do if you notice cognitive changes?

Neuropsychologists, like the speaker himself, are good at working with families to assess cognitive abilities and make recommendations and can administer a standard battery of tests, typically over 3-4 hours. But a primary care doctor or neurologist can also be a good place to start, likely with a cognitive screening test that might take only 20 minutes or so. Among the various cognitive tests out there, the Montreal Cognitive Assessment (MoCA) does a better job of screening for executive dysfunction and other issues specifically seen in PD than some of the other screening tests that may be available, such as the Mini-Mental State Exam (MMSE), which the speaker does not recommend in PD. Occupational therapists, speech therapists, and nurses can be helpful resources as well, for evaluating cognitive changes.

It’s important to consider where you are getting your information; internet searches will turn up lots of different websites that may or may not have accurate information. Instead, contact your local PD association, which will have up-to-date information and resources for these issues. 

There is some good news: In the last 5 years, we now have evidence that cognitive rehabilitation strategies can help when someone experiences memory or thinking issues. Cognitive rehabilitation involves learning and using new memory and thinking techniques and strategies. They do not necessarily improve cognition per se, but they do improve coping abilities and improve a person’s ability to function day-to-day.