Five tools for mindfulness for caregivers (The Caregiver Space)

Today’s blog post from “The Caregiver Space” (thecaregiverspace.org) gives a short description of five tools for mindfulness for caregivers. The online apps are:

1- Curable: for chronic pain; curablehealth.com

2- Universal Breathing: based on the ancient yogic discipline; saagara.com/apps/breathing/universal-breathing-pranayama

3- Journey: journaling; 2appstudio.com/journey

4- WildMind: 200 guided meditation sessions based on ancient Buddhist practices; wildmind.org

5- Aura: set aside three minutes daily for guided meditation; aurahealth.io

The post also make some interesting points about mindfulness being different from meditation, and mindfulness not being “selfish.”

Robin

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thecaregiverspace.org/5-tools-for-mindfulness-for-caregivers/

5 Tools for Mindfulness for Caregivers
by Maricel Tabalba (Guest Author)
The Caregiver Space
Jan 31, 2018

Recent estimates show that 80 percent of caregivers in the US are not healthcare professionals. Given the both physically and emotionally taxing nature of the work, plus the fact that most caregivers aren’t professionally trained, it should come as no surprise that many caregivers suffer from anxiety. In fact, so many caregivers complain of anxiety symptoms that “caregiver stress” is now a medically recognized term.

The first thing every caregiver should understand is that it’s just as important to take care of themselves as it is to take care of their patients. One free, easy, and effective way caregivers can better cope with the stresses of work is to schedule a few moments of mindfulness practice every day.

Mindfulness: It’s Not Just Meditation
Before we even suggest how to practice mindfulness, we should clear up a common misconception about mindfulness. When people hear the word “mindfulness” they often assume it’s synonymous with meditation. But while meditation can certainly be considered a mindfulness practice, mindfulness encompasses a wide variety of exercises designed to help people better manage stress. Besides meditation, a few common mindfulness practices include journaling, music therapy, yoga, talk therapy, and Tai Chi. As long as the technique helps bring you into the present moment, it could be considered a form of mindfulness.

Daily mindfulness practice helps caregivers perform their duties without becoming overburdened with stress. Luckily, there are tons of convenient apps available to help caregivers find their inner Zen through their smartphone. Below, we’ll go over five excellent apps all caregivers can use to start their journey towards inner calm.

Curable
People who struggle with chronic pain conditions must download the Curable app. Created by a team of people who overcame their own challenges with with pain, Curable uses the latest research in mindbody healing to help users overcome conditions such as low back pain, migraine headaches, and irritable bowel syndrome.

After downloading Curable onto your Apple or Android product, you get access to an artificial intelligent “pain coach” named Clara. Users just have to type in their pain symptoms and Clara will put together a personalized mindfulness practice. Simply follow Clara’s lesson plans everyday and you may start to feel better within around a month.

Curable’s developers say 70 percent of users experience some relief from their pain symptoms within 30 days of first starting to use the app. Even if you do not suffer from chronic pain, caregivers can still benefit from Curable’s exercises and can practice a more mindful way of living.

Universal Breathing
For those who aren’t aware, pranayama is the ancient yogic discipline of controlling the breath to achieve a greater state mental clarity. Many yogis use pranayama exercises to help them enter deeper states of meditation and quickly silence mental chatter. Thanks to the Universal Breathing app, now you don’t need to travel to an ashram to learn basic pranayama exercises to help you through your day. People who use the Universal Breathing app have access to tons of information on pranayama technique, breathing courses, guided sessions, and a progress journal. Find out what exercises work best for you and read about pranayama theory on this fascinating app.

Today, the Universal Breathing app is available for free in the App Store, Google Play, and on the Nook.

Journey
If you’re not into guided meditations or breathing exercises, perhaps you’d prefer a mindfulness practice like journaling. Before you put down journaling as “not real mindfulness,” you should know that many scientific studies prove that journaling helps boost the immune system and relieves depression.

Probably the easiest way to get into the journaling habit in our digital age is to download the Journey app. The Journey app allows you to write and store your journal entries in the Cloud and add photos from your albums. You can even share moments with friends and family across multiple platforms. The Journey app is available on Apple, Android, and Microsoft products.

WildMind Buddhist Meditation
WildMind’s Bodhi app has more than 200 guided meditation sessions based on ancient Buddhist practices. Although most of these meditations are indebted to Buddhist teachings, you don’t have to know anything about Buddhist traditions to get a great deal out of this app. The two main practices encouraged in these meditation sessions include basic breath meditation and loving-kindness meditation (also known as metta practice). Most of these meditation sessions last between 15 to 20 minutes. WildMind’s app also includes instructions on practicing walking meditation and tips to improve your meditation posture.

Aura
Aura is an award-winning mindfulness app tailored for people who live fast-paced lifestyles. All the Aura app asks is that you set aside three minutes every day for a guided meditation. That’s it. If you feel like it, you could add a few of Aura’s “micro-meditations” throughout your day, each of which lasts around 30 seconds. There are also relaxing forest soundscapes on Aura’s app to help you get through particularly stressful days.

All of your meditations are tailored to your specific needs by AI technology and Aura keeps tabs on your mood so you can see whether or not certain meditations are working for you. Aura is available on Android and iOS devices.

Mindfulness Practice: Every Caregiver’s First Priority
Caregivers have a habit of neglecting their own wellbeing for their patients’ sakes. Some caregivers even believe taking a few minutes out of the day to practice mindfulness is “selfish.” Nothing could be further from the truth. In fact, taking a few minutes to practice mindfulness everyday will improve the quality of care you can give to your patient. It should be mandatory that all caregivers practice some form of mindfulness today, especially with all of these great apps literally at our fingertips.

Maricel Tabalba is a freelance writer working with Curable Health, who is interested in writing about natural and holistic remedies, smart gadgets, emerging tech trends, and environmentally friendly advice. She earned her Bachelor of Arts in English with a minor in Communication from the University of Illinois at Chicago.

“Caregivers, You Are Loved!” from Chaplain J.E. Hulsey

This was posted to an FTD online support group yesterday. It has been posted many places on Facebook but I haven’t been able to find a good link to share. Here’s a message to caregivers from a chaplain.

Robin
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A share from Chaplain J. E. Hulsey‎ ….
Caregivers, You Are Loved!

To the caregiver hiding in their bathroom, needing peace for just one minute, as the tears roll down their cheeks.

To the caregiver who is so tired they feel likes they can’t function anymore and would do anything to lay down and get the rest they need…

To the caregiver sitting in their car, alone, stuffing food in their face because they don’t want anyone else to see or know they eats that stuff…

To the caregiver crying on the couch after they yelled at their loved one for something little and is now feeling guilty and like they are crap…

To the caregiver that is trying desperately to put those old jeans on because all they really want is to look in the mirror and feel good about themselves…

To the caregiver that doesn’t want to leave the house because life is just too much to handle right now…

To the caregiver that is calling out for pizza again because dinner just didn’t happen the way they wanted it to…

To the caregiver that feels alone, whether in a room by themselves or standing in a crowd…

You are enough.

You are important.

You are worthy.

This is a phase of life for us. This is a really really hard, challenging, crazy phase of life.

In the end it will all be worth it. But for now it’s hard. And it’s hard for so many of us in many different ways. We don’t always talk about it, but it’s hard and it’s not just you. Know you are not alone. Know your are loved.

You are enough.

You are doing your best.

Those loving eyes that look up at you – they think you are perfect. They think you are more than enough.

Those feeble hands that reach out to hold you – they think you are the strongest. They think you can conquer the world.

Those mouths eating the food you gave them – they think that you are the best because their bellies are full.

Those forgetful loving hearts that reach out to touch yours – they don’t want anything more. They just want you to be there for them.

Because you are enough. You are more than enough, caregiver.

You. Are. Amazing.

Thank you for giving, for caring and for loving!

“I’VE FELT SO MUCH AND NOW I’M NUMB”

In Donna Thomson’s blog “The Caregivers’ Living Room,” she posts about caregivers experiencing constant trauma and drama, such that they have become numb.  Donna says: “Hyper-vigilance in order to avoid dangerous and life-threatening consequences of an illness or disability can lead to ‘shutting down’ one’s emotions.”

A trauma response therapist recommends two strategies so that “burnt out caregivers [can] get their feelings back… The first is called ‘interoception’ – it simply means being aware of your body in a purposeful way, the same as in yoga, mindfulness meditation or Tai Chi. The idea is to become more acutely aware of how the sensations in our bodies influence the thoughts in our heads. The second strategy … is reaching out for support – to a medical professional, family, friends, or online.”

Read more.


http://www.donnathomson.com/2018/01/ive-felt-so-much-and-now-im-numb.html

Today I was speaking with another caregiver. We were talking about trauma.

My friend’s Mom has been progressively losing skills due to a degenerative disease. It wasn’t just the disappearing abilities that hurt my friend, it was the numbness she felt herself. Here’s how she described what happened yesterday. “Mom’s been using a power wheelchair to get to the dining room where she lives in assisted living. But recently, she’s become unsafe driving it – she’s running into walls and people. So yesterday, I took it away. I did it mechanically, I just felt numb. This was a BIG deal and I didn’t feel anything. But I went home and I realized that I should be hurting for Mom. I hate this. I hate being numb. I LOVE my Mom.”

I’ve experienced numbness in my caregiving life and I’m betting that most other long-term carers of loved ones with chronic disease or disability have experienced it too. I decided to ask my niece Christina Opolko about this symptom of stress and exhaustion. Christina is a licensed drama therapist and is highly trained in trauma response therapy.  Here’s what she said:

“I think as traumatic moments and major traumas accumulate, they become something called complex trauma. Over time, when the body goes into overwhelm, some people train themselves to override their feelings (sometimes called ‘functional freeze’) in order to keep functioning. This is a symptom of complex trauma. Over time, this can lead to loss of identity, inability to claim space beyond the caregiving role, and a near constant anxiety regarding self and other, without a clear root cause….the cause has been cumulative.

So I think the cause of feeling numb is complex trauma, overriding one’s emotions and, I would add, forced accommodation. In trauma, if you are forced to accommodate constantly to someone’s needs, there is a needs imbalance, and over time, it too can feel like trauma. The body cannot distinguish trauma from shutting your needs down to serve another under stressful circumstances. The two feel the same. The neurophysiological response is the same in both extreme stress and in suppressing your needs in order to attend another.”

I might add one more cause: hyper-vigilance over a long period of time. Hyper-vigilance in order to avoid dangerous and life-threatening consequences of an illness or disability can lead to ‘shutting down’ one’s emotions, in my experience. Being on high alert for the sake of someone’s life and limb is a good reason to use whatever coping mechanisms are at hand, even emotional numbing.

So, how can burnt out caregivers get their feelings back? Christina advises two strategies to begin. The first is called ‘interoception’ – it simply means being aware of your body in a purposeful way, the same as in yoga, mindfulness meditation or Tai Chi. The idea is to become more acutely aware of how the sensations in our bodies influence the thoughts in our heads. The second strategy that Christina is reaching out for support – to a medical professional, family, friends, or online. Seeking support may seem like a trite or even useless suggestion to caregivers whose emotional range has flatlined. “What’s the point of talking to anyone?” could well be a symptom of being overwhelmed by a sense of futility.

Is emotional numbing a good coping mechanism? Maybe sometimes, it can be. But mostly (in my experience), it is better to cry, much better. And my worry that if I started to cry, I would never stop was unfounded. I cried, yes, but then I stopped and I carried on. We all do. I reclaimed my feelings by asking myself, “What do I feel right now? Where are my muscles tight? Where are they relaxed? How does this orange taste in my mouth? Which muscles move when I swallow?” And I reached out to my family, my friends and my fellow caregivers. For me, nature was and is a great healer, too. Being in my garden, walking in the woods, even standing at the window looking at the rain all heal my heart and soul making me MORE emotional, ready to sense my body and especially the bodies and emotions of those I love.

SHARE program available to some caregivers in the Bay Area

This blog post will be of interest to those living in the San Francisco Bay Area, who are caring for those age 60 or older without dementia.

Northern California-based Family Caregiver Alliance (caregiver.org) is
organizing a free educational program called SHARE.

Within Brain Support Network, three types of caregivers are eligible —
* PSP caregivers not dealing with dementia
* CBD caregivers not dealing with dementia
* all MSA caregivers

The care receiver (person with a neurological diagnosis) must:
–  Be over age 60
–  Be living at home in the San Francisco Bay Area
–  Have intact cognitive abilities – NO dementia
–  Not be in the terminal stage of their disease

The caregiver will receive:
–  6 in-person home visits
–  Learn effective communication skills
–  Learn to reduce stress
–  Learn to promote health
–  Learn about long-term care management (make the most out of today
while planning for tomorrow)

If this is of interest, contact Michelle Venegas (415-434-3388, x323,

[email protected]) at Family Caregiver Alliance.

“9 Ways to Make Caregiving Easier” (AARP Family Caregiving)

This blog post from AARP Family Caregiving shares nine ways to make caregiving easier:

* Don’t suffer in silence.
* Do stay organized.
* Don’t feel guilty if you don’t live nearby.
* Do join a support group.
* Don’t forego sleep.
* Do find time for yourself.
* Don’t neglect your family.
* Do learn your options.
* Don’t overlook the benefits.

Read the full blog post below.

Robin


careconnection.aarp.org/en/pages/tips-and-articles/caregivingessentials/9-ways-to-make-caregiving-easier.html

9 Ways to Make Caregiving Easier
Updated Jan 08, 2018
Care Connection, part of AARP Family Caregiving

* Don’t suffer in silence. If you feel you’re taking on more than you can manage, let your siblings and other family members know. No one can read your mind and others may not realize that you’re overwhelmed or even know how much you’re doing. Tell them — calmly, without accusation or blame. Spell out what they can do: grocery shopping, driving to medical appointments, covering your carpool day, or even treating you to dinner and a movie.

* Do stay organized. Create a master contact list (names, phone numbers, emails) of nearby friends, neighbors, doctors, faith leaders, housing managers or apartment front-desk staff, and the local pharmacist, who can be reached in the event of an emergency. Give this to all family members and post a copy where everyone in the house can see it.

* Don’t feel guilty if you don’t live nearby. Regret weighs heavily on long-distance caregivers, who often shift their schedules, miss work, spend huge amounts of money and time on travel, plus hours talking to doctors and financial experts. This is not your fault. Hire a geriatric care manager you trust to help coordinate local care services; you can find someone through the National Association of Professional Geriatric Care Managers. Additionally, there are several services that can help alert you if your parent isn’t active during the day. Your local post office may have a free Carrier Alert program, where letter carriers will notify you or a designated agency when mail hasn’t been picked up. Many local agencies telephone isolated people daily to check on their well being. New technology can alert you if your parent hasn’t been moving around the house.

* Do join a support group. Online or in your community. Every caregiver needs a talking buddy to listen while she vents. Even better are those who have been there, done that. Support groups can give you guidance, tips and solace. So can friends and co-workers who have been down this road. So if you need help, or someone to hug, ask.

* Don’t forego sleep. No one — not even you — can function when sleep deprived. Sleep loss cripples your ability to concentrate, solve problems and remember. Try to get eight hours a night. Nap when the person you’re caring for does. Ask someone to come over for a few hours or take Mom to a respite care program at a center for an afternoon. She may enjoy it. And you’ll be much better.

* Do find time for yourself. Join a book club or other activity that brings you joy. Even if you’ve only read the prologue, keeping up with the activities and relationships that stimulate your mind and soul is essential. And remember to exercise. It not only keeps the body in shape, it keeps the brain sharp, too. If you can’t get to the gym, buy a DVD of a yoga or exercise class. Ask a friend to pinch hit for you while you walk or jog for 30 minutes. Find ways to make it happen.

* Don’t neglect your family. Yes, your aging parent needs you, but so does your spouse. Consider hiring a night caregiver a few times a month so you can go for dinner and a movie or better yet, an overnight vacation. Explain the situation to your children so they understand your schedule and try to find special time to be with them and your friends.

* Do learn your options. If your caregiving responsibilities become too much to handle with your job, consider adjusting your work schedule if possible. Employees covered under the federal Family and Medical Leave Act may be able to take up to 12 weeks of unpaid leave per year to care for relatives. Check with HR about options for leave or flextime, job-sharing or telecommute policies that could make your life easier.

* Don’t overlook the benefits. Though caregiving has myriad challenges, it also offers many rewards: Most caregivers agree that the experience strengthened their relationship with a parent. It often brings both caregiver and parent to a new level of understanding in their relationship even if it was a strained connection over the years. You know you’re doing the right thing and you have the opportunity to give back to a parent who gave so much to you. Take a few moments each day to reflect on the positive aspects of being a caregiver.

 

Talk by Local Lewy Body Dementia Support Group Member on Coping

Bob Wolf is a local support group member.  His wife Carol has Lewy body dementia (LBD).  Bob wrote a wonderful, slim book called “Honey, I Sold the Red Cadillac” about his journey with LBD. He generously donated a copy to our group and it’s been circulating. You can also purchase your own copy!

Bob spoke at the Parkinson’s support group meeting in Walnut Creek last Saturday. His talk (like his book) focused on how he learned to enter Carol’s reality.

Brain Support Network volunteer Denise Dagan attended the talk and shared her notes.

Robin

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Notes by Denise Dagan, Brain Support Network Volunteer

Speaker: Bob Wolf
Author of “Honey, I Sold the Red Cadillac: Learning to Cope with Lewy Body Dementia”
January 20, 2018
Parkinson’s Support Group Meeting, Walnut Creek

Bob calls himself a recovering engineer. He thinks very logically and practically, so when his wife, Carol, started hallucinating he tried to talk her out of it. His book tells their story and shares how he learned it is not possible to talk someone with dementia out of their delusions or hallucinations.

He began my explaining that both Parkinson’s and Lewy Body Dementia (LBD) are caused by the loss of dopamine in the brain, but in LBD the areas of the brain affected is more diffuse or extensive, resulting in hallucinations years earlier than someone with Parkinson’s disease may experience them.

Bob learned an interesting thing from a physical therapist (PT) who tested Carol. The PT asked Carol how many steps she thought it would take her to cross the room. She guessed 12, but it took several more. The PT explained that walking is a rather automatic action controlled by the brain in an area affected by dopamine depletion. When you have Parkinson’s disease and you walk without thinking about it you don’t walk well. When you think about it, you move control over your walking to a different part of the brain, generally not affected by dopamine loss so, if you have Parkinson’s disease, you will walk better.

Bob shared the story of when Carol’s initial symptoms presented themselves and his initial response to her hallucinations by trying to talk her out of believing her own eyes. It didn’t work. He learned he needed to work within the framework of her reality, going so far as to schedule their shower times around Carol’s belief that the local little league team was using Bob and Carol’s shower after practice.

This is the story that determined the title of his book. It was the first experience that taught Bob he needed to get into Carol’s reality. One day, looking out the window, Carol began complaining about some teenagers causing damage to Bob and Carol’s red Cadillac. To begin with, Bob and Carol don’t own a red Cadillac, and they live at Rossmoor Senior Living where there are no teenagers. He tried telling her they don’t own a Cadillac and there are no teenagers. She persisted day after day when looking out the same window that the boys were causing this or that damage to their car. One day Bob said, “Honey, I sold the red Cadillac.” She asked, “How much did you get for it?” He was a bit surprised and said, “Blue Book.” She never brought up the red Cadillac again.

Before Bob learned he had to work within Carol’s reality, he once rushed Carol to the emergency room because Carol believed her mother was ill. Bob knew Carol’s mother was deceased and wouldn’t be at the ER, but he wanted to show Carol what he said was true and Carol was mistaken. It only resulted in Carol being upset. After Bob learned to work within Carol’s reality, when Carol believed her mother was injured and at the ER, Bob went into another room and pretended to call the hospital. He told Carol her mother wasn’t badly hurt and had been sent home. He then distracted her with a pleasant activity.

After Carol had several falls Bob hired a caregiver for Tuesdays, when his bridge club met. Gradually, he added the caregiver more and more days in the week. Eventually, their daughter asked what happens to Carol if something happens to Bob, even a bad cold or the flu? He realized it was time to find Carol residential care. The family looked at several places and still picked one that didn’t serve her needs. They moved Carol to where she lives now and she’s doing very well.

Bob had a difficult time dealing with the fact that he was retired with only one job, to care for his wife, and he couldn’t do it. He saw a counselor who suggested writing down his experiences and his feelings. He did, but he realized he didn’t need a counselor for that, so he kept writing and joined a caregiver support group. At the support group he realized his stories could help others learning to care for someone with LBD, so he published his writings in “Honey, I Sold the Red Cadillac.”

Question & Answer

Q. Does Carol still know you?
A. Most of the time, although sometimes she believes Bob is her father. After all, he has white hair and makes all the decisions.

One day the activity was a travel video of Iceland. In one scene, a girl was putting on ice skates when the activity leader asked the group, “What is that girl doing?” Carol said, “Getting ready to fall down.” So, you see? Sometimes she really knows what’s going on and still has a great sense of humor.

Bob’s best advice is to remember the flight attendant’s instructions, “Put your own mask on first, then help the person next to you.” If you can’t breathe, you can’t help anyone. Take care of your own needs first, then look after your loved one.

Q. There was a comment that levodopa increases hallucinations, so stop or cut back on levodopa.
A. Bob pointed out that the anti-psychotic Carol takes makes her Parkinson’s symptoms worse, so they need one medication to help the side-effects of the other, and vice-versa.

Q. Another man asked about the commercials he’s been seeing on TV about a man with Parkinson’s having hallucinations. He wanted to know what they are selling.
A. Someone from the back of the room explained Nuplazid is the only FDA approved medication specifically designed for Parkinson’s/LBD hallucinations. This man’s wife is taking it and he says it is very expensive.

 

Video of man with PSP with messages to recently-diagnosed people

This morning, I came across this post on an online PSP support group and received permission to share it here.
Robin

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From Bill Gibbons
Lindon, UT
I was diagnosed with PSP five years ago. I recorded a video of friendship and greeting, especially intended for those of you with the disease, and with a special sense of regard and best wishes for those recently diagnosed.

youtu.be/0Y-nejkZLl8

Anxiety, Depression, and Apathy (in Parkinson’s) – lecture notes

Brain Support Network has another volunteer who is attending lecture, reading articles, and sharing notes. His name is Adrian Quintero. He’s also a BSN part-time employee, helping families with brain donation arrangements. (He would be happy to help your family too!)

Last Saturday, he attended a Parkinson’s support group meeting in Berkeley. The speaker was Dr. Andreea Seritan, a geriatric psychiatrist from UCSF. Her talk was about anxiety, depression, and apathy in Parkinson’s. While some of the talk was specific to Parkinson’s, most of the treatment of these two symptoms applies to those in the Brain Support Network community (Lewy body dementia, multiple system atrophy, progressive supranuclear palsy, and corticobasal degeneration).

Here are Adrian’s notes….


Notes by Adrian Quintero, Brain Support Network volunteer

Speaker: Andreea Seritan, MD, geriatric psychiatrist, UCSF Movement Disorder and Neuromodulation Center
Title of Talk: Addressing Anxiety and Depression in Parkinson’s Disease
Date: January 20, 2018, PD Active Forum

Parkinson’s Disease (PD) is a neuropsychiatric disease. Many doctors don’t realize this, and think it just affects motor skills, overlooking the psychiatric component.

Anxiety and Depression are among the most common symptoms with PD, and are important to treat as part of the disease. There is often a stigma associated with seeing a mental health provider that can make treatment of both more difficult.

Very common in people with PD. The literature on it says it’s about 40%. For Dr. Seritan’s practice it’s closer to two-thirds of the people she sees. Anxiety can present very differently person to person.

Anxiety can often precede the onset of motor symptoms.

There are physical symptoms associated with anxiety. Dr. Seritan finds people with PD are often very attuned to their bodies and are good at describing physical symptoms. Some more typical physical symptoms of anxiety include rapid heartbeat, shortness of breath, increase of tremor. More atypical symptoms, such as abdominal pain, head pressure, dizziness, may not been seen by doctors as being anxiety related.

“Wearing Off” of medication
Some people experience anxiety during the time period where there is a drop in medication between doses.
Generally happens in the late afternoon, daily, is more predictable than panic attacks that can happen out of the blue.

Generalized Anxiety Disorder
Categorized by “excessive worry” more than 6 months
Is more of a baseline of anxiety that “sits” throughout the day (vs. comes on for a period of time like wearing off)
Some of the diagnostic symptoms can be hard to distinguish from PD, such as: sleep disturbances, muscle tension, easily fatigued, hard to concentrate, restlessness

Panic Disorder
Experiencing panic attacks, which are peaks of anxiety, generally short episodes that reoccur. In between episodes there is worry about having another episode.

Social Anxiety
Performance anxiety is the part of social anxiety that Dr. Seritan sees many PD patients struggling with. Such things as giving presentations, public speaking, can be very difficult for PD patients, as there is often worry about having tremors in front of people. Especially if someone hasn’t shared their diagnosis at work, etc, there can be added stress of a fear of a visible hand tremor.

Depression
Like anxiety, depression is complicated, and experienced differently by each person affected.
In PD patients, it is less common than anxiety, literature showing about 35% of PD patients experiencing depression, and 17% diagnosed with Major Depressive Disorder.
Like anxiety, depression may precede the onset of motor symptoms associated with PD.
When untreated, depression may increase PD symptoms – worsen motor symptoms, cause cognitive deficit. Alcohol and drugs may worsen mood. With depression there is the added risk factor for suicide.

Major Depressive Episode
(5 of the 9 symptoms needed for diagnosis)
-depressed mood, lack of interest (for more than 2 weeks)
-Anhedonia – which is lack of interest in normally pleasurable activities
-Increase or decrease in sleep (again difficult because many PD patients have sleep disturbances)
-Increase or decrease in appetite/ Weight loss or gain
-Feeling guilty or worthless
-Moving slowly (symptom for general population)
-Poor concentration/ memory (people often wonder if dementia is the cause)
-Low energy
-Suicidal thoughts or behavior

Many medical conditions can affect or cause depression, such as:
Thyroid imbalances, strokes, Alzheimer’s, Parkinson’s, post heart surgery or heart attacks (especially in men), chronic pain

Some medications can affect or cause depression, such as:
Some common blood pressure meds, GERD meds, pain meds, sedatives (like Xanax), steroids (like interferon, prednisone), Anticonvulsants (which could be used for tremors)

Apathy
Different from, and less studied, than depression
-not enough energy, feeling “blah”
-20-36% of new onset PD patients
-40-45% overall patients with PD
-lack of drive

Having a schedule and events where others can help hold someone accountable can help (such as Rock Steady Boxing classes, etc.)

Treatment Approaches for Anxiety and Depression
Dr. Seritan likes to start off with the non-pharmaceutical treatments first, which can include:
-exercise (such as Rock Steady Boxing, Dance for PD)
-diet
-good sleep hygiene
-minimize alcohol and drugs (including marijuana). Alcohol can aggravate depression, as well as affect balance, and disturb the sleep/wake cycle.

Other non-pharmaceutical treatments may include:

Gratitude practice
-practicing 3 weeks of journaling where every night you count 5-10 things that you’re grateful for. There is a book called “Thanks” that talks about this practice.
-Such practices have shown to increase sleep and energy, lower depression, and have no side effects!

Self-Efficacy
-Believing in the ability to accomplish goals. People often lose this feeling when they are diagnosed with PD. They may also experience a loss of identity, family role, loss of income, etc.
-Re-adjust goals- Look to strategies that have worked in previous moments of crisis, those strategies will work again
-How we see ourselves is important. Sometimes we may need the help of a mental health professional to act as a mirror.

Psychotherapy
-CBT (Cognitive Behavioral Therapy)- the most well-studied therapy for anxiety and depression.
-MBI (Mindfulness Based Interventions)- paying attention to the present moment non-judgementally. There is increasing studies and evidence as to the effectiveness of such interventions. Can help memory, executive functioning and cognitive functioning.
-MBSR (Mindfulness Based Stress Reduction)- often used in medical settings, there are groups oriented around learning this
-MBCT (Mindfulness Based Cognitive Therapy)- Combination of CBT and MBSR, used at UCSF.

Treatment with Medications
In general, timing of when medications are taken is important.

-Wearing-off Issue- Dr. Seritan suggests working with doctor to adjust timing and dose of medication. If experiencing several times a day, treatment of base anxiety may be needed.
-For PD patients who had anxiety and depression before PD diagnosis, SSRIs and SNRIs can be helpful for treatment.

Benzos
-used for anxiety attacks/ peaks, can help with wearing off anxiety, also used at times for restless legs
-NOT good for Generalized Anxiety Disorder, and shouldn’t be used for insomnia
-Recommends NOT taking daily, as risk for dependence
-Look at risk/benefit analysis of using
-don’t mix with alcohol or sleep-aids
-Xanax has a short half-life and can cause rebound effects. Dr. Seritan prefers medications with a longer half-life
-Some benzos can cause memory problems, and increase risk of fall
-Some can be sedating and are best taken at nighttime

Sleep-Aids
-Sleep disturbance is a major symptom of anxiety, depression, and PD
-Trazadone- may cause grogginess
-Ambien- there is a dose differential for men and women
-Melatonin- natural aide, Dr. Seritan suggests taking 2 hours prior to bedtime. It can be combined with Ambien
-Gabapentin- good for anxiety, sleep, and pain. Have to modify dose so as not to cause sleeping during the day

Social/Performance Anxiety
-Beta blockers can be good used PRN. There are possible side effects of increased depression and fatigue

Apathy treatment
“Activating” antidepressants such as: Buproprion, Duloxetine, Venlafaxine
-Stimulants- Does NOT recommend Ritalin, etc. Instead Dr. Seratin treats with Modafinil or Armodafinil

Deep Brain Stimulation
-DBS is approved for PD to improve motor symptoms. There are surgery risks involved, as well as psychiatric risks. It can increase anxiety and depression, as well as impulsivity. It may decrease anxiety and depression for some people. At SFSU, they have a long evaluative process with the team.

Overall, PD is a stressor on the brain, and medications add additional stress. When treating PD patients, the dose may need to be less, as is true for older adults as well.

Pain Management treatment
-Lots of patients take cannabis for pain. May be evidence for help with insomnia. Dr. Seritan does not recommend cannabis for treatment of mood or anxiety.
-Sometimes tricyclic anti-depressants may be prescribed for pain management.
-Often patients are already on several medications. Can be helpful to see a pain specialist.

Advance Care Directive for Dementia (New York Times)

This recent New York Times (nytimes.com) article is about the idea that the typical advance care directive doesn’t say much about dementia.  A physician recently developed a dementia-specific advance directive, which you can find here:

* Advance Directive for Dementia, dementia-directive.org

Two other resources are referred to in the article —

* The Conversation Project, theconversationproject.org
* Prepare for Your Care, prepareforyourcare.org

(I have previously posted about those resources.)

Here’s a link to the full article:

www.nytimes.com/2018/01/19/health/dementia-advance-directive.html

One Day Your Mind May Fade. At Least You’ll Have a Plan.
by Paula Span
The New Old Age/The New York Times
Jan. 19, 2018
Robin

“Chicago Med” TV show had a PSP patient

On Tuesday, January 16, 2018, the NBC TV show “Chicago Med” had a story that included a woman with progressive supranuclear palsy (PSP). The same woman had appeared in a previous episode where some details were given of PSP. In last week’s show, the patient had pneumonia. There was lots of discussion of a do-not-resuscitate (DNR) order and being placed on a ventilator. The patient died.

One person on an online support group said that last week’s TV show gave her a good opening to discuss pneumonia, end-of-life treatment, and the topic of a DNR with her spouse with PSP.

There was also some discussion online about how the lady with PSP had no problems with cognition, speech, or her eyes.

Here’s a link to Tuesday’s episode:

www.nbc.com/chicago-med/video/over-troubled-water/3649706

Robin