Five Ways to Help with Parkinson’s Care When You Live Far Away

By Nancy Ryerson

If you live far away from a loved one with Parkinson’s, you may feel limited in how much you can help out. Our community shares advice on simple ways to feel more connected and involved, whether you and your loved one live a car ride or a flight apart.

As you reach out, remember that long-distance support can be emotionally draining. You may feel anxious or guilty when you’re away from your loved one, or stressed about fitting everything into a short visit. Know that these feelings are normal, and try talking with a friend or use other emotional management tips to help.

1. Keep your own binder or other organizational system with your loved one’s medical information. Keep track of medications your loved one takes, contact information for their doctors and other notes about their care. Create a contact list of neighbors and friends who you can reach out to in case of an emergency.

2. Call, email or Skype most days, depending on your loved one’s preferences. Parkinson’s disease can impact speech, making phone calls difficult. For others, typing an email may pose a challenge. Try to reach out once a day in whichever way works best for you and your loved one.

3. If you can, occasionally have meals delivered or hire someone to do housework or yard work. Your loved one and the primary caregiver will appreciate the small break.

4. Ask how the primary caregiver is doing, too. As part of your check-in calls, chat with the primary caregiver. Caregiving can be stressful, and talking about how they’re feeling can help.

5. Make the most of your visits. Catch up on medical updates and ask about symptoms your loved one has experienced since you last visited. And talk about shared interests that aren’t related to Parkinson’s. Your visit can also be a good opportunity to give the primary caregiver the night off.

Source:: Fox Feed Blog

Ask the MD: Expanded Indication for DBS in Parkinson’s

By Rachel Dolhun, MD

Last week, the U.S. Food and Drug Administration (FDA) expanded the approved use of deep brain stimulation (DBS) in people with Parkinson’s. The surgical therapy is now also indicated for those who have had Parkinson’s disease (PD) for at least four years and have recently developed motor complications —”off” times when medication doesn’t work well to control symptoms and/or dyskinesia (uncontrolled, involuntary movements). Previously, DBS was offered to people who had Parkinson’s for at least five years, so this therapy now will be available at an earlier point in the disease.

DBS Is a Symptomatic Treatment

DBS was initially approved for PD tremor in 1996 and then for advanced Parkinson’s in 2002. Like all currently available therapies, DBS is symptomatic. It isn’t a cure and won’t change the course of the underlying disease. It’s also not for everyone because it doesn’t work for all of the symptoms of Parkinson’s (like balance problems or freezing while walking) and could even make some non-motor symptoms, such as memory or speech problems, worse.

However, in the right candidate, DBS may:

  • lessen motor symptoms, such as slowness, stiffness and tremor,
  • decrease medication usage (and therefore limit side effects, including motor complications),
  • enhance ability to perform routine activities of daily living, and
  • improve quality of life.

A 2013 trial published in the New England Journal of Medicine showed that for people with PD who developed motor complications early in the disease course, quality of life improved for those treated with DBS and medication as compared to those treated with medication alone. These results were part of the reason for broadening the indications for use of DBS in Parkinson’s.

Choosing and Undergoing DBS Therapy Requires a Complex Process
People considering DBS should have an evaluation by a movement disorder specialist (a neurologist who has extra training in Parkinson’s) and a neurosurgeon, who performs the surgery. These doctors review current symptoms and medication history. They also conduct extensive testing, including physical examinations both on and off medications, brain imaging and detailed memory testing (to detect any memory/thinking problems that could worsen with DBS).

Talking through this option with one’s loved ones and physicians is important. Although the procedure is generally safe, it is brain surgery and comes with certain risks (e.g., infection, bleeding). Every individual’s response to DBS is dependent on his or her symptoms and situation so discussing expectations of benefits prior to the procedure is also key.

In the actual surgery, thin wires called electrodes are implanted in to one or both sides of the brain in the areas that control movement — either the subthalamic nucleus or the globus pallidus. The wires are then connected to a small device in the chest, a pulse generator (much like a pacemaker), which sends electrical signals through the wires into the brain.

A few weeks after surgery, settings tailored to each person are programmed into the DBS device by a movement disorder specialist. These are gradually tweaked over time to give the most benefit and fewest side effects, and medications are usually adjusted at the same time. Finding the right combination of DBS settings and medications can take months or even up to a year. Every five to 10 years, depending on the type of pulse generator and the settings, the battery may need to be replaced.

Currently, the only DBS system available is made by the company Medtronic, but others are in development.

DBS Works by Affecting Abnormal Brain Signaling Patterns
Although the mechanisms are not completely clear, DBS is thought to work by regulating abnormal signaling patterns in the brain. In order to control movement and other normal bodily functions, brain cells communicate with each other using electrical signals (and brain chemicals). In PD, these electrical signals become irregular and uncoordinated, and people experience motor (and other) symptoms. DBS affects disjointed signals to allow the cells to communicate more smoothly and thereby lessen symptoms.

Studies Are Working to Improve and Expand DBS
Researchers are working to improve the experience of DBS systems and expand its use for even more people and more symptoms. One example is DBS targeting a different area of the brain (the pedunculopontine nucleus) to treat the walking and balance problems that don’t typically improve with current DBS approaches. Another is the development of so-called “smart” DBS devices. These record a person’s unique brain activity and then deliver electrical stimulation only when needed, such as when symptoms return, rather than continuously, as the current systems do. This improvement may help avoid some of the side effects of stimulation (e.g., numbness/tingling, speech problems) and lengthen battery life of the pulse generator, reducing the need for replacement procedures.

In addition, investigators are working to determine if DBS would be effective — work better than medication, improve quality of life, delay development of motor complications — in even earlier stages of Parkinson’s. A small trial of people with early-stage Parkinson’s demonstrated that DBS was safe and tolerated so now a larger clinical trial of DBS in people who, among other criteria, have been taking medication for four years or less is in the works. All participants will have the DBS system implanted and continue PD medications, but for the first two years only half of the volunteers will have the DBS turned on. For the second two years, all participants will receive DBS plus medications. MJFF is supporting the efforts to complete the planning phases (including a grant proposal to the National Institutes of Health for full funding) so that this pivotal trial can launch. Along with providing financial support, MJFF was able to aid researchers in collecting information regarding individuals’ willingness to volunteer for a trial like this using Fox Insight (an online tool that allows people with PD to submit data on their Parkinson’s experience).

The recent FDA approval of DBS with Parkinson’s disease for four years or more expands the population of people with PD who can potentially benefit from therapy. Ongoing and future research endeavors will hopefully continue to broaden this group and the potential uses of this treatment.

about deep brain stimulation.

Watch a webinar on DBS to learn more about ongoing research in this area and hear one patient’s story.

Find studies testing DBS and other therapies on the MJFF clinical research matching tool Fox Trial Finder.

The “Ask the MD” series is supported by Acorda Therapeutics. While our generous sponsors make the “Ask the MD” program possible, their support does not influence MJFF’s content or perspective.

Source:: Fox Feed Blog

For me the Tour was a euphoric blur — new place after new place, beautiful views, warm faces and a lot of time spent on a bike seat. Since it ended, it's been fun to catch up with people I met along the way to hear about their experience with the Tour. After all, with thousands of participants, this project has taken on many forms. I asked a few people to share their experience.

Veronica Tuerffs, who joined us for multiple events this summer including our climb to Colorado's highest peak, talked about what it meant to reach the summit with such a large group of family and friends.

"Being able to be on a summit is a magical thing. That feeling of accomplishment is one that I have been unable to find anywhere else. When you are able to get there with a group of friends and family though, it becomes much less about conquering something and so much more about completing something together. You literally get to look back on what you just accomplished with those that worked on it with you and say, 'Wow, look what we just did.' There are not many times in today's day and age when you are standing side-by-side with the people you are collaborating with and get to reflect together in real time."

Veronica was part of a group that was climbing in support of (and alongside!) Greg Gerhard, her future father-in-law, who was diagnosed with PD in 2009.

"My soon to be father-in-law and I have climbed together a lot...but this felt different. The moment on the summit of Mt. Elbert was very touching. I wasn't only seeing him accomplish a climb, I was seeing him do it surrounded by 10 people that were there for him — who were cheering him and others on the whole time — who dedicated their climb to him. I've never felt more honored to stand on a summit."

I remember that day and the Gerhard family vividly. In fact, I was fighting back tears as I turned and headed down from the top. But crew member Chris Stanley had the wherewithal, like he always did that summer, to capture the Gerhard's moment on film. When I asked Chris about his most memorable moments from the Tour, the climb with the Gerhards was at the top of his list.

"The top of Mt. Elbert in Colorado was a very special place. Climbing mountains, especially ones the size of Elbert, is an emotional rollercoaster. Is the weather going to be okay? Am I properly equipped? Is this switchback ever going to end? And when you're responsible for leading people up mountains — the peaks and troughs of the experience are amplified. When Greg reached the top of the mountain and was greeted by his family and friends I started to cry. I wasn't sure why. Greg isn't my Dad and I had only met him once before, but I was filled with joy and proud of the Tour crew for helping to build this experience."

Chris hits the nail on the head. Everyone on the crew and those who worked so hard to make the Tour a reality felt a real sense of pride and privilege when witnessing moments like this.

The highest mountain on the Tour route was California's Mt. Whitney. This climb took three days and involved tents, ropes, harnesses and a large team. We got to know each other very well over those three days of mutual exhaustion that created a lasting shared experience. I caught up with Christina Hunt-Fuhr, one of the California climbers. She trained, climbed and fundraised for her dad Jerry Hunt, who passed away four years after his PD diagnosis in 2001. Christina talked about how the climb made her feel closer to her father.

"I kept thinking about the conversations I used to have with my dad after he was diagnosed. He would tell me how he was sad (and scared) knowing that the moments [of clarity] would be temporary. Occasionally, he would ask me to go on a walk when he was having one of his better days. Something about getting outside and moving — even if it was just to the corner and back — made him feel better. So, while training for the hike, I'd often climb a mountain by myself with a full backpack, which slowed me down — just like he had been slowed down — and I'd think about him. I also thought the route we took to Whitney was extra meaningful, since it was full of unique challenges, and people with Parkinson's are presented with unique challenges every day. When faced with challenges, it reminded me of the importance of focusing on one day — or one step — at a time and allowing others around you to help you in whatever way that makes sense to you."

Christina is a relatively recent convert to extensive outdoor activities. When I spoke to her recently though, she was in the car with her son, heading out on a camping trip (in February!, oh to live in California...) so I asked her if there was anything about our climb that had left a lasting impact on her.

"There are so many aspects of the trip (and of training for it) that have stuck with me. Something about being in nature, with the beautiful and ever-changing landscapes, and raising money for a cause that didn't personally involve me, just reminded me that life is bigger than me. Whenever I start to get caught up in my day-to-day drama, I still find myself thinking about it. The entire journey has helped me be more present and more thankful for every moment. It has also reminded me of the importance of continuing to challenge myself in various ways. It just makes every day so much more exciting!"

I knew everyone's experiences were unique last summer, but it seems like many of the takeaways and lessons are in-line with one another. From state to state and summit to summit the Tour connected people who were once separate. Either way, I couldn't be more proud to be part of the Tour family — one I hope to see grow in 2016.

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Tour de Fox 2015: Five Months Later

By Sam Fox

It’s been almost five months since 80 of us arrived at the top of the Grouse Grind outside Vancouver, British Columbia. It was a clear and sunny day and we had views for miles in every direction — a fitting place to wrap up the adventure of a lifetime. That adventure included thousands of miles cycling and 49 different summit views in 48 states and Canada. But more importantly it included meeting more than 3,000 people dedicated to finding a cure for Parkinson’s disease (PD) who collectively helped the Tour de Fox raise over $2.5 million for research!

For me the Tour was a euphoric blur — new place after new place, beautiful views, warm faces and a lot of time spent on a bike seat. Since it ended, it’s been fun to catch up with people I met along the way to hear about their experience with the Tour. After all, with thousands of participants, this project has taken on many forms. I asked a few people to share their experience.

Veronica Tuerffs, who joined us for multiple events this summer including our climb to Colorado’s highest peak, talked about what it meant to reach the summit with such a large group of family and friends.

“Being able to be on a summit is a magical thing. That feeling of accomplishment is one that I have been unable to find anywhere else. When you are able to get there with a group of friends and family though, it becomes much less about conquering something and so much more about completing something together. You literally get to look back on what you just accomplished with those that worked on it with you and say, ‘Wow, look what we just did.’ There are not many times in today’s day and age when you are standing side-by-side with the people you are collaborating with and get to reflect together in real time.”

Veronica was part of a group that was climbing in support of (and alongside!) Greg Gerhard, her future father-in-law, who was diagnosed with PD in 2009.

“My soon to be father-in-law and I have climbed together a lot…but this felt different. The moment on the summit of Mt. Elbert was very touching. I wasn’t only seeing him accomplish a climb, I was seeing him do it surrounded by 10 people that were there for him — who were cheering him and others on the whole time — who dedicated their climb to him. I’ve never felt more honored to stand on a summit.”

I remember that day and the Gerhard family vividly. In fact, I was fighting back tears as I turned and headed down from the top. But crew member Chris Stanley had the wherewithal, like he always did that summer, to capture the Gerhard’s moment on film. When I asked Chris about his most memorable moments from the Tour, the climb with the Gerhards was at the top of his list.

“The top of Mt. Elbert in Colorado was a very special place. Climbing mountains, especially ones the size of Elbert, is an emotional rollercoaster. Is the weather going to be okay? Am I properly equipped? Is this switchback ever going to end? And when you’re responsible for leading people up mountains — the peaks and troughs of the experience are amplified. When Greg reached the top of the mountain and was greeted by his family and friends I started to cry. I wasn’t sure why. Greg isn’t my Dad and I had only met him once before, but I was filled with joy and proud of the Tour crew for helping to build this experience.”

Chris hits the nail on the head. Everyone on the crew and those who worked so hard to make the Tour a reality felt a real sense of pride and privilege when witnessing moments like this.

The highest mountain on the Tour route was California’s Mt. Whitney. This climb took three days and involved tents, ropes, harnesses and a large team. We got to know each other very well over those three days of mutual exhaustion that created a lasting shared experience. I caught up with Christina Hunt-Fuhr, one of the California climbers. She trained, climbed and fundraised for her dad Jerry Hunt, who passed away four years after his PD diagnosis in 2001. Christina talked about how the climb made her feel closer to her father.

“I kept thinking about the conversations I used to have with my dad after he was diagnosed. He would tell me how he was sad (and scared) knowing that the moments [of clarity] would be temporary. Occasionally, he would ask me to go on a walk when he was having one of his better days. Something about getting outside and moving — even if it was just to the corner and back — made him feel better. So, while training for the hike, I’d often climb a mountain by myself with a full backpack, which slowed me down — just like he had been slowed down — and I’d think about him. I also thought the route we took to Whitney was extra meaningful, since it was full of unique challenges, and people with Parkinson’s are presented with unique challenges every day. When faced with challenges, it reminded me of the importance of focusing on one day — or one step — at a time and allowing others around you to help you in whatever way that makes sense to you.”

Christina is a relatively recent convert to extensive outdoor activities. When I spoke to her recently though, she was in the car with her son, heading out on a camping trip (in February!, oh to live in California…) so I asked her if there was anything about our climb that had left a lasting impact on her.

“There are so many aspects of the trip (and of training for it) that have stuck with me. Something about being in nature, with the beautiful and ever-changing landscapes, and raising money for a cause that didn’t personally involve me, just reminded me that life is bigger than me. Whenever I start to get caught up in my day-to-day drama, I still find myself thinking about it. The entire journey has helped me be more present and more thankful for every moment. It has also reminded me of the importance of continuing to challenge myself in various ways. It just makes every day so much more exciting!”

I knew everyone’s experiences were unique last summer, but it seems like many of the takeaways and lessons are in-line with one another. From state to state and summit to summit the Tour connected people who were once separate. Either way, I couldn’t be more proud to be part of the Tour family — one I hope to see grow in 2016.

Source:: Fox Feed Blog

Regulation of Parkinson’s disease inflammatory responses by a MicroRNA

A small regulatory RNA called microRNA-155 appears to play a key role in the brain inflammation that helps foster Parkinson’s disease. This finding, using a mouse model, implicates microRNA-155 as both a potential therapeutic target and biomarker for this progressive neurodegenerative disorder.

Source:: Science Daily

Better visual, video skills can lead to earlier, more accurate movement disorder diagnoses

Because there is no definitive blood test or brain scan to confirm a diagnosis of movement disorders like Parkinson’s disease, neurologists rely on visual examination to diagnose and track these diseases. Researchers say that even better operate a video camera can make a big difference in the early diagnosis of movement disorders.

Source:: Science Daily

A few months ago, I had a surprise reunion with Babbette in the neighborhood's Ross Dress For Less clothing store scouting for Speedo markdowns.

We had met years ago, as swim junkies at our local Y. And over time, our locker room banter fostered a guise of intimacy. Though we were veritable strangers, we shed our vulnerabilities and established a trust that our secrets be honored, and privacy respected.

In truth, we were in part keepers of one another's stories in a profound yet superficial way. This female assembly was a safe refuge for sharing rites of passage, milestones, journeys, gibberish and simple tales of life on Planet Earth. Yet, I never revealed my diagnosis of Parkinson's disease (PD) to her.

But as I rummaged through the wasteland of discount swimsuits, I was caught off guard in an awkward moment. I realize that Babette, a paragon of dignity and grace, held a three-pronged cane for balance. I instinctively braced myself for the fate she'd soon reveal.

Coming closer, moving into my space, as was characteristic of Babbette's engagement, she blurted out her secret.

"I was diagnosed four years ago with MS (multiple sclerosis). I, for a period of time, was in a wheel chair; this walking stick enables me to negotiate these merchandise-strewn aisles more easily and gives me options, mobility and independence."

I cringed. I felt trapped. And after 15 more minutes, I was feeling warm, claustrophobic and dizzy.

But perhaps more troubling than my involuntary detainment was Babbette's abiding acceptance of her prognosis, her seeming acceptance of this fate as "signed, sealed and delivered."

Her condition now defined her. Lost was her admired professional identity, her enticing flamboyance and her impressive creativity. In contrast, the elastic waistband generic jeans and supportive common sense Oxfords she wore now were unsettling. I resisted any urge to share my own diagnosis story.

Babbette is now driving a manually controlled vehicle and researching other adaptive technologies. Her commitment to the lines in a Tennyson poem, "To strive, to seek, to find, and not to yield" is inspirational.

Despite Babbette's candor, I am more resistant than ever to not go viral with my PD. I rationalize perhaps because when I was diagnosed some 23 to 24 years ago, "pre-existing conditions" created hardships for those unable to secure reasonable healthcare. But the truth is, at times I still want to keep my own secrets.

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To Tell or Not to Tell: Secrecy and Privacy

Guest blogger Cheryl Kingston of Los Angeles, California has lived with Parkinson’s for 23 years and uses humor and creative writing to share her personal experiences.

A few months ago, I had a surprise reunion with Babbette in the neighborhood’s Ross Dress For Less clothing store scouting for Speedo markdowns.

We had met years ago, as swim junkies at our local Y. And over time, our locker room banter fostered a guise of intimacy. Though we were veritable strangers, we shed our vulnerabilities and established a trust that our secrets be honored, and privacy respected.

In truth, we were in part keepers of one another’s stories in a profound yet superficial way. This female assembly was a safe refuge for sharing rites of passage, milestones, journeys, gibberish and simple tales of life on Planet Earth. Yet, I never revealed my diagnosis of Parkinson’s disease (PD) to her.

But as I rummaged through the wasteland of discount swimsuits, I was caught off guard in an awkward moment. I realize that Babette, a paragon of dignity and grace, held a three-pronged cane for balance. I instinctively braced myself for the fate she’d soon reveal.

Coming closer, moving into my space, as was characteristic of Babbette’s engagement, she blurted out her secret.

“I was diagnosed four years ago with MS (multiple sclerosis). I, for a period of time, was in a wheel chair; this walking stick enables me to negotiate these merchandise-strewn aisles more easily and gives me options, mobility and independence.”

I cringed. I felt trapped. And after 15 more minutes, I was feeling warm, claustrophobic and dizzy.

But perhaps more troubling than my involuntary detainment was Babbette’s abiding acceptance of her prognosis, her seeming acceptance of this fate as “signed, sealed and delivered.”

Her condition now defined her. Lost was her admired professional identity, her enticing flamboyance and her impressive creativity. In contrast, the elastic waistband generic jeans and supportive common sense Oxfords she wore now were unsettling. I resisted any urge to share my own diagnosis story.

Babbette is now driving a manually controlled vehicle and researching other adaptive technologies. Her commitment to the lines in a Tennyson poem, “To strive, to seek, to find, and not to yield” is inspirational.

Despite Babbette’s candor, I am more resistant than ever to not go viral with my PD. I rationalize perhaps because when I was diagnosed some 23 to 24 years ago, “pre-existing conditions” created hardships for those unable to secure reasonable healthcare. But the truth is, at times I still want to keep my own secrets.

Source:: Fox Feed Blog

Promising respiratory drug focus of new clinical trial for parkinson’s disease

A medication approved to treat various respiratory diseases and that has demonstrated neuroprotective effects in preclinical studies is the focus of a new clinical trial for Parkinson’s disease.

Source:: Science Daily

Stemming the flow: Stem cell study reveals how Parkinson’s spreads

New clues as to how Parkinson’s spreads from cell to cell, a process which has evaded researchers for decades, have been revealed by new research. The work is the first to link the release of alpha synuclein, a naturally occurring protein that plays a central role in the development of Parkinson’s, with its most common genetic risk factor — GBA-1 — shedding new light on its role in the progression of the devastating neurological condition and its symptoms.

Source:: Science Daily

What Richard Sees: Insight into Lewy Body Dementia Hallucinations

Ava Butler, a member of The Michael J. Fox Foundation community, shares what her husband’s diagnosis of Parkinson’s disease and Lewy body dementia has taught her — which she takes to heart at home, and in her career.

Lewy body dementia (LBD) is not as well-known as Alzheimer’s, but it is the second most common form of dementia. More than 1.3 million Americans are impacted by LBD, but little public attention is paid to this lesser-known disorder.

Lewy body dementia a progressive neurodegenerative dementia closely associated with Parkinson’s disease. My dear husband, Richard has both. (Editor’s note: LBD is a progressive neurodegenerative dementia that is also a form of Parkinsonism, meaning that it includes some of the motor symptoms of Parkinson’s disease, too. While most people with Parkinson’s do not also develop Lewy body dementia, studies suggest that having Parkinson’s increases your risk.)

Persistent and recurring visual hallucinations are often an early symptom of LBD. This was true for Richard. Not all LBD hallucinations are fear based, but Richard’s were. His ability to communicate clearly has been impacted and sometimes words come out in an unusual and poetic way.

Between 2013 and 2014 I documented, as clearly as I could, exactly what Richard told me he saw. I share what he told me as a way of providing insight to those whose lives are also impacted by LBD. Here are examples of what Richard has experienced as written from his own words:

Occasionally people come in the house at night, but they go away when we turn on the lights and look around for them.

The plants on the south balcony turned into little children again. Today they are musicians and they played for everyone down below. People danced to their music.

Today Richard has forgotten my name. He thinks it’s James Stephen Ping, his brother’s name. Then he calls me Damaged Portilla. He forgot his name too. “My name? How would I ever know that?” he says baffled by the thought of it.

“You’re making this up,” I say. “No,” says Richard, “that would be immature.”

At the time, we knew he had Parkinson’s, but knew nothing about LBD. At first, the hallucinations and dementia were far more difficult to manage than his physical symptoms. Now that his disease has progressed, his hallucinations have become more manageable and less frequent. But LBD remains our biggest challenge.

When Richard is having hallucinations, I:

  • Respect what he sees. Dismissing his reality is not helpful, and can actually make it appear that I am not trustworthy.
  • Remind him that we are safe, and that everyone is on our side
  • Ask him to look in my eyes. This can help ground him. Remind him that I love him and secure. However, if I’m part of the hallucination and am perceived to be involved in some conspiracy, I need to back off and give him space.
  • Ask him to describe what he sees. Sometimes this causes him to focus a bit more. What he sees can give me insights into how he is feeling. Anxiety produces scary hallucinations. If he is calm and secure, the hallucinations tend to be positive.
  • Improvise to turn the negative situation into one with a positive outcome. For example, “It first looked like it was a bad guy, but he’s actually very friendly and on our side,” or “I saw that guy before and he’s harmless and is actually here to help keep us safe.”
  • Tell him that he can instruct the people to leave him alone.
  • Walk slowly towards the hallucination and tell the people it time for them to go away now.
  • Move and talk slowly and calmly. Fast movements cause higher anxiety.
  • Be mindful of my own emotions. My own frustration, anger or stress will make things worse.

Source:: Fox Feed Blog