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Stopping the Spread of Loneliness

shelter in place, loneliness

Many symptoms are representative of Parkinson’s disease, the more widely known being external tremors and an unusual gait — or “walking funny,” as some might say. There is one other less visible symptom that can be connected to having the disease: loneliness.

Loneliness can be a shortcut to depression. What makes depression more volatile is to mix it with something like COVID-19. That can be a destructive combination, to say the least.

Quarantine, isolation, and social distance strategies have been used to contain COVID-19. For many, isolation is known as loneliness and loneliness for a person with Parkinson’s is an especially tough struggle.

Loneliness causes a feeling of emptiness, of being alone. Lonely people often yearn for human contact. Fulfilling human contact is somewhat hard to come by when met with an elbow bump, a face mask, a slight bow, or another means by which we greet one another or express farewells during this unsettling time.

The person living with Parkinson’s already feels distanced from others. They can feel ostracized and ashamed. They opt to stay inside because of symptoms and side effects like tremors, cognitive struggles, or speech problems. Staying inside can add fuel to the fire of loneliness and create a deeper pit in which they sit, engulfed by and surrounded in darkness. While some people take isolation as an opportunity to slow down, others fear the worst while sitting alone in their homes, dwelling on the negativity. Focusing on the what-ifs can trigger worsening Parkinson’s symptoms.

Instead of succumbing to the what-ifs, fill your mind with positivity. Begin by taking a break from social media, even if only for a day during this crazy time. Eat well, keep up your exercise regiment as much as able, get plenty of sleep, and don’t stop talking with other people, even if it is just a message here and there or a video chat.

What we allow ourselves to become depends on the choices we make. So, get out of the dark and get out into the sunshine for a walk. Turn off the television for an hour and listen to the birds sing. Read an inspiring book and share what you’ve learned with someone over the phone.

Let’s stop the spread of loneliness.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Tips to Stay Fit During Coronavirus Isolation

CBD

If you’re in the same boat as my dad, chances are that your gym is on lockdown. Dad was disappointed to hear that Rock Steady Boxing (RSB) is pausing operations during the global coronavirus pandemic. But he also recognized that it’s the safest move.

This global quarantine is really shaking up our routines, which can feel frustrating. But one of the beautiful consequences of the pandemic is that huge steps are being taken to adapt. In light of current events, fitness instructors are starting to offer free classes for those looking to stay fit at home. It seems as though fitness classes are becoming even more accessible than they were before.

If you’re lucky enough to have an internet connection and a space in your home to work out, there’s no reason to let your fitness go. You can follow along with a number of fitness videos or write down the routine and do it on your own. Some videos are geared specifically toward Parkinson’s patients, while others are general routines that can help you work up a sweat.

Fitness classes for Parkinson’s

Finding fitness classes that target Parkinson’s symptoms can be really helpful. Focusing on strength and mobility can help to keep symptoms at bay. Luckily, a number of organizations recognize this.

Rock Steady Boxing

I recently spoke with Sara Roque, Rock Steady Boxing’s affiliate services director. She noted that affiliate coaches might have access to a series of RSB’s virtual courses. If you usually take RSB classes, it’s possible that your coaches have access to virtual videos that are similar to the classes you’re used to. It might be worth asking them about it.

If you’re unable to gain access to RSB videos, a number of organizations offer virtual boxing courses. Many don’t require equipment. Check out these boxing videos from PopSugar Fitness and Fitness Blender if you want to stay fit until the gyms open again. Many of these workouts are designed to target cardiovascular health, which is an important way to stay strong while in isolation.

The Brian Grant Foundation

The Brian Grant Foundation offers a series of online videos geared specifically toward people with Parkinson’s. If you like what you see, you can donate to show support, but it’s not required. The videos address everything from warmups to aerobic agility and vary in length, making it possible to find a routine that targets Parkinson’s specific challenges without leaving your home.

Power for Parkinson’s

Power for Parkinson’s is another organization that makes exercising from home relatively easy. This organization offers videos that range in length from 30 to 60 minutes. Videos target strength, balance, and vocal strengthening, among other things. Most don’t require equipment.

General fitness classes

If you’re looking for fitness classes that don’t necessarily target Parkinson’s, tons of personal trainers and yoga teachers are adapting to fill the virtual fitness space. YouTube is a wonderful resource for free fitness courses for just about anyone. Chances are you’ll find a fitness class that targets the type of workout you’re looking for.

A couple of them that I know include:

Amy Wansing Yoga

Amy Wansing Yoga will be creating virtual yoga classes on YouTube for use during this pandemic. The Colorado-based yoga instructor specializes in strength and has a background in yoga for climbers. But she also provides meditation sessions and positive mantras.

Kari Sullivan Fitness

Kari Sullivan is a Colorado-based personal trainer. She will be providing at-home workouts during the pandemic. Follow her on Instagram (@karisullivanfitness) to find new workouts during the week. She has a background in CrossFit and specializes in strength training. But her workouts offer a variety of exercises and options for people of any age and ability.

Creating new routines takes a lot of time and effort. But it’s possible. Saying committed to our health and well-being will allow us to overcome barriers associated with frustration and change. And technology is creating new ways to connect with people who can hold us accountable to those routines.

Staying active while in quarantine is entirely possible. Maybe we can even get our loved ones to join us!

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Sheltering in Place Is Harder Than I Anticipated

shelter in place

Today’s news is yesterday’s news, and I am sick of yesterday’s news. I am more disturbed by the news now than I was five minutes ago. Let me clarify. 

This news — specifically about the coronavirus — didn’t affect me as much before. I have been living in a bubble, and my bubble just burst. I have been living as if the coronavirus won’t ever get me. As if I were invincible. I’ve been living with the mindset that nothing will get past me and wreak havoc on my family, friends, or me. Not even this giant that I can’t see. 

But moving past this virus doesn’t necessarily mean contracting the virus, getting sick, and recovering. I just found out it can mean so much more. It is bigger than anything I anticipated.

We can feed off each others’ fears, eventually making them our own. As people with Parkinson’s, we don’t need more to worry about, thank you very much. Thankfully, I haven’t taken fears others are struggling with and made them my own.

However, getting past this virus may be harder than I anticipated. I didn’t expect to get a phone call from one of my kids who thinks it best to hole up at home with his family as much as possible. They are sheltering in place.

That means no grandson for possibly three weeks or more. I realize my family is not trying to snatch my grandkids away from me. My son is merely sheltering his family. Instead of catering to Grammy’s whims and wishes, he is taking his family under his wing and protecting them until this storm is over. I am proud of him but I am angry at this virus. 

It reminds me somewhat of Parkinson’s. The virus and the disease do as they please, giving no thought to what we may want. 

We have to “shelter in place” in our life with Parkinson’s. We have to take precautions to not overdo it, to keep our immune systems as healthy as possible, to try to keep up with our exercise programs at home, and to stay connected to others as much as we can (via FaceTime, telephone, etc.) until this is over. Because today’s news could very well still be tomorrow’s news.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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We Are Shut In, Not Shut Out

shut in

My chronic disease has forced me to stay home for a week after an exhausting recent trip to St. Louis. When my symptoms force me to curtail engagement outside the home, I become a “shut-in.”

Many are entering voluntary home confinement due to COVID-19. People also are experiencing mandatory lockdowns by decree in several states. Confinement is probably a new and uncomfortable experience for many, but the chronic disease community has learned to live with restricted access without shutting out the world. We have a pool of wisdom that can help people with this difficult adjustment.

Following are tips to help with this forced — but temporary — confinement.

Stay home, but stay engaged

Embrace your responsibility to help curb COVID-19. Practice social distancing and disinfect your hands and hard surfaces. Reach out when necessary to secure food and shelter for you and your family. Respect the mandatory lockdown requirements for nonessential tasks and travel. Support essential workers in the community who are vital to maintaining our health.

Find ways to stay connected with co-workers, friends, and family despite social distancing. Use the internet or your phone, but don’t stay glued to the screen. Pick one block of time every day to get news updates. Constant and relentless news will only escalate your emotions. Being informed is important; being overwhelmed is not.

Patience and communication are key

Realize that working from home is different than relocating to another building for work. Be patient with yourself and the people around you as you adjust. Keep a regular schedule as much as you can. It is often tempting to work all of the time. Schedule meals, family time, and activities into your day, just as you have before. It takes time to adjust to the disruption of our “normal” work routine.

If you live with other people, you must spend more time on communication. Personal space becomes a priority. Set aside a place in your home that is your private space and communicate that boundary to the people living with you. Access that space when you need to but don’t get lost there.

Live well

Make time for threshold management. Emotions surrounding COVID-19 can easily escalate to mass hysteria. It is easy to become emotionally overwhelmed, but only you can quiet your mind during a lockdown. Remember, this is temporary. Just put one foot in front of the other and stay safe.

Social distancing is an opportunity to engage in activities you’ve always wanted to do but never had the time. I retrained my eyes to use eccentric viewing automatically, which took hundreds of hours. Pick something important, something that will lift your spirits, and something that will improve your quality of life. You are shut in, not shut out. You may be locked down but not locked out of contact.

Maintain healthy life habits. Try not to let stress trigger a regression to old, unhealthy habits. Eat well, exercise, rest, and use windows, patios, and decks to get a daily dose of sunshine and fresh air.

These are difficult times. Most people don’t have the experience of being forced into home confinement by a disease, but the chronic disease community has a wealth of experience with such matters. Hopefully, this column will generate shared wisdom about being shut in and not shut out. We can help during this crisis. Please send this column to everyone you know and post it on social media.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Managing Stress by Expecting the Unexpected

unexpected

Travel beyond our homes is eerie right now with the onslaught of the coronavirus pandemic. We feel as if we’re living a dystopian sci-fi film, with people in masks and gloves waving apocalyptic messages from the World Health Organization and U.S. federal and state governments.

My immune system isn’t like it was when I was younger. I wear gloves for every outing. I wash my hands and apply antibacterial solutions. But you just can’t prepare for every possibility when traveling halfway across the continent. Expect the unexpected and the stress is more manageable.

Sitting for more than two hours is difficult for me. My muscles become rigid and painful. I resemble the Tin Man in “The Wizard of Oz.” Changing positions and making slight movements can ease the discomfort.

The first leg of our flight was great. I had lots of room due to a shortage of passengers. After switching planes for the second leg of the trip, I was in the middle seat. Despite the availability of other seating accommodations, a very large person decided to sit next to me in the aisle seat.

I ended up draping myself over my partner. I focused on a lot of calming breath work. It’s not like I can spend weeks in an airplane cabin simulator learning how to be at peace with a body that makes a lot of noise. Expect the unexpected.

I’m approved for medical marijuana use by my providers at home. I find it useful for pain management as it helps to reduce rigidity and addresses pain receptors. When deciding to relocate, we chose the Illinois side of the St. Louis metropolitan area because marijuana is legal there for both medical and recreational purposes.

Recreational access was important because it will take time to get approved for medical marijuana after I establish residency. Federal law says I can’t transport this medication across state borders — even for medical purposes. So, we had to find a dispensary in Illinois during our house-hunting trip.

Because we had made our plans and reservations two months in advance, we anticipated the weather would be warmer there as it usually is this time of year. We thought the dispensary “experience” would allow access quickly and efficiently, much as we have back home.

Instead, it was a four-hour wait in 40-degree weather with a brisk wind and only two fleece jackets for outerwear. That was my partner handling the unexpected — waiting in line, surrounded by a hundred other folks.

Back in the car, I was battling pain surges — sternocleidomastoid attacks — every five to 10 minutes over those four hours. Then, in the middle of that, I really, really had to find a restroom. I didn’t know where I was, had never been there before, and felt like roadkill.

Looking out the car window across the parking lot, I saw a big sign: “Gateway Convention Center.” Should be a restroom there, I surmised. I found one women’s restroom, then two more women’s restrooms down the hall. I said to myself, “What? Where’s the men’s restroom?”

I’m all for what architects identify as “potty parity” in their design elements. Potty parity is calculating the number of available restrooms by anticipating how many women and men will access public facilities. I know the number of women in most public accommodations greatly outnumber the men. But there is a time when a man needs to do what a man needs to do!

Parkinson’s patients should not postpone their use of the restroom because of the additional discomfort that can happen when one tries to “hold it back for too long.” I was quickly approaching that critical impasse as I found three women’s restrooms and no men’s restrooms. Doubled over and dashing at the same time (quite a sight), I saw a male custodian and thought, “Please, let him know where the men’s room is.” He did.

There is no way to prepare for this sequence of events. The unexpected will happen. The best we can do is embrace the unexpected, as well as the challenges and the opportunities that come with adapting to new situations.

Studies have shown that people who experience anticipated stressors have fewer physiological reactions to those stressors than people who experience unanticipated stressors. For example, receiving electric shocks but not knowing when the shocks will be delivered will increase the stress reactions. The unexpected can ignite our fight-or-flight chemical maelstrom, pushing us close to the threshold.

The unexpected carries with it the unknown, a “cloud of unknowing,” a dissonance that drives demons into our desperation. Embracing the unexpected without a fear-based focus can decrease the effects of stress and shift the balance toward well-being and a positive outcome.

A positive outcome from our cross-country efforts: We found a home we really like. It was stressful but made easier by practicing brain therapy, including embracing the unexpected.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Managing Stress by Expecting the Unexpected appeared first on Parkinson’s News Today.

Redefining My Honeymoon Phase as My ‘New Normal’

clinical studies

This December marked the fifth anniversary of my diagnosis with Parkinson’s disease. Technically, I am still in the honeymoon phase — the first three to eight years of the Parkinson’s journey. Life is still pretty normal. Then again, what is normal?

Normal now consists of inconvenient symptoms including tremors, low blood pressure, rigidity, and anxiety. Oh, and lots of medicine. Taking numerous medications daily was never normal but it is now part of my daily routine, along with exercise. Does my evolving normal mean my honeymoon phase is nearing its end? Maybe. Maybe not. I am choosing to redefine my honeymoon phase as my “new normal.” Life is good, but it’s also different. I have moved from newly diagnosed to patiently awaiting a cure.

‘New normal’ puts us in the Cure-for-Parkinson’s Waiting Room. What should we do?

Keep moving and don’t stop!

My goal is to keep others moving alongside me. It’s easy to get comfortable and coast along, but that won’t get the job done in fighting this disease. Staying consistent and living well with Parkinson’s isn’t easy. It’s especially hard to do it alone. One of the most important tactics in this fight is finding others who share the same journey. Parkinson’s warriors and our coaches look out for one another. Parkinson’s comes at us full force and head-on every day. Together, we push back.

You can educate yourself and participate in the search for a cure through clinical studies, especially early in your diagnosis. The Michael J. Fox Foundation’s Fox Trial Finder is a tool that helps match volunteers with available clinical studies. There are two main types of clinical studies — observational studies and clinical trials. Observational studies involve tracking and collecting data for a better understanding of Parkinson’s. Clinical trials test promising drugs and other therapies.

Although many studies are done in a clinical setting, others are not. One long-term research effort is the Fox Insight study. It is completed online and done from home. Some studies are enjoyable. For example, I participated in a study in which I took a series of guitar lessons over six weeks along with others who have Parkinson’s. Researchers examined the effect of the lessons on quality of life, upper motor function, mood, and cognition. Yes, it was fun and we all became friends. However, it was very challenging. More importantly, researchers received valuable data.

There is a study for everyone!

Ultimately, a cure will be found through us — the people facing the disease every day.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Fighting Giants: Staying Calm During the Coronavirus Panic

fighting fear

I have Parkinson’s disease and I live on a great big orb whose inhabitants have recently taken to biting their nails. They are also purchasing toilet paper, paper towels, water, and soap as if they are going out of style. Eggs are disappearing out of supermarket cold cases. Those suffering from the common cold or allergies will be hard-pressed to find remedies as these have almost completely disappeared as well. 

One thing is driving people to purchase beyond their needs and that is fear, otherwise known as the COVID-19. Though most people hadn’t heard of the coronavirus before this year, it had become an international health concern by January 30. Today, both supermarket shelves and schools are empty. The streets are quiet. People are isolating themselves.

How do we stay calm when facing such a big, invisible giant? How did we stay calm when we first faced Parkinson’s, the other big, invisible, not-so-friendly giant in our lives? Most likely we didn’t. 

Some might have cried. Some might have been seized by fear of the unknown. That’s the problem with diseases that come in various shapes and sizes. You can’t predict their journey. You may have an idea of how it will go but you can’t be certain. Because of the disease’s uncertainties and unknowns, fear can take over and wrap its sharp claws around you, trying to strangle what hope and peace you still cling to. 

When you were told you had Parkinson’s disease, it might have come as a shock. Perhaps it didn’t. Maybe it was a relief to finally know what was waging war within you. Now you can fight against something that isn’t quite so invisible anymore.

You stand in one corner while your opponent stands in the other, baring his sharp teeth and stomping his heavy heels on the mat. It is here you take a stand and decide not to allow this disease to get the best of you. You take the first punch, the second, and the third. You pummel that giant. Exhausted and on your knees, you look at the floor as the tears run down your face and then you feel it. A hard punch to your back followed by a gut punch. Will you ever recover from this — the fight of your life?

You lift your face and then you rise. Now you face your fear. With the last of your strength and unspent anger, you give fear a punch that knocks him off his feet. You know he will never be completely gone, but for now, he is subdued. 

Here comes the next giant: COVID-19. You’ve already faced one giant. You’re not afraid to face another. You adopt a similar strategy to deal with the virus as you do with Parkinson’s disease. You face it head-on and do what you can to stay healthy. You keep exercising. You keep eating well to stay in good health. You keep moving. You isolate. You don’t hide. Hiding is a lonely way to live.

You may get the virus. And yet, it may pass you right on by.

If you find yourself fighting the virus, fight with all you’ve got and don’t give up. You may be isolated but you are never alone.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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This Parkinson’s Patient Kit Can Make Your Hospital Stay Safer

kit

I had surgery a month ago. While it was a minor, 15-minute procedure, I was more anxious about it than I was before a previous seven-hour deep brain stimulation (DBS) surgery. Whether it’s 15 minutes or seven hours, any surgery or medical procedure can cause worry, fear, and anxiety.

Many things can contribute to a good hospital experience as well as a bad one. The Parkinson’s Foundation notes that, “Additional challenges for people with PD in the hospital arise due to a lack of understanding about the disease amongst hospital staff.”

Additionally, the foundation says, Research shows that when people with PD are admitted to the hospital, they have longer stays and more often need rehabilitation afterwards, compared to people without PD.”

Several factors contribute to extended stays and recovery periods, include medication delays, missed doses, or errors.

Avoiding mishaps in the hospital

Hospitals are not exempt from making mistakes while we are in their care. To promote the best care possible as a person with Parkinson’s, several years ago the foundation began promoting a campaign called “Aware in Care,” which includes a free “Aware in Care” kit for patients. 

The kit contains several cards that provide medical staff with information or alerts about important patient details. For example, the deep brain stimulation information card alerts medical staff that the person has a stimulator, while the Duopa information card is for those using a Duopa pump. The medical alert card provides general medical information for doctors and nurses.

It’s also a good idea to prepare a hospital action plan for your next visit, whether it’s planned or an emergency. This plan includes creating an emergency contact list and managing medications, among other actions. You can read more about preparing a hospital action plan here.

The kit also contains a Parkinson’s disease ID bracelet in case of an emergency where the patient can’t communicate.

While all of these items are important, the medication form is invaluable. Copies of a completed form should be kept in the kit. The form can be downloaded here and completed on a computer before printing it out. Take the time to update the medication form each time a medication or treatment is changed, added, or discontinued.

Patients who have had DBS should bring their handheld monitor to the hospital. Although doctors may shut it off during surgery, it will be needed later.

Be aware that equipment in the operating room can cause a stimulator to shut off. You should avoid a procedure known as ultrasound diathermy, and check with your neurologist before undergoing an MRI.

Another essential piece of information to have in your kit is the name of your movement disorder and your neurologist’s name and contact information.

Also in the kit, nurse fact sheets enable vital information about Parkinson’s to be shared with every member of the hospital care team. For example, it includes a warning that the antipsychotic medication Haldol (haloperidol) should never be given to any patient with Parkinson’s.

Lastly, the kit contains a magnet to display a copy of your medication form with your medication regimen next to your hospital bed. 

All the items come in a small bag, making it easy to grab and go. The bag can easily hold a pen or pencil, a purse package of Kleenex, and other small items.

Most of all, the “Aware in Care” kit will give you peace of mind, leaving you to concentrate on getting well.

You can order your free kit at 1-800-4PD-INFO (473-4636) or at parkinson.org/AwareinCare.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post This Parkinson’s Patient Kit Can Make Your Hospital Stay Safer appeared first on Parkinson’s News Today.

Going Numb Means Going Nowhere in Trying Times

numb

Sobbing, she throws her arms around me. “I just can’t take one more thing. I’m totally overwhelmed. All the things I need to attend to are flying around me, and as I try to grasp onto one, I come away empty.” She rests in my embrace and the storm slowly subsides. Lying with her is like being in the middle of a tornado.

Toto and the Wicked Witch share the violent winds of her emotional upheaval as I watch her life swirl around her. I, too, feel overwhelmed and have little room for any additional feeling from any source. I want to jump in the car and drive away to a greener pasture, but I find that there is no place away from myself except that which I create. Then, as if someone dropped a house on me, I shifted into the altered state of being numb.

During my years of clinical practice, I saw many patients use the “numb space” as a form of protection during their recovery from a traumatic injury. They walk around glassy-eyed, seemingly lost in their own inner space. Conversations with them cover only the superficial generalities of daily life.

I’ve always appreciated the need for people to create their own healing space and never pushed against that space without informed consent. Right now, it seems that I need the numb space as part of staying healthy through the stress of moving.

The problem is that the numb space doesn’t fit me very well. In some ways it’s quiet and comforting. But it takes a lot of energy to put up all the blockades necessary to force that numb space into existence.

The numb space should not be confused with the quiet stillness one can discover through the diligent practice of meditation. Forcibly blocking out all feelings is not a quiet experience, and it’s difficult for me to maintain. Emotions have, and continue to be, an important way that I see the world. Being legally blind, I need all the extra eyes I can get.

The numb space is also difficult for my partner. She experiences it as a retreat from the intimacy and sharing that we have had for almost 50 years. With Parkinson’s, I can’t always join her on the simple errands of shopping and going to the post office, or with other chores. In addition to the loneliness of not doing things we used to do together, going numb widens that intimate and shared space between us.

We usually can work around the Parkinson’s issues and the “off” times to schedule trips out. Going numb means that even when we’re together, an emotional and spiritual separation exists in our relationship. Add to that all the swirling activity of selling and buying a home, preparing for the move, and the paperwork involved in relocating, and she feels that even more responsibility is being placed upon her, and less time is set aside for her to recover and recharge.

When Parkinson’s causes the loss of physical abilities, partners must rely on the underpinnings of their friendship, love, and communication through the challenges. When those parts of the relationship face the numb space, it feels as if there is little left. We both recognize it and make every effort to reach out to diminish the effects of the retreat.

She has often said that she doesn’t want to be identified as a caretaker; she prefers to keep her relationship with me as a partner. To her, being a “caretaker” implies that there is a clinical aspect to the relationship, or a nonemotional entity that merely provides transportation and makes sure that meals are prepared and the house is clean. Being a partner means so much more, and she will not trade being a partner for a “caretaker.” So, we work together, as we have done for so many years, to give each other support, even though the needs and methods of support have changed.

I see the numb space as temporary, an oasis or break from the storm. It is not a destination because it leads nowhere. People get in trouble when they try to make the numb space a permanent destination to visit daily, by whatever means. It may be harder to stay in touch with feelings during stressful times in life, but brain therapy is about taking the road less traveled and exercising your brain to build new neural connections.

“Use it or lose it,” and remember that going numb is going nowhere.

Have you used the numb space to help you cope with life? Please share your thoughts in the comments below.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Going Numb Means Going Nowhere in Trying Times appeared first on Parkinson’s News Today.

How Your Smartphone Can Help You Manage Parkinson’s

CBD

My dad was a firm believer in his flip phone and knew it would survive if he dropped it from a considerable height. He counted on it to connect him with his real estate clients and get the job done.

After his diagnosis of Parkinson’s disease, my siblings and I realized that voice tools might address his difficulties with texting. Eventually, his cellphone company convinced him to switch to a smartphone. 

My dad has since realized that smartphones can simplify many tasks. He can text his children by speaking into his phone and can ask Google about the weather without navigating the keyboard. Switching to a smartphone opened up new avenues of communication and made it easier for him to access information.

Siri and Google provide convenient ways to perform basic tasks, but resources exist that could further simplify your life. For example, you can track your medications, play cognitive games, and target speech and language skills via various mobile apps. It might even be possible to detect early Parkinson’s symptoms by utilizing certain technology. We’re still discovering new ways to manage Parkinson’s symptoms with technology.

Tracking medications

Mobile apps such as CareZone and Pill Reminder are free ways to track your medication dosage and timing. You can set up reminders that will ping your phone when it’s time to take another pill. Tracking medications in this way could offer a visual representation of your medication journey and depict the speed at which you’re adjusting your dosage. 

Targeting speech and language skills

Apps such as Beats Medical Parkinsons Treat can slow the progression of speech and language symptoms. You also can track your medications with this app. It offers tutorials for mobility, speech, and dexterity, giving you a way to fight Parkinson’s symptoms. 

Improving cognitive function

Puzzles that target cognitive function are a great way to stay sharp late in life. For example, Peak Brain Training features games intended to sharpen memory and vocabulary. You can track your progress over time to monitor changes in brain function. 

Easing anxiety

Regular meditation practice is associated with increased cortical thickness. Apps such as Calm and Headspace offer a way to engage with different meditative practices to ease anxiety and depression. 

Apps designed for Parkinson’s

Some apps are designed specifically for people with Parkinson’s. The Parkinson mPower study app measures tremors, gait, and balance, while Parkinson Home Exercises offers home exercises and movement advice. Learning to interact with these and similar apps can help you combat symptoms of Parkinson’s such as muscle stiffness. 

Living in the era of technology has its perks. Information travels more quickly than ever before, allowing for a global exchange of information. Competition is driving technological progress to an all-time high. Parkinson’s can be difficult to navigate, but different smartphone functions and apps could simplify your life. 

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post How Your Smartphone Can Help You Manage Parkinson’s appeared first on Parkinson’s News Today.