Posts

Is Parkinson’s Disease a Bully?

bully

Sherri Journeying Through

We have all heard of them, and many of us, in one way or another, have encountered them. Some of us (hopefully, with regret) have been one. Who am I talking about? 

Bullies

They intimidate us and physically hurt us. They embarrass us, taunting us with their words. We fear that they’ll defeat us.

What do bullies have to do with Parkinson’s disease?

Parkinson’s is a bully with a capital “B.” It teases and taunts us, telling us that we are no longer useful. It tries to convince us that we no longer serve any purpose. This disease can tempt us to give up, to surrender to its cruel clutches. 

Embarrassment is one way Parkinson’s tries to steal our dignity and pride. And it often wins. We forget as we struggle through each day that others don’t understand us: our movements, speech, and forgetfulness. We can take those misunderstandings personally.

Drooling, shaking, a quiet voice, and a masked face are symptoms that may have become “natural” to those of us with the disease. But no matter how “natural” these have become, we’re still embarrassed by them because of others’ reactions when we’re out in public.

Parkinson’s whispers its ugly lies, saying you are no longer of value

If anything, you have more value. You have developed an empathy that many others don’t possess. You can relate better to those who are battling other diseases, those who are in pain, feel alone, and need hope. People who are fearful receive your undivided attention. Of course, having this disease may not be your preferred method of acquiring such character traits.

In a recent documentary video on Facebook, television host and producer Mike Rowe said, “To feel bullied is to feel helpless.” While Parkinson’s disease is a bully with a capital “B,” we don’t need to feel helpless. Instead, we should feel hopeful. Why? We are becoming better and strong enough so we don’t allow Parkinson’s taunting to get the best of us. And for me, that’s a huge plus.

***

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 Is Parkinson’s Disease a Bully? appeared first on Parkinson’s News Today.

The Compassionate Warrior in the Battle Against Parkinson’s

compassionate

“C” is for compassion in my CHRONDI Creed, a warrior’s guide in the battle against Parkinson’s disease. It may seem odd to label a warrior as compassionate. Normally we picture the warrior as fierce, brave, courageous, and strong. We don’t often associate compassion with such an image. However, in the battle against chronic disease, being both a warrior and compassionate person has important benefits. The compassionate warrior brings a special set of armor and weapons.

Compassion is the mindset upon which the strength and courage of a warrior are set in motion. I have defined compassion as empathy plus wisdom; empathy is the ability to sense and hear the suffering of others, while wisdom is the ability to do something to reduce that suffering. Compassion is about the reduction of suffering in the world.

The first step to becoming a compassionate warrior is making a commitment to a life of compassion, or having a philosophy of compassion. The second step is to realize that you can change your behavior so that you contribute less to the suffering of those around you. The third step is realizing that you can act in a way that helps reduce the suffering of those around you without sacrificing your well-being. In fact, this path of the compassionate warrior promotes personal well-being.

The challenges of living with PD are many. The most obvious are the motor and coordination issues that impact every movement. There are also equally impactful emotional issues such as impulse control, grief, loss, depression, anxiety, and anger. Also included is a decreased ability to manage those emotions.

When the actions connected to these emotions spill out into life, the consequences can be costly and add to an already arduous chronic disease battle. The biggest contributor to human suffering is the objectification of the other person, which often happens when emotions overflow. This is where the practice of compassion plays an important role.

Practicing compassion is very much a scenario looping skill, and as such, it is good brain training for people with Parkinson’s. Without doing so directly, the practice of compassion helps us to moderate those emotions and decrease their consequences.

compassionate
(Graphic by Dr. C)

It may seem odd to say that acting compassionately has selfish benefits. That’s not the goal of compassion or its mindset, but those benefits are simply positive side effects. Compassion focuses on the other person. The skill at which a person can do this depends on their history with practicing compassion. You don’t have to be an expert to have it make a difference.

Practicing compassion at any level is good for relationships, and healthy relationships improve the quality of life for anyone with a chronic disease. The compassionate mindset is also one of gentleness, which can be (and should be) applied to self in healthy doses. Being a compassionate warrior does not mean we sacrifice our well-being for the sake of another. Two people in a rowboat, both manning the oars, makes the journey easier.

Compassion, after some practice, can move from contemplated action to the first action taken. It then becomes the first thought considered, which then becomes living as a compassionate warrior. I have been training as a compassionate warrior for decades, and PD has set me back. As a compassionate warrior, I continue to work as hard as any warrior would when preparing for battle. The compassionate warrior does this preparation along with meditation and a calm mind.

It is a commitment to a way of living that’s foundational for the other parts of the CHRONDI Creed. Additionally, the other parts of the CHRONDI Creed help to support this foundation to becoming a compassionate warrior against the chronic disease of Parkinson’s.

It is not easy to become a compassionate warrior in the battle against PD, but the benefits are worth the effort. What is your experience in applying compassion in your life?

***

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 The Compassionate Warrior in the Battle Against Parkinson’s appeared first on Parkinson’s News Today.

Have You Joined Our Parkinson’s News Today Forums Yet?

forums

The Parkinson’s News Today Forums were created to allow those of us with this disease to lean on and learn from each other, and most importantly, laugh together. The forums also aim to help caregivers, family members, and friends to understand the daily challenges of those living with Parkinson’s disease (PD).

Have you ever tried to explain to someone without PD how difficult it is for you to fold sheets or put on a seat belt? Only another PD patient can empathize with this disease of “little losses.” We hope that these forums can facilitate and encourage these conversations.

Our goal is to be the “one-stop-shop” forum for information and experiences related to PD.

Why should you check us out?

Our forums differ from other platforms in the following ways:

We have moderators

I moderate the forums alongside my BioNews Services colleague Ally Macgregor. We remove advertisements, links, and promotional posts, and we ensure that discussions remain respectful and relevant.

Regular contributions

As moderators, we keep the forums active with discussions on topics related to new research and shared experiences. We respond promptly to questions and concerns from members, and we hope to lessen feelings of social isolation.

We monitor the audience

We will quickly delete spam and promotional content. We don’t tolerate bullying or belittling behavior, and comments that violate our policy will be removed.

Additional features

You can add media to your posts, including videos, images, links, and podcasts. A private messaging option also is available for members.

Keyword search

You can search for a topic using specific keywords related to your area of interest.

Someone to lean on

Knowing we are not alone with our disease is empowering. Being part of an online community can help us to heal and to cope with PD’s challenges. The forums allow you to share your personal experiences and frustrations with challenging situations.

To learn from

We will keep you up to date with posts about cutting-edge treatments for PD. Participants can share their symptoms and experiences and the treatments they have found to be most effective. However, please remember that PD symptoms, medications, and side effects vary from patient to patient. While an alternative treatment, medication, or supplement may benefit one patient, another person may not have the same response.

To laugh with

Laughter is the best medicine. Having a sense of humor about the absurdity of some PD symptoms can help with the healing process. If we can share our stories with others, it may lessen the embarrassment caused by our symptoms.

When and where

Our PD forums launched in 2018 and cover a broad set of topics, including:

Convince me

Following are three examples of topics currently being discussed in our forums. Click on the links to join the conversations.

Count me in!

Getting started is easy:

1. To create a profile, go to “Register,” located at the bottom right of the “Log In” section.

2. Once you’ve entered your details, you can head to the main forums page. Discussions are moderated and inappropriate comments will be deleted.

3. Start exploring the forums now.

***

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 Have You Joined Our Parkinson’s News Today Forums Yet? appeared first on Parkinson’s News Today.

Caregivers Need Attention, Too

caregivers

Sherri Journeying Through

Living with a chronic illness can create stress, anxiety, and more. This is not only true for those with an illness, but also their caregivers — perhaps even more so. It is often up to caregivers to care for themselves, along with their loved ones who can no longer adequately do so. 

Caregivers often can feel forgotten, taken for granted, and alone. Sometimes they feel stretched to the point of snapping like a rubber band.

In addition to being a caregiver to someone they love, many also work outside the home. This often involves more than one job to put food on the table. With an already heavy load, some also have children and bear the brunt of raising them. Caregivers might not receive help. They find no reprieve from changing the beds and preparing the meals, or from cleaning up spills and scrubbing stains.

As people with chronic illnesses who still are in a pretty good place physically, mentally, and emotionally, we need to be sensitive to those around us who care for us in ways we can no longer do for ourselves. We need to be aware of how our chronic diseases may affect our partners, children, other family members, and friends, too.

Are we impatient with them? Cranky? Do we expect too much, too often? Can we do things that we expect our caregivers to do? Have we become lazy in cleaning up after ourselves, relying on others to do it when we are capable? Are we helping that rubber band to snap?

As someone with Parkinson’s disease or any other chronic illness, it’s important to be aware of how caregivers are doing, if possible. Do they seem tired or worn down? Do you find yourself being short with them? Impatient? Has it been a while since you thanked them for all they do? Do you encourage them to go out and do something for themselves, such as taking a walk, eating lunch with a friend, or getting a massage? 

Some of us may be in a place where we need someone full-time. If that’s the case, it may be challenging to do more than just be grateful, patient, and thankful. In some relationships, that may be all that is needed for a caregiver to feel appreciated. Sometimes, all a caregiver needs to feel refreshed, even if for a moment, is a sincere “Thank you.”

***

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 Caregivers Need Attention, Too appeared first on Parkinson’s News Today.

The CHRONDI Creed: A Guide for Parkinson’s Warriors

CHRONDI Creed

The challenges of any chronic disease require the mental attitude of a warrior. Like the code of the samurai, the CHRONDI Creed is both a guide for battle and for living.

CHRONDI is an acronym from the first letters in the words chronic disease. The letters stand for each part of the creed as follows: C – compassion, H – happiness, R – rehabilitation, O – others, N – nature, D – death, and I – individuality.

Following is the CHRONDI Creed and its self-affirming dialogue. This is followed by a description of each self-affirming statement in this chronic disease warrior’s creed.

C – Compassion: I will act compassionately toward others and find gentleness toward self.

H – Happiness: I will seek the inner bliss of happiness that is not material in nature.

R – Rehabilitation: I will apply courage and mindfulness to my part in fighting the disease.

O – Others: I will genuinely communicate to others my experiences and maintain an attitude of gratitude for their help.

N – Nature: I will take time to embrace nature and all its beauty.

D – Death: I will find the courage to face the terror of “death” (loss) and not let it control me.

I – Individuality: I will continue to express my individuality and my purpose, beyond the disease.

These CHRONDI Creed statements are short “I” statements that not only can be self-affirming, but also they can change how a disease affects one’s life. If these statements become an inner dialogue, a way of thinking and acting, then they can contribute to quality of life.

Compassion as a way of thinking and acting is the foundation of the CHRONDI Creed. It is a state of being that is expressed both externally and internally. In the face of chronic disease, this is certainly difficult. But it doesn’t have to be perfect saintly compassion. It can start with small steps, such as taking the time each day to do something for someone else. In addition, this sense of a gentle kindness can be applied with a kind word to self, such as: “You did well today.”

Happiness is not tied to material things, although it may appear to be. Rather, happiness is tied to an internal state of being often connected to events, not possessions. We are happy because we feel happy. A state of bliss can accompany times when an event generates ecstasy — a bliss of happiness. Happiness is an important part of well-being in the face of chronic disease. Returning to the bliss can be as simple as finding things we enjoy and taking time to laugh out loud.

Rehabilitation means that we will do our part to support all treatment modalities that are used to fight the chronic disease.

The term others stands for all relationships in our lives. The statement is a promise to speak in an authentic manner with a sense of gratitude.

Nature, and all its beauty, when incorporated into life can make a difference in our well-being. A stroll through the woods or a park while maintaining a quiet mind can add to our quality of life. Gardening is also therapeutic.

Death” has quotes around it because it refers to the death of those things the disease has taken and will continue to take. There is “terror” in facing this “death.” Terror management takes courage and practice to find a calm center in the middle of the storm.

Expressing individuality is balanced against the time used by the chronic disease, the thought and emotion that the chronic disease consumes. Find your inner voice, your unique identity, and your purpose. Let that light that is you continue to shine forth.

The CHRONDI Creed is a list of statements I have used to help me as a warrior against the ever-worsening effects of Parkinson’s disease. Not for a single day can I achieve a level of perfection with all aspects of the creed. Perfection is an illusion, perhaps a nightmare. Rather, I hold these statements as an inner dialogue, a path to follow, a gentle guide for living. It is in this way that the CHRONDI Creed improves my quality of life.

How does the CHRONDI Creed sit with you?

***

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 The CHRONDI Creed: A Guide for Parkinson’s Warriors appeared first on Parkinson’s News Today.

Intimacy Can Be Challenging with Parkinson’s Disease

intimacy

Sherri Journeying Through

The other day, my husband told me he felt alone. Then he said he felt distanced. How could that be? We are together almost every day, 24/7. But being together and being together are very different, especially when it comes to having Parkinson’s disease.

This disease has many symptoms, of which tremor is the most prominent. Other symptoms are not often discussed, particularly depression. Another that I will discuss in this column is intimacy difficulty. 

Most people with Parkinson’s are aware that intimacy can be an issue for many reasons. One may be an unintentional lack of interest the person with PD may not even be aware of. Another may be pain or discomfort. Yet another may be the inability to “perform.” Any of these reasons can disrupt the relationship, sending messages of rejection or appearing to indicate the partner is undesirable and even unloved. 

First, let me say that, whether you’re the person with PD or the partner, you are not alone. I, too, struggle with this subject for many reasons. I can feel inadequate in many ways, but I didn’t realize I was inadvertently making my husband feel distanced and alone until the other day when we had a heart-to-heart talk.

According to the American Parkinson Disease Foundation, “From lack of sexual desire to low libido to difficulties with orgasmic functioning, this chronic, progressive, neurological disease can impair your sexuality in one way or the other.” The Michael J. Fox Foundation adds that “as many as 70 to 80 percent of those with PD experience sexual dysfunction.”

Dealing with bradykinesia, or slowness of movement, and rigidity can become an issue in a relationship. Symptoms such as tremors and dyskinesia also can contribute to dysfunction and leave one or both partners feeling inadequate.

This also plays out in everyday signs of affection such as hugging, kissing, or holding hands. The person with Parkinson’s can appear aloof to the need for affection and leave a partner feeling more distanced with each day. Before long, both are wondering why the other has stopped finding them attractive and don’t want to be with them sexually anymore. I can’t help but believe that the sad stories I have heard about spouses who have left their partners with Parkinson’s disease are more likely due to a lack of communication than just having the disease.

It’s hard to overcome feelings of inadequacy when they are kept bottled up and aren’t talked about. The first person to talk to about how you’re feeling is your partner or spouse. A frank and honest discussion about the effects of Parkinson’s on intimacy and how to overcome it in everyday life is critical. It might mean an intentional hug in the morning or time set aside only for conversation. (This does not include talking while watching the television.)

Speaking of television, the other day, I was watching a show and at the end, a man proposed to his girlfriend. Of course, she said yes — it was a Hallmark movie, after all. Then the guy said, “I hope the magic never fades.” 

None of us wants the magic to fade, especially if we have Parkinson’s. It’s taken so much already. We need to keep communicating with each other, no matter how hard it may be at times. It’s those times that bind us together more tightly, and the tighter we hold each other, the greater the magic will be. 

***

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 Intimacy Can Be Challenging with Parkinson’s Disease appeared first on Parkinson’s News Today.

Parkinson’s Disease Is a Silent Thief

marriage

Sherri Journeying Through

I read somewhere that Parkinson’s disease robs people of who they were, who they have been, and the person others have known. It affects marriages, too. I read this on the tailcoat of writing about Parkinson’s and the role it can play in the intimacy of marriage.

It’s downright hard living with this little monster. One tries to maintain a sense of normalcy, but that is often difficult when medications decide to “turn off” and stop functioning; when tremors won’t cooperate so a person can write their own name; or when fingers won’t move to tie shoes, button a shirt, hook a bra, or buckle a belt. Put all the physical frustrations together with the cognitive ones, and it can produce one frustrated spouse — either the patient or the caregiver, or both.

Parkinson’s is a thief, indeed. It may rob the person who actually has Parkinson’s, but we also need to remember that it robs the caregiver, too.

I have read or been told many times about a partner of someone with PD who decided to leave the relationship and call it quits. Is that fair? No way. Especially if they had repeated those infamous words, “Till death do us part.” But realistically, it’s not fair for either party. It’s not fair for the one with PD or their partner, who finds themselves having to care for a spouse in ways they hadn’t anticipated in the “happily ever after.”

Life can seem unfair. People change with or without a disease. They bottle things up and refuse to talk about whatever is ailing them, eventually making things appear far worse than they really may be. They think the only way to be free from the perceived culprit that vies for their happiness is to turn around so they don’t have to face it anymore. The problem? They often don’t head into anything better. 

A key component of a good marriage is communication. When dealing with a chronic illness, it is even more important. It’s critical for both partners to talk about how they feel and how the disease affects them.

Following are some suggestions on how to do that:

  •  Take time out regularly to talk to each other. Find a neutral spot to do it. 
  •  Turn off the television for one hour a day and read to each other, play a game, or do a puzzle, if possible.
  •  Bring back dating in your relationship. If you are unable to go to a coffee shop or some other place easily, set a regular time each week to gather at the kitchen table for coffee and cookies.
  •  Sit out on the front porch and watch people.
  •  Hold hands.
  •  Try to have a greater understanding of each other. Get some counseling to get through the tough times.

Don’t give up. There will be better days, better moments. Those are the times we live for, the times that make us want to hold on.

When I was married 39 years ago, my pastor told me that when he married couples, God tied a knot in the relationship, and the harder we pulled against one another, the stronger and tighter the knot would become. Parkinson’s is one thing in our marital relationships that can tighten that knot — if we hold on and let it.

***

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 Parkinson’s Disease Is a Silent Thief appeared first on Parkinson’s News Today.

Finding Words to Describe Parkinson’s Pain

pain

Parkinson’s disease (PD) pain is unique, so finding words to describe it is difficult. Not all those with a diagnosis experience pain. But for some, like me, pain is the major, disabling symptom. It is important to find words that describe the pain experience as clearly as possible. There is no “grin and bear it,” nor is this “a pity party.” Instead, this is a search for accurate articulation of the pain experience to help maintain quality of life.

Pain may be an early symptom of PD, according to a study presented at the 2018 World Congress on Parkinson’s Disease and Related Disorders titled “Pain: A marker of prodromal Parkinsons disease?” The American Parkinson Disease Association published research that supports the connection of pain with Parkinson’s, suggesting that if the pain is relieved with dopaminergic medication and the patient has a pattern of painful sensations that correlate to “off” episodes, more credence can be given to the idea that the pain is PD-related.

PD pain can resemble pain from other disease processes, especially as the patient ages and faces a multitude of other pain-causing conditions such as arthritis, spine degeneration, poor muscular conditioning, and such. In my case, PD pain is distinguished by the following:

  • The progression of body pain correlated with the progression of the disease over time.
  • Levodopa, a dopaminergic therapy, successfully reduces the pain.
  • The pain is worse during “off” periods.

My PD pain also has a particular characteristic: stinging (sometimes knife-jabbing), irritating tingling, burning, and muscle heaviness with increased pain on movement. This pain happens over large regions of the body and varies in severity. At its worst, it can last several days and reach level 7, inducing spontaneous tears.

PD with episodic chronic pain is disabling in several ways. First, high levels of pain obstruct clear thinking. Second, high levels of pain induce the fight-or-flight response, which interferes with emotion management. Third, the amount of energy necessary to manage it is very tiring (even more so in the face of the deep fatigue associated with PD). Chronic PD pain entails much more than body symptoms.

Parkinson’s pain is a total experience that touches thoughts, feelings, and relationships. Even when it’s a struggle, finding the words to describe pain experiences is imperative to maintaining quality of life in the face of a difficult diagnosis. Finding the right words helps one communicate the pain experience to care providers, family, and friends — a network of relationships that help form the foundation for quality of life. By communicating the pain, those close to me are more understanding of why I act the way I do, which helps to maintain those relationships.

Over the years, I have watched my PD progression. I have taken the warrior stance to do all I can to slow the progression. My hardest battle is with the total experience of chronic PD pain. Large blocks of time disappear into the fog of war. Over time, I have learned the importance of communicating about the pain daily, sometimes multiple times a day. My partner asks, “Where are you today?” I will say, “I’m at level 5,” followed by a quick mention of the most bothersome symptoms. In the past, I kept track of the pain levels throughout several months to create benchmarks. This is all part of finding the words to describe the Parkinson’s pain experience.

I have been a “communicator” most of my life, but it remains a struggle to find words that describe the unique character of PD pain. If you experience PD pain, please share your descriptors in the comments. Together we may find a common dialogue that will help others.

***

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 Finding Words to Describe Parkinson’s Pain appeared first on Parkinson’s News Today.

Preparing for a Parkinson’s Hospital Stay

hospital stays

Sherri Journeying Through

Sooner or later, nearly all of us make a trip to the hospital for one reason or another. Just because you are placed in the hands of a capable physician doesn’t necessarily mean you will get the best care, especially if you have Parkinson’s disease. Following are some pointers to keep in mind for that emergency (or scheduled) trip to the hospital.

  • Keep an updated list of medications with you or make sure a caregiver knows where to find the information. Be sure the dosages are listed.
  • Bring someone who knows you well so they can communicate effectively with the staff on your behalf in case you’re unable.
  • Have a list of medications to avoid due to Parkinson’s disease.

Many patients are unaware that some common medications used for conditions such as headaches or gastrointestinal issues may block dopamine. Such medications have been associated with parkinsonism and the worsening of Parkinson’s disease.

Neuroleptics are used to manage symptoms of many psychiatric disorders. That can be a good thing if you need antipsychotic medication. However, for a person with Parkinson’s disease, their use can be life-threatening. 

Among the medications to be avoided are Compazine (prochlorperazine), Phenergan (promethazine), and Reglan (metoclopramide). Other meds, such as reserpine and tetrabenazine, may worsen Parkinson’s disease and should be avoided in most cases.

Having a list of forbidden meds could prove to be as valuable as your list of Parkinson’s meds. 

  • If you had deep brain stimulation surgery and have a rechargeable battery, it is important to bring your battery pack with you to be safe.

Hospital stays for Parkinson’s patients aren’t really all that different than for those without Parkinson’s. However, it’s important to remember that neglecting to discuss your drug regimen could be problematic. If you don’t neglect to do those two things, as a Parkinson’s patient, you’ve done what you can do to have the best stay possible. Enjoy that scrumptious green Jell-O!

***

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 Preparing for a Parkinson’s Hospital Stay appeared first on Parkinson’s News Today.

My PD Frustration Consists of More Than Only Symptoms and Treatments

frustration

You don’t have to be positive all the time. It’s perfectly okay to feel sad, angry, annoyed, frustrated, scared and anxious. Having feelings doesn’t make you a ‘negative person.’ It makes you human.” –Lori Deschene

As many people with Parkinson’s will attest, both Parkinson’s disease (PD) symptoms and finding the right treatment to alleviate them can be extremely frustrating.

The perception

Just as frustrating for me is that everyone thinks I am fine. Since I have no tremors, there are no obvious symptoms. Most well-meaning, healthy people either tell me I look great or that they have the same issues as me — cognitive decline, balance, poor fine motor skills, slowness of movement, and fatigue.

The truth

I struggle to maintain balance and must consciously avoid walking into furniture. My body, especially on the left side, does not always listen to me when I tell it to do something. Trying to maintain focus to do this is draining in itself. I also feel weak inside and I am always extremely fatigued. It is an exhaustion that no amount of sleep or rest can diminish.

A glimpse into my frustration

To help my fine motor skills, I have taken up ukulele lessons. I never played any instrument in my life, so I have no muscle memory to call on. The left hand and fingers play a huge role in learning how to use this instrument.

Recently, I had a meltdown in one of my lessons. My left fingers were not listening to me while trying to play some chords. The instructor was very patient, but I don’t think he understood the extent of my struggles. I was trying to play a G chord, which requires positioning three fingers from my left hand on various frets. These fingers would not cooperate and they just froze. With all the energy I expended trying to get my fingers positioned, I worked up a sweat.

Finally, so full of despair and frustration over what I have lost, I just broke down in tears. I can no longer control my body.

Empathy

The frustration continues on many fronts for me: the symptoms themselves, trying to find something to help treat my symptoms, and well-intentioned people not comprehending what I struggle with daily. Many years before I was affected by this disease, a friend of mine was diagnosed with PD. I could never understand why it was so hard for her to put on a seat belt.

Now I know.

I have a form of Parkinson’s disease, which I don’t like. My legs don’t move when my brain tells them to. It’s very frustrating.” –George H. W. Bush

***

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 My PD Frustration Consists of More Than Only Symptoms and Treatments appeared first on Parkinson’s News Today.