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Do You Really Want to Know What Your Future Holds? 

future, progressed, sleep, soft voice, wish, fires, silent symptoms, marriage, tasks, bucket lists, forgetfulness

“My dad’s neurologist is transparent and compassionate. He is thorough and truthful. If yours is not, I highly suggest finding one who is.”

In the introductory sentences, the caregiver says that her dad has a great neurologist. She then recommends that you find another neurologist if yours is lacking. This was a response to a question posed that went something like: “Did your neurologist tell you how bad this disease would get? Did they tell you how debilitating it could be?”

Some will answer “yes” with as many others answering “no.” The biggest problem in finding an exceptional neurologist is that there aren’t many around. To make matters more difficult, what we really need as Parkinson’s patients is a movement disorder specialist and they are even more difficult to come by.

When I first began my Parkinson’s disease journey, I had the best neurologist I could have hoped for. But times change. After 14 years my doctor moved on, and it was time for me to let go and move on myself. 

Looking at the question posed above, I would have to answer “no.” My first neurologist, who happened to be a movement disorder specialist, didn’t tell me how debilitating Parkinson’s disease could be. Neither did my second, third, fourth, or fifth neurologist/movement disorder specialist. They all were focused on the present — what was going on now, not what might take place. I am not so sure that I would have wanted them to tell me. 

For one, my thoughts were already taking my fears to a whole other realm. I didn’t need my neurologist to assist me further into the deep dark, thank you very much. I was doing quite well getting there on my own. 

Secondly, and maybe more importantly, doctors aren’t gods. They have no magical powers. They don’t have the ability to tell your future. They personally can’t tell you, with 100 percent certainty, how far down the road your disease will take you. They can make guesstimates based on their experience treating other patients. We think we want them to tell us what our future holds. Or do we?

In some cases it might be good to know how debilitating this disease can be or how bad we may get. However, I cannot think of one reason why I need to know, other than that it may enable me to “prepare.”

Why give news about something that potentially may not come to pass? We don’t all end up in a wheelchair, nor do we all have tremors or lose our balance. Some of us will, but then again, some of us won’t. We don’t know which of us will have to deal with what, so why borrow trouble from tomorrow when today has enough troubles of its own? 

It is good to prepare for the future but not get carried away with where it might take you. Be in the here and now, enjoying each moment of each day, and begin with today.

Some may say I have my head in the sand. I don’t think so. I know very well what could come my way and probably will come my way. But I choose to live hopefully, one day at a time, for I would rather be hopeful than hopeless.

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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 Do You Really Want to Know What Your Future Holds?  appeared first on Parkinson’s News Today.

The ABCs of Parkinson’s: ‘I’ Is for Invisibility

Sherri Journeying Through

A continuation of the “ABCs of Parkinson’s” series.

When people hear Parkinson’s disease (PD) mentioned, their memory likely turns to thoughts of Michael J. Fox or someone who shakes all the time. Their memory would serve them well. However, if that is the only thing they think of at the mention of PD, their memory needs more input.

Parkinson’s includes shaking, involuntary movements, rigidity, a stone face, an awkward gait, and other outward signs. What most people without PD aren’t aware of is that the disease is also known for invisible symptoms. Because of its invisible symptoms, it is classified as one of many invisible illnesses along with diabetes, multiple sclerosis, rheumatoid arthritis, and more.

Many patients aren’t even aware of some invisible symptoms that are prevalent with PD until they’re diagnosed, causing extra anxiety over how to deal with all that’s happening. Based on stories from others with PD, I would even say some doctors are even unaware of some of the signs. That is one reason it is extremely important to find a movement disorder specialist (MDS) as soon as possible. A neurologist is good, as they’re specialized in a certain niche of medicine. An MDS is better, having gone a step further and specialized within the niche of Parkinson’s itself.

Some commonly known invisible signs are the loss of smell, handwriting changes, and fatigue. Some lesser-known signs are internal tremors, rigidity or stiffness, nightmares and difficulty sleeping, restless leg syndrome, hallucinations, anxiety, depression, poor balance, inability to get comfortable when sitting or lying down, memory problems, apathy, incontinence, constipation, drooling, and more.

Parkinson’s may appear invisible, but its symptoms are undeniable in the patient. Someone with PD may appear to be doing fine, but just ask them what’s going on beneath their skin. All may not be as it appears.

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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 The ABCs of Parkinson’s: ‘I’ Is for Invisibility appeared first on Parkinson’s News Today.

Excellent Choices for Parkinson’s Disease Care

While searching for a movement disorders doctor, I happened upon a government listing for Parkinson’s Disease (PD) Centers of Excellence, which fascinated me.
According to the Parkinson’s Foundation, PD Centers of Excellence deliver care worldwide to more than 127,000 patients. The centers “advance research to improve the lives of everyone with Parkinson’s treated at centers and beyond, and for future generations.” They also “provide patient education programs, community outreach programs and specialized Parkinson’s training for healthcare professionals.” The movement disorders team at each hospital must fulfill a list of criteria, which in turn leads to these specific centers being recognized by their medical peers as “leaders in PD care.”
The Parkinson’s Foundation says that folks from all the centers come together at least once a year to bring the latest information or offer updates on care initiatives and research. Each center is required to be recertified every three years, in a process that includes looking at the accomplishments of each center.
I was amazed. The patients who can see a movement disorder specialist in one of these centers must be so well taken care of. I think one of the main reasons is that there are accountability and integrity within these organizations. What does that mean to us as patients? We are better cared for, and the care we receive should be, according to their mission, top quality.
I happened upon a Center of Excellence because one of my doctors was a part of one. I can vouch for the fact that they truly exemplify “excellence.”
If you are not satisfied with the care you are receiving, feel your medical team may not be up to date with the latest care for you as their patient, or you just want to see if a change in care is warranted, get in touch with one near you (see the listings below). It’s definitely worth the call and maybe even the drive.
Centers of Excellence in the United States
Arizona
– Barrow Neurological Institute, Muhammad Ali Parkinson Center
California
– University of Southern California, Parkinson’s Disease and Other Movement Disorders Center
– University of California, San Francisco, Parkinson’s Disease Clinic and Research Center (415) 476-9276
– The Parkinson’s Institute and Clinical Center, Sunnyvale, (408) 542-5646
District of Columbia
– Georgetown University Hospital, (202) 444-2333
Florida
– University of Florida, Parkinson’s Disease and Movement Disorders Center, Department of Neurology, (352) 273-5550
– University of Miami, Miller School of Medicine, Parkinson’s Disease and Movement Disorders Center
– University of South Florida, Parkinson’s Disease and Movement Disorders Center, (813) 844-4547
Georgia
– Health Sciences University, Department of Neurology, (706) 721-2798
Illinois
– Northwestern University, Parkinson’s Disease and Movement Disorders Center, Chicago, (312) 503-4397
– Rush University Medical Center, Chicago
Kansas
– University of Kansas Medical Center, Parkinson’s Disease and Movement Disorder Center, (913) 588-7179
Kentucky
– University of Louisville, Movement Disorder Program, (502) 852-3655
Maryland
– Johns Hopkins Medical Institute, Parkinson’s Disease and Movement Disorders Center, (410) 955-8795
Massachusetts
– Massachusetts General Hospital, Wang Ambulatory Care Center, (617) 724-9234
– Beth Israel Deaconess Medical Center, Parkinson’s Disease and Movement Disorders Center, (617) 667-2699
Minnesota
– Struthers Parkinson’s Center, (952)993-5214
New York
– SUNY Downstate Medical Center/Kings County Hospital, Parkinson’s Disease and Related Disorders Clinic,

Source: Parkinson's News Today

Who’s on Your Team?

team

Sherri Journeying Through

According to Wikipedia, a “team is a group of individuals working together to achieve a goal.” But a “group does not necessarily constitute a team.” Teamwork is defined as “the collaborative effort of a team to achieve a common goal or to complete a task in the most effective and efficient way.”

It is essential to have an efficient team when you are fighting a chronic illness. You need family and friends, of course, but when you have Parkinson’s disease (PD), what else are you looking for in terms of medical help? The most obvious answer might be a neurologist, given that PD is a progressive disease of the nervous system. But finding a movement disorder specialist (MDS) in your area also would be highly beneficial. 

A movement disorder specialist is a neurologist who has received additional training in Parkinson’s disease and other movement disorders. They tend to be more up-to-date with the latest treatments, research, and studies. They can be more knowledgeable than a neurologist (in terms of movement disorders, given it is their “specialty”). If you find a good MDS (or neurologist, for that matter), they are worth their weight in gold, and your travel time.

Of course, you’ll want to keep in close contact with your general practitioner (GP), also known as your primary care doctor. What you discuss with your neurologist will more than likely be of importance to your GP, so they can coordinate your overall treatment for the best results.

You may eventually need physical and speech therapists. A physical therapist can help with mobility, rigidity issues, and pain, and this practitioner can help you to slow the progression of your disease. An occupational therapist deals more with the day-to-day tasks that a person with Parkinson’s may be struggling with at their workplace, and getting dressed (buttons, zippers, shoelaces, writing, and more). 

Speech therapists (or speech pathologists) treat speech, language, swallowing disorders, and more. This type of therapist is beneficial if you are having problems swallowing or speaking. You may benefit from seeing a psychiatrist or a psychologist if you feel you are struggling with cognitive issues or depression.

Good friends and loving family members can be the most valuable players on your team as they encourage you to keep going, take time to sit, talk with you, or take a walk with you. Together, as a team, you will play your best at this game of PD if you and your team are headed toward the same goal.

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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 Who’s on Your Team? appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

Noticing the Signs of Parkinson’s Disease in a Loved One

signs

Sherri Journeying Through

If you were to go to a Parkinson’s disease website, you’d probably find a post on signs and symptoms of PD. The problem is that it can be hard to notice the signs if you are the one with Parkinson’s disease. You may have grown so used to the symptoms that you no longer take them as something serious.

I’ve written this post for loved ones who might have a sense that something isn’t quite right with the one they love. It is a list of early signs you may notice before they do, and how you might be able to help them.

Most people notice tremors as the first symptom. However, did you know that there are other signs that someone may have Parkinson’s disease? Signs that are often overlooked even by medical doctors?

On one of my earlier visits to my neurologist, I learned that one of the very first signs of PD is depression. There was no reason for me to feel down at times like I did. However, as there are many other reasons for a person to feel down or depressed, don’t jump to conclusions that your loved one has PD. For a confirmed diagnosis, several signs or symptoms must be present. A diagnosis of PD has never been made purely because a person is depressed (that I have heard of anyhow).

There is a list of symptoms a movement disorder specialist will look for in making a correct diagnosis of PD. Shaking can be caused by other things such as a head injury, resting tremors, overextending yourself physically, prescriptions you may be taking, hypoglycemia, and more.

I remember working in my garden several years ago and not being able to smell the flowers anymore, and I didn’t understand why. Can you guess why? Yep. Little Monster took my sniffer. Every once in a while my ability to smell will resurface, and I get a good whiff of something.

Does your loved one seem to be dragging one of their feet when they walk? Are they shuffling slightly? Has one of their arms lost its swing when they walk? Do they seem stiff in their movements? You have an objective perspective and may notice these things sooner.

No one who is happy or joyful likes to be asked, “What’s wrong with you?” That can happen with an early sign of PD known as the “masked face.” Why “masked” face? Because the facial muscles have tightened and people with PD have a harder time smiling or showing emotion.

Another symptom that I struggle with is my voice getting softer, making it hard for others to hear me. I had a soft voice to begin with, and when it got softer it made it more difficult to converse. Speech and vocal exercises can be done to strengthen the vocal cords if the problem is due to PD.

If you think someone you know might have early signs of PD, you might want to approach them as if they hadn’t noticed their symptoms. For example, don’t stare at them when they are shaking and ask, “Do I make you nervous?” Ask them if they’ve noticed that their hand shakes slightly. If they bring it to your attention, encourage them to have it checked out. If they are concerned and you act like it’s nothing, especially when you notice it, coupled with other signs related to early PD, they will feel silly and may think they are imagining things.

It takes several signs or symptoms to make a diagnosis of Parkinson’s disease, and this should be done by a neurologist, or better, a movement disorder specialist. Everyone lives with PD differently. Some are affected more by tremors, some by stiffness, some by pain, and some deal with it all.

If you are a person with PD, what were your first signs that “all was not well?” Did you recognize the signs first or was it a friend or family member?

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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 Noticing the Signs of Parkinson’s Disease in a Loved One appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

If You Hear ‘It’s Just Parkinson’s,’ You Need a Different Doctor

doctor

Sherri Journeying Through

Every once in a while I watch an old episode of “House.” The television show is about a cynical, genius doctor (Dr. House) who mentors three other physicians. They all work closely with one another as a team to solve the most complex of cases.

The last episode I watched had a patient, a young woman, who was suffering from hallucinations. It didn’t surprise me when House walked into the classroom where his new group of students awaited him. He arrogantly stood at the top of the stairs and announced his diagnosis: “It’s just Parkinson’s disease.”

It was said in his usual self-satisfied, prideful, egocentric way.

“It’s just Parkinson’s disease,” I repeated to no one in particular. “That’s all,” I added, again to no one in particular. And that’s what angers, saddens, and frustrates patients and their caregivers, because it is said with no concern for the person in question. It’s like saying (in a “House” kind of way):

  • He’s going to be tripping everywhere he walks, and then it’s the wheelchair for him. Then he’s going to be in our way.
  • She’s going to spend countless nights walking the floor due to restless leg syndrome or the disease itself keeping her awake. And dystonia may seize her night hours, or frightening nightmares might awaken her at least every 60 minutes. But hey — it’s just Parkinson’s disease.
  • He’s going to lose his smile and look grumpy or sad all of the time, but hey, it could be worse.

There are doctors like that. Insensitive. Cocky. Egotistical. But some doctors are super-smart, brainy geniuses, and masterminds. They are in it — stay in it — because their heart is bigger than their ego. They are in it to bring light into a patient’s dark world. They are in it to make the saying, “There is light at the end of the tunnel,” more than a quote. They work to make it the truth.

My movement disorder specialist of 14 years said to me at my last visit that I had never complained about having Parkinson’s disease or asked, “Why me?”

He asked me why. There are a few reasons. I told him I get frustrated when I hear the phrase, “I have Parkinson’s. It doesn’t have me.” I told him the fact is (at least for me), it does have me — from sunup to sundown and every minute in between. However, I can choose to live with hope and walk or run toward the light at the end of the tunnel, or I can choose to cower in the dark. That’s where my neurologist comes into play.

He gives me hope by listening to what’s been going on since I last saw him, and he sends me off encouraged by his words. He could take an attitude of “It’s just Parkinson’s disease” and send me home hopeless, stuck in a tunnel of despair. He never has.

If any doctor makes you feel more discouraged than you already are, if he belittles you, or shows no concern while you struggle with a chronic disease, you need to find a different doctor. You’re facing and fighting more than “just Parkinson’s disease,” and you’re going to need the best team you can find to get yourself through it, starting now.

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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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Source: Parkinson's News Today

Foundations Announce Latest Centers for Training Parkinson’s Specialists

Parkinson's specialists

The Michael J. Fox Foundation (MJFF) and the Edmond J. Safra Philanthropic Foundation recently awarded five new medical centers with funding to train clinician-researchers working with Parkinson’s disease and other movement disorders.

The five centers, awarded at the fourth round of fellowship funding, will receive financial assistance through a program, the Edmond J. Safra Fellowship in Movement Disorders, designed to have 20 new movement disorder specialists graduated by 2021.

The fellowship was launched in 2014 by the two foundations and it awards funding annually to five international academic medical centers to train one new movement disorder clinician-researcher (respectively) for two years.

The latest centers awarded are: Emory University, in Atlanta, Georgia; Northwestern University, in Chicago, Illinois; Radboud University, in Nijmegen, The Netherlands; University of Lübeck, in Lübeck, Germany, and University of Pennsylvania, in Philadelphia, Pennsylvania.

Each institution must now identify a fellow who will begin two years of training in July 2019. Fellows work directly with movement disorder specialists who serve as mentors to learn the skills necessary for a career as a clinician-researcher.

“This program signals our commitment to Parkinson’s research and care, and we’re honored to collaborate with our longtime partner and supporter the Edmond J. Safra Foundation,” Todd Sherer, PhD, CEO of the MJFF, said in a press release. “Building an international network of movement disorder specialists is critical to driving research momentum and better addressing the considerable care needs of those living with Parkinson’s.”

The foundations announced the five winners at the New York City “Fellowship Symposium Day,” an event created to unite fellows and mentors to share research progress.

The special day was attended by 25 Edmond J. Safra fellows and fellowship directors and by Lily Safra herself, chairwoman of the Edmond J. Safra Foundation and MJFF Board member since 2001.

Graduating fellows in the Class of 2018 talked about their experience throughout the day and at a special luncheon, also attended by Ms. Safra.

“This program is serving a critical need,” said Safra. “More expertly trained movement disorder specialists means more doctors to care for people with Parkinson’s and lead research toward better therapies and a cure,” she said.

The Edmond J. Safra fellowship program addresses the growing need of being able to see a movement disorder specialist. These physicians, who are small in numbers, combine training in diagnosing and treating patients, with knowledge and experience in balancing complex medication regimens, allowing for  integration of the latest therapies.

When also trained as researchers, movement disorder specialists can use insights from their patients to inform studies toward improved understanding of disease and treatments.

With Parkinson’s becoming a growing problem — 12 million people are estimated to be affected worldwide by 2040 — care and continued research for this population is critical.

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Source: Parkinson's News Today

Noticing the Signs of Parkinson’s Disease in a Loved One

Sherri Journeying Through

This is written for loved ones who might have a sense that something isn’t quite right with the one they care about. It is a list of early signs you may notice before your spouse, friend, child, or parent does and how you might help them.

Most people notice the tremors as the first symptom of Parkinson’s disease (PD) in someone they know. However, did you know that there are other signs that are a clue that someone may have PD? Clues that are often overlooked, even by medical doctors?

On one of my earlier visits to my neurologist, I learned one of the first signs of PD can be depression. Looking back, it was true for me. There was no reason for me to feel down or anxious, but I did. I talked to my general practitioner about it, and she was the one who first put me on an antidepressant. There are many other reasons a person can feel depressed, so don’t jump to conclusions that the one you’re concerned about has PD. For a diagnosis to be confirmed, several symptoms must be present. A diagnosis of PD isn’t made solely because a person is depressed.

So, what if they have tremors and seem down? Again, there is a list of symptoms your neurologist will look for in making a correct diagnosis of PD. Adding tremors to the mix with depression will not necessarily mean Parkinson’s disease.

Is your mate having a hard time sleeping? Restless? Tired during the day from lack of a good night’s rest? Having vivid dreams? Nightmares? Acting out while dreaming? All on a regular basis? If you are married and find yourself wanting to go to the guest room frequently because your spouse is, how shall I put this, too active in bed? It may be a cause for concern. Sleep disorders can be evidence that something may be going on.

Parkinson’s can snitch your sniffer, so your loved one may not smell things as well or at all. The ability to smell may return for the short-term at random times, though.

PD can also cause a person to drag their foot or have a slight shuffle when they walk.

No one likes people to enter the room and ask, “What’s wrong with you?” But that can happen when early signs of PD show — such as the masked face. What is “masked” face? When the muscles in the face have tightened. Because of this, people with PD have a harder time smiling or showing facial emotion. It’s also been called a stone face — showing no expression. You’ve heard the saying, “Don’t judge a book by its cover.” Well, in PD we say, “Don’t judge the mood by the face.” OK, maybe only I have said that. But it’s true.

Another symptom I struggle(d) with is a soft voice. I have a soft voice to begin with, and getting softer only served to aggravate those around me. It also makes for lousy conversation on the part of the person with PD, as no one hears you participating in the conversation, so you end up being constantly interrupted, never able to finish your sentences. Plus, well, you just don’t feel like talking at all.

It takes several signs/symptoms to make a diagnosis of Parkinson’s disease, and it should be done by a neurologist or a movement disorder specialist. It’s important to remember that everyone lives with PD differently. Some are affected more by tremors, some by stiffness, some by pain, and some deal with it all. And some may have some of the signs, but don’t actually have PD. Don’t make your diagnosis. Ask questions until you are satisfied with the answers, and don’t give up. We’re in this together.

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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 Noticing the Signs of Parkinson’s Disease in a Loved One appeared first on Parkinson’s News Today.

Source: Parkinson's News Today