MISPERCEPTIONS

This presentation was given by Joseph H. Friedman MD at the May 29th, 2018 World Parkinson’s Congress

“We all misperceive things. A common example is the sensation that the world is turning after we spin ourselves quickly around and then stop suddenly. It can be so severe that we may even fall down. In Parkinson’s disease (PD), there are a number of misperceptions that may occur as part of the disease, and may seem puzzling to the person with Parkinson’s (PWP) and the family. The misperceptions usually affect the person with PD, but there are misperceptions by others concerning the PWP.”

……I went through the LOUD protocol… but my psyce makes it very difficult for me to shout… I find it exhausting!

“Perhaps the easiest to understand is speech. Some PWP perceive their speech as being louder than it really is. This, of course, increases communication problems, and may contribute to the soft speech of PWP. In most cases of soft speech the patient is aware of the softness, but simply can’t muster the strength to make the vocal cords vibrate adequately, but in some cases, it occurs because the PWP thinks she is talking louder than she really is. The problem can be remedied by teaching them to talk louder than the PWP thinks is “necessary” because it isn’t as loud as it seems to the speaker. These PWP need to talk to the world as if they are all deaf.”

……I totally relate to this next paragraph. I blamed my poor spacial perception on my eyes…and double vision.

“Many PWP do not perceive spatial relationships as they did before the onset of PD. This occurs in a number of settings, and is particularly important for driving. It is not rare for a spouse of a PWP to complain that they are never in the center of the lane, but always to the right, or to the left, or sometimes too close to the car in front. When confronted, the PWP will disagree and confidently state that the car is, in fact, in the middle of the road, even when it isn’t. This occurs because of changes in parts of the brain that process visual input, which causes a distortion in what is perceived as the middle, or up, or down, causing the PWP to argue, because, to the PWP, the car is in the middle, but it really isn’t. It is difficult to convince PWPs of problems such as these when their own personal and repeated experience indicates that they are in the middle of the road. A similar problem occurs in PWP who think they are closer to a chair than they really are so they sit down, and almost miss the chair. Sometimes people will actually miss the chair, and injure themselves.”

…... I don’t use prescription drugs, so I don’t think this next paragraph relates to me.

“One of the most surprising misperceptions concerns dyskinesias. These are involuntary movements that may be fluid or jerky. They may involve any part of the body, face, head, hands, legs or trunk, and cause the person to look fidgety, like they are dancing in place, or uncomfortable. Michael J. Fox suffers from this, so you can see what these movements look like on his TV shows, or you can watch a You Tube video of PWP who suffer from these movements.  These are side effects of long term use of L-Dopa and are very common. They are not uncomfortable, although they may look like they are. The surprising observation is that people with this type of movement disorder, whether in PD or any other condition, often perceive the movements as much less than they really are, sometimes not recognizing that they are present at all. Even more surprising is the observation that when patients look in the mirror they do not see the movements, even though they are present, but when they see themselves on video they are usually quite surprised by how prominent the movements are. For unknown reasons, the brain perceives the movements only when they are not occurring at exactly the same time as they really are, so that the video is perceived accurately, but the live movements are not, even with a mirror. Of further interest is the observation that PWP almost always accurately perceive their tremors.”

……this one really surprises me.

“PWP often feel that they are weak, most particularly in the legs. In a study we performed, 40% of PD patients thought that their legs were weak. Sometimes they felt that their legs were “heavy,” “encased in concrete,” “made out of lead,”, “dead, “ “wooden,” etc. Yet the legs were not weak. The brain perceives the reduced motor control as being weakness, even though the problem is really reduced control.”

…...as mentioned in the Laugh post.

“I have never heard a PWP report that they move less than other people. In fact, PD patients are almost always “akinetic” to some degree. This means that they have fewer spontaneous movements than other people, which is readily seen in the blink rate. PWP blink less than normal people, contributing to their facial “staring” expression. They also swallow less than others, which is why saliva pools in their mouths, leading to drooling. Thus, PWP do not realize that their immobility is a difference between them and others.”

……..and also in the Laugh Post

‘In addition to PWP misperceiving themselves they are also not perceived properly by others. This has not been properly studied but the few papers published on this topic indicate that people, including health professionals, have a more negative impression of PWP they haven’t met based purely on their facial expression, viewing them as depressed, angry, less socially involved, less interested and less pleasant based on how “masked” their facial expression is. These impressions were completely unrelated to what the PWP actually was like. This unfortunate problem may underlie difficulties PWP experience relating to people who don’t know them.”

…….the link to the original post is below:

There are a number of other misperceptions that seem to be more common in PWP than in the general population, and understanding that we all perceive the world differently, and that these differences reflect not only our genetic makeup and our specific experiences in life, but also the changes that take place within our brains as a result of aging or disease processes.

https://www.worldpdcongress.org/home/2018/5/29/misperceptions

Water Challenge

There is a web site that includes lists consequences of being under hydrated as well as benefits of when you are hydrated.

https://www.7daywaterchallenge.com/home-wc

I have a question. I want to enter a challenge, but I do not understand hash tags. Is that a twitter thing?

I figure, why not try to win, when I’m already drinking the water?  When You Start The Challenge You Will Be Entered To Win $100 (USD).

There is a formula: Drink at least 64 oz per day or drink 1/2 your body weight in ounces each day to still qualify. So 1f I weigh 107 lbs / 2 = 54oz.

NOTE: Be sure to space your water intake out evenly throughout the day So I could set reminders on my phone for every 1-1/2 hrs starting at 8 am till 9:30 pm & and drank 5.5 oz I’ll have met my goal. It is so doable.

See my previous post on Hydration

The Challenge Rules AreSuper Easy . . .

1. Join The Challenge By Entering Your Name & Email Above.

2. Join The 7-Day Water Challenge Group on Facebook.

3. Drink At Least 64 oz. of Water Daily*

4. Post Your Results On Social Media Using The Hashtag #7DayWaterChallenge.

ALSO, when enrolling, it asks; “Who invited you to the challenge?” If you want to do it, you can blame me… 🙂 Sue Rosier

Commitment and Consistency

“I still don’t get why people are so surprised that the turtle beat the rabbit over the long run.

Consistent effort no matter how small, sparks magic, fills sails, butters bread, turns tides, instills faith, summons friends, improves health, burns calories, creates abundance, yields clarity, builds courage, spins planets, and rewrites destinies.

No matter how small,” (author unknown)

If you wait for perfect conditions, you’ll never get anything done.

Fox / Parkinson’s 360*

Do you ever feel like “Honestly, toasters come with more instructions than a diagnosis of Parkinson’s Disease “? perhaps the following link will help.

This is a link to a 55 page document produced by the MJFF with ‘real talk for patients and families’ exploring everything from learning the diagnosis, the process of accepting and learning about , deciding when to reveal your diagnosis to others. It covers seven tenents:

  • 1 There is NO “one size fits all” description.
  • 2 Isolation can worsen symptoms
  • 3 Don’t Settle: keep working and make changes
  • 4 Hone your new instinct.
  • 5 Parkinson’s is a non-linear disease
  • 6 Get Engaged
  • 7 Be Prepared

https://www.michaeljfox.org/files/PD360_MJFF_WEB_BOOK.pdf

Hooray for Lance

I love it when grandchildren are able to help out their grandma. Lance helped me with a technical problem today. I couldn’t get my article on progression of symptoms to show up on the front page of my blog, like I envisioned. But he worked his magic. 🙂

BUT… those who have clicked to ‘follow’ my blog, receive my posts in an email… so unless I share the information here, they won’t know to return to the home page. The page title is Transparency

Mht inspirationalv4

Simply Resume

There is a story taken from an episode where Michael J Fox was at a Thanksgiving celebration and an awkward situation arose as his tremors were interfering with his attempt to serve mashed potatoes onto his plate. The hostess finally quips; “Ok, you can have a personal victory later.. right now, we need to eat.”

We need to always find a reason to laugh, rather than have a pity party. We want to view life with optimism. When we fall off the keto wagon and eat a donut… adopt the Dory philosophy, ‘keep on swimming’ or Simply Resume. Besides, optimists are happier & live longer. 🙂

My goal is to provide encouragement, being a spokes person for life..not for the disease. I found some little gems of wisdom (or council):

  • If you have Parkinson’s don’t let pride keep you from asking for help. If it takes a half hour to button your shirt… allow your caregiver the opportunity to take a minute.
  • If you are the caregiver… Ask before you help.
  • As a caregiver, you might ask, “Do you want to talk about this… or just let you know I’m there for you?”
  • When you’ve asked, “How you are doing?” and your Parkie friend says, “I’ve had a rough couple of days…” that means ‘I’m ready to talk about it… don’t gloss it over.’
  • Own the truth.. depression for Parkinson’s may need medical assist. Find someone you can unload emotions on… other than your spouse. (who doesn’t deserve it)
  • What I find encouraging… is when people share their positive experiences.
  • People who survive have a purpose.
  • (Here are a variety of suggestions) * seek for clarity * define your reality * choose joy * don’t focus on yourself * be loving to others * be a role model * to have the peace … give up the need to understand.
  • But you never know when a lay person (or researcher) might come up with a solution.. so don’t roll over and play dead.
  • Be a spokes person for life. Press forward & do what you can.

Our Trials Represent An Opportunity That Won’t Last. Whatever we face in life that seems like a problem or a trial actually represents an opportunity. In this life, we have the opportunity to praise God, and to worship him, in the face of adversity. This takes an act of will, a decision, a certain amount of discipline.

  • If it continues to progress, as the doctors assure me it will, I will fight the good fight of faith with even more joy in my heart. I will not waste the opportunity to show others how to live, fully alive, no matter what is thrown at us.
  • We often reflect… ‘God never said it would be easy… But it will be worth it.’
  •  
  • It Doesn’t Matter. . My continued illness is not an excuse to abandon my faith, it’s an invitation to embrace it. My light and temporary affliction does not matter. Illness is no excuse to abandon faith, it’s an invitation to embrace it.
  • God uses many instruments for healing, and often the instrument is medical science.
  • Sometimes we ask God for an oak tree, and he gives us an acorn. We must steward the acorn.
  • And sometimes we must simply embrace the mystery and accept that we don’t know everything, but affirm that God is still good.

In the movie “Shawshank Redemption”, Andy Dufresne says to his pal Red as they sit in the prison yard, “It comes down to one simple decision. Either get busy living, or get busy dying.”

Each of us is able, today, to offer God the gift of gratitude. Truly, I refuse to waste my Parkinson’s.

I choose to live.

 

 

Procastination – Baby steps

I like this strategy because it nearly makes it impossible to procrastinate. When I look back at all the times I’ve procrastinated, it was always related to getting overwhelmed. When you haven’t even started something, the end result seems a million miles away.

From the blog of Darius Foroux :

“Forming a new habit is hard. I don’t have to tell you that. We all know how difficult it is to live a … healthy life. If it were easy, everybody would do it.”

“We also know that our chance of succeeding is much higher if we start small, right? It’s common sense. “Don’t take on too much in the beginning — you’ll have more reasons to give up.” So goes the advice, which is solid. I’m not going to argue with that.”

“But far too few people actually start small. In fact, I see more people starting big than starting small.”

“Why is that? I think we can get too excited about making a change or doing new things. When we dream about making a change in our lives and start believing in it, the excitement usually takes over. That’s why we end up doing too much too soon.”

“But how can I prevent myself from getting too excited?”

“To be clear, I don’t think excitement is bad. You need energy to make a change. And it’s great to be fired up about achieving something in your life. Always remind yourself that you want to stay fired up. Because when things get hard, we can lose that fire.”

“So when you start forming a habit (writing, working out, reading, eating healthy) or learning a new skill, remember that it should not feel like a challenge. The activity should be easy. If that’s not the case, we all procrastinate — even the most self-disciplined people do that.”

“When you start something new, it’s not about your results. When I started getting daily exercise, I didn’t care what type of exercise. I just wanted to make sure I did it.”

  • Wrote for 4 minutes? Great — you did it.
  • Went for a 20-minute walk? Great — you did it.
  • Read a book for 2 minutes? Great — you did it.

James Clear, the author of Atomic Habits, which is about changing your life by forming small habits, writes about this idea in his new book. I like how he removes all barriers for starting a habit. He writes:

“A new habit should not feel like a challenge. The actions that follow can be challenging, but the first two minutes should be easy. What you want is a “gateway habit” that naturally leads you down a more productive path.”

“Remember, the action itself is not easy. But as James says, the first two minutes should be easy. And what you’ll find is that you can scale down nearly any habit or activity into a two-minute version.”

  • Want to read every day? Read one page.
  • Want to meditate every day? Sit in a meditation position.
  • Want to study for an exam? Open your book.

Bite off too much and “you end up saying, “I give up.” So instead of focusing on the BIG outcome, focus on the SMALL start. Look at what you want to achieve in your life. Then, look at what habits will make that happen.”

“And then what?”

“The goal is not only to get started — it’s to keep going. Nobody wants to read one page a day for the rest of their lives. To me, this strategy is all about getting used to doing something every day.”

“Look, changing your lifestyle is not an easy thing. Let’s say you’ve been living in a certain way for 30 years. What do you expect? That you change overnight? You and I both know that it takes time. So we should change our perspective accordingly.”

“Your first priority should always be to form the habit — something you do regularly. And remember: Habits are not about result. You should only care about what you did today .”

“Life is a competition with yourself — not others. And if you want to win, you must make it easy for yourself.”

 

The Spoon Theory

A recent dialog at “The Invigorated Community” an online group for Parkies or their care givers… the question was posed. “How do you get people to understand the fatigue we experience and why we can’t do everything we used to?”

Mind you, I’m the eternal optomist and believe the therapies I have adopted will give me many years of productive living… but I wanted to share what others have said, to answer the question.

Quote from MJFF “One of Parkinson’s more insidious symptoms is fatigue. This is not your garden variety bone-tired. This is fatigue on a cellular level. Your body is working overtime to accomplish the simplest of tasks: Taking a shower, answering the phone, pouring orange juice. In addition, you may be coping with the combination of possible cognitive problems knows as “Parkinson’s apathy”. These problems include difficulty initiating projects, inability to follow complex instructions, short-term memory loss and difficulty in switching gears midstream.

You can fight Parkinson’s disease apathy by exercising, trying to get regular sleep, taking short naps, and making sure you do not isolate yourself.”

I’d like to share a link from… ButYouDon’tLookSick.com It explains the Spoon Theory… a concept developed by Miserandino and frequently referenced among those with chronic or invisible illness. Many people living with conditions ranging from fibromyalgia to anxiety to depression to parkinsonisms self-identify as “Spoonies” and use the theory to explain their lives to people who may not understand the scope of their illness. (Miserandino’s diagnosis is Lupus)

https://www.youtube.com/watch?v=jn5IBsm49Rk

 

 

On the bright side

So… I have to admit I was disappointed with how our trip to Gainsville went. Basically, the Doctor just wanted to put me on a medication that has bad side effects. When I said, no thank you, he said, “You can just be followed by your primary care doctor.”

So what we did accomplish… They have a base line for my symptoms,,, so If I return in the future, I am in the system. AND he also said, “I would change the diagnosis from Parkinson’s to Parkinsonism.” Because I have multiple symptoms, typical with Parkinson’s, but not the tremors.. plus other symptoms as seen in MSA. There is a test that could be given to determine what parts of the brain are losing the dopamine. But knowing wouldn’t change the treatment. And I don’t desire to have radioactive stuff injected into my veins, anyway.

DaTSCAN is a special technique that provides detailed images of the dopamine neurons (nerve cells) in the brain. The Food and Drug Administration (FDA) approved the use of DaTSCAN for differentiating PD from other conditions in 2011. The patient is given a radioactive agent into a vein.

I asked if I could speak with a dietician, because I am losing too much weight on the Keto Diet, but both dietician’s were in a meeting, so one is supposed to call me. (I’ve made a decision, without her call.) The thinking behind the Keto diet was to get more oil to my brain… and to increase my energy. Sadly, I do not recognize any pick up in my energy level… but when the scale said 107 Lb. this a.m., I decided to add more fruits, beans, etc… to balance my diet more. I’ll still have to say no to products with white flour or sugar, of course. Back to the matra of moderation in all things. I will also continue to focus on the gut health guidelines… Bone Broth, and fermented foods.

The bright side in my day came when I checked the mail. My Aware in Care kit had arrived. I’ll explain what that is, tomorrow.