Neurologist explains symptoms of Parkinson's Disease

The doctor being interviewed explains the hallmark signs of Parkinson's Disease. Also a commenter on the video was really informative - detailing what the "on/off" experience is like, and how unpredictable it is. 

Dr. Tom Pitts, a board-certified neurologist, speaks with NBC's Tom Llamas about questions surrounding President Biden's health. Dr. Pitts has not examined the president, but shares opinions based on video clips of Biden. 

Some common difficulties with speech includes:

• Speaking softly or in a reduced volume
• Using a monotone voice
• Slurring words
• Mumbling
• Stuttering or stammering
• Hoarseness or a strained quality
• Breathiness
• Uncertain articulation

Bradykinesia is a clinical term that refers to slowness of movement, or speed hesitations and halts that occur as movements continue. It can affect voluntary motions, like what you tell your body to do, as well as automatic or repetitive motions. Bradykinesia is a common symptom of movement conditions like Parkinson's disease (PD), and can make everyday tasks difficult.

In Parkinson's disease, hypomimia occurs when a lack of dopamine in the brain prevents facial muscles from working as well as they used to. This can make it difficult to smile, raise your eyebrows, or express your feelings, and can sometimes make it look like you have a blank expression.

In people with Parkinson’s, cognitive deficits may become more severe and impact daily functioning. Similar to slowness of movement (or bradykinesia), people with Parkinson's disease often report slower thinking and information processing (termed “bradyphrenia”)

Fatigue is a non-motor symptom of Parkinson's disease (PD) that can feel like a deep physical tiredness that doesn't improve with rest. It can make it feel impossible to move, as if you have no energy. Fatigue can occur at any point in the course of PD, whether movement symptoms are mild or severe.

SOURCE: https://youtu.be/97ZIHY2QcDI?si=OLA2NXJEep-w9f3-

Read More

PD Quick Tip - Heavy, sleepy eyelids

Suddenly my eyelids feel so heavy, and at the worst times. It's happened when I am just talking with someone-my eyes are closing, eyelids so heavy, I struggle to keep my eyes open. The person I was talking to thinks I'm bored and am really rude.  Was I hypnotized? It's probably the autonomic nervous system taking a break.

Blinking is usually a natural reflex. Parkinson's Disease can cause a person to stare and the autonomic nervous system forgets it's time to blink.   

I started doing an eye exercise to strengthen my eyes and remind my brain to blink. I'm not sure if my ophthalmologist would endorse this technique, but here it is. 

The exercise is 8 steps. I basically look in each direction, hold it for a second and blink. Look in the next direction and repeat.

• Look up and left, blink
• Look up, blink
• Look up and right, blink
• Look right, blink
• Look down and right, blink
• Look down, blink
• Look down and left, blink
• Look left, blink

I repeat this for a minute. Afterwards my eyes feel open and awake.

Read More

PD Apathy is very real

I brought up Parkinson's Apathy to a group last week and was surprised I received a lot more response than I expected. Just knowing 5 or 10 other people also struggle with PD apathy is reassuring and helps me to not feel so alone with my long list of symptoms.

PD apathy is very real. I struggle to accomplish even the smallest tasks and I beat myself up because I have a ton of things that need to get done, all with a high priority. But I freeze up mentally when I think about it. The list grows and months go by on the calendar.

In an ideal world there would be a person who can help someone who's cognitively challenged to do things. Like a "task rabbit" but they are also trained in psychiatry or psychology. Someone who understands we're not being lazy. The neurons just don't connect to accomplish the things we need to do.

I try making lists, then lists of lists and it's not helping.

By the way, I'm calling this apathy but the inability to accomplish things might be another issue. The days pile up, turn into months and years.

How do you deal with the apathy–feeling of being stuck in quicksand, surrounded by a brick wall?

A few suggestions from the group were: 

• Reduce clutter, make neat piles
• Set realistic goals
• Break tasks down into smaller tasks
• ie: Clean Kitchen becomes wash dishes, put dishes away, mop floor, clean cabinets. 
• Remember to take time off! If you're having a bad day, unplug and relax. Don't struggle to accomplish something every day.

I know, It could always be worse.

Read More

Cognitive and Non-motor Symptoms

This presentation feels like it is talking for me.  Joanne Hamilton talks about some non-motor an cognitive issues that I have trouble expressing.

Some of the first symptoms people with Parkinson’s may experience are not visible to others. As Parkinson’s progresses, cognitive and other non-motor symptoms continue to be a significant aspect of living with Parkinson’s. Joanne Hamilton, PhD, ABPP-CN, of Advanced Neurobehavioral Health of Southern California in Poway, CA, explains what to expect and how to distinguish symptoms caused by Parkinson’s from those caused by medications. Her presentation for the Davis Phinney Foundation audience offers hope and practical strategies for understanding and managing cognitive and non-motor challenges.

From the Davis Phinney Foundation for Parkinson's

Read More

PD Fatigue, Apathy and Covid

The Covid plague had a lot of invisible effects on people. Two of the Parkinson’s symptoms that ht me very hard are fatigue and apathy.  If you haven't experienced this combo, it's not easy to imagine having good "on time" when meds are working pretty good and having to decide what you will do during this "on time" window that may close at any moment or stay open for a couple of hours. 

I have a list in my head and on paper of things to do when meds are working. In no particular order: Take a shower, cut my nails, pay bills, vacuum, pick up medication, buy some groceries, reply to email, call a friend or relative, shave, do dishes. While I sit frozen in my body, I also think of huge projects, getting physical therapy, replacing appliances, home and auto repairs and moving to more affordable home. Oh I left out one ingredient. Anxiety. Add anxiety to apathy and fatigue. It's not good. And it is horrible for a spouse / partner / care giver who frequently gets ignored and zero support.

During Covid some people learned, built, discovered. During Covid my PD symptoms grew and my routine was suspended.  Daily walks, yoga, exercise, movement classes and being a volunteer at New York Cares where I helped elderly learn to navigate their computers and the internet stopped. It is very hard for someone with a chronic progressive illness like PD switching gears "just" start new routines.

So I have a new prescription for physical therapy and started going to a movement class. That's 2 things. I'm slowly adding to my weekly goals but it's always a battle with fatigue and apathy.

I'm not sure how many read through this blog but if I can help even one person, it's totally worth it. Post Covid is hard. Writing this blog post this morning was my choice of things to do when my meds are working, "on time" 

Read More

10 Lesser-Known Parkinson's Disease Symptoms

10 Lesser-Known Parkinson's Disease Symptoms

August 28, 2015
from the MJFF Feed

10 Lesser-Known Parkinson's Disease Symptoms

Before you or a loved one was diagnosed with Parkinson's disease, you may have only been familiar with the tremor symptom.

Unfortunately, the disease brings with it a range of symptoms, some visible and many not.

Lack of awareness around certain symptoms can delay diagnosis. For people with Parkinson's, it can sometimes be difficult to tell when symptoms are a part of Parkinson's disease or from something else.

And if you're not aware that something is a Parkinson's symptom, you may also not be aware that it can be treated.

It can be overwhelming to hear about a symptom you weren't aware of yet, but as always, knowledge is power. If you're experiencing a new symptom and you're not sure if it's related to Parkinson's, ask your doctor. It may be another part of a complex disease that researchers are always learning more about.

1. Sleep disorders.Several different sleeping problems can be part of Parkinson's disease, including insomnia, daytime sleepiness and REM behavior disorder.
2. Depression and anxiety. Depression isn't just a natural reaction to a difficult diagnosis. It's also a common symptom of the disease itself.
3. Voice volume. Parkinson's can cause slurred speech and a quieter voice. People with Parkinson's who sing may also find that their musical side is affected, too. A speech therapist, especially through the LSVT LOUD program, can help this symptom. Singing in a choir or on your own can also help strengthen your voice.
4. Smell loss. The majority of people with Parkinson's disease experience some smell loss. Though many people with smell loss do not develop Parkinson's, it seems to be the first symptom for many who do.
5. Cognitive issues. Not everyone with Parkinson's experiences symptoms of cognitive impairment, but they may include memory loss, difficulty multi-tasking or problems concentrating. The symptoms can range from mild cognitive impairment to Parkinson's disease dementia (PDD).
6. Orthostatic hypotension is a drop in blood pressure when changing positions, such as moving from sitting to standing that's also a non-motor symptom of Parkinson's disease. Orthostatic hypotension may cause lightheadedness and dizziness.
7. Dystonia. Both a Parkinson's disease symptom and the third-most common movement disorder, it's characterized by painful, prolonged muscle contractions. 
8. Facial masking. Bradykinesia is a slowing down and/or loss of spontaneous and voluntary movement. You may move more slowly in general or swing one arm less while walking. You may also be able to show less facial expression, which is referred to as facial masking.
9. Fatigue and apathy. Many people with Parkinson's experience these frustrating symptoms. Fatigue can also result from the sleep problems associated with Parkinson's disease. If you struggle with fatigue, tackle it with these tips from our community.
10. Medication side effects. While not a symptom itself, many are unaware of the side effects Parkinson's disease medication can sometimes have. Use of levodopa can lead to dyskinesia, which can be described as smooth tics. 

Dopamine agonists have been linked with impulsive behavior. New data supports more substantial warnings for these drugs.

Read More

Gut Microbiome Changes May Be an Early Sign of PD

New Study Finds That Gut Microbiome Changes May Be an Early Sign of Parkinson's Disease Long Before Traditional Symptoms Appear

The researchers hope these initial findings can help lead to earlier diagnosis (and treatment) of the neurodegenerative disease.

A new study published May 2, 2023 in the journal Nature Communications reveals another possible way we might be able to spot Parkinson's disease early—and even before noticeable symptoms arise.

According to this research, there are noticeable changes in the gut microbiota during the earliest stages of Parkinson's disease, and this may help doctors diagnose and offer targeted treatment before the disease progresses further.

Read article on eatingwell

Read More

Psych issues years before Movement Disorder issues?

My PD history is unlike any I've read. I started having psych issues: Anger/rage, paranoia, obsessing. My family and close friends thought I was crazy. This started about 8 years before an official diagnosis of Young Onset Parkinson's Disease (YOPD because diagnosed under 50 years old).  

The day I started Sinemet in May 2012, I felt euphoric. The Sinemet helped all non-motor issues (listed above), as well as gait, choking, arm swing, facial masking, etc.

I have one big favor to ask here, PLEASE tell me I am not the only person where weird psych behavior preceded the motor symptoms (like gait, arm swing, etc), and by so much time.   THANK YOU.

Read More

5 PD Symptoms Nobody Talks About

 from parkinsonsdisease.net:

Most people think of Parkinson’s disease (PD) as a neurodegenerative motor disorder. When you picture someone with Parkinson’s you imagine someone with a tremor, slowness of movement and difficulty controlling movement. But in recent years more has been learned about the non-motor symptoms of PD. There are a broad range of symptoms that range from anxiety to weight management and beyond.

read more on parkinsonsdisease.net

Read More

PD Awareness Month - thank the caregivers

 PD is shitty, we all know this. What's worse is the treatment of ignored caregivers.  24/7/365 thankless job dealing with the PD psych issues, non-motor issues. The motor issues suck, but doctors have a specialty in neurology for the shaking, stiffness and freezing.  What about the nasty moods, paranoia, and other psych issues specific to what is inside our Parkinson's heads?  Anybody?

here is some stuff for caregivers, on parkinsonsdisease.net/caregiving

Read More