You're Still You (song)

You're Still You

Song by Josh Groban

This is not specific to someone with Parkinson's but the title drew me in and the song is beautiful.

Through the darkness i can see your light

And you will always shine

And I can feel your heart in mine

Your face I've memorized i idolize just you

I look up to everything you are

In my eyes you do no wrong

I've loved you for so long

And after all that's said and done

You're still you after all

You're still you you walk past me

I can feel your pain time changes everything

One truth always stays the same

You're still you after all

You're still you

I look up to everything you are

In my eyes you do no wrong

And I believe in you

Although you never asked me to

I will remember you

And what life put you through

And in this cruel and lonely world

I've found one love

You're still you after all

You're still you

Source: LyricFind

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Climb This Mountain (song)

Music is great therapy. Sometimes I share music inspired by a connection to PD.

"Climb This Mountain" is the come-back release of country singer Rob Georg, after he took a break from his career due to the Corona Pandemic and taking care of his parents, who have both been diagnosed with severe illnesses in early 2020.

Rob’s dad has been fighting against Parkinson's disease for a long time and the new track ‘Climb This Mountain’ elaborates that struggle and his Dad's process of learning how to live with it, with the support of his loving family. Just like the title suggests, there is a potent dose of optimism in the track. It turned out to be a Parkinson's Awareness song that can motivate everyone.

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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" 

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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.

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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

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Call On The Fighter (song)

"Call on the Fighter" began as a simple idea...create and offer original music to encourage and inspire "fighters" along their Parkinson's journey.

Colleen Bridges, owner, and director of Bridges for Parkinson's found the perfect fit in one of her own fighters, Rich Gootee. Rich, an award-winning singer/songwriter, knows all too well the constant and daily struggles as he was diagnosed with Parkinson's disease in 2018. Colleen's experience, research, and regular boxing classes have helped Rich and many others discover the fight within themselves to overcome the otherwise debilitating effects of Parkinson's disease. Together, Colleen, Rich, and their team have grown the music idea into an effort to help even more fighters find restoration and hope by raising funds so that nobody will ever have to be turned away from their local program.

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World Parkinson's Day and Parkinson's Awareness Month

April 11 is World Parkinson's Day and April is Parkinson's Awareness Month — a time to raise awareness and advance research toward better therapies and a cure for Parkinson's disease (PD). It's also a day to signal your commitment to a future without PD.

Rally your friends and family to make a donation to support PD groups, affordable treatments and finding a cure!

About Parkinson's Disease (PD)

The symptoms of Parkinson’s are mainly from the loss of dopamine-producing nerve cells which control movement. Low levels of dopamine affect how your body moves, making day-to-day activities such as eating, getting dressed or using everyday objects like a phone or computer difficult. The symptoms typically associated with Parkinson’s are tremor, muscle stiffness and slowness of movement, but nothing about PD is typical, everyone will have varied experiences.

Parkinson’s can cause a wide range of non-movement related symptoms including chronic pain, sleep disturbance, constipation, memory concerns, anxiety and depression; all of which can significantly impact quality of life.

Each individual diagnosis is different, a combination of symptoms and side-effects; this makes treating Parkinson’s so difficult.  We need a CURE!

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Parkinson's Hacks Help Man Walk

SCRIPPS News: Man with Parkinson's uses high tech devices to treat symptoms, continue liiving his life.

80% of Parkinson's patients suffer from a symptom called "freezing of gait." It’s when people suddenly lose the ability to take a step. 

SOURCE

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