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Resources We've Found To Be Helpful

These are some items we thought might support you in navigating through your PD journey. If you have resources, let us know. We will post them here as well.

Mo + Tami

 
 

About Parkinson's Disease

So, now days, it is so easy to copy and paste from web-MD or Wikipedia that peeps don't take the time to "write"  any more. I put an APB out for personal definitions/descriptions of PD. The response was impressive... here is Rocky's take... the rest of the collected submissions will be added as a "guest blog post"... good stuff!


Good morning, everybody. It's Parkinson's Awareness month, so I thought I'd share a typical day with Parkinson's among my friends. However, as I thought about this subject, I quickly realized that there is no such thing as a "typical" day with this disease. Every day brings different challenges, which I'm forced to battle. The only choices I have are to battle on or give up and giving up is not an option, but only a death sentence.

Here are just a few things that I may or may not experience in a single day...

1. Tremors. Involuntary muscle spasms that cause parts of my body to tremble uncontrollably. There are times when I can't get a fork or spoon to my mouth, without losing all the food on them. Sometimes I have a very hard time driving, because my foot jumps up and down on the gas pedal. This symptom comes and goes, in various intensities.

2. Aches and pains. Sometimes my left hip will start aching for no apparent reason. I've had several tests run on my hip and back to find out what is causing this horrible pain, only to find out that it's being caused by bad posture, which of course is caused by poor muscle control due to Parkinson's. This is not a minor problem, but bad enough to make walking a complete nightmare at times. This pain can be excruciating and feels like sciatica.

3. Sleep pattern issues. This symptom is actually caused by other symptoms and it drives me crazy. There are some days when the disease makes me feel very weak and tired, to the point where I can no longer keep my eyes open, so I wind up taking a short nap, just so I can get moving again. So, what's the problem, you might ask. Well that night, I can't get to sleep, because I already slept during the day. I might lay there for hours, before I finally just give up and get out if bed. This begins a cycle, because now I'm tired from not enough sleep, which causes me to take a nap during that next day again. Then another sleepless night. On and on this goes, making me feel worse every day.

4. Loss of smell. As we all know, smell is a major part of taste. Foods all taste different now. Some foods that I once enjoyed, taste horrible to me today. I never know which food will taste good and which will taste bad. It just depends on how my nose is working that day.

5. Anxiety. This is a terrible symptom and can quickly lead into depression. I have no idea what I'm feeling so anxious about, when this hits me. I just feel like something isn't right and I fidget and fret about it. It makes me feel like I'm losing my mind. If it goes far enough to become depression, that can last for days or even weeks. It's a very slow arduous journey to pull oneself out of depression, and sometimes it even takes the help of a trained therapist.

6. Apathy. I'm not really sure if this is a symptom of Parkinson's, or a result of what the disease does to me. Sometimes Parkinson's becomes so overwhelming, it consumes my mind and everything else becomes completely unimportant. This is a horrible feeling, and it often leaves me feeling guilty about not caring. There are many other symptoms to this disease, from headaches to complete loss of motor functions and even dementia.

These are just a few of the things that I go through. There are still quite a few good days, so please don't think my life is all bad. I'm only trying to raise awareness to promote Parkinson's research, in hopes of finding a cure for the masses of people who are afflicted by this dreadful disease.

To those who have the power to do so, please help us find a cure. We need more researchers working on Parkinson's, before it consumes the entire globe. It's already become a pandemic. Let's end it now! And whatever you may feel from this post, please don't feel sorry for me. I'm a stronger man today than I was before I took on this battle. I stand up and fight every day, never allowing this monster to win. Those who fight the hardest battles, win the greatest glory in the end.

– Rocky Clark - Parkinson's Warrior since 2013

EDIT: To my friends... Please share this to reach as many people as possible. It's all about raising awareness, so you will help tremendously by sharing this post.

 

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people with pd

  • Steve Alten (b. 1959), American author
  • George H. W. Bush (b. 1924), 41st President of the United States
  • Billy Connolly (b. 1942) Scottish comedian, musician, presenter and actor.
  • Jeff Cook (b. 1949), American musician and guitarist, and one of the founding members of the country band Alabama.
  • Neil Diamond (b. 1941), American singer/songwriter 
  • Michael J. Fox (b. 1961), Canadian/American actor
  • Kirk Gibson (b. 1957), American baseball player and manager
  • Brian Grant (b. 1972), American basketball player
  • Walter Gretzky (b. 1938), Canadian, father of NHL legend Wayne Gretzky, author 
  • Fergus Henderson (b. 1963), English chef, owner St. John (restaurant), London
  • Johnny Isakson (b. 1944), United States Senator from Georgia
  • Jesse Jackson (b. 1941), American civil rights activist
  • Michael Kinsley (b. 1951), American journalist and commentator
  • James Levine (b. 1943), American former conductor of the Metropolitan Opera.
  • Steve Ludzik (b. 1961), former National Hockey League player & coach.
  • Joseph M. McDade (b. 1931), former Congressman from NE Pennsylvania 
  • Dave Parker (b. 1951), American baseball player
  • Brent Peterson (b. 1958), Former National Hockey League player & coach.
  • Davis Phinney (b. 1959), American cyclist
  • Freddie Roach (b. 1960), former boxer and a notable Boxing Trainer
  • Linda Ronstadt (b. 1946), Grammy award -winning singer 
  • Jerry Sloan (b. 1942), former NBA player and coach
  • Glenn Tipton (b. 1947), English guitarist for the band Judas Priest
 

6+

Common early signs of PD

  • Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may notice a back-and-forth rubbing of your thumb and forefinger, known as a pill-rolling tremor. One characteristic of Parkinson's disease is a tremor of your hand when it is relaxed (at rest).
  • Slowed movement (bradykinesia). Over time, Parkinson's disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk, or you may find it difficult to get out of a chair. Also, you may drag your feet as you try to walk, making it difficult to move.
  • Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can limit your range of motion and cause you pain.
  • Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson's disease.
  • Loss of automatic movements. In Parkinson's disease, you may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.
  • Speech changes. You may have speech problems as a result of Parkinson's disease. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
  • Writing changes. It may become hard to write, and your writing may appear small.
 
 

6+

some more numbers...From

parkinsonassociation.org

  • As many as one million Americans live with Parkinson’s disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease.
  • Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year, and this number does not reflect the thousands of cases that go undetected.
  • An estimated seven to 10 million people worldwide are living with Parkinson’s disease.
  • Incidence of Parkinson’s increases with age, but an estimated four percent of people with PD are diagnosed before the age of 50.
  • Men are one and a half times more likely to have Parkinson’s than women.

What Does Parkinson’s Cost?

  • The combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income from inability to work, is estimated to be nearly $25 billion per year in the United States alone.
  • Medication costs for an individual person with PD average $2,500 a year, and therapeutic surgery can cost up to $100,000 dollars per patient.

 

 
 

april 2017

You made it to the right place! My PD peeps, we're looking for inspiring quotes...your quote here?

Kristen B I’ve found this very inspiring for my YOPD walk...
“Today, instead of worrying about all the details and the “what-ifs”...instead of letting our problems and end goals overwhelm us...let’s prayerfully take the next step in front of us. There is so much peace to be had when we take things one step at a time.” -Lysa TerKeurst

 

Patrick P “Volunteers don't get paid because they're worthless, but because they're priceless.”

Terrie B  My Dad, “The truth will set you free.”

JDan G   Emile Zola’s "If you ask me what I came into this life to do, I will tell you: I came to live out   loud."
Jana S  “We cannot do great thingEmile Zola’s If you ask me what I came into this life to do, I will tell you: I came to live out loud.s on this earth, only small things with great LOVE” Mother Theresa

Diane R Though our circumstances may not change, our perspective can.” Unknown

Kathleen R "Optimism is a cure for many things."  Michael J Fox

John S  "Punch out Parkinson’s!"

Rebbeca W "Getting old isn't for sissies."  My Dad, he was 88 when he died. My mom is 91.

Timothy J "Without hope, there is nothing."

Email me your ideas, or leave them in the comments on a blog post.

 

 
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This is all about creating an intentional culture of positivity and personal growth. We feel this is best done by engaging and growing our community of PD Peeps and caregivers alike. We are all in this together.  We invite you to connect and share with us and our community. Leave a comment on a blog post, and sign up for our email list (below) to be invited when we launch a community forum.

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