Michael J. Fox Looks Past Stem Cells in Search For Parkinson's Cure

Routine Colonoscopy Could Predict Parkinson's  

Vitamin K2 May Help Treat Parkinson's

Dopamine, Addiction, and PD

If you are thinking about writing about your life with PD, go for it! The process may be cathartic for you and others who read it online or elsewhere. You might consider contributing to Share Your Story, described at the end of this post.

Coming Out

These two articles (links below) were first published in the Wall Street Journal and Forbes Magazine. The author, Bret Parker, sent them to us. Here are some excerpts:

Someone who is 43 years old shouldn’t have Parkinson’s. Someone who has young children couldn’t have Parkinson’s. For a long time, silence seemed logical. As long as my Parkinson’s was not impacting my day-to-day functioning, no one had to know. When I was first diagnosed, my symptoms were almost impossible to detect and there wasn’t   for my family or friends “to do” so I figured it wasn’t worth telling people. I certainly didn’t want to worry anyone, especially my two young sons. And even though Young Onset Parkinson’s usually progresses slowly and it could be years before I am significantly affected, I didn’t want this impacting my career. I’m not so disabled that I can’t work – I certainly don’t want people to make decisions about me with some misplaced stigma.

So even though I shouldn’t be ashamed or embarrassed about something I didn’t choose, I’ve kept this to myself for years. Yet, my secret slowly ate away at me. As my Parkinson’s progressed, one small noticeable symptom after the next, what began as a secret felt like it was becoming a lie.

 As I contemplated how I would finally reveal my condition, I realized that my secrecy was not protecting me at all. Rather, it was my way of denying that I have this chronic disease and controlling the one thing I could control – how many people know I have Parkinson’s.

http://www.forbes.com/sites/randalllane/2012/03/12/the-last-workplace-secret/

http://online.wsj.com/article/SB10001424052702304723304577368260408723038.html

Life  Report

The NYT columnist David Brooks has asked readers over 70 to submit essays to his “Life Report” blog evaluating their lives. One of the most frequently read posts in the popular collection is the story of Charkes Snelling and wife, Adrienne, who developed Alzheimer’s disease. Writing about caring for Adriene, Snelling says:  “It’s not noble, it’s not sacrificial and it’s not painful. It’s just right in the scheme of things.”

Take a deep breath. Here is what comes next. Mr. Snelling killed his wife and himself a few months after he wrote these devoted words. Brooks wrote an op-ed piece about the murder-suicide that is thought-provoking. His readers had equally poignant things to say:

• I found Snelling's account heartbreaking and deeply moving. I sensed his devoted love in every word. Reading it with the knowledge that he had made that dreadful decision only gave it more resonance. I came out of it with one overriding thought: I hope I can love and be loved like that in my life. The rest is headlines.
•  We only learn our limits when we are forced to go beyond them. While I might not agree with Mr. Snelling's decision, I certainly understand. And sympathize.

The Life Report: http://brooks.blogs.nytimes.com/2011/12/01/the-life-report-regina-titus

Share Your Story

Everyone's experience of living with Parkinson's is unique. The Parkinson’s Disease foundation offers a program called  Share Your Story where people living with Parkinson's write about the challenges and joys of living with the disease. Titles of recent stories include:  Jewish Theology of Parkinson's Disease, “Attitude.” and “The Shadow.” Three guesses what the shadow is! To read other’s stories or tell your own: http://www.pdf.org/en/personal_stories

Betsy

A Leader in Parkinson's Research

Scientists Identify Brain Circuitry Associated with Addictive, Depressive Behaviors

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My words here will be brief because the Unity Walk video tells the story, not in words, but in images that convey the spirit, hope, support, energy and commitment of the Parkinson’s community to find a cure for this disease.  The lines of people stretched back as far as the eye could see, and they kept on coming, and coming.  The unity of purpose was palpable. 

Take a moment to watch this short video.  It will touch you deeply with the overwhelming support from so many; it will warm your heart with the smiles of families encouraging the good fight; it will inspire you to be active and do what you can; it will comfort you in the knowledge that so many people are uniting on your behalf.

I’ve bookmarked the link, so when I feel the need, I can draw strength from the smiles, energy and vibrant sense of community that stand behind all of us with Parkinson’s disease.

Diane

  Diane with Davis Phinney Foundation Executive Director Polly Dawkins

New Peptide Therapy Stops Parkinson’s in Mice

Take More Risks and Prevent PD?

Promising Results for Gel to Treat Advanced Parkinson's

18th Annual Parkinson's Unity Walk Raises More Than $1.5 Million

No one benefits more from being part of recentlydiagnosedwithpd than the writers! Here are two recent examples of how blogging about living with Parkinson’s disease has resulted in creative adaptations to the condition, greatly contributing to our ability to get exercise and to our quality of life .

After the last meeting of our Denver support group a friend came up to thank me for the tip I wrote about in Follow the Leader, my post of February 12th. “What tip?” I asked. I had written that sometimes I have to rely on external cues to initiate and keep up movements, and that my favorite cue is my husband. Walking behind him helps me keep a reasonable pace. I was sharing my experience and wasn’t really thinking in terms of tips.

My friend, however, remembered the post at a key time and put its message into action. She was on a long hike with her husband, and was leading the way as usual so she could set the pace. But on this hike her pace was agonizingly slow. Her Parkinson’s symptoms were keeping her from developing momentum. My friend and her husband were both saddened by the effect her PD was having on one of their favorite activities.

Then my friend remembered my post and suggested that her husband go first and she would try to follow! Bingo! They surged up the mountain and sadness turned into joy that they had found a solution to this weird symptom some of us have of “stalling out.” They would not have to give up their hikes together.

The second example is an extension of Diane’s post of April 17, 2012. The one action we all know we can take to tame our PD symptoms is to exercise vigorously and frequently. The problems is that the only way PWPs can accomplish a high level of vigorous exertion is through forced exercise, in which an external force makes us go much faster than we can on our own. But presently there are only two options for getting forced exercise: spend $5000 for a  machine such as a theracycle or rope someone in to riding a tandem bicycle with us.

Well, Diane came up with a great solution. She has taken up rowing with a trainer who pushes her hard. The trainer rows next to her, paces her and cheers her on. She reports that for the first time in her life she is doing the maximum she is capable of doing.

After learning about Diane’s approach I emailed the head of fitness for Denver Parks and Recreation. The agency manages a rec. center a block away from my house, which would be a great place for me to hire a trainer and row. In my email I explained that I want to set up a Parkinson-specific training program in which I could follow a trainer through a routine, hopefully including a half hour of rowing.

I didn’t expect much of a response, because the agency is known for it’s not-my-job mentality. But the email back from the fitness manager was a pleasant surprise: “Regarding your request , I appreciate you sharing this need for individuals with Parkinson’s to “follow” or “mimic” a trainer. That is very  interesting and is something I feel I can work to achieve for you!”

And she did, next week I start what I am calling enforced exercise two or three times a week with a professional rower/trainer.  I’ll let you know how it goes!

Betsy

Parkinson's Protein Causes Disease Spread in Animal Model, Suggesting Way Disorder Progresses Over Time in Humans

Andrew von Eschenbach: Toward a 21st-Century FDA

We have a disease in which no one knows for sure how to slow the progression. Yet, that’s what’s on all of our minds.  Yes, it is important for us to have treatment to ameliorate our symptoms because that will help us live as best we can day to day.  But, in the end, we’re hoping to preserve as many of our neurons as we can so when that scientific breakthrough occurs, we can take advantage of it.

So what does that mean?  I’ve been struggling a lot with that question recently.  Mainly because we’re shooting in the dark.  What it comes down to for me personally is that I will try to be as up to date as possible on information about Parkinson’s disease so that I can make an informed decision about what to do to keep my PD in check.

For example, supplements.  I’ve done quite a bit of research here and probably take more than I need to.  I’ve also had a blood analysis done and sought professional input regarding providing my body special nutritional support where it needs it.  Now, all I need to do is take my pills!

And then there’s exercise. I had drifted into a steady rhythm of treadmill 3-4 times a week plus lots of other classes and activities. But I had the sense I wasn’t really pushing myself and therefore I was doing … too little. So, I sought out a different mode, rowing, and a trainer who agreed to push me.  She rowed next to me, paced me and cheered me on. In fact, for the first time in my life,  I reached what felt like the maximum I was capable of doing . But, that high level of effort wiped me out for the rest of the day.  Was I now doing … too much?  Or, was that what I should be aiming for to save my neurons?

That’s what I mean by shooting in the dark.  Unfortunately, we don’t know.  It’s not as easy as preparing to win a race.  Then, you know within a reasonable period of time whether you won or not.  In our case, in terms of accurate measurement, it is very difficult to know if what we are doing is having an impact.

So, do we hit the gas pedal and try to stress to the max with our workouts? Or, do we go on at a reasonable pace and end up doing … too little?

Each one of us is going to have to answer that for ourselves  We’re operating here without clear guidelines.  But, in the end, I guess life itself doesn’t always have clear guidelines.

Let us know what you think.  What are you doing?  What insights would you like to share with others?

Diane

Breakthrough: UK Parkinson's treatment reverses symptoms for some

New brain scan helps confirm PD diagnosis.

Newer antidepressants help people with Parkinson's disease without aggravating other  symptoms .

Eye tremors may be early indicator of Parkinson's.

Annual 'Parkinson's Unity Walk' will be held April 28.

Aanalysis: The State of the Science of Parkinson’s Research

FDA approves Neupro for idiopathic Parkinson's.

Flavonoid-rich foods reduce Parkinson's risk.

Thinking out loud: One PWP’s tremor is another PWP’s nightmare. Or that’s what it seems like to me. I am amazed at how different we are in the way we handle our symptoms. I have friends with PD who do not take medication, and have a fair amount of tremor in their hands and legs, which never seems to bother them. They are highly tolerant of their symptoms.

On the other hand I am highly intolerant of the tremors, slowness and other symptoms of PD. I take medication, which means I am pretty much tremble free most of the time. But if I feel myself getting shaky I rush to my bottle of helpful little agonists.  (I also change the position of whatever body part is trembling or move around as fast and big as I can because action often stops a PD-type tremor.)

Food for Thought: My conclusion about the differences in the way we experience and cope with our PD symptoms is that our tolerance—or lack of tolerance—can determine how much and what type of medication we take. For example, maybe I should be more tolerant of my tremor and other symptoms and take less medication, which does tend to make me a bit compulsive.

From NIH:  Here’s some great information from NIH on what doctors look for when diagnosing PD and  tremors.  It you are recently diagnosed these questions may be fresh in your mind, as they are standard fare for neuorologists who are evaluating a patient with tremors for the first time.

When to Contact a Medical Professional

What to Expect at Your Office Visit

• Your doctor will perform a physical examination, including a detailed brain and nervous system (neurologic) examination.

The following medical history questions will help your doctor evaluate whether PD is the cause of your tremors:

• Is your tremor regular or irregular?
• Does it occur with activity, at rest, or when you have been holding your hand (or other body part) in a particular position for a long time?
• Are the movements small (fine) or large (coarse)?
• Is the movement fast or slow?
• Are both hands affected? To the same degree on both sides?
• Are other body parts affected, including your voice or head?
• Does the tremor impair your ability to use your hands or other body parts?
• Does emotional stress or excitement make it worse?
• Does drinking an alcoholic beverage make the tremor better or worse?
• Do you have any other symptoms?

Your doctor may order the following tests:

• Blood tests such as CBC, blood differential, thyroid function Blood tests such as CBC, blood differential, thyroid function tests, and glucose test
• EMG or nerve conduction studies
• Head CT scan
• MRI of the head
• Urine tests

Note: We have not heard from any of our readers about their experiences with "freezing" and how to stop it. We'd love to hear from you!

Betsy