PD 101

I heard the words, “You have Parkinson’s Disease” almost five years ago. Luckily I don’t suffer with tremors, I mainly struggle with mobility of the right side of my body. Recently some cognitive challenges have popped up, which is actually very common. Monday was check up day at The Parkinson’s Institute, an amazing facility located in Sunnyvale.

The past few months I’ve had an increase in foot clawing, depression, and some driving challenges. Unfortunately all of these are common symptoms of the disease.

Another troublesome symptom of Parkinson’s is mild cognitive impairment. Many people with Parkinson’s are surprised to find that they feel distracted or disorganized, or have difficulty planning and carrying through tasks. It may be harder to focus in situations that divide their attention, like a group conversation. When facing a task or situation on their own, a person with PD may feel overwhelmed by having to make choices. They may also have difficulty remembering information, or have trouble finding the right words when speaking. For some people these changes are merely annoying, for others they interfere with work or with managing household affairs.

To some degree, cognitive impairment affects most people with Parkinson’s. The same brain changes that lead to motor symptoms can also result in slowness in memory and thinking. Stress, medication, and depression can also contribute to these changes. Unfortunately I’m now beginning to experience some of the above symptoms.

During my visit, I was given the opportunity to participate in a 6 month clinical study. This new drug is not curative, but seems to really help with symptoms. Being part of a clinical study is a great way to help make a difference in the fight against PD.

Most people know very little about Parkinson’s Disease. Here are some interesting facts:

1) Smokers and coffee drinkers are less likely to get PD. I don’t partake in either.

2) Most people are diagnosed with PD after 80% of their dopamine producing cells are already dead. Symptoms begin to appear at that point.

3) Up to 50% of PD patients suffer from fatigue.

4) By the time you’re diagnosed, you’ve probably had the disease for 10+ years and didn’t even know it.

5) A common early symptom of PD is a loss in smell.

6) Some 90 percent of people with PD experience changes in their speech. They tend to speak softly, even though to them it feels as if they are speaking at a normal volume.

7) Most people with Parkinson’s find it difficult to sleep through the night. Rigid muscles, tremors, stiffness, or not being able to roll over in bed can all interfere with sleep.

8) Japan is the only country in the world where there are definitely more women than men with Parkinson’s Disease. In Japan, the women with Parkinson’s Disease far outnumber the men.

9) James Parkinson, who Parkinson’s Disease was named after, never knew that Parkinson’s Disease was called Parkinson’s Disease.

10) PD symptoms continue and worsen over time. Nearly one million people in the US are living with Parkinson’s Disease.

11) 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.

To learn more about Parkinson’s Disease go to the Parkinson’s Disease Foundation.

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7 Responses to PD 101

  1. rastaphoto says:

    Perfect love I wish for you that struggles and who has so much love woven into your art

  2. Jill says:

    Aloha, my dear friend,
    another night awake
    thought i’d check up on u
    consider drinking coffee,
    caffiene or coffee may be neuro protective,
    a lot of research supports that
    ugh, consider it medicine and just chug 1/2 cup in morning lukewarm.
    it’s making a difference here
    love and hugs to you

  3. Maggie says:

    Thanks for the extra information!
    I think it’s really brave you are participating in a clinical trial, and who knows? Maybe it will lead to cure sooner rather than later. I really admire you for sharing your story with others on this blog and think you inspire so many people who are going through struggles. Can’t wait to hear how the trial goes.
    ❤ Maggie

  4. Lauren says:

    Hugs, my dear friend.

    Just remember to stop, focus on what you love, and do that.

    Love, L

  5. ingridgans says:

    Thanks for a wonderfully informative post. I read every word you write. Big love.

  6. Shery says:

    Cindy, my dear friend! You are a dragon tamer! You are valiant! Your are elegant! You wear your armor with dignity and most often humor and delight! Every once in awhile you let your guard down and we see a peak of your reality. Your are a brave warrior and you have been given this fight because you WILL help tame this Parkinson’s beast! HUGS, Shery

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