Fighting Parkinson’s, and where it all began, part 47

Seven years ago, I began doing the Parkinson’s Recipe for Recovery®. Of course, back then it did not have a name…it was just what I was doing. At the same time, I began keeping a hand-written Parkinson’s Daily Journal. It is time to share my journal with all of you. Here is my November 13, 2009 journal entry, seven years ago today.

“11/13/09. Up at 4. COLD! Moving very slowly. Got to the kitchen at 4:10. Legs are very tight. I am starting to learn better how much extra energy it takes to get around.

Generally, when I am walking, I do not sense that I am having to exert myself any more than I ever had to exert myself to walk before Parkinson’s. However, today is in the mid-50’s and when I got back inside from getting the newspapers, I was out of breath and the tremors were raging throughout my body, particularly in my calves and thighs.

I am still quite puzzled how they can be raging like that and you cannot see any unusual shaking in my outward appearance.”

I remember it being very difficult to explain to people what was an internal tremor. For those of you with an external tremor and no internal tremor, imagine if all of that shaking was contained inside your body and you just shook and shook all day long, particular worsened when sitting, standing or lying still. That was the experience.

It it one of the reasons why when people would ask me if I had hurt my back because I was hunched forward and obviously in pain as they saw me shuffling, and I would say, “No, I have Parkinson’s Disease,” their response would be something to the effect of, “You can’t have Parkinson’s Disease, you are not shaking like Michael J. Fox.” I then would say, “Yes, I am shaking but it all is on the inside, and his uncontrolled shaking is called dyskinesia and is caused by his medications, and I am not taking those medications.” Most people told me I was wrong and rolled their eyes. Those encounters taught me compassion.

I learned that I had nothing to prove to anybody, and if somebody’s response to me having Parkinson’s was “You can’t have Parkinson’s Disease, you are not shaking like Michael J. Fox” why should that bother me? It shouldn’t! Who cares what they think? It taught me that whatever was coming out of somebody’s mouth was about them and their level of understanding and their level of suffering…IT HAD NOTHING TO DO WITH ME!!!

So, instead of being angry and frustrated over what these people said (judgmental mind), I learned to have compassion for their suffering (compassionate heart). Judgmental mind fuels adrenaline. Compassionate heart fuels dopamine.

It is very important to KNOW that your truth and authenticity, what you know to be true and genuine for yourself, are more important and trustworthy than anybody else’s opinions about you. You are the one living inside a physical body with Parkinson’s, thinking with a Parkinson’s mind, and feeling with a heart and soul covered by the toxicity of the Parkinson’s. That makes you the expert in your Parkinson’s…you know it better than anybody!

Be compassionate to yourself and trust yourself in your heart and soul, filled with hope and faith in your life and in your recovery. You can do this.

You are worth it!!!

All my best,

Howard

Please note: I will be posting one post per day through the middle of November. If you subscribe to receive email notifications when I post new blog posts and you would prefer to not receive those daily email notifications, simply send me an email at howard@fightingparkinsonsdrugfree.com, and let me know that you do not wish to receive a daily email with a link to each post. I will remove you from the list through the middle of November and add you back on the list after the middle of November. However, I still would recommend you checking the blog on a regular basis as it will contain very useful information for understanding my journey and helping with your journey.

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6 Responses to Fighting Parkinson’s, and where it all began, part 47

  1. Karen in Ireland says:

    Hi Howard & Warriors, just catching up on this weeks posts. Sorry I missed Marie’s 5th Anniversary! Marie you are one of my favourite warriors as you are so real and honest. So happy for you. You ROCK!
    Big love to all.
    Karen xx

  2. Rebecca in New Zealand says:

    Well just reporting that last night at midnight a 7.5 earthquake struck the country, 2 minutes of pure terror, afterwards the tremors took over my entire body and I shook uncrontrollably for an hour or more. Especially scary was the power suddenly being cut, so total darkness. This was by far the strongest earthquake I have ever experienced and living alone is not for the faint hearted. But today despite aftershocks every 20 mins or so, things dont seem so bad.
    The battle goes on. I just wasn’t expecting to have to battle PD plus earthquakes.
    Love to all

    • Cap says:

      We’ve experienced earthquakes here in California too, and it is no fun for sure! 7.5 is a big one! We’re glad you are okay, and hope as well for everyone else there.

  3. Dr. Karen Zilverberg says:

    Thanks, Howard!

    This is an extremely meaningful post. Every post opens our eyes to one more thing.

    Rebecca, you verbalized it so eloquently on how we already have our challenges and then life has the utter audacity to throw more into the mix for us to manage. I am so happy that you are safe from the earthquake.

    Peace and love to all,

    Karen and Don

  4. Cap says:

    Thanks Howard! I had wondered about your mentioning “internal tremors,” and very much appreciate your explanation.

  5. Melanie S says:

    What a wonderful helpful post. You are not only a parkinsons coach Howard but an amazingly talented life coach.
    Hope you’re doing better karen.
    And Rebecca you sound like you’re doing acceptance really well! Phew I hope you don’t have to suffer any more nasty shocks like that. Xx

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