Fighting Parkinson’s, and where it all began, part 4

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 October 1, 2009 journal entry, seven years ago today.

“10/01/09. It is October. Where has the year gone. Today, Sally suggested I reset the alarm for 4:30. Got up, felt no better, felt no worse. No worse is a plus and I look for the pluses. Took me 8 minutes to get going to turn on the espresso machine. Oatmeal for breakfast — great breakfast again. Had a good morning of work, so feeling happy. Lunch was delicious — dumpling squash filled with sauteed onions, brown rice and wild rice. Sally really takes care of me.

Just did the kidney and liver medical Qigong. After the liver Qigong, I stand straighter and feel physically exhausted but stimulated at the same time. I get a lot of tingling inside my head and my brain aches. I feel like the Parkinson’s fights me back. However, I am very patient and intend on winning.

We had Italian Wedding Soup for dinner. It was wonderful. Sally and I did the kidney and liver Qigong together. I am blessed. I do not use the word lightly. I need to do the kidney and liver Qigong to fight Parkinson’s and Sally joins me in the Qigong so I won’t be fighting by myself. She does GV acupressure on me before I go to bed. I have an absolute partner in this fight. Sally is everything to me and gives me strength to do my exercises when I have no strength or desire.

I think about Steven and Genevieve and Victoria all the time. How am I going to tell them? And Dad and Mark and Allison, after watching Mom. And Sally’s Mother and Mary and Jerry. What do I say? I do not know where to begin.”

I had a partner in Fighting Parkinson’s. I was tired in the evenings and Sally did the evening Qigong with me for about a week to encourage me. I then started doing the evening Qigong on my own. Eventually, we told our children about my Parkinson’s, and my dad and brother and sister, and Sally’s mother, and our closest friends, Mary and Jerry. I won’t lie. It was overwhelming. But it had to be accomplished.

I do not mean to be the bearer of bad news, but if you have had Parkinson’s for a while and you think you are “hiding” it, you are not correct. Here’s how the cycle works:

1. You are extremely self-conscious because you know you have Parkinson’s and you are hiding it.

2. As a result of #1, you act differently…face it, you cannot help this; hiding the disease is stressful and stress brings out terrible tremors and other symptoms.

3. People look at you as they have in the past, but now you think, “They are looking at me, they suspect something.”

4. As a result of #3, you act differently. Thinking that people suspect something is wrong with you while hiding that something is wrong with you is stressful and stress brings out terrible tremors and other symptoms.

5. Now that you are acting differently, you think you have fooled them.

6. They know something is wrong and they know that you are hiding it. You are fooling only yourself.

What are you afraid of? What are you ashamed of? As difficult as it was to tell my children and my family and friends, it was liberating…I got to be me, disease and all. And there was an outpouring of love and compassion. There is no shame in getting Parkinson’s — it is just life. Please find somebody to tell about the Parkinson’s you have. Their love and compassion will go a long way in your recovery.

If you feel you have nobody you can tell, please feel free to send me a note, howard@fightingparkinsonsdrugfree.com.

We all are in this life together and we are building an ever-growing beautiful community of friends who are fighting Parkinson’s Disease. I am inspired when I see your comments encouraging each other in this journey. So, even if you have nobody you wish to tell about your Parkinson’s and you do not wish to send me a note, please read the comments on this blog and know that you are not alone on this recovery journey.

You can do it.

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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15 Responses to Fighting Parkinson’s, and where it all began, part 4

  1. Cap says:

    Dear Howard,

    All your posts and re-posts are wonderful, as are member comments and replies, but this one is very special and duly appreciated!

  2. hans says:

    Great posts Howard. Thanx!

  3. Kjell says:

    Dear Howard
    yes definitely shame is what I feel and don’t want to show people how bad I move
    Time to change that now
    I’m worth it ❤️

  4. Howard says:

    Thank you for your comments!

    Kjell,

    Parkinson’s happened while each of us was living life the way we thought life was supposed to be lived. There is no shame, no blame, no finger-pointing, no fault, no guilt in getting Parkinson’s. If you had a broken leg, would you feel shame in people seeing you in a cast and walking with crutches? NO! You probably would think, “Okay. My leg is broken, but life goes on, and at some point my leg will mend.”

    So, for you and everybody, let’s say this together:

    “Okay. I have Parkinson’s, but life goes on, and at some point my Parkinson’s will mend.” And how do you KNOW this? Because you are doing the Recipe, and the Recipe (soul, mind, and body recovery) mends Parkinson’s.

    With gratitude, love, and blessings,
    Howard

  5. Kjell says:

    So thankfully touched Howard ❤️

  6. Tony says:

    Thank you for the post Howard! Letting people know will not weaken you, it will only empower you!!!

  7. Judy says:

    Great to hear in this post from people we don’t ordinarily hear from!
    We can do this. We are worth it!
    The method is there. All we have to do is follow it!

  8. Chuck R says:

    Great Post Howard! I recently got released from being held hostage by parkinson with some co-workers. It’s so liberating to tell people. When I tell them I’m fighting parkinsons and winning using a holistic protocol they want to hear more. As my 3 year granddaughter always says ” it’s a beautiful day”. Blessings to all !

  9. Thank you, Howard…such timely advice and a reminder for me to remember how important self-acceptance is to me. My body is a wonderful reminder for me…when I’m up in my head imagining what other people are thinking about me, my body immediately tenses making everything to do with movement painful and more difficult. When I catch myself doing this, I take a long, slow, life enhancing breath…breathing in self-acceptance…the negativity disappears, my body relaxes and I’m grateful for life again…

  10. Beth in Ca says:

    Thank you Howard for the post. It is very liberating to let people know that I am fighting Parkinson’s Disease head on. I can do it, you can do it, together we can do it. We are worth it! God Bless all, Beth

  11. Pat in Florida says:

    Dear Howard,
    After reading your fourth post from your journal, I was struck by the realization of what a storehouse of valuable information we are being given on a silver platter!
    Not only do we have the Recipe with loads of explanation, counsel and encouragement on the blog. Not only do we have personalized coaching available to us. Not only do we have the comraderie and love of our fellow warriors fighting Parkinson’s.
    But now I feel that allowing us to read your journal is like taking us behind the scenes to see, day by day, how the cure developed. Kind of like a prequel! You are letting us know what you were thinking and how you were feeling. And the huge bonus is, you are adding your commentary as well.
    Wow! So much “new” material to help those of us who are working to turn self consciousness to self esteem and self loathing to self love. Plus your honest struggle with and dedication to the physical exercises is motivating.
    This is quite an amazing journey, and I can’t thank you enough for continuing to look for ways to help us get to the finish line.
    I find myself looking forward to what you will be serving us tomorrow!
    You make me feel loved and worth it.

  12. Tom Cobb says:

    Howard, you are what the Buddhists call a bodhisattva – an awakened one who dedicates himself to helping others. All bodhisattvas rock and you Howard, rock especially hard! Rock on, my brother…

    I also so appreciate the comments. And more so all the time. This community is growing in both breadth and depth. As a caregiver for Shawna, I am not fighting Parkinson’s in my own body. But when your wife has Parkinson’s, you-the-couple have Parkinson’s. As I walk this road with her, I realize that the journey to a greater love is a universal one and that I support her road by walking my own. Penny, I loved your comment. Remembering to breathe and let go of pointless mental stress is something we all need to learn.

  13. Dawn says:

    Oh Howard it is something that you exactly read our minds. Till now I try to hide my tremors but the tremors overcome me. I will henceforth accept that I have parkinsons as you said if I have broken my leg will I hide? No. So also I will accept this disease and win over.
    Regards,
    Dawn

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