Fighting Parkinson’s, and where it all began, part 40

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 6, 2009 journal entry, seven years ago today.

“11/06/09. Up at 4. Still slow, not surprised. Yesterday continued: Had my appointment with Dr. Sanchez-Ramos. Kate, who turns out to be his wife, writes for their newsletter, and she was in there and took notes.

Yes, I received my official diagnosis of Parkinson’s Disease…no big surprise there. Also, the appointment went better than expected. I explained to Dr. Sanchez-Ramos what I had been doing and he did not put pressure on me to take medications.

After the appointment, I talked to Dad, Mother, Allison, and Mark. Of course, Sally and the children, but that’s a given. I explained to them [my father, Sally’s mother, my sister, and my brother] that I am an open book, will answer all questions, and we all can take it from there.

Also, now that I officially have a diagnosis from a Parkinson’s specialist, when I beat this and become symptom free, maybe the information will be able to help others. What a useful purpose I will have served.”

At my neurologist visit, Dr. Sanchez-Ramos put me through 30-45 minutes of physical tests. Three in particular stick out in my mind: 1. a repetitive motion test where repetitive motion of one hand tapping on my thigh cause my other shoulder to become stiff and then my other arm to fly around uncontrollably; 2. a “follow the pen with your eyes” test where he told me he could detect cogwheel rigidity in my eyes; and 3. after the walk and turn test in the hallway, he told me to wait there for a moment as he needed to get something — he then went behind me and grabbed my shoulder and shook it and let go — I fell backwards and he and the assistant had to catch me.

In the end, he wrote me two prescriptions, Azilect and Amantadine. I never filled them. In fact, here they are for you to see (if you click the picture, it will enlarge):

pd-medication-prescriptions

He told me that everybody who had Parkinson’s needed to be on medications. I told him that I was not going to be taking these medications as previously explained in our meeting. As a result, he scheduled me to come back in three months instead of six months. As I was leaving, he called my name as I reached the door and I turned around. He came over to me, looked me straight in the eyes and said that I would fall because my balance was so poor, so he highly recommended I at least fill the Amantadine prescription because “when you fall, you will want to have that at home ready to take.”

Fortunately for me that day on this one point, I was still in my stubborn, adrenaline-driven, perfectionist mode, and oh yes, did I mention angry…I thought, “I refuse to fall”…and, after that day, I NEVER fell.

And you do not have to fall, either. You do not have to do anything that anybody tells you will happen with your Parkinson’s. Each one of you is a beautiful, loving, compassionate soul. You are not a bunch of Parkinson’s symptoms that somebody else can control your life by saying “oh, now that you have Parkinson’s, all of these terrible things will occur.”

Healthy acceptance: Accept that you have Parkinson’s.
Healthy Denial: Deny that you cannot get better.
Healthy life: What you decide your life will be in-between “You have Parkinson’s” and “You don’t have Parkinson’s anymore.” It is your life — LIVE IT TO THE FULLEST!

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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11 Responses to Fighting Parkinson’s, and where it all began, part 40

  1. judy pruitt says:

    Thanx, Howard, for telling me that i don’t have to do anything that anybody tells me will happen with my Parkinson’s. That gives me courage.

  2. Eleanor C. {Scotland} says:

    Every day you add another brilliant insight into the mind of a warrior and every day you give hope and inspiration to my husband and I.
    Much love to you and all your warriors

  3. Thanks for this dear Howard…your strength and resolve shines throughout this post, providing such clear direction and inspiration…I am so very blessed to have you and this sweet community in my life.

  4. Tony says:

    you’re right you have to live life to the fullest my childhood friend Ralph who lives in Florida I live in New York has been wanting to see me for the past year and when he’s up in New York on business he always would call me and wanted to get together I kept refusing because I was not comfortable with myself how I look how I felt well this morning I realized that my friend Ralph is on life support from a massive stroke and now I may never see him again don’t turn your friends away don’t turn your family away turn Parkinson’s away live your life like everyday may be your last because whether you have Parkinsons or not it could be

    • Christine says:

      So sorry to hear about your friend Tony.Thank you for the reminder to live our lives.

    • Susana L says:

      What an astute commentary Tony! Truly makes you realize how lucky you are to have your own breath. Sending love and light, Susana

  5. Susana L says:

    Dear Howard, thank you for this post. Your resolve is so inspirational. Especially when you say you cannot allow anyone else control how your life is going to be. We can all stand tall and erect. I will tell myself never to fall again. Literally and figuratively. Love to you, Susana

  6. Dr. Karen Zilverberg says:

    Thanks, Howard!

    The strength for another day is deeply appreciated!

    Love to all,
    Karen and Don

  7. Cap says:

    Thank you for the re-post and commentary, Howard. And, not having seen your two prescription copies previously, I particularly appreciate seeing those. I salute you for refusing to take the med’s. We agree!

  8. Shawna Carol says:

    Dear Howard,

    I was diagnosed in 2002 with Parkinson’s by a doctor on the faculty of Harvard Medical School. He also told me about the medications he was about to prescribe for me. At which point, I told him I’d get back to him on that. And I walked out of the appointment without the prescription. Thank you for showing this path to recovery without drugs.

  9. Barbara says:

    HI everyone
    I recently fell … Again. It is still so painful.
    I propose in my heart to never fall again!
    I am still hoping that I will be able to stop my meds – which causes me to fall in the first place!
    Thank you Howard – for sharing your journey with us.
    Blessings to all
    Barbara

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