Fighting Parkinson’s, and where it all began, part 5

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 2, 2009 journal entry, seven years ago today.

“10/02/09. Got up at 4:30 again. I had noticed yesterday that the pain I have had in my left arm has replicated in my right arm. This is not good, but then again, maybe it is.

There were a couple of things different for me this morning — waking up 30 minutes later than usual and Genevieve wanted to get up at 5:15 instead of 6 — I got confused thinking about the difference, and for some reason, I felt pressed for time, which in hindsight is ridiculous.

I forgot to warm the bowls for the oatmeal for breakfast. Sally said it was no big deal. To me it was a huge deal – I learned, although I kind of already knew from other experiences, my brain is disorganized now. Still have clarity in my thoughts and reasoning, however, I cannot process too many different concepts simultaneously – something will go into a black hole never again to be thought of in my cognitive processes.

I am considering making checklists to make certain I remember all the steps when I am doing something like making breakfast. There are not a lot of steps, but if my mind gets distracted, I lose my place; sometimes when the confusion comes over me I just cry.

I cannot help it, it does not solve anything, and my tremors get worse until I can calm myself down. I also noticed that if I start to use my hands to help me explain a concept, my arms go wherever they want and my hands get spastic as well.

The rigidity has gone into my legs a lot. My forearms already look like I am a weightlifter (powerful looking, veins popped up to the surface); now my calves look like I have been training for a long-distance bike race. The stairs have become my biggest physical challenge. Everything else is pretty equal in its challenging nature.

I just finished lunch. Dumpling squash with white rice and onions. Sally really takes good care of me.

I am looking forward to the weekend. Sally is taking Genevieve and three friends to Orlando to shop for Homecoming dresses. I am so happy for Genevieve. She is very pretty and always looks beautiful when she gets dressed up. Genevieve is doing great and we are really proud of the nice young woman she has become.

We are very proud of Steven, too. He started college this year. He is a kind and compassionate young man. Even though he is 30 minutes away living in the dorm, he is doing a great job of having his college experience instead of coming home on the weekends.

I am looking forward to time with Victoria while Sally and Genevieve are in Orlando. She is a sweet, beautiful young lady, and as the third child, has to wait a lot for one-on-one time. Tomorrow we get one-on-one time for whatever she wants to do. It should be fun.

Sally and I took Victoria to her clarinet lesson this evening and then went to Taco Bus for butternut squash tostados – pure heaven. After we all got home, we watched Project Runway and wound down the evening. Nice way to end the week.”

There are a few things I would like to cover. First, when I got the pain in my right arm that had been in my left only, I certainly took notice. In the Western Medicine viewpoint, Parkinson’s starts on one side and when it is on both sides, the person is getting worse. However, the Western Medicine viewpoint is that Parkinson’s is only going to get worse, and nothing is offered to help one get better from the disease. So, if the only thing you are doing is following the Western Medicine disease management plan, then yes, when something on one side appears on both sides, chances are that you are getting worse.

But, the Recipe gets you better. Sometimes it includes feeling worse or looking worse. So, if you are doing the Recipe and something on one side appears on both sides, it is a sign of healing and that meridians are becoming more in balance. Click here for a more in-depth discussion of this point. Think about it, one hand working really well and one hand not working at all is a body clearly out of balance. The Recipe restores balance, physically, mentally, and spiritually.

Second, as I feel you have figured out, I still was in adrenaline-mind mode and feeling the need to be perfect when I wrote this journal entry. I forgot to warm the bowls for our oatmeal for breakfast. And, then what did I do, I made a mountain out of a mole hill. I related it to my unclear thinking and maybe I needed to start making lists of the steps of how to make breakfast, etc. What was this all about? Perfectionism. I made a simple mistake and I blew it out of proportion because in my mind I needed to be perfect and was not allowed to make mistakes. Eventually, I had to let this go. So do you.

Finally, over the years, people have said to me that they found it hard to believe that in the midst of physical misery and terrible physical challenges, I could maintain a positive attitude. I would imagine this journal entry looks like it was written by two different people, one guy in the physical misery of Parkinson’s, and one guy deeply in love with his family and seeing how blessed he was. Writing about these happy, joyful, and loving things in my journal was part of the mental and spiritual healing.

I feel that it is the ability to transcend the physical misery, to take yourself to a happier place mentally and spiritually, particularly when your body is in physical misery, that helps transform your life and your recovery. It brought me to the clear understanding that I am my soul, my essence, my spark that lights me up as uniquely me. I am not my body. I am not my mind. So, at the worst of physical misery and at the worst of mental self-judgment and self-criticism, I did my best to open my heart. Writing about how much I loved my family helped me do that.

The journal entry was written by one guy, me. However, as you know you are facing in your own recovery, I was struggling on the inside to accept myself as much as I was struggling on the outside to walk across the room or get a utensil with food to my mouth. Have compassion for my situation of 7 years ago…it will help you have compassion for your situation now.

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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7 Responses to Fighting Parkinson’s, and where it all began, part 5

  1. Tony says:

    Excellent post Howard! Finding the love you have for your family was stronger than the fear you had of Parkinson’s and once you found that same love and worth for yourself you were cured!!

  2. Judy says:

    Love your transparency, Howard, and the example
    You give us to follow.

  3. Cynthia (from England) says:

    Thank you Howard for these posts and for your encouragement. So so helpful reading your experiences, you are heaven sent x

  4. Hi Howard…I treasure your authenticity, your transparency and the support your posts consistently offer. You are my hero, but, having said that, you’re a very accessible one… and that helps me to chuck any attachment I may have to perfectionism and to trust your coaching and the recipe as I do.

  5. Julie says:

    Thankyou Howard,
    You are helping me realise the harm I’m doing with critical thoughts-about not walking “properly “, about how little housework I can do before exhaustion sets in, how disappointed I am that I can’t look after my beautiful granddaughter as well as I want to, and I’m constantly changing those thoughts to gratitude for what I can do and how lucky I am but sometimes tremendous patience is needed to accept, love and nurture the being I am!! Thankyou for your caring words.

  6. Veronica Urquhart says:

    Dear Howard……..thank you for sharing your humanness and vulnerability. It isn’t always easy to do this. For years I taught Yoga to the disabled and able bodied alike. I found the outward sign of physical disability was accepted by those around . What I came to obsevere was the unseen mental disabilities that folk carry a far more disabling than any physical one. One can spend every day at the Gym only to return to the world carrying all kinds of mental disfunction. And yet we think they are well. Sharing our vulnerability can be liberating. Our attitude towards this thing called Parkinson is vital to our recovery. As Howard says it is no shame that we are in this place for now. Love to all and God bless.

    Veronica🌺🌺

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