Fighting Parkinson’s, and living your life every day

All of us begin with an obsession over symptoms. It is our symptoms (the small ones we ignored for a while, or years) that slowly made us think, “Maybe something is wrong with me.” It is our symptoms that finally bothered us enough to get us to go to a neurologist. It is a list of our symptoms that is in our medical records confirming our diagnoses. It is our symptoms that others look at when they are determining “how we are doing.” So why shouldn’t we look at our symptoms to determine how we are doing? Because we fall into living our Parkinson’s instead of living our lives.

It doesn’t have to be that way! When we look at our symptoms to determine how we are doing, our view is skewed by something in the back of our heads that says, “All the experts say this is a progressively degenerative disease, so I must be progressively degenerating.” And what do we do? We live our Parkinson’s, and we watch ourselves progressively degenerate. I know I did, in the beginning, that is.

I kept a daily Parkinson’s journal. Periodically on this blog, I have provided excerpts from the daily journal. Consistently, I wrote about my symptoms and how each day I was learning that I no longer could do something I used to be able to do. After a few months of this, my handwriting was so painful and so illegible that I stopped writing. Looking back, that was a good thing because it caused me to stop looking, in great detail, at how I was physically deteriorating, and it got me thinking about more important things, like how much I loved Sally and the children. And, my motivation to ignore my daily external deterioration and focus on my internal healing became stronger.

Here is an excerpt from something I wrote eight months after I had started my Parkinson’s Recipe for Recovery™:

“I have rigidity in my arms, legs, and upper back into my shoulders. Last week, a friend asked me to explain my rigidity so he could get a better sense of what I am experiencing.

1. My arms — the next time you sit down to eat, pick up some food with your utensil, and while holding your utensil just above the plate or bowl, flex and tighten every muscle in your arm from your shoulder to the grip on the utensil. While maintaining this, try to get the utensil with the food to your mouth. My arms are tight like this all the time.

2. My legs — stand as straight as you can and then put a little bend in your knees. Next, flex your calves and thighs. Now, try to walk. Or do this in front of the stairs and see if you can walk up the stairs without holding on. When you add the symptom of very poor balance to the formula, you can see why leaning forward when walking and holding on when going up the stairs are commonplace among those fighting Parkinson’s. My legs are tight like this all the time.

3. My upper back — it is tight and hurts all the time. I really do not have a good example for you to emulate.

Having a positive attitude is the key to everything. My mind and body have accepted the pain, so I am not consumed by it every waking moment. Deciding every day that Fighting Parkinson’s drug free is a fight worth fighting is what keeps me going. Quite frankly, getting to spend time with Sally and the children to celebrate Mother’s Day yesterday is really what keeps me going.”

Faith brought me to the realization that I needed to live my life instead of living my Parkinson’s. Whether I liked it or not, Parkinson’s was part of my life. Every day, I did my Recipe because I knew it was what I needed to do so that some day, on some far-off-unknown-date, Parkinson’s would no longer be part my life. It let me say, “Okay, Parkinson’s, I accept that you are part of my life for now. However, I refuse to be consumed by you because there are so many more wonderful things than you to experience in my life. I am choosing to live my life and I am choosing to not live my Parkinson’s.”

Often, I have mentioned that I got a lot worse before I ultimately got better. If you look at what were some of my physical symptoms as quoted above, you might find it hard to believe that I was close to a full recovery…but I was…I just didn’t know it at the time. That excerpt is from my blog post of May 10, 2010, one month prior to my full recovery from Parkinson’s. It is representative of how faith slays fear.

And with faith, we can live our lives instead of living our Parkinson’s. No matter how angry or frustrated or worried or fearful of our symptoms we become, the anger and frustration and worry and fear do not make our symptoms go away. We do. We get on our path to recovery, and we have faith in our path and faith in ourselves, and we choose to live our lives knowing that we are healing ourselves from within…our souls, and our minds, and our bodies.

What about our symptoms? They are just something we have to accept we will have for a while. Something that will be part of our lives for now. Something to remind us to stay on our path so our internal healing can take place. Something that will go away once we are fully healed. That’s all they are. Do not live your symptoms! You are so much more than your symptoms.

Parkinson’s itself is a symptom of your life out of balance. Do not live your Parkinson’s! You are so much more than your Parkinson’s.

Life is so much more than symptoms.
Life is so much more than Parkinson’s.

LIVE YOUR LIFE EVERY DAY!

You are worth it!!!

All my best,

Howard

 

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13 Responses to Fighting Parkinson’s, and living your life every day

  1. Rick Deno says:

    Thank you Howard!
    You are always so insightful and your timing is always so perfect. It’s like you read our minds!

    Rick

  2. Bev says:

    No words available to describe the power of your message today. Just “Wow!”

    Thank you!!

  3. Candice says:

    Thanks for message.

  4. Barry says:

    Mind blowing, Howard, just mind blowing. You could send umpteen million blogs with this message, and I would still look forward to more.

  5. Dear Howard…. your message really hit my alive button….. as in, “wake up and live”…. I so celebrate the community you inspire with these messages too…. I realize how much I benefit from your experience and those of others…. my journey no longer a lonely and fearful one, but one that is as much in the present as I can be and enjoying the company of everyone on this path of learning, growing and celebrating life. Being human, I often stray (I attend to such moments as best I can with tenderness and compassion) but, consistently, your reminders help me stay the course ….thank you!

  6. judy says:

    Howard….I just found your website and the Recovery Recipe a cpl days ago…
    very encouraging, just what I need right now. Finding you and all of these other folks makes me feel not isolated, gives me so much hope. And, I love the fact that it’s all so very do-able, and no cash out-lay! I’ve heard Parkinson’s referred to as an “adventure”, and I think I’m starting to get it…..thanx…

  7. Jane Lindsay says:

    Dear Howard,

    Your words are a Guiding Light in my life. Every time I read one of your posts it reinforces my certainty that these symptoms are indeed temporary. Every time anyone talks to me about a symptom I think of you and say with certainty that this is something that, contrary to general opinion, one can absolutely and fully recover from.

    A thousand thanks for shining so bright, I feel very blessed that you have the extraordinary kindness to share and post and bring so much light to my (and everyone else’s) life.

    Jane

  8. Thank you Howard for this wonderful message.
    B & K

  9. Dana Hodgkins says:

    Thank you, Howard, for a very powerful message.

    I have a nasty tremor that is a constant distraction and reminder. I am getting better at ignoring it while I live my life, and sometimes… I get a glimpse of recovery when I realize that it has stopped usually whilst meditating, doing your recipe, walking, gazing out at a beautiful sunset, … being heartful. Focus on our lives… perfect!

    Dana

  10. luke michal says:

    amen, Howard, AMEN……ALWAYS the right words for me at EXACTLY the right time!!!
    Thank you

  11. Howard says:

    Thank you all for your comments and for sharing your journeys with all of us. Judy and Dana, welcome to the blog. We are happy you are here with us!

    With gratitude and blessings,
    Howard

  12. Kay Disbrow says:

    Today, after reading this yesterday, I FELT the difference between “having the disease” and “the disease having me.” I can choose now which feeling I want to experience.

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